Politics is on fire right now. Every day brings another argument about rights, power, limits, emergencies, and who gets the final say. People who have not thought about civics since eighth grade are suddenly constitutional scholars with strong opinions and unlimited access to Facebook and your spam box.

NOTE: This is not a red article or a blue article. It is a zebra-striped one.

Because underneath all the yelling is one old-school lesson most of us understand: a constitution states what matters before the crisis begins. It names what will be protected, who gets authority, and which principles still apply when everyone is under pressure.

A country has one so it does not have to reinvent itself during every emergency.

Maybe people with complicated bodies need one too.

When Everything Feels Like an Emergency

Chronic illness can feel like living under emergency rule.

A new symptom appears. A doctor recommends a procedure. A test result drops into the portal at 4:57 on Friday afternoon, because apparently laboratory suspense is now a healthcare benefit. A family event lands on the calendar during a flare. Someone needs something from you. You wonder whether to push, rest, cancel, investigate, wait, make the appointment, get another opinion, or crawl under twelve blankets until Congress adjourns.

Every decision seems to carry consequences. Every choice spends energy. And there is never a shortage of people and institutions eager to tell you what a “good” patient, partner, parent, employee, or disabled person should do.

The medical system says to be compliant, but not passive. Informed, but not a know-it-all. Persistent, but not anxious. Brief, while somehow explaining twelve years of medical complexity during the seven minutes remaining after medication reconciliation.

Insurance companies have firm opinions about what your body needs, despite never having met it. Productivity culture thinks rest must be earned. Family may want you available, agreeable, and conveniently symptomatic only when nobody needs anything.

Fear has rules too.

Fear says you need one more diagnosis before you can relax. Medical trauma says you must prove everything. The internet says your future may depend on a supplement currently available for 20 percent off with an influencer’s code.

When you have spent years being dismissed, chasing answers can begin as self-preservation. You learn the language, find the experts, organize the records, and keep searching because nobody else appears to be taking the problem seriously enough. That search may be necessary. It may even save your function or your life.

But sometimes, almost without noticing, the search for health becomes the government of your entire existence.

You start postponing life until you feel better, know more, find the right doctor, receive the final diagnosis, or solve the next mechanical mystery. Health began as the thing you wanted so you could live. Now managing health has consumed the life you were trying to save.

That is the moment a personal constitution may help.

If You Do Not Write the Rules, Someone Else Will

I recently came across an article by disability attorney Ben Glass called “Write Your Own Constitution.” His idea was simple: write down a handful of principles that govern your life so you do not have to keep making the same decisions from scratch.

Not goals. Not resolutions. Not a vision board populated by suspiciously well-rested women doing yoga at sunrise.

Guiding principles.

Without them, we often live by rules we never consciously chose:

I must keep searching until I am certain.

I must make other people understand before I can trust myself.

I must use all available energy being productive.

I must appear reasonable before I am allowed to have needs.

I can begin living after I finally fix my body.

Those are governing principles too. They were simply written by fear, dismissal, family expectations, illness culture, and a medical system with the bedside manner of a parking ticket.

A personal constitution lets you ask a different question:

What kind of life am I actually trying to protect?

That may be the most important question underneath almost every difficult decision.

When you consider surgery, you are not only deciding whether to have surgery. You are deciding what function, safety, independence, relief, or future possibility you are trying to protect.

When you decline an invitation, you are not simply choosing your couch over another person. You may be protecting enough capacity to work, care for yourself, keep another promise, or enjoy tomorrow.

When you stop pursuing every possible diagnosis, you are not necessarily giving up. You may be protecting your peace, money, nervous system, and the parts of you that have been waiting outside the examination room.

When you pursue another opinion, you are not necessarily trapped in illness identity. You may be protecting your future because something important has not been adequately addressed.

The same choice can come from fear or wisdom. The difference is often found in what you are trying to protect.

Write the Preamble First

You do not need parchment, a leather journal, or a powdered wig. You need one honest sentence.

Ask yourself:

If my health remained imperfect, what would still make my life feel like mine?

Maybe the answer is connection, peace, purpose, creativity, freedom, family, advocacy, laughter, spiritual life, time outside, or the ability to notice something besides symptoms.

Now complete this sentence:

I am protecting a life with more __________, __________, and __________. My health deserves care, but it is not the only thing I care about.

That is your preamble.

Mine might include connection, meaning, and peace. Yours may include adventure, independence, and enough energy to be delightfully inappropriate with your favorite people. There is no morally superior answer.

Choose words that make something inside you exhale.

Choose Three Governing Principles

Now write three principles that help protect that life. If your brain has already left the meeting, borrow one from each category below and change the wording later.

One for your body and medical care

I can gather information without agreeing to intervention.

Or:

A provider brings expertise. I bring lived experience, goals, and consent.

One for your energy and relationships

I will not routinely spend tomorrow’s energy to avoid disappointing someone today.

Or:

Access to me is based on safety and trust, not title, history, or shared DNA.

One for the life beyond illness

I can pursue better care without making pursuit the purpose of my life.

Or:

I will protect some part of my week from becoming a medical project.

That is enough. One preamble and three principles. You have now written a personal constitution without purchasing a workbook or becoming so fatigued by the exercise that you need to amend it immediately.

Why This Helps When Life Gets Loud

A personal constitution does not control your body. It will not make a reluctant specialist understand connective tissue disorders. It cannot force your family to become safe. It will not persuade your joints to respect term limits. My collagen has never demonstrated much respect for authority.

What it can do is give you somewhere to stand when fear, urgency, guilt, and other people’s expectations are all shouting at once.

Before a difficult decision, ask:

1. What am I trying to protect?

2. Which choice most closely honors my principles?

3. Is this a true emergency, or do I have time to regulate, gather facts, and think?

True medical emergencies deserve prompt care. A personal constitution is not permission to ignore dangerous symptoms or replace medical advice with a handmade manifesto. But not every frightening possibility, recommendation, family demand, or internet warning is an emergency.

Sometimes the constitution leads you toward treatment. Sometimes it leads you toward another opinion. Sometimes it supports watchful waiting with a clear baseline and thresholds for action. Sometimes it tells you to close the seventeen browser tabs and do something that reminds you there is still a person living inside the patient.

The constitution does not give you the perfect answer. It reminds you which life the answer is meant to serve.

Leave Room for Amendments

Your body is dynamic. Your constitution should be too.

Symptoms change. Capacity changes. New information arrives. A principle that protected you last year may confine you this year. Changing your mind is not proof that you cannot trust yourself. It can be evidence that you are listening.

Add one final sentence:

I may amend these principles when my body, circumstances, knowledge, or values change. Changing my mind is self-trust with new information.

Your constitution should be a compass, not another cage.

We the Patients

Politics may remain on fire. The country may continue its ongoing argument about rights, power, limits, authority, and what the founders really meant. Our national group project is not going especially smoothly.

But the old lesson remains useful: what matters should be named. Rights should be protected. Power should have limits. Emergencies should not permanently become the form of government.

The same is true inside one complicated life.

Your doctor may have expertise, but does not own your consent. Your family may have feelings, but does not own your energy. Fear may bring information, but does not automatically receive executive power. Illness may influence almost everything, but it does not get every vote.

You may not control what your body does next. You can still decide what principles will guide how you meet it.

Write your preamble. Choose three principles. Sign your name.

Then keep them somewhere you can find them the next time life calls an emergency session and brain fog arrives claiming to be in charge.

We the patients, in order to form a more livable life, reclaim the authority to decide what we are protecting.

If you write one principle that feels especially important, consider sharing it in the comments. Someone else may recognize the words they have been trying to find.

This article offers general reflection and patient-advocacy tools. It is not medical advice or a substitute for individualized care from a qualified healthcare professional.

No get out there and vote for meaningful change. It’s the only tool we might have left.

Automatic negative thoughts, or ANTs, can march through the mind with the confidence of a pest-control inspector who has never once checked the facts.

For dramatic effect, picture yourself holding a can of Raid, poised over the counter while a line of little thought-ants scurries toward the crumbs. The label says Catastrophizing. The tiny one in the back is yelling You should have figured this out by now! Another is carrying a sign that reads Everyone thinks you’re difficult.

Before you spray, though, remember: this is a metaphor. Please don’t use bug spray on yourself, your food, your service dog, or your actual thoughts. We’re aiming for a pause and a plan, not a toxic cloud.

And chronic illness thoughts deserve a little extra care. Some worries are responding to real symptoms, past dismissal, or genuine limits. The goal isn’t to convince yourself that everything is fine. It’s to sort what you know from what your alarm system is predicting, then choose a thought that helps you meet the moment.

Identify what kind of ANTs showed up

There are several thought patterns that can fuel distress. Naming one can give you a little distance from it. “I’m catastrophizing” is different from “This disaster is definitely happening.” Here’s a few you might recognize…

• Pessimism: “Nothing ever works out for me.”
  Try: I don’t know how this will go yet. I can wait for more information.

• Anticipation: Rehearsing every possible outcome before an appointment, conversation, or procedure, often long after you’ve made the plan.
  Try: I’ve prepared enough for now. I can decide what to do when I know more.

• Mind reading: Assuming the clinician is annoyed, your family is judging you, or everyone thinks you’re exaggerating.
  Try: I can’t know what they’re thinking without asking. What did they actually say or do?

• Catastrophizing: Treating a setback as proof that the whole day, treatment, or future is doomed.
  Try: This is hard. I don’t yet know what it means, and I can take the next step.

• Perfectionistic thinking: Expecting yourself to manage illness, work, relationships, and self-care flawlessly, even when your body has other plans.
  Try: I can do what matters most with the capacity I have today.

• Cognitive fusion: Treating a thought as a fact because it feels vivid or frightening.
  Try: I’m having the thought that this will go badly. A thought is not a prediction.

• “Should” thoughts: “I should be more productive,” “I should be over this,” or “I should be able to handle it.”
  Try swapping should for would like to or it matters to me to. That leaves room for choice, capacity, and reality.

Your ANTs-control kit

When you notice the swarm, try this small sequence:

1. Name it. “That sounds like catastrophizing.” Or, if you’re feeling less clinical, “Ah. The ANTs have unionized.”

2. Pause before “spraying.” Take a breath, unclench what you can, and give yourself a moment before reacting to the thought.

3. Check the evidence. What supports this fear? What points another way? Is there information you don’t have yet?

4. Estimate the likelihood. Is this a certainty, a possibility, or your brain’s emergency broadcast system?

5. Choose a coping thought. Make it believable and useful, not artificially cheerful. I don’t know what the test will show. I can write down my questions and ask for help understanding the result may work better than Everything is perfect.

6. Decide on one next action. Rest, message your care team, prepare a note for the appointment, drink something, or turn your attention to what’s happening now.

That last part matters. You do not have to solve your entire life because one anxious thought rang the doorbell.

A quick plan for a flare-day

This idea of doing a thought record invites you to examine a distressing thought by considering the situation, evidence, actual likelihood, how you could cope, and a more useful coping thought. Here’s a chronic-illness version:

1. The thought: “If I can’t do this appointment, I’m never going to get help.”

2. What happened: I woke up in a flare and the appointment is today.

3. What supports the thought: I’ve waited a long time, and rescheduling may take effort.

4. What else is true: I don’t know yet whether I can attend. I can ask about a video visit, a later time, or what to do if I need to reschedule.

5. How likely is the feared outcome? It’s possible I’ll need to change the plan. That doesn’t prove I’ll never get help.

6. How could I cope? I can call the office, explain the situation, and ask what options are available.

7. A coping thought: I’m having a difficult morning. I can find out what choices I have, one call at a time.

   *No gold star required for writing this down neatly. A note in your phone counts. A whispered sentence from bed counts. So does asking someone you trust to help you sort the facts.

Sometimes the ants are pointing to a real problem

Not every uncomfortable thought is a pest to eliminate. If you’re worried because a new symptom is severe, changing, or concerning, it may be telling you to contact a qualified clinician or seek urgent care. If you’ve been dismissed before, it makes sense that your brain may expect it again. You can acknowledge that history while still asking what evidence you have about this particular moment.

The aim is not to spray your fear into silence. It’s to keep the fear from taking over the whole kitchen.

Consider a garden metaphor: notice what’s growing, pull up weed-like thoughts that don’t serve you, and tend to more compassionate beliefs until they fully bloom. Here’s a worksheet to leverage the metaphor with your trauma.

With chronic illness, maybe the new seed isn’t I am healthy and nothing bad will happen. Maybe it’s I deserve care even when my answers are incomplete. Or My capacity changes, and that does not make me lazy or less worthy.

Some days you’ll catch the ANTs early. Some days they’ll be holding a conference on your pillow before you’re fully awake. Either way, you can notice them, check what they’re saying, and choose what deserves your attention next. It’s your choice, so vote wisely.

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Source: Adapted from the free worksheets in Complete Trauma Treatment Guide, including “Assessing Your Own Patterns of Thinking,” “Combating Negative Automatic Thoughts,” and “Garden of the Mind.” The worksheets credit Catherine Pittman’s Taming Your Amygdala and Arielle Schwartz’s The Complex PTSD Treatment Manual.

Adorable.

Chronically ill people call that another Tuesday at the doctor’s office.

So this year, Zebras Underground proudly presents a haunted house designed specifically for people with complicated bodies.

Enter if you dare. MUAHAHAHAHAHA!

ROOM #1 IN THE ZEBRA HOUSE OF HORRORS: THE LAB

A woman in scrubs approaches holding a needle.

“Are you an easy stick?”

You laugh.

She does not.

THUNDER CRASHES.

Somewhere in the distance, a vein rolls.

ROOM #2: THE SPECIALIST

You waited eight months for this appointment.

The doctor enters.

He has not read your chart.

He asks:

“So what brings you in today?”

AAAAAAAAAAAAAAHHHHHHHH.

ROOM #3: THE PHARMACY

Your medication is ready!

Just kidding.

It requires prior authorization.

Your insurance denied the prior authorization.

Your doctor must now appeal the denial of the prior authorization for the medication you’ve been successfully taking for three years.

A skeleton sits quietly in the waiting area. He has been here since 2024.

ROOM #4 THE MRI

“Just lie completely still.”

Excellent.

Your shoulder is subluxing.

Your neck hates you.

Your hip has begun doing something you’ve never experienced before.

And suddenly your nose itches with an intensity previously unknown to medical science.

DO NOT MOVE.

Forty-seven minutes remaining.

ROOM #5: THE PORTAL

YOU HAVE A NEW TEST RESULT.

No physician has reviewed it.

There are six words in red.

One says ABNORMAL.

Google is available.

It is 11:48 p.m.

Choose wisely.

ROOM #6: THE INSURANCE COMPANY

There is no door.

Only hold music.

Every eleven minutes, a voice says:

“Your call is very important to us.”

You have aged visibly.

ROOM #7: THE FAMILY GATHERING

Someone approaches carrying potato salad.

“I read about this thing that cures inflammation.”

Oh God. No.

“Have you tried—”

RUN.

ROOM #8: THE EMERGENCY DEPARTMENT

The nurse asks you to list your medical conditions.

You inhale.

She looks at the computer.

You continue.

She looks back at you.

You continue.

She slowly pulls up another screen.

You whisper:

“We’re only at the C’s.”

ROOM #9: THE BILL

You receive an envelope marked:

THIS IS NOT A BILL.

Inside is something that looks extraordinarily like a bill.

$38,742.16.

You briefly leave your body like a ghost.

THE FINAL ROOM

A physician walks toward you.

You brace yourself.

He sits down.

Looks you in the eye.

And says:

“I believe you.”

You wait for the trapdoor.

Nothing happens.

He continues:

“I read your records before you came in.”

Now you’re really suspicious.

“And I don’t know the answer yet, but we’re going to figure out what we can together.”

Holy shit.

IS IT A HALLOWEEN SPOOKTACULAR TREAT OR A TRICK?

Happy Halloween, my spooky little zebras. I hope this made you chuckle and eat one more tiny candy car on the couch without guilt. May your joints remain approximately where nature intended, your prescriptions require zero prior authorizations, your portal remain boring, and absolutely nobody at Thanksgiving suggests yoga.

- - Christie

A newly published review by neurologist Dr. Marcello Cherchi explores one of the least understood aspects of Ehlers-Danlos syndrome: why so many of us struggle with dizziness, balance, hearing, and feeling disconnected from our own bodies.

There are certain papers that simply add another brick to the wall of medical knowledge. They answer one question, generate three more, and quietly take their place among thousands of journal articles that most patients will never know exist.

Then there are papers that quietly rearrange how you think.

That was my experience reading Dr. Marcello Cherchi’s review on the audio-vestibular manifestations of Ehlers-Danlos syndrome. As a neurologist with expertise in vestibular disorders, Dr. Cherchi does something surprisingly simple: he steps back and asks what happens when a connective tissue disorder affects multiple systems responsible for helping us stay upright and holding it all together.

The result is a fascinating discussion of hearing, dizziness, balance, proprioception, vision, gait, autonomic dysfunction, Chiari malformation, craniocervical instability, and the many ways these problems can intersect in people with Ehlers-Danlos syndrome.

Reading the paper, I found myself thinking less about my ears and more about all the years I had been compartmentalizing symptoms that perhaps never belonged in separate boxes to begin with.

Like many patients, I had mentally filed them away.

The dizziness belonged to POTS.

The neck symptoms belonged to craniocervical instability.

The visual disturbances belonged to Chiari.

The ringing in my ears was just one of those odd things my body did.

Feeling unstable in the grocery store? Probably fatigue.

Walking into door frames? I’m just clumsy.

Missing the last step? Everyone does that...right?

Dr. Cherchi’s review doesn’t claim that these symptoms are all caused by one diagnosis. Quite the opposite. The idea I found much more interesting is this: balance is not produced by one organ. It is the product of multiple systems working together, and EDS may affect more than one part of that system.

Suddenly, what many of us experience begins to look less like a collection of unrelated annoyances and more like a systems problem. Like an entire ecosystem.

That shift in perspective is profound.

We Have Been Taught That Balance Lives in the Inner Ear

Ask most people where balance comes from and they’ll point to the ears.

They’re not wrong, but they’re also not completely right.

The vestibular system inside the inner ear is certainly one of the major players. Tiny fluid-filled structures detect acceleration, gravity, and head movement, sending continuous updates to the brain about how your head is moving through space.

But the ears don’t work alone.

Your eyes are constantly providing visual information about your environment. They help your brain determine where the horizon is, whether you’re moving, and how objects around you are changing position.

Then there is the system that almost nobody explains to patients, although many hEDS patients eventually learn about it on their own: proprioception.

If you’ve never heard the word before, you’re not alone. Ironically, it may be one of the most useful concepts for understanding some of the stranger experiences of living with EDS.

What Is Proprioception?

Proprioception is sometimes called our “sixth sense,” but I prefer to think of it as the body’s internal GPS. Specialized sensory receptors in muscles, tendons, joints, and other tissues continuously send information to the nervous system about body position and movement.

Without consciously thinking about it, your brain knows your knees are slightly bent, your weight is shifted toward your left foot, your neck is turned, and your right ankle is beginning to roll inward.

You don’t have to look at your feet to know where they are because your proprioceptive system has already told your brain.

Unless, perhaps, the information coming from the body isn’t as reliable as it should be.

Dr. Cherchi’s review discusses research showing proprioceptive impairment in people with EDS. Researchers are still working to understand exactly why this occurs, and the mechanisms are likely complex. Altered connective tissue mechanics may play a role, and neurologic problems such as peripheral or small fiber neuropathy may contribute in some patients.

Whatever the mechanism, the experience itself may sound remarkably familiar.

We don’t usually walk into a doctor’s office and announce, “I believe my proprioception is impaired.”

We say:

“I’m just really clumsy.”

And perhaps we’ve been using the wrong word all along.

What Poor Proprioception Can Feel Like

The medical definition is useful. The lived experience makes it click.

Think about carrying a laundry basket and somehow clipping the doorway even though you could swear you left enough room. Or feeling surprisingly unstable in a dim restaurant or movie theater. Or automatically putting a hand on the counter while standing in the kitchen. Searching for stability.

Maybe you love a shopping cart even when you only need three things.

Maybe you watch your feet when you walk over uneven ground.

Maybe stairs require more concentration than you think they should.

Maybe you have spent your whole life joking about being the person who can trip over absolutely nothing.

These things do not automatically mean someone has impaired proprioception, of course. But understanding proprioception gives us another way to think about experiences we might otherwise dismiss as simple clumsiness.

And there is another important piece: proprioception is only one member of the balance team.

It’s Not Just Proprioception

This is where the bigger picture gets interesting.

Balance is a multisystem process. Your vestibular system contributes information about head movement and gravity. Your eyes provide visual reference points. Proprioception tells your brain where your body is in space. Your nervous system has to integrate all of it and make constant adjustments to keep you upright and moving.

Then add the things many people with EDS already know well.

Orthostatic intolerance or POTS can contribute to lightheadedness and disequilibrium when standing. Pain, muscle weakness, fatigue, and joint instability can change the way someone moves. Cervical problems may add another layer of complexity in certain patients. Vision may become especially important when the brain is compensating for less reliable information elsewhere.

No single problem necessarily has to explain everything.

Sometimes several systems may simply be making one another’s jobs harder.

The best way I can picture it is as a committee.

Not an ear.

Not a brain.

A committee.

Balance isn’t one employee doing one job. It’s an executive committee trying to make one decision: Are we safe to keep standing?

When every committee member is sending slightly different information, it’s no wonder the meeting runs long.

And Then There’s Hearing

Dr. Cherchi also discusses auditory symptoms associated with EDS, including hearing loss, tinnitus, hyperacusis, autophony, and conditions such as superior semicircular canal dehiscence (SSCD).

Some of those words sound intimidating until you translate them into actual human experiences.

Tinnitus may mean ringing, buzzing, humming, or other sounds without an external source.

Hyperacusis refers to an unusual sensitivity to ordinary sounds.

Autophony can involve hearing internal body sounds unusually loudly. For some people, that might mean hearing their own voice, breathing, heartbeat, chewing, or even footsteps in a strangely amplified way.

Imagine spending years thinking, Well, that’s another weird thing my body does, only to discover that medicine actually has words for it.

Let’s hear it for that alone! V-A-L-I-D-A-T-I-O-N. Come on! ♫⋆｡♪ ₊˚♬ ﾟ.

If hearing issues are part of your EDS experience, share them in the comments. I suspect this is one of those topics where we’re going to discover a lot of us have been quietly experiencing things we never thought to mention or really understood.

Leave a comment

From Understanding to Action: There’s Actually an Algorithm

One of the things I appreciate most about Dr. Cherchi’s work is that it doesn’t simply describe a fascinating collection of symptoms and leave us there. He offers clinicians a framework for thinking through them.

That does not mean every person with EDS should march into a doctor’s office requesting every vestibular test known to modern medicine. Please do not take this article as your new medical scavenger hunt.

Evaluation should be driven by the symptoms and clinical picture.

Depending on what a patient is experiencing, Dr. Cherchi discusses tools that may include hearing testing such as audiometry and otoacoustic emissions, vestibular testing such as VEMP or videonystagmography, evaluation for orthostatic problems, tilt-table testing when appropriate, ophthalmologic evaluation, and imaging when conditions such as Chiari malformation, craniocervical instability, or SSCD are clinically suspected.

Importantly, he also reminds clinicians that people with EDS can develop the same common vestibular disorders everyone else does.

That matters.

Once you have a complicated diagnosis, there is a strange temptation for everyone involved, patients included, to assume every new symptom must lead back to it. Sometimes it does.

And sometimes a zebra gets the same ordinary ear problem as everybody else.

The point isn’t to test for everything.

The point is to ask better questions.

Recognize a theme here? I keep coming back to that idea because, after years in the chronic illness world, I increasingly believe that better questions are often more useful than simply collecting more diagnoses. I do not believe we as patients need to change when the system won’t…but we can learn to ask better questions.

Maybe the World Really Does Feel Different From Inside This Body

What stayed with me after reading Dr. Cherchi’s work was not one particular symptom, test, or diagnosis. It was the bigger idea underneath all of it.

Balance is an extraordinary act of cooperation.

To move through the world, the brain is constantly gathering information from the inner ears, eyes, joints, muscles, nerves, cardiovascular system, and other parts of the body. It compares those signals, decides which ones to trust, makes tiny corrections, and somehow keeps us upright without our ever having to think about it.

Until it doesn’t.

For people with Ehlers-Danlos syndrome, there may be several places in that beautifully complicated system where the information becomes less reliable or additional problems enter the equation. And sometimes more than one thing is happening at once.

We are accustomed to medicine looking for the explanation.

The one diagnosis.

The abnormal test.

The specialist who owns the symptom.

But perhaps some of the strangest experiences of living in a hypermobile body cannot always be understood that way.

Maybe the reason the grocery store feels overwhelming isn’t simply “dizziness.” Maybe walking through a dark room becomes harder because vision had quietly been doing more of the work than we realized. Maybe holding onto the shopping cart isn’t just habit. Maybe the person who has spent a lifetime being called clumsy is navigating the world with less dependable information about where their body is in space.

And maybe some of us aren’t imagining that peculiar feeling that the world is slightly tilted.

None of this means every person with EDS needs an exhaustive battery of vestibular tests, scans, specialists, or another medical rabbit hole. If anything, I take the opposite lesson from this work.

Symptoms deserve thoughtful investigation, but investigation should be guided by the individual patient and the pattern of symptoms. Common causes of dizziness still happen to people with EDS. Not everything is EDS, and not every abnormal sensation requires a rare explanation. Sometimes what we believe are symptoms are just sensations.

What this paper gives us is something more useful than another diagnosis to chase. It gives us a better framework for describing what is happening.

Instead of walking into an appointment with only:

“I’m dizzy.”

Maybe we can get more specific with better questions and answers.

• Does it happen when I stand?

• Does the room actually spin?

• Am I noticeably less stable in darkness?

• Do busy visual environments make things worse?

• Are ordinary sounds painfully loud?

• Can I hear my heartbeat, breathing, chewing, or footsteps unusually loudly?

• Does moving my head change the sensation?

• Do I depend heavily on touching something or watching my feet to feel steady?

Those questions may help clinicians begin separating the members of that very crowded balance committee.

And after years of living in a body that can generate an astonishing number of confusing sensations, I find something strangely comforting about that.

There may not be one broken piece. There may be several systems trying very hard to compensate for one another.

The goal, then, isn’t necessarily to hunt endlessly for the single diagnosis that will finally explain everything. It is to understand the ecosystem well enough to recognize where help may actually be useful.

That feels like progress!

Because sometimes the most meaningful advances in medicine don’t arrive as cures, breakthrough drugs, or revolutionary surgeries. Sometimes they arrive as language. A framework. A clinician willing to connect dots that have been scattered across different specialties for years.

And sometimes they give a patient the ability to say:

“Wait. There may actually be a reason I feel this way.”

For a community that has spent far too much time trying to explain sensations that are difficult to describe, that is no small thing.

Perhaps we aren’t simply bad at navigating the world.

Perhaps our bodies have been navigating with a more complicated map all along.

Read the Original Work

Cherchi, Marcello. “Ehlers-Danlos Syndrome.” In Otoneurology and Vestibular Medicine: A Clinical Handbook. Cham, Switzerland: Springer Nature Switzerland, 2025, pp. 831–834. https://doi.org/10.1007/978-3-031-94841-1_176

Dr. Cherchi’s work discusses hearing loss and disequilibrium in Ehlers-Danlos syndrome, including the potential contributions of orthostatic intolerance, otologic disorders, and neurologic conditions. I encourage interested readers, and especially clinicians, to read the original work rather than relying solely on my interpretation of it.

A note from Zebras Underground: This article is my interpretation of the published medical literature through the lens of patient education and lived experience. It is not medical advice. Dizziness, hearing changes, imbalance, fainting, or new neurologic symptoms deserve individualized medical evaluation. Dr. Cherchi’s original work remains the source for his conclusions. My role here is simply to help translate the science into language the rest of us can carry into our lives and, hopefully, into better conversations with our providers.

There is a moment in almost every zebra’s medical journey when someone whispers a name.

Not just any name.

A Name.

The doctor who understands EDS.

The cardiologist who actually knows POTS.

The neurologist who doesn’t look confused when you mention dysautonomia.

The physical therapist who understands that “just stretch more” may be spectacularly bad advice for someone whose joints already consider anatomical boundaries optional.

The neurosurgeon who understands the complicated structural issues some patients are navigating.

Someone posts in a private Facebook group:

Has anyone seen Dr. So-and-So?

And suddenly the comments appear.

YES.

She gets it.

He believed me.

Worth the drive.

Worth the wait.

Then comes the sentence that functions almost like contraband in the chronic illness world:

Here’s the contact info.

And thus begins one of the strangest cycles in complex chronic illness medicine.

We spend years begging medicine to produce doctors who understand us.

Then, when we finally find one, we all go there. And eventually - we break them.

Not intentionally, of course.

But I think we need to talk about what happens on the other side of the examination table.

Because Part One of this series was about what years of medical dismissal can do to patients. We become hypervigilant. We research. We collect records. We seek specialists. We learn not to accept “everything looks fine” quite as easily as everyone else.

But there is another person participating in this increasingly dysfunctional medical ecosystem.

The provider.

And the good ones may be paying a price, too.

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First, You Find the Unicorn

Finding an EDS-literate physician can feel like finding a unicorn who accepts your insurance and has an appointment before your next birthday.

The shortage isn’t imaginary.

Research examining EDS/HSD care has described limited access to knowledgeable multidisciplinary providers, overburdened practices, substantial waitlists and concern that clinicians may burn out or withdraw from caring for this population.

The Ehlers-Danlos Society maintains a global healthcare-professional directory precisely because finding knowledgeable providers remains such a challenge. And many experienced patients would say the list is garbage. Importantly, the Society also notes that directory inclusion is not certification or a guarantee of quality.

So patients do what humans have always done when a scarce resource appears.

We tell each other.

That is one of the most beautiful things about the EDS community.

We share information.

We warn each other about bad experiences.

We explain which specialist treats what.

We tell the newly diagnosed patient where to go.

We send names through text messages and Facebook groups and Substack comments and whispered conversations in waiting rooms.

Someone finally helped me.

Maybe they can help you.

That is community care.

But when there are thousands of complicated patients and relatively few clinicians willing and able to care for them, community care can accidentally become a referral firehose.

And can be dangerous with legal issues and liable so watch what you say online. I’ve heard of practices having watchers record FB commentary to fuel lawsuits.

Then the Waitlist Begins

At first, maybe the doctor has a three-month wait.

Then six.

Then nine.

Then someone posts:

They’re booking eighteen months out.

Eventually another message appears:

They’re not accepting new patients.

And everyone fucking panics.

Because this wasn’t simply another doctor.

This was our doctor.

One of the few.

The person we were sending everyone to.

The person who knew our unique illness diagnostic list of alphabet soup without requiring a PowerPoint presentation first.

The person who didn’t need us to explain EDS, POTS and every accompanying acronym before getting to the actual reason for the appointment.

And suddenly access starts closing.

From the patient’s side, this can feel like abandonment.

From the provider’s side, however, something very different may be happening.

Imagine Being the Doctor Everyone Finally Finds

Let’s flip the examination table for a minute.

Imagine you’re a physician who becomes interested in EDS or other complexity like dysautonomia, etc.

Maybe you have one patient who teaches you something.

Then another.

You read.

You attend conferences.

You learn.

You become genuinely good at treating a population most physicians find intimidating.

Patients notice.

Then patients tell other patients.

Your practice begins filling with people who haven’t simply been sick for six months.

They arrive carrying years of medicine with them.

Three binders.

Seventeen specialists.

Multiple diagnoses.

Twenty medications and supplements.

MRIs from four hospital systems.

Previous surgeries.

Autonomic symptoms.

GI symptoms.

Neurological symptoms.

Pain.

Fatigue.

Trauma from previous medical encounters that includes tears in the exam room.

And usually one perfectly reasonable request:

Please help me figure out what the hell is happening.

Except that is not a fifteen-minute problem that’s billable.

Complex Patients Require Complex Time

This is one of the fundamental mismatches and complete breakdowns in our healthcare system.

Complex chronic illness requires time.

Healthcare economics often rewards something closer to throughput.

Research involving genetic counselors working with hEDS patients describes additional time spent on education, psychosocial needs, record review, preparation, documentation and follow-up. Importantly, some of that work occurs outside the appointment and may not be billable.

Anyone with a complicated medical history understands exactly what this looks like.

A provider may need to review years and pages upon pages of records before seeing us.

During the appointment, symptoms don’t conveniently remain inside one organ system.

The cardiology problem affects the neurological problem.

The neurological problem affects mobility.

Mobility affects pain.

Pain affects sleep.

Sleep affects cognition.

Medication for one thing worsens another thing.

And somewhere in the middle of all this, insurance would apparently like everyone to wrap things up.

Tick-tock.

Next patient. Cha-ching.

Except there are six more questions.

And three portal messages tomorrow.

And an insurance denial.

And a prior authorization.

And a disability form.

And records another specialist needs reviewed.

And somewhere beneath all of that is a physician who presumably needs to eat lunch. How dare they, right? No. Wrong. They are humans with lives, kids and personal goals too. Many also have complex health issues or family with issues as it might be why they got into this in the first place. Try wearing their shoes for one day. You might be less likely to rage on them, at least I hope you might.

We Don’t Just Bring Medical Complexity

This next part requires some tenderness.

Because we don’t arrive merely medically complicated.

Many of us arrive hurt, even traumaitized.

We have spent years being dismissed.

Some of us have been told symptoms were psychological.

Some have been misdiagnosed.

Some have experienced delayed diagnoses.

Some have been mocked, minimized or treated like difficult patients.

So when we finally meet someone who believes us, something enormous happens.

We exhale.

Finally.

And sometimes that provider becomes more than a doctor.

They become The Safe Doctor.

The one we trust like a caring friend we oogle over to others in appreciation.

The one we want interpreting the next symptom.

The one we want copied on everything.

The one we message when another specialist says something confusing.

The one we desperately don’t want to lose like a dear friend we are very attached to psychologically and physically.

That attachment makes perfect emotional sense.

But imagine what happens when hundreds or thousands of medically traumatized patients all find the same Safe Doctor.

Suddenly that physician isn’t simply providing medical care.

They are carrying an extraordinary amount of accumulated fear, uncertainty and hope. Emotional baggage defined for anyone with empathy.

That’s a heavy burden for one human being with a stethoscope.

Then Come the Boundaries

Eventually, something changes.

Portal messages are limited.

Appointments become shorter.

Follow-ups are harder to obtain.

New-patient referrals require enormous intake packets.

Entire medical systems or institutions where certain diagnoses are no longer accepted.

The practice stops taking insurance.

The physician joins a larger institution.

Or leaves one.

Or creates a membership model.

Or goes concierge.

Or simply closes the waiting list.

Patients understandably get angry.

How can they do this to us?

But sometimes the better question may be:

What happened that made the old model impossible to sustain?

Studies of genetics clinics dealing with EDS and hypermobility referrals give us a glimpse. Clinics have developed triage systems and restrictive referral policies because demand can overwhelm available appointments. Researchers have also documented provider frustration and burnout as factors influencing those policies.

In other words, those annoying barriers we encounter may sometimes be the healthcare system’s scar tissue.

And Then Comes Concierge Medicine

This may be the most emotionally complicated stage of all.

The beloved specialist announces:

We are no longer accepting insurance.

Collective zebra scream.

Because now the doctor who finally understood us costs hundreds or thousands of dollars.

And for people already paying for medications, physical therapy, mobility equipment, supplements, imaging, travel, lost wages and seventeen varieties of electrolyte powder, this can feel like betrayal.

But there is another side.

Traditional insurance-based medicine may not adequately reimburse clinicians for the time required to manage highly complex patients. That pressure is one reason some physicians treating complex chronic illnesses have described moving toward cash-pay or membership models. Reporting in other overlapping complex-illness communities, including dysautonomia, MCAS, ME/CFS and Long COVID, has documented precisely this tension: patients become priced out while physicians describe burnout and uncompensated work under traditional insurance models driven by profits.

For example, did you know that United Healthcare is the THIRD largest company in the US, only behind Amazon and Walmart? Did you know they also own the hospitals, pharmacy chains such as CVS, and every layer in between? The system is built to break you. Look it up!

This doesn’t mean every concierge practice is justified.

It certainly doesn’t mean every expensive EDS clinic is excellent.

Expensive does not mean expertise.

And vulnerable patients deserve protection from anyone selling certainty, miracle cures or unnecessary testing at luxury-hotel prices.

But cash medicine isn’t automatically evidence of greed, either.

Sometimes what we’re witnessing is a physician trying to make the math work.

If complex patients need an hour and insurance economics effectively rewards fifteen minutes, something eventually has to give.

Unfortunately, what gives may be access.

The Terrible Feedback Loop

And now we have created an ecosystem where everyone is losing.

Patients cannot find knowledgeable doctors.

So they concentrate around the few knowledgeable doctors they can find.

Those doctors become overwhelmed.

Waitlists grow.

The practices establish stricter boundaries.

Some stop accepting insurance.

Some stop accepting new patients.

Some leave the field.

Which means there are fewer knowledgeable doctors.

Which means patients concentrate even more intensely around the remaining ones.

And around we go.

This isn’t a patient problem.

It isn’t a doctor problem.

It’s a capacity problem.

We have far more complex patients needing knowledgeable longitudinal care than we have clinicians with the training, time, reimbursement structure and support necessary to provide it.

And no amount of yelling at each other from opposite sides of the examination table fixes that.

The Expert Paradox

There is another problem created by scarcity.

The scarcer the expert becomes, the more powerful the expert becomes.

If you’ve waited two years for an appointment, flown across the country, paid thousands of dollars and arranged your entire life around seeing someone, it becomes very difficult to treat that consultation like an ordinary medical opinion.

The doctor can become The Authority.

And that’s not healthy either.

Experts are still doctors.

They can disagree with one another.

They can be wrong.

They have preferred procedures, diagnostic frameworks and clinical biases like everyone else.

Expertise deserves weight.

It does not require surrendering our judgment.

This is especially important when the recommendation involves surgery, invasive testing or expensive treatment.

Scarcity should not turn a physician into an oracle.

The fact that it took two years to get into the room does not obligate us to say yes to what happens inside it. But that is what happens to many of us. Think Metrodora (read my recap on that debacle).

We May Also Need to Rethink What We Ask the Unicorn to Do

This is the part where patients have some agency.

When we finally find an EDS expert, perhaps we shouldn’t automatically expect that person to become responsible for every strange thing our bodies do forever.

Maybe the rare expert’s highest value is sometimes:

• diagnosing,

• consulting,

• creating a plan,

• answering the unusually complicated question,

• and then helping local clinicians carry out as much routine care as possible.

• That requires local clinicians willing to learn, of course.

And there’s the rub.

We don’t simply need more EDS experts.

We need more EDS-capable doctors.

There is a difference.

Every internist does not need to become the world’s foremost authority on connective tissue disorders.

Every cardiologist doesn’t need to run an autonomic research center.

Every physical therapist doesn’t need to publish papers on hypermobility.

We need more clinicians who can say:

“I know enough about this condition to care for you safely, and I know when I need help.”

That could change everything.

We Need a Hub-and-Spoke Model, Not a Unicorn Hunt

Imagine a different system.

Instead of thousands of patients chasing a handful of celebrity-level experts, the expert becomes the hub.

They educate.

They consult.

They handle unusually difficult cases.

They collaborate with local physicians.

And around them exists a much larger network of clinicians who understand enough to provide ongoing care.

Primary care.

Cardiology.

Neurology.

GI.

Pain medicine.

Physical therapy.

Mental health.

Rehabilitation.

Pelvic health.

Whatever that particular patient needs.

The expert doesn’t have to personally carry every zebra. That creates dependents.

They help build a system that can.

That may ultimately be far more scalable than our current model of whispering one doctor’s name around the internet until their appointment calendar spontaneously combusts.

And Patients Can Help Protect the Good Ones

No, we cannot personally repair American healthcare.

I checked my calendar.

I’m busy Thursday.

But perhaps we can become more thoughtful consumers of scarce expertise.

Before sending every newly diagnosed person to the same nationally known specialist, we can ask:

• Does this person actually need that level of expertise yet?

• Could a knowledgeable local clinician handle the question?

• Could the expert provide consultation while someone closer to home handles ongoing care?

• Can we consolidate our questions rather than sending six portal messages?

• Can we arrive organized enough that the physician doesn’t spend half the appointment reconstructing our history?

• Can we distinguish between a genuinely urgent medical question and anxiety created by uncertainty?

• Can we recognize that boundaries aren’t necessarily rejection?

• Can we allow a good doctor to be a doctor rather than asking them to become the entire safety net beneath our complicated lives?

None of this means becoming quiet, compliant patients.

It means recognizing that sustainable self-advocacy has to work for both sides of the examination table.

Maybe This Is the Next Stage of EDS Advocacy

For years, EDS advocacy understandably focused on one message:

Believe us.

Then:

Diagnose us.

Then:

Learn about us.

Those messages still matter.

But perhaps the next era needs another one:

Build enough capacity to care for us.

Train more clinicians.

Teach EDS and HSD beyond a tiny circle of specialists.

Create better multidisciplinary pathways.

Develop consultation models where experts support community physicians.

Pay clinicians for the actual time complex care requires.

Create reimbursement systems that reward thinking and coordination, not merely volume.

Support clinicians who choose to work with difficult multisystem disease instead of economically punishing them for doing it.

And teach patients how to use scarce specialty care strategically.

Because finding one extraordinary physician is wonderful.

Building a healthcare system where we don’t desperately need that one extraordinary physician would be better.

The Zebra Who Told You About the Doctor Wasn’t Wrong

Keep sharing resources.

Keep helping the newly diagnosed patient desperate for answers.

Keep recommending the doctor who finally listened.

That generosity is one of the things I love most about this community.

But perhaps we should also recognize the strange responsibility that comes with discovering something scarce.

The answer cannot simply be:

Everybody go see this person.

Because eventually everybody does.

Then nobody can.

The long-term answer has to be creating more knowledgeable providers, better systems around them and patients who know how to use specialized expertise without requiring one physician to hold together their entire medical world. Shared resources for finding answers like the site EDSJointEffort.com for example.

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Part One of this series asked what happens when patients spend years being dismissed and learn that they must keep searching. If you missed it, it’s a good one, go read it.

This part asks what happens when all those searching patients finally arrive at the same door.

Maybe both stories are symptoms of the same broken system.

We are exhausted from searching.

They are exhausted from being found.

And somewhere between those two exhausted groups is the healthcare system complex chronic illness patients actually need.

One where we don’t have to spend years hunting unicorns.

And where the good doctors don’t have to become unicorns in the first place.

What years of medical dismissal can do to complex chronic illness patients—and why some of us eventually lose the ability to take “you’re okay” for an answer

Part One of a two-part Zebras Underground series about what happens to patients - and the providers- eventually who try to care for us (part two)

There is a particular kind of head game that can happen after you’ve lived in the complex chronic illness world long enough.

I’ve watched it happen to other people. I’ve watched it happen in support groups. And if I’m being appropriately uncomfortable here, I’ve watched it happen to me.

You develop a symptom. Maybe it’s new. Maybe it’s been simmering for years. You mention it to a doctor, who runs some tests and tells you everything looks okay.

For most people, this is excellent news.

For some of us?

Not so fast.

We’ve heard “everything looks fine” before.

We heard it before someone finally diagnosed our POTS. Before someone recognized our hypermobility. Before someone figured out why we were fainting, hurting, reacting to things, having migraines, losing function, struggling with our GI tract, or experiencing any number of symptoms that didn’t fit neatly into a fifteen-minute appointment.

We’ve been told our labs were normal when we felt anything but normal. We’ve been told to exercise more, sleep better, lose weight, reduce stress, see a therapist, stop Googling, or simply accept that nothing medically concerning could be found.

And sometimes—this is the part that complicates everything—we eventually discovered that something really had been missed.

We were right.

That changes a person.

Because once you have learned that “nothing is wrong” does not always mean nothing is wrong, it becomes extraordinarily difficult to know when to believe it again.

And that is what I want to talk about.

Not whether complex chronic illness is real. It is.

Not whether medical gaslighting happens. It does.

Not whether people with Ehlers-Danlos syndrome and related conditions sometimes need to fight ridiculously hard for competent care. Many of us do.

I want to talk about what can happen after years of doing that fighting and calling yourself a “warrior.”

Because there may come a point when the survival skills that helped us finally get diagnosed begin quietly running the rest of our lives.

And nobody tells us when it might be safe to put them down.

We Learned Not to Believe “You’re Fine”

Imagine two patients experiencing the same strange pain.

Patient A develops it on Tuesday. She sees her doctor Friday. The doctor examines her, orders appropriate testing and says, “I don’t see anything concerning.”

She thinks, Thank God.

Patient B has spent ten years in the medical system.

She has previously been told nothing was wrong, only to discover later that something was. She has been misunderstood by clinicians unfamiliar with her condition. Perhaps symptoms were attributed to anxiety or weight or aging or stress. Maybe she was repeatedly reassured until she finally reached a specialist who looked at the same history and said, “Actually, I think I know what’s happening.”

Now give Patient B the same sentence:

“I don’t see anything concerning.”

Her nervous system may not hear reassurance.

It may hear:

They missed it again.

That response did not come out of nowhere.

We learned it.

When reassurance has repeatedly been followed by continued illness—or occasionally by the discovery that the reassurance itself was wrong—the brain becomes less willing to accept reassurance the next time around.

That is not stupidity. It is learning. And our brains remember.

But learned vigilance can become a problem when we no longer know how to turn it off.

Then Comes the Internet

Oh, the internet.

Possibly the greatest thing that ever happened to rare-disease patients and also the place where three hours after Googling “weird pulling sensation in leg,” you can find yourself reading a 2017 neurosurgical case report from Belgium while eating crackers in bed at 2:14 a.m.

The internet changed everything for patients like us.

For generations, physicians held almost all the medical information. Today, a patient can access medical journals, conference presentations, patient organizations, lectures, diagnostic criteria and communities containing thousands of people with similar symptoms.

That democratization of information has unquestionably helped people.

It has also created something medicine has never really had to deal with before:

the highly medically literate, deeply frightened, chronically symptomatic patient with unlimited research capacity.

Give us enough years and some of us become frighteningly good at this.

We learn PubMed.

We learn anatomy.

We learn the difference between supine and upright imaging.

We know which specialists diagnose which conditions, whose waiting list is two years long, who requires what imaging protocol and which obscure test is supposedly the one nobody else thought to order.

We develop folders.

Spreadsheets.

Timelines.

Annotated MRIs.

Secret provider lists held close.

And naturally, seventeen browser tabs involving something with the word occult in front of it.

Research gives us something illness has taken away:

Control.

When doctors couldn’t explain what was happening, we could at least investigate it ourselves.

When appointments left us powerless, information made us feel less powerless.

When nobody seemed to be connecting the dots, we became the dot connectors.

That can be incredibly empowering.

Until researching stops being something we choose to do and starts becoming something we feel we have to do.

The Zebra Casino

There is another psychological wrinkle here that I think we need to understand.

Sometimes the patient is right.

Actually, sometimes the patient is spectacularly right.

Nine doctors say no.

The tenth says yes.

Seven scans are called normal.

Someone finally notices something.

Three specialists dismiss the symptoms.

Then you find the physician who actually understands your condition and says the sentence you’ve been waiting years to hear:

“I believe you.”

Holy dopamine.

But it is more than dopamine. It is vindication.

I knew my body.

I wasn’t imagining this.

I wasn’t exaggerating.

I wasn’t difficult.

There really was something happening.

Experiences like this teach us something powerful:

Keep going.

Psychologists have long understood that behaviors reinforced unpredictably can become extraordinarily persistent. That’s how our brains work. When you never know which attempt will finally produce the reward, you keep trying.

I think some of us eventually end up in what I privately think of as the Zebra Casino.

Another doctor.

Pull the lever.

Nope.

Another scan.

Pull the lever.

Nothing.

Another specialist.

No.

Another medical journal.

Another Facebook recommendation.

Another second opinion.

And then:

JACKPOT.

Someone finally finds something.

Well, shit.

Guess what our brain just learned?

Never stop pulling the lever.

When Self-Advocacy Gets Complicated

The chronic illness community has spent years teaching patients something medicine desperately needed us to learn:

Trust yourself.

Ask questions.

Get copies of your records.

Seek another opinion.

Don’t allow yourself to be dismissed.

Find a physician who understands your condition.

These are good lessons.

Some of them have saved lives.

But I think we need to become mature enough as a patient community to discuss the shadow side of them, too.

Because there is a difference between:

“Don’t let someone dismiss your symptoms without appropriate investigation.”

and

“Don’t accept an answer you don’t agree with.”

Those two things can feel almost identical when you’ve been medically traumatized.

A doctor disagreeing with our suspected diagnosis is not automatically gaslighting.

A normal test result is not dismissal.

A physician saying surgery is not indicated is not necessarily ignorance.

A specialist saying, “I don’t think this is what you have,” may occasionally be exactly the expert opinion we spent months trying to obtain.

And yet if our nervous systems have learned that no means keep searching, we may not experience it that way.

Instead, we think:

They don’t understand EDS.

They didn’t use the right imaging technique.

They aren’t familiar with this presentation.

They don’t see enough patients like me.

I need someone more specialized.

And here’s what makes this maddening:

Sometimes all of those things are true.

That is the mindfuck.

There isn’t a clean line between appropriate persistence and compulsive pursuit of certainty.

Which is why I think we need to start asking ourselves harder questions.

I Have Caught Myself Doing This

This is not an article I am writing from some enlightened mountaintop.

I am writing it from inside the experiment.

I have spent years dealing with complicated spinal issues, surgeries and symptoms. More recently, I have spent an enormous amount of energy trying to understand whether some of my symptoms could be related to occult tethered cord.

And if you know anything about occult tethered cord, you probably already understand where this story is going.

It is controversial. Diagnosis can be complicated. Imaging may not provide a simple answer. There are specialists who approach it differently. There are relatively few physicians considered experts in its relationship to connective tissue disorders.

In other words:

catnip for a medically hypervigilant zebra.

So you research.

You compare symptoms.

You read papers.

You find the names.

You discover the experts.

You wait.

You pay for opinions.

You send records.

You wonder whether the local specialists understand the condition.

Someone looks at the MRI and says no.

But you’ve already learned that this diagnosis isn’t necessarily ruled out by the thing they just looked at.

So instead of their answer closing the case, it may simply reinforce the belief that you haven’t reached the right person yet.

I have caught myself thinking:

Once I get to the real expert, I’ll finally know.

And maybe I will.

But recently I’ve become interested in a much more uncomfortable question.

What if the expert says no, too?

Will I finally feel relieved?

Will I say, “Fantastic. One less thing wrong with me”?

Or will my brain immediately start constructing the argument for why this expert might have missed it too?

Oof.

That question landed hard.

Because at some point this stops being exclusively about tethered cord—or whatever diagnosis happens to occupy the blank space on our medical map.

It becomes a question about our relationship with uncertainty.

Are We Looking for Treatment—or Certainty?

There are excellent reasons to pursue diagnoses.

A diagnosis may identify a dangerous condition. It may lead to effective treatment. It may change medications, physical therapy, surgical decisions, surveillance or prognosis.

But sometimes the thing we’re chasing isn’t treatment anymore.

It’s certainty.

If I can just figure out what this symptom is, I can relax.

If I can just get the right scan, I’ll know.

If I can just see the right specialist, I’ll finally understand.

If I can just connect this last dot, the whole picture will make sense.

Except complex chronic illness rarely works that way.

There is always another dot.

Another symptom.

Another emerging theory.

Another test.

Another specialist.

Another condition discussed in the support group that sounds suspiciously familiar.

The finish line moves.

And sometimes we don’t notice that we’ve spent years running toward it.

When Medicine Becomes Your Full-Time Job

This is where I think overmedicalization deserves a place in the conversation.

That word can sound accusatory, particularly to people who have spent years fighting to have legitimate medical problems recognized.

So let me be clear.

Overmedicalization does not mean your symptoms aren’t real.

It doesn’t mean your diagnoses aren’t real.

It doesn’t mean you don’t need medical care.

You can have EDS, POTS, migraine, GI dysfunction, neuropathic pain, spinal disease and multiple other very real medical problems—and still become overmedicalized.

I think of it less as a diagnosis and more as a state in which medicine begins occupying more and more of the territory of your life.

Symptoms lead to research.

Research leads to suspected diagnoses.

Suspected diagnoses lead to specialists.

Specialists lead to testing.

Testing leads to findings.

Findings lead to consultations.

Consultations lead to treatments.

Treatments sometimes lead to new symptoms.

And those symptoms lead back to research.

Eventually, you are no longer simply a person who receives healthcare.

You are running a small, highly inefficient healthcare corporation out of your kitchen.

Scheduling department: you.

Medical records: you.

Insurance appeals: you.

Research division: definitely you.

Patient transportation: also you.

Emotional support department: currently understaffed.

And the CEO hasn’t had a day off in nine years.

The Diagnostic Domino Effect

There is another uncomfortable reality we don’t talk about enough.

Medical interventions can sometimes create new medical problems.

A procedure may help one problem but alter biomechanics somewhere else. A medication may relieve one symptom while causing another. Surgery can be necessary and successful while still changing the body permanently. Chronic illness itself evolves.

That can create a diagnostic domino effect.

Something hurts.

We identify something.

We treat it.

Something else emerges.

We investigate that.

We find another abnormality.

We treat that.

And eventually the body begins to feel less like a body and more like an endless renovation project.

Anyone who has owned an old house knows how this goes.

You open the wall because the faucet is leaking and discover electrical wiring from 1974, mold, three dead mice and what appears to be a structural beam held together by optimism.

At some point you forget that the original problem was the faucet.

Complex bodies can feel like that.

The difficult question is not whether something abnormal exists.

As we age, and especially in chronically ill bodies, imaging can usually find something.

The better question may be:

Does this finding explain enough of what is happening—and would doing something about it meaningfully improve my life?

That is a very different question from:

Can I find something wrong?

Diagnosis Can Become Emotional Proof

There is something even deeper underneath the search.

Sometimes we aren’t asking a diagnosis merely to explain a symptom.

We are asking it to explain what happened to our lives.

Why did I lose so much function?

Why couldn’t I keep up?

Why did my relationships change?

Why did people stop believing me?

Why did I lose parts of myself?

Why did I spend years suffering while everyone told me I looked fine?

Why am I still struggling after everything I’ve already done?

A diagnosis can begin carrying an enormous emotional burden.

It promises not only an explanation, but vindication.

Maybe even absolution. Validation for sure!

See? This is why.

This proves it.

Now everyone will understand.

Except no diagnosis can carry all of that.

An ICD code cannot give us back the years.

A surgical finding cannot repair every relationship damaged during illness.

An abnormal MRI cannot make everyone who doubted us apologize.

And the next diagnosis will not necessarily provide the emotional closure the last one didn’t.

That realization hurts. Actually it cuts like a scalpel.

Because sometimes what we’re really grieving isn’t the absence of an answer.

It’s the life we thought the answer would restore.

What If Good News Doesn’t Feel Good Anymore?

This may be the question I keep coming back to.

When was the last time a normal test actually made you happy?

Not suspicious.

Not confused.

Not immediately wondering whether they ran the correct test.

Happy.

Thank God. They didn’t find anything dangerous.

Then you let it go. The worry. The anxiety. The fear.

Somewhere along the way, some of us lose that response.

We become so accustomed to fighting for proof that absence of proof begins to feel threatening.

But again, that’s how our brains work with predictive patterning. I’m writing more about that soon.

That moment when you can stop and recognize the pattern you’re in is worth noticing.

Because the goal of healthcare cannot be to accumulate enough diagnoses to finally prove that we were sick.

The goal is to help us live as well as possible in the bodies we actually have.

Those aren’t always the same project.

So Are We Supposed to Stop Advocating?

Hell no! That would be a spectacularly stupid conclusion to draw from everything many of us have lived through.

Keep asking questions.

Seek another opinion when something genuinely doesn’t add up.

Find clinicians who understand your conditions.

Learn enough to participate intelligently in decisions about your own body.

Bring the research.

Know your history.

Challenge assumptions when necessary.

But perhaps self-advocacy needs another skill that we haven’t talked about nearly enough:

knowing when not to escalate.

Maybe mature self-advocacy isn’t simply learning how to fight like a warrior.

Maybe the patient doesn’t have to change to fit the broken system.

Maybe it’s learning how to evaluate when the fight is actually still serving us.

A Few Questions I’m Starting to Ask Myself

I don’t have a magic formula for knowing when enough is enough. I wish I did.

I’m literally preparing for yet another trip far away to see the latest expert who’s finally telling me that I do in fact have occult tethered cord and to do the barbaric neurosurgery. I’m hopeful for relief. But I’m also hoping for certainty.

So my advice is before entering another diagnostic rabbit hole, requesting another consultation or deciding that the fifth physician simply doesn’t understand my condition, maybe we try asking ourselves questions like these:

• What would this diagnosis actually change? Would it alter treatment, safety, function or prognosis—or mainly give the symptom a name?

• What evidence would make me accept that I don’t have the condition I suspect? If the answer is “nothing,” that’s important information about my thinking.

• If the expert says no, can I accept the no? If not, what exactly am I seeking from the consultation?

• Am I researching because I need information or because researching temporarily makes me feel safer?

• Have several competent clinicians independently reached the same conclusion? At what point should that carry weight?

• Is this symptom dangerous, disabling or meaningfully changing—or is it simply uncomfortable and unexplained?

• What is the downside of doing nothing for now? Sometimes watchful waiting is an actual medical strategy, not abandonment.

• How much of my limited energy is this investigation consuming?

• What am I postponing in living my life until I finally get this answer?

• If this test comes back normal, can I allow normal to be good news?

These questions aren’t intended to talk us out of healthcare.

They are intended to put us back in charge of it.

I realize this article might piss you off, make you think or even unsubscribe. But isn’t that the point of getting different perspectives?

There Has to Be a Life Outside My Medical Chart

This may be the part I’m only beginning to understand.

For years, getting answers felt like moving forward.

Sometimes it absolutely was.

But eventually there has to be another definition of forward.

Maybe forward is not another diagnosis.

Maybe it is learning what makes the body feel safer today.

Maybe it is rebuilding strength where we can.

Maybe it is adapting instead of constantly correcting.

Maybe it is pacing, regulating, laughing, connecting, creating, swimming, gardening, traveling, sitting in the sun, calling a friend, loving somebody, making something, or doing whatever reminds us that we are human beings rather than collections of malfunctioning connective tissue.

And yes, we may have to do those things while something still hurts.

That is perhaps the cruelest part.

We may never get every answer.

There may always be a symptom nobody can explain.

There may always be something slightly weird on an MRI.

There may always be another specialist we could see.

There will almost certainly always be another PubMed paper.

At some point we have to decide how much of our remaining life we’re willing to spend trying to completely understand the body before we allow ourselves to live inside it.

Maybe We Need a New Definition of “Don’t Give Up”

The chronic illness community has needed the warrior-style battle cry: Don’t give up.

It helped many of us survive systems that were not built for bodies like ours.

But perhaps we have interpreted it too narrowly.

Don’t give up doesn’t necessarily mean:

Keep searching.

Keep testing.

Keep escalating.

Keep proving.

Keep fighting until somebody finally agrees.

Maybe it can also mean:

Don’t give up on your life while you’re trying to save your body.

Don’t give up on joy because you haven’t figured out the pain.

Don’t give up on relationships because nobody else can fully understand your experience.

Don’t give up on curiosity that has nothing to do with medicine.

Don’t give up on becoming somebody beyond the patient you’ve had to become.

And maybe—this is the hardest one—don’t give up on the possibility that occasionally a doctor saying “I don’t see anything dangerous here” really is good news.

We learned vigilance because sometimes vigilance was necessary.

We learned research because information gave us power.

We learned persistence because persistence occasionally got us answers when nobody else would look.

Those skills deserve respect.

But survival skills aren’t supposed to become life sentences.

Perhaps healing, in whatever form is available to us, eventually requires learning something medicine never taught us:

how to recognize when the search is helping us—and when the search itself has become another thing we need to recover from.

If this touched a nerve, maybe forward to a friend who might be feeling same.

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Coming next: What Happens to the Doctors We Finally Find?

Because there is another side to this strange ecosystem.

After years of searching, researching, waiting and refusing to give up, sometimes we finally find the doctor.

The one who gets it.

So naturally, we tell every zebra we know.

And then something else starts happening.

The six-month waiting list becomes twelve. Then eighteen. The inbox explodes. Complex patients arrive carrying ten years of unanswered questions. Then the physician stops accepting new patients, stops taking insurance, switches to concierge care, burns out—or disappears from the field altogether.

So Part Two asks the mirror-image question:

What happens to the good doctors after all of us finally find them?

Subscribe to find out.

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Well, friends, medical research has once again arrived to examine one of the few scraps of joy we had left and ask whether we are doing it safely.

This time, it is not coffee, salt, naps, sunshine, cheese, or the precise number of steps required to qualify as a morally acceptable mammal.

It is music in the car.

More specifically, it is the sacred tradition of turning the driver’s seat into a one-person arena tour while performing choreography that relies heavily on shoulders, eyebrows, and one hand briefly leaving the steering wheel because the chorus simply demanded more from us.

According to Everyday Health’s report on a newly published study, major album releases may be associated with an increased risk of fatal crashes. The headline-ready interpretation is basically: Pop music could be dangerous, so please stop dancing and driving.

That is both catchy and a little unfair to dancing.

The actual science is more interesting. It is less “Taylor Swift has seized control of your motor vehicle” and more “humans should probably stop operating three glowing screens while traveling 70 miles per hour.”

Interesting read on why ADHD impacts your ability to drive.

The latest episode of What Were Researchers Even Doing When They Thought of This?

The study, published August 17, 2026, in JAMA Network Open, examined what happened on the release dates of the ten most-streamed albums in the United States between 2017 and 2022. The list included albums by Taylor Swift, Drake, Bad Bunny, Kendrick Lamar, Harry Styles, Kanye West, and others. In other words, researchers did not test smooth jazz played quietly by a man named Gerald while he observes every traffic law. They looked at musical events big enough to make millions of people reach for their phones at once.

The researchers compared each album-release day with the ten days before and the ten days after it. They used Spotify streaming numbers to confirm that something unusual really did happen on those dates, then compared those dates with federal data on fatal crashes.

On major album-release days, daily streams jumped from an average of 86.1 million to 123.3 million. That was a 43 percent increase in streaming.

On those same days, the adjusted number of U.S. traffic fatalities rose from an average of 120.9 to 139.1. That was an increase of 18.2 deaths per release day, or 15.1 percent. Across the ten release dates studied, the researchers estimated approximately 182 additional fatalities.

That is no longer funny. It is a very large human cost hiding behind a very ordinary act: “Wait, let me find the new album.”

The full study is here: Patel VR, Worsham CM, Liu M, Jena AB. “Smartphones, Online Music Streaming, and Traffic Fatalities.” JAMA Network Open. 2026;9(8). DOI: 10.1001/jamanetworkopen.2026.29282.

Before we confiscate everyone’s steering-wheel tambourine

This study did not prove that listening to pop music causes crashes. It did not place people in driving simulators, play a Harry Styles album, and measure how many traffic cones were harmed during the bridge.

It also did not know whether the people involved in fatal crashes were streaming music at the time. The crash database does not contain a box labeled, “Driver was attempting to locate track seven while also singing track three.”

What the researchers found was an association: On days when major new albums caused an enormous rise in streaming, fatal traffic crashes also rose. Their statistical methods adjusted for factors including the day of the week, federal holidays, season, and year. Because albums tend to drop on Fridays, they also compared release Fridays with nearby Fridays. The finding remained.

The study design cannot identify the exact culprit. It might be drivers handling phones, scrolling through track lists, touching infotainment screens, turning up the volume, becoming absorbed in unfamiliar music, or combining all of these activities into one terrible little multitasking casserole.

The researchers are reasonably pointing toward distraction, not indicting the bass line.

The clues are wearing sequins and pointing at the dashboard

The pattern beneath the numbers makes the distraction explanation more plausible. The increase in fatalities was larger among younger drivers, male drivers, and people driving alone. It was also more pronounced in crashes involving sober drivers, clear weather, and cars equipped with infotainment systems.

That last finding deserves a small, exhausted laugh. We installed enormous touchscreens in vehicles so we would not have to touch our phones. We then apparently created a larger, shinier phone in the middle of the dashboard.

My car would now like me to navigate six menus to adjust the temperature. The old car had a knob. The knob did not require a software update, collect my preferences, or suggest a podcast while I was merging.

The single-occupant finding also makes sense. A passenger can serve as the designated DJ, handling the phone, locating the album, skipping the seventeen-minute experimental interlude, and accepting full responsibility when the playlist suddenly produces yacht rock. A solo driver has no such staff.

Clear weather may lower our guard too. When rain is pounding the windshield, most of us understand that driving deserves our full attention. When the sky is blue and traffic is moving, the brain starts whispering, “This seems like an excellent time to reorganize your Spotify library.”

The brain is not always the manager we deserve.

Why this lands differently in Zebra Land

For many people with chronic illness or disability, the car concert is not trivial. It may be one of the few places we can dance without standing up, paying admission, tolerating a crowd, or discovering that the venue has interpreted “accessible seating” as a folding chair beside a trash can.

When POTS, pain, unstable joints, fatigue, sensory overload, or gravity itself has declined to participate constructively, seated dancing can be wonderfully accessible. The hips may file a complaint, the neck may request a smaller movement, and the shoulders may be working under a restricted contract, but for three minutes and forty-two seconds we are not managing symptoms. We are simply in the song.

Music can change the emotional temperature inside a car. It can energize us before an appointment, soothe us after a dismissive one, or help us discharge the particular rage produced when a specialist says, “Have you tried reducing stress?” after we waited nine months to see them.

So no, I am not surrendering the car concert.

I am relocating its production office.

This study did not specifically examine people with EDS, POTS, chronic pain, migraine, brain fog, medication effects, or fatigue. We should not invent a Zebra conclusion the researchers did not study. Still, many of us already use precious cognitive bandwidth monitoring dizziness, pain, visual symptoms, temperature, positioning, and whether our hands are beginning to go numb. It is reasonable to remove an avoidable task from that crowded control room.

We may not have less intelligence. We may simply have more browser tabs open, and at least four of them are frozen.

The official Zebra driving playlist protocol

Here is my highly scientific interpretation of the new advice:

1. Choose the music before the car moves. Pick the album, playlist, or podcast while parked. Hit play. Put the phone where you will not be tempted to conduct a tiny search committee at the next intersection.

2. Appoint a passenger DJ whenever available. This person controls music, navigation, temperature, and emergency snack deployment. Please thank them for their service, even when their transitions lack artistic vision.

3. Let an imperfect song finish. If the algorithm serves something annoying, you do not have to correct the universe immediately. You have survived medical prior authorization. You can survive three minutes of adult contemporary.

4. Do not film the concert. Your performance may be transcendent. The internet will endure without footage of it until you are parked.

5. Keep the choreography above the dignity line. A little singing and gentle shoulder shimmying are not what this study tested. But if your dance move interferes with seeing, steering, braking, or noticing the enormous truck beside you, save the deluxe choreography for the driveway.

6. Treat brain fog, migraine aura, severe fatigue, faintness, visual trouble, and sedating medication as real driving concerns. Music is only one possible demand on attention. Sometimes the safest choice is not a calmer playlist. It is not driving right then.

7. If you must change something, pull over safely. A new album will remain new for several more minutes. The artist will understand. They have people.

So, are we really being told not to dance and drive?

Not exactly.

The research does not prove that bopping your head caused a crash or that pop music belongs in the same locked cabinet as controlled substances. It does give us a strong and sobering signal that the release-day frenzy around new music, especially the phone handling and screen interaction it invites, may be adding danger to the road.

The practical lesson is refreshingly simple: Prepare the entertainment before operating the two-ton machine.

Keep singing. Keep using music to lift your mood, regulate your nervous system, survive traffic, and recover from appointments that should have been emails. Keep dancing in the car when it is parked, where you may safely deliver the full seated choreography, including facial expressions, backup vocals, and the dramatic hand-to-heart movement during the final chorus.

But once the car is moving, let the playlist be. Eyes up. Hands ready. Shoulders on modified duty.

We have already been told not to sit too long, stand too quickly, sleep incorrectly, drink plain water, eat anything enjoyable, or possess a nervous system with opinions.

Fine. We will accept one more medical recommendation.

Don’t dance and drive.

Or, at the very least, appoint a designated DJ.

Sources

• Everyday Health: “Pop Music Could Raise Risk of Serious Car Crash”

• Patel VR, Worsham CM, Liu M, Jena AB. “Smartphones, Online Music Streaming, and Traffic Fatalities.” JAMA Network Open. 2026;9(8)

• Harvard Gazette: “Can’t Wait to Listen? You Should.”

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Lately, I’ve been sitting with a question that feels almost as complicated as my medical history:

What the hell do I do with all of this now?

The decade-plus of EDS research. The bookmarked studies, saved articles, spreadsheets, medical records, support groups, and enough acronyms to qualify as my own alphabet agency. The books I’ve written, the resources I’ve collected, and the countless hours I’ve spent learning how to navigate a medical system that often seems as confused about my body as I am.

I’ve spent more than a decade building a library of knowledge about Ehlers-Danlos syndrome, chronic illness, and patient advocacy. Some of it was born from desperation, some from curiosity, and much of it from wanting to make the journey easier for the next person who finds themselves lost in the medical wilderness.

I’m proud of that work. I don’t regret it, and I’m certainly not suggesting we stop advocating for ourselves or each other.

But lately, I’m wrestling with something unexpected.

Who am I when I’m not being the EDS person?

The author. The advocate. The researcher. The explainer. The person people turn to when their joints go rogue or their doctors start speaking fluent dismissal.

Somewhere along the way, EDS stopped being something I had and became something I organized much of my life around.

And while that identity gave me purpose, community, and a way to turn suffering into something useful, I’m beginning to wonder whether it’s time to make room for more of me.

Not a replacement identity. An expanded one.

Because I don’t want my medical history to become my entire biography.

I want to figure out how to carry everything I’ve learned without letting it carry me.

And that question brought me back to one of the most profound books I’ve ever read: Man’s Search for Meaning by Viktor Frankl.

First, a Disclaimer Before Someone Throws Their Compression Socks at Me

Let’s establish something important.

EDS is real. Chronic illness is real. Disability is real. Pain, grief, medical trauma, and the losses that accompany them are very real.

This is not another lecture about choosing happiness, manifesting wellness, or pretending your autonomic nervous system will behave if you just purchase the right gratitude journal.

If positive thinking could cure EDS, we’d all be doing fucking cartwheels by now. Well, perhaps not cartwheels. We’ve already demonstrated entirely too much flexibility.

What I’m exploring is something different: the possibility that we can acknowledge everything illness has taken from us without allowing it to define everything that remains.

Because there’s a difference between having an illness that shapes your life and allowing that illness to become the only story you tell about yourself.

And sometimes that distinction gets lost somewhere between the third specialist appointment and your 47th browser tab about obscure neurological symptoms.

The Man Who Discovered Freedom Where There Was None

Viktor Frankl was an Austrian neurologist and psychiatrist who survived Nazi concentration camps during the Holocaust.

His extraordinary book, Man’s Search for Meaning, explores his experiences as a prisoner and the psychological insights that shaped his approach to finding meaning in life. And yes, I love to read all kinds of books that expand my horizons and allow me to feel the human experience fully.

Frankl was imprisoned under conditions of unimaginable cruelty and deprivation. Prisoners were stripped of their possessions, clothing, autonomy, safety, and dignity. Their days were dictated by guards, forced labor, starvation, and the constant threat of death.

They couldn’t choose what to eat, where to sleep, when to rest, or whether they would see their loved ones again.

Everything that ordinarily gives a person a sense of control had been taken away.

And yet Frankl began to recognize something remarkable.

Even when nearly every external freedom had been stripped away, he believed there remained a deeply personal capacity: the ability, at least at times, to choose one’s attitude toward circumstances that could not be changed.

He described it as the last of the human freedoms.

Not the freedom to escape suffering. Not the power to make terrible circumstances disappear. But the possibility of finding meaning and deciding how to meet suffering when escape was impossible.

It’s important not to romanticize this. The Holocaust was an atrocity, and survival was not simply a matter of maintaining the right attitude. Frankl’s observations were philosophical and deeply personal, not proof that optimism determines who survives.

But his insight into human meaning remains powerful.

He described drawing comfort from thoughts of his wife, imagining conversations with her and remembering the love they shared. He noticed fleeting moments of beauty, including sunsets, even amid terrible conditions. He imagined himself someday lecturing about the psychology of the concentration camps, giving his suffering a possible future purpose.

These experiences didn’t change his circumstances. They helped him preserve a connection to something beyond them.

He couldn’t always choose what happened to him. But he searched for ways to remain connected to who he was and what mattered to him.

And that’s the part I keep coming back to.

The Last Human Freedom Meets the Zebra Herd

Let me be very clear: living with EDS is not comparable to surviving the Holocaust. The historical circumstances and suffering are profoundly different. But Frankl’s philosophy raises a question relevant to anyone living with circumstances they cannot simply wish away:

When we cannot control what is happening to us, where can we still find choice, purpose, and meaning?

Chronic illness takes plenty without asking permission. It can take careers, relationships, financial stability, independence, spontaneity, physical abilities, and the future we once imagined.

It can make something as simple as going out for lunch feel like coordinating a military operation involving hydration, medication, transportation, weather forecasts, accessible seating, and the nearest bathroom.

And that’s before we’ve decided what to order off the menu if it even meets our dietary restrictions.

When so much of life requires planning around illness, it’s understandable that illness becomes the center of our attention.

We become experts in our own survival.

But sometimes the survival skills that helped us get through the hardest years become habits we no longer know how to set aside.

And that’s where something I call zebra identity creep begins.

Identity Creep: When EDS Moves In and Takes Over the Lease

Identity creep doesn’t usually announce itself.

There’s no formal eviction notice from your former personality.

It starts innocently enough.

You develop symptoms. You search for answers. Doctors dismiss you, so you become your own investigator. You join support groups, learn medical terminology, study research, and begin connecting with people who understand your experience.

Eventually, you know more about connective tissue than you ever wanted to know.

You can explain dysautonomia at dinner parties. You know the difference between a subluxation and a dislocation. You have strong opinions about compression garments, cervical instability, and electrolyte flavors.

You may even become the unofficial medical consultant for every hypermobile person within a 50-mile radius.

And then something subtle happens.

Your hobbies become medical research. Your social circles become illness communities. Your conversations revolve around symptoms, specialists, and treatment options. Your future becomes a series of appointments, procedures, and potential diagnoses.

You begin measuring your days almost exclusively by how your body behaved.

And the question quietly changes from How do I live with EDS? to How do I live as someone whose entire world revolves around EDS?

Here’s the uncomfortable truth:

Sometimes the very identity that helped us survive can become too small for the life we still want to live.

That doesn’t make our advocacy misguided or our illness less serious. It simply means we may need to make room for other parts of ourselves.

Even Advocacy Can Become a Comfortable Cage

This is the part that hits closest to home for me.

I’ve spent years helping people navigate the medical maze. I’ve written books, created resources, shared research, and tried to translate complicated medical information into something useful.

That work matters deeply to me.

But when you’ve built a purpose around your illness, stepping away from it—even temporarily—can feel strangely uncomfortable.

If I’m not researching, writing, educating, or advocating, what exactly am I supposed to be doing?

Apparently, normal people have hobbies that don’t involve PubMed.

Who knew?

I’ve started asking myself whether I can continue contributing to the EDS community without constantly immersing myself in everything that’s wrong with our bodies.

Can I share the resources I’ve collected without feeling responsible for keeping up with every new study, treatment, controversy, and medical development?

Can I care deeply about this community without making it my entire emotional landscape?

And perhaps the biggest question:

Can I allow myself to enjoy a life that isn’t always focused on fixing the one I have?

I don’t have all the answers yet.

But I’m beginning to think that stepping away from the constant investigation doesn’t mean abandoning the mission.

Maybe it means creating enough breathing room to remember why the mission mattered in the first place.

We were fighting so hard to get answers because we wanted our lives back.

It would be a shame to spend the rest of those lives doing nothing but searching.

The Difference Between Having an Illness and Becoming One

There’s an important distinction between acknowledging your reality and allowing it to define your entire identity.

Consider these two statements:

“I have EDS, and it affects many parts of my life.”

“EDS is my life, and everything I do revolves around it.”

The first acknowledges reality.

The second may reflect a season of necessary survival, but it can also become an identity that leaves little room for anything else.

And identity matters because the stories we tell ourselves influence what we notice, what we attempt, and what possibilities we consider.

If we begin to believe we’re only patients, we may overlook opportunities to be artists, friends, partners, mentors, adventurers, comedians, gardeners, students, or simply people who enjoy an afternoon without discussing their connective tissue.

Of course, sometimes symptoms and disability genuinely limit those opportunities. Reclaiming identity doesn’t mean ignoring those limitations or pretending they’re optional.

It means remembering that our limitations describe some of our circumstances, not the totality of our humanity.

You can be disabled and creative.

Chronically ill and curious.

Exhausted and funny.

In pain and still capable of experiencing pleasure, connection, or purpose.

You can be a zebra without spending every waking moment grazing in the medical pasture.

What Nelson Mandela and Stephen Covey Added to the Conversation

Frankl wasn’t the only person to explore the power of choosing one’s response to circumstances.

Nelson Mandela spent 27 years imprisoned under South Africa’s apartheid system. Following his release, he became a central figure in the country’s transition toward democracy and reconciliation.

His story demonstrates that a person can experience profound injustice without allowing that injustice to dictate every future choice.

Mandela’s commitment to reconciliation didn’t erase what happened to him, nor did it require pretending that the harm was acceptable.

It reflected a decision about what kind of future he wanted to help create.

Stephen Covey explored a related principle in The 7 Habits of Highly Effective People, particularly the habit of being proactive rather than simply reactive.

The basic idea is that circumstances influence us, but they don’t always determine our responses. We can learn to notice our automatic reactions and consider whether another response might better serve our values.

Modern psychological approaches such as Acceptance and Commitment Therapy (ACT) also explore how people can make room for difficult experiences while taking actions aligned with what matters to them.

The point isn’t that we have unlimited control over our thoughts, emotions, or nervous systems. We don’t. Trauma, pain, illness, and stress can make responding intentionally much harder.

But we can sometimes develop more flexibility in how we relate to those experiences.

And for a group of people famous for having too much physical flexibility, perhaps a little psychological flexibility could actually come in handy.

Finally, a form of hypermobility we might want to cultivate.

You Don’t Have to Turn Every Symptom Into a Story About Your Future

One of the most exhausting things about chronic illness is how easily today’s symptoms can become tomorrow’s predictions. And your brain knows that too and it can get stuck there.

A new pain appears, and suddenly we’re wondering whether another joint is deteriorating.

A flare lasts longer than expected, and we start imagining what our lives might look like five years from now.

A disappointing appointment becomes evidence that we’ll never find answers.

Sometimes these concerns are reasonable. New or worsening symptoms may genuinely require medical attention.

But other times, our minds are doing what they’ve learned to do after years of uncertainty: scanning for danger, anticipating problems, and trying to protect us from being blindsided again.

The trouble is that a brain trained to anticipate medical emergencies doesn’t automatically know when it’s allowed to enjoy an ordinary Thursday.

This is something I’m actively trying actively to unwind in my own life.

I want to become better at distinguishing between situations that require investigation and those that simply require me to live alongside uncertainty.

I don’t want to interpret every physical sensation as the opening chapter of another medical mystery.

And I certainly don’t want my entire future defined by what might go wrong.

Frankl’s philosophy offers a useful reminder here: We may not get to choose every circumstance, but we can sometimes choose the meaning we attach to it.

A difficult day doesn’t automatically mean a hopeless future.

A limitation doesn’t erase every possibility.

And a diagnosis doesn’t have to become the title of every chapter that follows.

Reclaiming Yourself Without Abandoning Your Reality

So what does reclaiming identity actually look like when you’re still chronically ill?

It doesn’t mean throwing away your braces, deleting your medical records, or pretending you’re suddenly ready for a triathlon.

Please don’t. Your physical therapist has enough to deal with.

It means looking for small ways to reconnect with the parts of yourself that illness has pushed into the background.

1. Remember who you were before everything became medical

What did you enjoy before your days revolved around symptoms and appointments?

Music? Writing? Cooking? Travel? Comedy? Animals? Art? Learning something entirely unrelated to anatomy?

Some activities may no longer be accessible in the same way. That’s a real loss worth grieving. But perhaps there’s an adapted version, a new interest, or a completely different experience waiting to be discovered.

2. Give yourself permission to stop researching sometimes

Medical information can be empowering, especially when you’ve experienced dismissal or inadequate care. But there comes a point when more information isn’t necessarily helping.

Consider asking yourself:

Am I researching because I need to make a decision, or because searching has become my way of coping with uncertainty?

If it’s the latter, perhaps you can take a break without feeling guilty. PubMed will still be there tomorrow. Trust me. It never sleeps.

3. Expand your conversations beyond illness

Our illness communities can be lifelines. They’re often the first places where people truly understand what we’re experiencing. But we also deserve conversations that aren’t about pain, diagnoses, or healthcare frustrations.

Talk about terrible television. Share ridiculous memes. Discuss books, music, relationships, and whatever celebrity scandal is currently occupying the internet.

Be interested in something simply because it’s interesting.

4. Make plans based on meaning, not just medical necessity

When chronic illness takes over, our calendars can become monuments to maintenance. Appointments. Treatments. Therapy. Lab work. Recovery days. All necessary, perhaps, but hardly the stuff of a thrilling autobiography.

Try putting something on the calendar because it matters to you emotionally, creatively, socially, or spiritually. It might be small. It might require accommodations. It might need to be rescheduled. It still deserves a place.

5. Ask a different question about your future

Instead of only asking, How can I get better?

Try asking:

How can I make my life better, even while I’m dealing with this?

Those aren’t competing goals.

You can pursue treatment and pursue happiness.

You can advocate for better care and invest in relationships.

You can hope for physical improvement without postponing every meaningful experience until it arrives.

What I’m Trying to Choose Next

I’m still figuring this out.

I have a mountain of EDS resources gathered over more than a decade, and I want that knowledge to continue helping people.

But I also want to spend more of my time exploring what brings me joy, connection, curiosity, and purpose outside the medical world.

I want to write about things beyond illness. Laugh about things that have nothing to do with malfunctioning joints. Make new memories that aren’t associated with a hospital bracelet.

I want to be more than the person who knows how to navigate the healthcare system.

Because frankly, that system has already received an unreasonable amount of my attention, money, and emotional energy.

And I’m starting to think it doesn’t deserve exclusive rights to the rest of my life.

This isn’t a declaration that I’m done with EDS advocacy. Far from it.

It’s an acknowledgment that I can honor the person my illness forced me to become while making room for the person I still want to be.

Perhaps that’s what redefining ourselves really means.

Not erasing our experiences, but refusing to let them become the boundaries of our imagination.

The Last Human Freedom Is Still Yours

Frankl’s work reminds us that meaning isn’t necessarily something we find after suffering ends.

Sometimes it’s something we discover, create, or reconnect with while life remains complicated.

We cannot always choose our circumstances. We cannot always choose our emotions, our physical abilities, or the limitations illness imposes.

And there will be days when simply getting through is enough.

But within those constraints, there may still be opportunities to choose what deserves our attention, what relationships we nurture, what values guide us, and what kind of life we continue trying to build.

Not every day. Not perfectly. And certainly not without grief.

But sometimes.

And sometimes is enough to begin.

You are not your diagnosis. You are a whole person having an experience with a diagnosis.

Your illness may be a major character in your story. It may even have hijacked several chapters, rewritten the plot, and demanded an outrageous production budget.

But it doesn’t have to be the only character.

You still get to introduce new ones.

You still get to explore different storylines.

You still get to imagine a future with more than medical appointments on the calendar.

And you don’t have to wait until you’re healthy to begin.

Your illness may have changed the plot. It doesn’t get exclusive rights to the author.

A Little Zebra Soul-Searching

If this resonates, I’d love for you to consider three questions as I am if you’re ready:

1. What part of your identity has chronic illness pushed into the background? Is there something you miss about yourself that you’d like to reconnect with?

2. Where might you be giving illness more attention than it actually needs? Not medically necessary care, but the endless mental energy devoted to researching, anticipating, and worrying.

3. If your diagnosis wasn’t the headline of your next chapter, what would you want that chapter to be about?

You don’t need a grand reinvention or a five-year plan. Maybe you just need an afternoon doing something that reminds you there’s still a whole person underneath the compression socks.

I’d love to hear your thoughts in the comments, especially from those of you who have spent years building your lives around chronic illness.

Have you experienced identity creep? And what parts of yourself are you hoping to reclaim?

Stay Underground With Us 🦓

At Zebras Underground, we’re expanding the conversation beyond surviving chronic illness to finding humor, hope, connection, and meaning while living with it.

Expect science without the snooze, advocacy without the overwhelm, and enough sarcasm to make the medical absurdities a little more bearable.

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Further Reading

• Viktor E. Frankl — Man’s Search for Meaning. A foundational exploration of meaning, suffering, and human freedom.

• Stephen R. Covey — The 7 Habits of Highly Effective People. Particularly Habit 1, “Be Proactive.”

• Russ Harris — The Happiness Trap. An accessible introduction to Acceptance and Commitment Therapy, psychological flexibility, and values-based living.

• Nelson Mandela — Long Walk to Freedom. His autobiography exploring imprisonment, resistance, leadership, and reconciliation.

Note: Frankl’s reflections are philosophical insights drawn from extraordinary suffering, not a clinical claim that attitude determines survival or recovery. Chronic illness and disability impose real constraints, and finding meaning does not require minimizing them.

I went in expecting a musical introduction and maybe a shared jam. I came out thinking about generational silence. Apparently, this is what happens when you let your adult child control the playlist: you acquire new music and an unexpected emotional renovation.

Their sound moves between rock, rap, pop, electronic music, and quieter moments that feel almost confessional. To my ears, it’s rock poetry about the struggle of being inside your own head, wrapped in music so compelling you want to play it again. You can be moving to the beat before realizing the song has located a feeling you’ve spent years trying to explain.

And I keep thinking: What would it have meant to grow up with this kind of permission?

We had feelings. We just weren’t supposed to discuss them.

For many of us, the emotional education available growing up 40+ years ago was remarkably brief: stop crying, don’t be so sensitive, think positive, and please don’t tell anyone about the family problems.

Anxiety could be dismissed as worrying too much. Depression could become an accusation of laziness or ingratitude. Being overwhelmed meant you needed to get yourself together, preferably before company arrived. Just being too sensitive or plainly too much.

We learned to function. We learned to hide. Sometimes we became so good at performing “fine” that we couldn’t recognize our own distress until it started making decisions for us.

Of course, our generation had meaningful music, too. Artists have always sung what people couldn’t say. But in many homes, the permission ended when the song did. You could sing about falling apart in the car; discussing it at the dinner table was another matter.

What I appreciate about younger generations is the language many now have available about their own mental health: anxiety, boundaries, emotional regulation, intrusive thoughts, asking for support. Access is still uneven, and knowing the vocabulary doesn’t automatically make life manageable. Still, having words gives you a starting point beyond I guess something is wrong with me.

Today, they can learn skills we often had to discover much later: recognizing a spiral, naming a feeling, asking someone to listen, or seeking help before everything becomes unbearable.

I’m grateful for that. I wish we’d had more of it.

Four Twenty One Pilots songs that helped me hear the difference

These are my reflections as a listener, rather than a claim that each song has one fixed meaning. That’s part of the gift of music: it leaves room for your own life to enter.

“Drag Path”: wanting someone to find you
I hear the image of a trail left behind as a longing for someone to recognize the struggle and follow it back to you. That resonates deeply with me and my chronic illness: the wish that someone could see the effort and damage it leaves behind, even when you can’t explain it neatly to those who don’t believe it’s real or understand the impact. The song has also inspired listeners to share memories and experiences that left an emotional mark on their lives. (people.com). What I also find very intriguing is their video on this tune and how they portray what I see as how a change in perspective might change everything. Check it out on YouTube and watch the entire thing.

“Vignette”: when the edges start closing in
A visual vignette darkens the edges of an image. Listening to this song, I think about how struggle can narrow your world until it becomes difficult to see beyond it. What stays with me is the tension between being pulled under and continuing to resist that pull. Sometimes that’s what a hard day feels like: trying to keep a little space open for yourself.

“Ride”: a catchy song with a very busy mind
There’s something almost mischievous about music that sounds so buoyant while making room for overthinking and unsettling questions. “Ride” brings those together in a way that invites reflection on difficult thoughts and who we can reach toward for help. A mental health discussion guide even uses the song as a conversation starter. Existential distress apparently travels quite well with a good beat. Check out a worksheet designed to help align the song to your own sanity here cannabisandmentalhealth.ca.

“Routines in the Night”: the brain’s after-hours walking tour
I hear this as a song for anyone whose body goes to bed while their mind starts wandering through familiar, uncomfortable rooms with “stay out” painted on them. It evokes that private nighttime world where thoughts repeat and memories become unusually available. If your brain has ever scheduled a comprehensive review of your life at 2:13 a.m., you may recognize the atmosphere. (twentyonewiki.info)

My personal favorite song of theirs that resonates with me and my chronic illness experience is titled “Garbage” and you might love the lyrics and the tempo too. Give a listen on Spotify.

What connects all of these songs for me is their willingness to stay with difficult feelings long enough to make something out of them. The struggle becomes speakable. Sometimes, wonderfully, it becomes singable and worthy of jam session all by yourself.

Thank you for letting me listen

I don’t assume younger people have it easier. They face pressures of their own, and openness doesn’t guarantee understanding or access to care. But I’m grateful that more of them can have conversations older generations often discouraged—or outright forbidden—from having.

And I’m grateful to my daughter for sharing something she loves. When our children bring us their music, it’s easy to hear only a difference in taste. Sometimes they’re offering a way to understand what moves them, what comforts them, and what makes them feel less alone. We don’t have to decode every lyric or master an entire fictional universe to accept that invitation. We can just enjoy what they enjoy through music and lyrics that spoke to them.

For those of us living with chronic illness, that kind of recognition matters. We spend enough time translating invisible experiences into language other people might believe or just be able to hear. Hearing someone give emotional struggle a rhythm, an image, and a place to belong can feel like setting down a heavy bag.

So thank you to the musicians like Twenty One Pilots who make room for these conversations, and to the next generation for continuing them. There’s a reason they’re a wildly popular band with the young and the old.

Thank you to my daughter for letting me into her soul soundtrack. I’m glad you have words for things we were taught to swallow. I’m still learning how to let that part of my past be allowed to come up without getting stuck in my throat. But I’m doing the work, as are you, and all of us in our own ways.

Let me know in the comments if you like the band and what touches you.

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If you’ve followed me through Zebras Underground, you know I’ve spent years writing about the complicated realities of living in a complicated body: diagnoses, doctors, dismissal, symptoms, science, advocacy, and the exhausting work of trying to get healthcare to understand us.

I’m not leaving that work behind.

But I want to go somewhere deeper.

Seen & Soothed is a new space where I want to explore what happens underneath all that doing, searching, surviving and advocating. What happens inside our emotional responses and how our body stores it.

What happens to a nervous system that has spent years on alert? What happens when medical trauma gets layered onto childhood wounds, chronic pain, uncertainty, loss and not being believed? How might adverse childhood experiences, or ACEs, chronic stress and our earliest relationships shape the ways our brains and bodies learn to respond to threat? And what does the science actually tell us about the connections among stress physiology, inflammation, pain, autonomic regulation and health?

Importantly, this will not be a place where we blame trauma for every illness or tell sick people they could heal themselves if they just regulated their nervous systems hard enough. Biology is complicated. Genetics, connective tissue, immune function, infection, environment and countless other factors matter. ACEs and chronic stress are associated with increased risks for a range of later health problems, but risk is not destiny, and association is not proof that trauma caused any one person’s disease.

I want this space to live inside that nuance.

We’ll talk about people like Gabor Maté (as outlined below) and the ideas that resonate deeply, while also examining where science supports them, where it is still emerging, and where claims deserve more caution. We’ll explore trauma, attachment, ACEs, nervous-system regulation, neuroplasticity, boundaries, self-compassion, identity and what it means to live in a body that may have become extraordinarily practiced at protecting us.

Because perhaps healing isn’t only about asking:

What diagnosis do I have?

Sometimes it is also about asking:

What has my body lived through? What did it learn? What is it still protecting me from? And what might help it feel safer now? As Oprah says, “What happened to you?”

Zebras Underground has been largely about learning to navigate life in a body that doesn’t follow the rules.

Seen & Soothed is about learning how to come home to that body and feeling seen and soothed and more importantly - safe.

Not to fix it.

Not to blame it.

But to understand it. Awareness is the first step in healing. The saying goes, “If you can see it, you don’t have to be it.”

Why? To see what happened, recognize what helped us survive, and gently discover what we no longer have to carry.

That is where I want to go next.

Deeper than symptoms. Deeper than diagnoses. Into the complicated territory where body, brain, story and human connection meet. Well beyond diagnoses like EDS, POTS or long COVID, etc.

Welcome to Seen & Soothed.

Enjoy the first article below on self-compassion in trauma.

Maybe Nothing Is Wrong With You

Gabor Maté, the wounds we carry, and the radical compassion of understanding why we became who we had to become

There is a question many of us have spent years trying to answer:

What is wrong with me?

Why am I so sensitive?

Why do I freeze when someone is angry?

Why do I apologize when I haven’t done anything wrong?

Why do I take care of everyone else and then collapse alone?

Why can’t I say what I need until I’m practically choking on the words?

Why does my body react as if something terrible is happening when my rational brain knows I am safe?

And perhaps the cruelest one:

Why can’t I just get over it?

I recently listened to Gabor Maté speak about compassion in therapy, and somewhere in the middle of his discussion about trauma, childhood, the body and the ways we learn to survive, he offered a different question.

Not:

What’s wrong with you?

But essentially:

What happened to you, and what did you have to do to survive it?

That is a very different doorway.

And for some of us, it may be the doorway home.

Trauma Isn’t Only What Happened

One of Maté’s central ideas is deceptively simple shared in his expert books.

The traumatic event is what happened.

The trauma is what happened inside of us because of it.

The word trauma itself comes from the idea of a wound.

That distinction matters.

Because two people can experience frightening, painful or destabilizing circumstances and carry them differently. The event matters enormously, of course. But Maté asks us to look beyond the biography of what happened and toward the wound it left behind.

Sometimes those wounds come from the things everyone recognizes as trauma.

Abuse. Violence. Neglect. Loss.

But sometimes they come from quieter places.

A child whose emotions were inconvenient.

A child who learned that anger caused trouble.

A child who received affection when she was pleasing, successful, quiet or helpful.

A child living with a stressed, overwhelmed or emotionally unavailable parent.

A child who discovered that keeping everyone else happy made the room feel safer.

Nothing necessarily had to explode.

Sometimes a child simply learned:

There isn’t room here for all of me.

And so she began making herself smaller.

The Impossible Choice a Child Doesn’t Know She’s Making

Maté frequently writes and speaks about the tension between attachment and authenticity.

Children need attachment. Its safety in it’s most basic form - emotionally and physically.

They need caregivers. They need belonging. They need the people around them to keep feeding, protecting and loving them. Nurturing is the ideal.

Authenticity is different.

Authenticity is the ability to know what we feel, recognize what we need and express who we actually are.

Ideally, children get both.

But what happens when being fully yourself threatens connection?

A child can’t pack a suitcase and announce:

This family system isn’t meeting my emotional needs. I’ll be relocating until you’ve all completed therapy.

She adapts.

Maybe she stops crying.

Maybe she becomes funny.

Maybe she becomes invisible.

Maybe she becomes spectacularly competent.

Maybe she becomes the peacemaker.

Maybe she learns to read everyone’s mood before she even notices her own.

Maybe she becomes nice.

Very, very nice.

And everyone compliments her for it.

What nobody realizes is that sometimes the world’s most agreeable adult began as a child trying desperately not to make the emotional weather worse.

When Survival Starts Looking Like Personality

This may be the part of Maté’s message that landed hardest for me.

What if some of the things we have spent decades calling our personality are actually old survival strategies?

The caretaker.

The perfectionist.

The fixer.

The one who never asks for anything.

The one who cannot tolerate disappointing anyone.

The one who over-explains and over-functions.

The one who senses a microscopic change in someone’s tone and immediately wonders:

What did I do?

We may have practiced these behaviors for so long that they feel indistinguishable from us.

But perhaps there is another possibility.

Maybe this isn’t simply who I am.

Maybe this is who I learned to be.

And if something was learned because it once protected me, perhaps I don’t have to despise it in order to change it.

That is where compassion enters the room.

Your Body May Still Be Protecting a Child Who Grew Up

During the talk, Maté speaks with a woman about constriction in her throat.

Instead of approaching the sensation simply as a symptom to eliminate, he becomes curious about it. He asks her…

What wants to come out?

What are you tightening against?

He talks about breath holding as a fear response and connects the constriction with expression that once couldn’t safely emerge.

At one point, the conversation reaches something painfully elemental:

You weren’t allowed to scream when you were not safe.

And suddenly a symptom isn’t just a symptom.

It’s a story.

A throat learned to close.

A voice learned to disappear.

A body learned to brace.

A nervous system learned:

Do not do that. It isn’t safe.

Years pass.

The danger changes.

The child becomes an adult.

But bodies are not calendars.

Sometimes they continue executing instructions written decades ago.

Brace.

Freeze.

Please.

Disappear.

Don’t upset anyone.

Don’t say it.

Don’t need anything.

Hold your breath.

Survive.

And Then Maté Says Something Beautiful

In the conversation, after connecting this woman’s physical response with what she had endured, he tells her:

“But that’s not because anything is fundamentally wrong with you.”

That sentence deserves some room.

Because many of us have spent enormous portions of our lives believing exactly the opposite.

Something must be fundamentally wrong with me.

Too emotional.

Too needy.

Too sensitive.

Too anxious.

Too complicated.

Too sick.

Too much.

And here comes another interpretation:

Perhaps your nervous system wasn’t malfunctioning. Perhaps it was adapting.

Perhaps the behavior that frustrates you today once performed an important job.

That doesn’t mean you have to keep it forever.

But imagine approaching it differently.

Instead of:

Why the hell am I still like this?

Try:

What was this protecting me from?

Instead of:

Why can’t I say no?

Try:

When did saying no stop feeling safe?

Instead of:

Why do I need everyone to like me?

Try:

When did belonging become dependent on being pleasing?

Instead of:

Why can’t I find my voice?

Try:

When did I learn that using it had consequences?

Now we’re getting somewhere.

Not through blame.

Through curiosity.

Compassion Doesn’t Mean Pretending It Didn’t Hurt

This distinction matters.

Compassion isn’t spiritual Febreze. We don’t spray it over painful history and announce that everything smells like lavender now.

Compassion doesn’t mean excusing people who hurt us.

It doesn’t require reconciliation.

It doesn’t mean abandoning boundaries.

It doesn’t mean deciding that abuse, neglect, betrayal or emotional abandonment were somehow gifts bestowed upon us for personal growth.

Sometimes terrible things were simply terrible.

Compassion is directed toward the person who had to survive them.

You.

The child who improvised with whatever tools were available.

The teenager who didn’t understand why she felt different.

The adult who kept repeating patterns she couldn’t explain.

The body that kept sounding alarms long after everyone else thought the emergency was over.

What if we stopped putting that person on trial?

The Body Question Requires Care

Maté also talks extensively about the relationship among emotional suppression, chronic stress and physical illness. In this talk he makes strong statements connecting patterns such as chronic caretaking and suppression of healthy anger with autoimmune disease and other illnesses.

This deserves nuance and exploration.

There is substantial research showing that chronic stress, adverse experiences and social conditions can affect physiology and health. But complex illnesses aren’t simply caused by unresolved trauma, people pleasing or suppressed emotions.

Genes matter. Immune systems matter. Environment matters. Infection, hormones, exposures and countless other biological factors matter.

Trauma should never become another way to blame sick people for being sick.

You did not fail at emotional regulation and therefore earn an autoimmune disease.

You did not think incorrectly and manifest cancer.

You do not need to heal every childhood wound before you deserve physical healing.

Mind and body influence one another.

That is very different from saying the mind is responsible for everything that happens to the body.

And compassion requires us to preserve that distinction.

Maybe Healing Isn’t Becoming Someone New

Toward the end of this exchange, Maté talks about finding one’s voice.

His observation is almost startling in its simplicity.

Maybe you haven’t lost your voice.

Maybe you haven’t had enough practice hearing it.

That changes the assignment.

Healing isn’t necessarily an excavation project where somewhere underneath fifty years of rubble (and therapy) we finally discover the pristine, emotionally regulated human we were supposed to become.

Maybe healing is a practice.

Noticing.

What am I feeling?

What do I actually want?

What does my body do when I’m afraid?

What happens inside me when someone is disappointed?

Can I tolerate another person’s discomfort without immediately fixing it?

Can I say no without writing a 14-paragraph legal defense explaining why?

Can I allow anger to contain information without allowing it to run the show?

Can I recognize the old alarm without automatically obeying it?

Can I speak?

And then tomorrow:

Can I do it again?

Seen. And Then Soothed.

This is where Maté’s message intersects so beautifully with what Seen & Soothed means to me.

Being seen by another person matters enormously. It is the validation we all seek in t’s truest form.

There is something profoundly regulating about another human being saying:

I see what happened.

I believe what it cost you.

Your response makes sense to me.

But eventually there is another kind of seeing.

Seeing ourselves.

Seeing the frightened part underneath the angry one.

Seeing the child underneath the people pleaser.

Seeing the fear underneath perfectionism.

Seeing the longing underneath caretaking.

Seeing the body beneath the symptom.

Seeing the adaptation beneath the behavior.

And perhaps soothing begins when we stop demanding that those parts justify their existence.

Instead, we become curious.

Oh.

That’s why you’re here.

You were protecting me.

You learned this when I didn’t have choices.

Thank you.

But look around.

We’re not there anymore.

Maybe This Is What Compassion Sounds Like

Not:

Get over it.

But:

Of course that affected you.

Not:

Why are you like this?

But:

What happened that made this necessary?

Not:

You’re too sensitive.

But:

Your system became extraordinarily good at detecting danger.

Not:

Stop people pleasing.

But:

Let’s discover why displeasing someone feels dangerous.

Not:

Find your voice.

But:

Let’s practice listening for the voice that learned to hide.

And perhaps most importantly:

Not:

Something is fundamentally wrong with me.

But:

Something happened to me. I adapted. And now I get to decide what I still need.

The Question I Want to Leave With You

There may be parts of yourself you’ve spent years trying to evict.

The anxious part.

The angry part.

The controlling part.

The needy part.

The silent part.

The hypervigilant part.

The caretaker who is absolutely exhausted but will still bring everyone snacks.

Before throwing any of them out, maybe sit beside them for a minute.

Ask:

What were you trying to protect me from?

Then ask:

Do I still need you to do that job this way?

You don’t have to love everything that happened.

You don’t have to forgive everyone involved.

You don’t have to turn suffering into a blessing.

You don’t even have to have the entire story figured out.

But perhaps you can stop treating your adaptations as evidence against yourself.

They may actually be evidence of something else.

You survived with the tools you had.

Now you have the opportunity to learn different ones.

And maybe that is one of the quietest forms of healing:

To finally become the person who can look at the wounded places inside yourself and say,

I see you.

I understand why you’re here.

You don’t have to disappear for me to love you.

And for once, instead of being silenced, fixed, dismissed or explained away...

you are simply seen and soothed. Welcome.

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If you have Ehlers-Danlos syndrome (EDS), chances are someone has told you to go to physical therapy.

Probably more than once.

Strengthen your core. Stabilize your joints. Work on your glutes. Activate something you did not previously know needed activating.

And PT absolutely has an important place in EDS care.

But there is another member of the rehabilitation family quietly standing in the corner holding a shower stool, compression-garment aid, ergonomic pen, kitchen gadget, body-positioning strategy and a completely reorganized Tuesday.

Meet occupational therapy (OT).

And frankly, why didn’t anybody tell us about this sooner?

The Ehlers-Danlos Society describes occupational therapy as a profession focused on helping people participate more comfortably and independently in the activities that matter to them, including dressing, shopping, meal preparation, grooming, driving, work, school, sleep and even leisure. (Ehlers-Danlos Society)

In other words, an OT is not simply interested in whether your shoulder is unstable.

An OT wants to know what happens when that unstable shoulder has to wash your hair, unload the dishwasher, type for three hours, wrestle on compression leggings and then make dinner.

That distinction matters.

The question shifts from:

How do we fix this body?

to:

How can we make this life work better in this body?

And that may be one of the most useful questions anyone can ask a person with EDS.

Meet Emily Rich, PhD, OTR/L

Much of the practical advice in this article comes from the work of Emily Rich, PhD, OTR/L, an occupational therapist, researcher and educator whose clinical interests include EDS/HSD, POTS and other chronic conditions. Her EDS resource page includes presentations on pacing, daily activities, autonomic concerns, work and education. (Emily Rich’s site)

I have followed Emily’s work because she talks about something that is often missing from complex chronic illness care:

Function.

Not simply whether we can technically perform an activity, but what that activity costs us. And that cost is where occupational therapy gets very interesting.

Here’s some tips based on my understanding of OTs in EDS and Emily’s rich resources, outlined below for paid subscribers only.

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‘My doctor is going concierge.’

Sometimes that means the physician you waited nine months to see now wants an annual membership fee. Sometimes the EDS-literate specialist who finally understands that “normal imaging” does not make your neck feel normal has stopped taking insurance entirely. Sometimes a new practice promises hour-long appointments, direct texting, same-day access, care coordination, and the apparently luxurious experience of finishing a sentence before the clinician’s hand touches the doorknob.

For people with complex chronic conditions, this can feel both seductive and infuriating. Of course more time might help. We have histories that cannot be communicated in seven minutes unless we perform them as an auctioneer.

We take medications that affect other medications, conditions that annoy other conditions, and symptoms that refuse to stay politely inside one specialty. But after paying premiums, deductibles, copays, coinsurance, supplements, mobility aids, special food, travel costs, and the emotional surcharge for being told to “reduce stress,” are we really supposed to subscribe to a doctor too?

Increasingly, the answer from the healthcare is yes.

Not because every doctor has suddenly become greedy. Not because every membership practice is wonderful. And certainly not because a credit card can cure connective tissue.

Cash-pay medicine is rising where two exhausted groups meet:

1. Clinicians who feel they cannot practice thoughtful medicine inside the insurance machine

2. And patients who feel they cannot receive thoughtful medicine inside it.

That collision deserves more than either outrage or a glossy brochure featuring a stethoscope beside a spa towel. But, yes zebras are hidden in the fine print.

First, let us untangle the vocabulary

“Cash-pay,” “concierge,” and “direct primary care” are often used as if they are interchangeable. They are related, but they are not identical. Understanding the difference is key.

• Cash-pay or self-pay care means the practice does not bill your insurance for some or all services. You pay a posted fee for each visit, test, procedure, review, or package. This is common among niche specialists, functional and integrative practices, mental health professionals, and clinicians providing services insurers do not cover well. There may be no membership at all.

• Direct primary care, or DPC, generally involves a recurring monthly or annual payment for a defined set of primary care services. The practice usually does not bill insurance for those included services. The American Academy of Family Physicians describes DPC as a direct financial arrangement between patient and practice for a broad range of primary care and administrative services. It reports typical monthly fees of roughly $50 to $100, although real prices and inclusions vary considerably. DPC is not comprehensive insurance. It does not magically pick up your emergency room visit, biologic medication, spinal surgery, or the MRI that costs roughly the gross domestic product of a small island. (AAFP overview)

• Concierge medicine usually charges a retainer or membership fee for enhanced access, longer visits, more personalized attention, or extra services. Many concierge practices still bill insurance or Medicare for covered medical care on top of the membership fee. In other words, you may pay for the velvet rope and your insurer may still receive a bill once you enter.

• Hybrid practices maintain both traditional and membership options, or charge cash for certain services while accepting insurance for others. They may be a reasonable compromise. They may also be a billing scavenger hunt. Read the contract.

None of these labels tells you whether the clinician is skilled, evidence-based, accessible during a flare, willing to coordinate with specialists, or capable of admitting that a symptom falls outside their expertise.

The payment model is not a credential. A monthly fee can buy time. It cannot buy clinical judgment that maybe was never there. Do your homework!

Yes, the rise in concierge care is real

A 2025 Health Affairs study found that from 2018 through 2023, the number of identified concierge and DPC practice sites grew by 83.1 percent, while the number of participating clinicians grew by 78.4 percent. About 60 percent of those clinicians participated in Medicare, suggesting that many operated as concierge or hybrid practices rather than pure DPC. The study also found a striking business shift: independent ownership fell from 84 percent to 59.7 percent, while corporate-owned or affiliated practices increased substantially. (Zhu and colleagues, Health Affairs, 2025)

So this is not merely Dr. Kindly deciding to install nicer lamps and accept Venmo. Corporations have noticed the subscription opportunity too. Health care has discovered recurring revenue, because apparently streaming platforms had not already subscribed us to enough things.

The growth also sits inside a much larger structural change. The American Medical Association reports that the share of physicians working in private practice fell from 60.1 percent in 2012 to 42.2 percent in 2024. Physicians cited inadequate payment, costly resources, and administrative and regulatory burdens among the important reasons practices are sold. (AMA Physician Practice Benchmark Survey)

Traditional fee-for-service medicine rewards billable encounters and procedures far more reliably than it rewards reading 200 pages of outside records, thinking between visits, corresponding with three specialists, appealing a denial, or helping a patient decide whether not to have surgery. Complex care contains enormous amounts of cognitive and coordination work for both patient and provider. Much of the provider’s part is systematically designed as poorly paid, unpaid, or performed after hours. And doctors have a life too.

Doctors are not hallucinating that pressure. Patients are not hallucinating rushed, fragmented care either. Concierge and cash-pay medicine did not create the cracks in primary and complex care. They are ways people within the system are growing through them.

Why the idea of “concierge” can be unusually appealing if complex

Simple episodic medicine fits a short appointment reasonably well. A sore throat enters. A strep test happens. An antibiotic may leave. The plot has a beginning, middle, and end.

Complex chronic illness tends to arrive with multiple narrators and a prequel to the full novela.

An EDS patient may need someone to consider dysautonomia, mast-cell symptoms, migraine, sleep, gastrointestinal motility, pelvic floor dysfunction, pain, medication sensitivity, hormonal changes, and the consequences of prior surgery without treating each one as a stranger who wandered into the wrong chart. That does not necessarily mean one doctor must become an expert in everything.

It means someone needs enough time and humility to see the relationships, keep the big picture, and notice when the treatment for Problem A is kicking Problem B in the shins. That takes time in appointments and many practices do not reward that in their provider teams. This is why many of us are losing our best, most caring doctors.

Note: I’ll soon be sharing about the other reason we’re losing our doctors - for paid subscribers only so subscribe already, won’t you. This shit doesn’t research and write itself. Do it now…$5 as a trial for one month or $50 for a full year? Worth it! and wiser spending than your daily jolt of caffeine of choice.

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Concierge potential upsides to weigh vs. costs

A well-designed DPC, concierge, or cash-pay relationship may help by offering:

• longer appointments in which history, uncertainty, and tradeoffs can be discussed

• faster access during a flare, potentially before a problem becomes an urgent-care regrettable adventure

• continuity with the same clinician instead of repeatedly auditioning your medical legitimacy for strangers with fear of gaslighting tendencies

• medication reconciliation and monitoring across several prescribers

• record review, forms, letters, prior-authorization support, and specialist communication, if these are actually included

• room for shared decision-making when the answer is not “do the procedure” or “go away,” but “let us watch this intelligently”

• an ongoing provider serving like a primary-care home for the ordinary things that still happen while you have a rare disorder. Zebras get urinary tract infections and need vaccines too. We are exotic, but not exclusively

For some patients, the real purchase of concierge care is not luxury. It is cognitive continuity: one clinician holds the evolving story so the patient does not have to rebuild the entire medical universe at every visit.

That can reduce a different kind of cost, one rarely entered into a claims database: hours spent calling offices, traveling, repeating histories, recovering from appointments, correcting records, chasing results, and wondering which clinician is actually steering the boat.

What the evidence does, and does not, prove

This is where we remove the cashmere robe from the marketing and look at the actual data. Privilege 101 in real time as a review….

A 2024 literature review reported potential benefits involving patient satisfaction, access, preventive attention, and physician experience, but it also emphasized limitations in the evidence and concerns involving cost, selection, access, and equity. Much of this literature is observational, comes from particular practices or networks, and is vulnerable to selection bias. People who can and choose to join a membership practice are not necessarily comparable to people who cannot or do not. (Alhawshani and colleagues, 2024)

Some concierge organizations publicize lower hospital use and better disease measures. Those findings are worth investigating, but they should not be mistaken for a universal verdict on every practice or every complex patient. Smaller panels and greater access are plausible ingredients of better care. Plausible is not the same as proven.

One important study published in the Journal of Health Economics examined patients whose primary care doctors converted to concierge medicine. Enrollment was associated with sharply higher total health spending and no detectable mortality improvement. One year after conversion, spending among enrollees was more than 25 percent higher than in a comparison group. Enrollees were also more likely to come from higher-income neighborhoods, were somewhat healthier, and were more likely to be white. (University of Pennsylvania summary and study link)

This does not prove that concierge care has no value. Mortality is a blunt outcome, particularly for people seeking better function, symptom control, access, or quality of life. Death is not a health outcome anyone desires.

The study also evaluated a particular form of insurance-billing concierge primary care, not every DPC or self-pay arrangement. But it does dismantle the comforting assumption that more medicine, more screening, and more spending automatically equal better health.

Sometimes additional attention catches what rushed care missed. Sometimes it produces an enthusiastic festival of testing, incidental findings, referrals, supplements, and procedures. Complex patients are especially vulnerable to both undertreatment and overmedicalization. We can be ignored in one office and aggressively monetized in the next. Neither is patient-centered care.

Professional guidance from the American College of Physicians has also raised ethical concerns about smaller patient panels, continuity for patients who cannot pay, and the effect on access in an already strained primary-care workforce. It emphasizes transparency, fairness, and physicians’ continuing professional obligations. (ACP policy paper)

The hard truth is that a model can improve access for the people inside it while worsening access for those left outside. Both things can be true. Chronic illness should have taught us by now that reality is rude enough to contain two truths at once. <sigh>

When paying may actually be worth it

Yep, this part is worth paying for, so subscribe now.

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I’m not talking about poop.
I’m talking about a pu-pu platter.

The real kind. Traditionally, a Chinese pu-pu platter is a sampler of appetizers — a little of this, a little of that — designed to be shared, rotated, and enjoyed without committing to one giant entrée you might regret.

Which makes it… the perfect metaphor for chronic pain care with EDS. I love talking about dealing with chronic pain and how it changes in a sampler style approach. If you have chronic pain, you get it. What works one day or one flare will not work the same next time.

And yes, the fact that it sounds like “poo-poo” is unfortunate. But also accurate. Because living in a hypermobile body with chronic pain is, objectively, some shit.

So let’s reclaim it and laugh about it too in the way only ZU does.

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Why Zebras Don’t Order Entrées

Modern medicine loves an entrée mindset.

Pick the treatment.
Commit fully.
Wait six weeks.
Declare success or failure.

That works great for:

• Broken bones

• Infections

• People with predictable bodies

• Acute stuff with a clear treatment path

It does not work for zebras.

EDS pain is not one thing:

• It’s joints and muscles

• Fascia and nerves

• Inflammation and autonomic chaos

• Structural integrity issues and nervous system amplification

Expecting one modality to handle all of that is like ordering one appetizer and calling it dinner.

No thank you. Next.

Enter the Zebra Pu-Pu Platter Philosophy

A pu-pu platter by contrast:

• Offers variety for different types of flares

• Allows rotation and change of options

• Assumes changing tastes for various needs

• Does not demand lifelong loyalty to one choice/treatment

Exactly how chronic pain care actually works. The other version of “poo poo” and deep shit, for real.

Zebras don’t “fail” treatments.
We sample them.

We don’t abandon tools forever.
We cycle them.

What works now might not work later.
What helps during a flare might be useless during stability.

That’s not inconsistency.
That’s adaptive care.

Building Your Zebra Pu-Pu Platter of Pain Care

Think in plates, not cures.

Nervous System Style Dinner Plates

(For when pain is loud because your body feels unsafe)

• Somatic therapy

• Polyvagal regulation practices

• Gentle breathwork

• Feldenkrais or Alexander Technique

• Guided imagery or mindfulness-based pain work

These don’t “fix” joints.
They turn down the alarm so other things can help.

Pharmacology Small Plates

(Tapas, not buffet-style devastation)

• Low-dose muscle relaxants

• Neuropathic pain medications

• Low-dose naltrexone (LDN)

• Topical compounded creams

• Trigger point injections or dry needling

• Botox for dystonia or severe spasm

These are not moral failures.
They are volume controls on pain signals.

Eastern Medicine Side Dishes

(Different language, same goal)

• Acupuncture

• Acupressure and massage

• Gentle cupping (EDS-aware only)

• Gua sha or Graston muscle work (light pressure only)

• Traditional Chinese Medicine approaches

Sometimes your body responds better when it’s spoken to differently.

Movement Appetizers

(Movement that doesn’t betray you or flare you for days)

• Gentle Pilates with hypermobility-aware instructors

• Aquatic therapy or swimming to move easier

• Tai Chi or Qigong

• Gentle yoga adaptations or Yoga Nidra

• Isometric strengthening and micro-movement

This is nourishment.
Not punishment.

Tools & Gadgets

(Use sparingly and follow yuor body’s wisdom as a sampler platter approach, not Fight Club)

• TENS units

• Heat/ice therapy

• Percussion or muscle gun devices on low

• Positioning supports and braces under provider guidance

If it makes you worse, it gets politely removed from the platter.

Circulation & Lymph Sides

(Quietly essential)

• Manual lymphatic drainage

• Gentle movement for flow

• Breathwork that supports circulation

• Compression when tolerated

Stagnation hurts.
Kind movement helps.

The Zebra Rule of Rotation

Your pu-pu platter will change.

What works in winter may fail in summer.
What helps during a flare may be unnecessary during calm.
What once felt magical then may quietly stop earning its place.

That’s not regression.
That’s biology.

You are not meant to “find the one.”
You are meant to stay well-resourced. And that’s critical to learn.

🦓 Final Zebra Truth

Chronic pain with EDS isn’t a puzzle to solve.
It’s a system to tend.

And systems don’t thrive on single solutions.

They thrive on:

• Variety

• Flexibility

• Permission to change and adapt as necessary

• And the radical acceptance that needing layers doesn’t mean you’re broken

It means you’re complex.

So yes — it’s spelled P-U-P-U.
But if your pain feels like P-O-O sometimes?

Congratulations.
You’re doing chronic illness realistically.

Now pass the platter please.

Subscribe to get all my wacky analogies, ironic witnessing and so much more on chronic illness. Living in the witty and wild zebra world.

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If you’re anything like me, spending years learning how to advocate for my complicated body. Now I am wondering whether the next skill is knowing when to stop chasing medical certainty.

There is a strange moment in complex chronic illness that we don’t talk about nearly enough.

You spend years trying to find the right doctor.

You research. You wait. You send records. You learn terminology you never particularly wanted to know. You become disturbingly fluent in anatomy. You learn how to explain a medical history that really deserves its own Netflix limited series in approximately eleven minutes.

You advocate.

You persist.

You finally get your case in front of the expert.

And then the expert says:

I think we should do something.

Oh.

Well.

That wasn’t exactly what I meant you think.

I Wanted Answers. I Wasn’t Necessarily Shopping for Surgery.

This is where I find myself right now. And I bet you might have too.

I have already had two cervical fusion surgeries. More recently, after roughly three years of trying to get the right expertise around some ongoing neurological and spinal symptoms, I finally had my case reviewed by an world-renowned EDS-knowledgeable neurosurgical expert.

He has recommended a sectioning of the filum terminale, or SFT, to stop the pulling of occult tethered cord - along with an intensive additional diagnostic investigation to better understand whether other mechanical issues involving my cervical fusion and spine could be addressed to reduce symptoms and improve my quality of life.

And part of me thinks:

This is exactly what I wanted.

Not surgery.

Understanding.

I wanted someone with deep expertise in my condition to look at the whole complicated mechanical mess and help me understand what might be happening.

• What matters?

• What doesn’t?

• What could be improved?

• What could get worse?

• What should we leave the heck alone?

I wanted a map.

Unfortunately, sometimes when you finally find the person capable of drawing the map, they point to a place on it and say:

We could operate there.

And suddenly the question changes.

Finding an explanation is one decision.

Doing something invasive about it is another when you have hypermobility, potential adjacent issues and the domino effect to come that only a zebra knows is another completely.

But How Do You Actually Decide?

This is where the questions get harder, and much more useful.

Because before another test, procedure or surgery, I think we need to separate three very different conversations:

1. What medicine knows

2. What our history and fear may be adding

3. And what we actually want for our lives

For paid subscribers, I’m sharing the three sets of questions I’m using right now with my surgeon, my therapist, and myself, plus the simple decision tree helping me figure out whether to keep looking, watch and wait, or act.

Not to arrive at the “right” answer.

To arrive at my answer, for the right reasons.

Welcome to the ultimate hEDS Catch-22

My symptoms aren’t at crisis level every day. Some days are bad, some intermittent. Some come and go. Some affect my quality of life more than others.

So part of me says:

Why would I have another surgery when I’m still functioning?

Another part immediately answers:

Because what if you wait until you aren’t?

This is the peculiar mathematics of complex chronic illness.

EDS surgical intervention decision-making goes something like this…

If I act now, I could potentially undergo an invasive procedure I might have been able to postpone or avoid.

If I wait, could I miss an opportunity to prevent deterioration or make treatment more difficult later? What about aging out?

And then there is the access problem.

It took me years to get here. To the expert willing to see me.

So the otherwise perfectly sensible advice of “Just go back if things get worse” doesn’t necessarily feel sensible when getting to the right specialist can take longer than some people’s car loans. That changes the calculation.

I don’t want to live like catastrophe is always around the corner. But I also don’t want to ignore something important simply because I am tired of being a patient.

Both things can be true.

That may be the hardest lesson of this entire Chronic Illness Catch-22 series laid out this month:

Two things can be true at the same time.

• I can be tired of medical care and still need medical care.

• I can want to step away from my illness identity and still responsibly monitor an illness.

• I can have legitimate physical problems and also have emotional history affecting how I respond to medical uncertainty.

• I can trust my body and still misunderstand what one of its signals means.

• I can find a surgeon and decide not to have surgery.

And perhaps most importantly:

I can take care of my future without giving my entire present to it.

What If I’m Not Actually Looking for Surgery?

This realization has changed how I think about specialist care. Sometimes I don’t need a surgeon to operate.

I need a surgeon to know me.

I want someone knowledgeable to understand my baseline, tell me what we’re watching, explain which changes matter and be there if the situation changes.

I want to hear:

Yes, I see what you’re talking about.

No, I don’t think we need to intervene right now.

Here’s what would change my mind.

If that happens, come back.

That isn’t surgery-seeking.

That’s seeking a safety net.

Unfortunately, modern medical encounters don’t always seem designed around that enormous middle ground.

You arrive at a surgeon’s office and the implied options can feel suspiciously like:

OPERATE

or

NOTHING SURGICAL HERE, GOOD LUCK = FEELING DISMISSED.

Meanwhile, many of us are standing in the doorway asking:

Could somebody just keep an eye on this with me?

Then I Started Asking a More Uncomfortable Question

Why is understanding my body so important to me?

Some of the answer is obvious. I’ve had real complex medical problems. Persistence has mattered. I’ve learned through experience that complicated symptoms aren’t always recognized quickly or easily.

But is that the entire answer? Or has understanding also become emotionally loaded?

Because after enough years of being questioned, dismissed or misunderstood, objective medical evidence can start carrying meaning beyond medicine.

The MRI isn’t only an MRI.

The diagnosis isn’t only a diagnosis.

The expert opinion isn’t only an opinion.

Somewhere deep inside it can whisper:

See? I told you something was wrong!

And that has made me wonder whether part of my medical searching has sometimes been a search for something medicine can’t actually provide.

Validation in its deepest sense.

Not merely I believe you.

More like:

You were right to feel what you felt. You weren’t exaggerating. You weren’t weak. You weren’t difficult. You weren’t imagining this. You are NOT crazy!

And perhaps, somewhere inside me, there is still an imaginary courtroom where I seeking justice like a superhero on steroids.

I’m standing there with another scan. Another diagnosis. Another expert.

Your Honor, I’d like to submit Exhibit 437.

Except some of the people I might once have wanted to convince aren’t even in the courtroom anymore.

And I’m still building the case.

That’s a difficult thing to admit to yourself.

It also doesn’t mean my medical problems aren’t real.

It doesn’t mean I shouldn’t pursue appropriate testing.

It doesn’t mean surgery is wrong.

It means I’m beginning to ask whether medicine has sometimes been asked to heal the wound of not being believed.

And medicine may not be able to do that.

No MRI can travel backward through time.

No prestigious specialist can make another person understand what those years were like.

No successful operation can guarantee the words some of us may still long to hear:

I believe you.

I should have believed you then.

I’m sorry.

That’s not neurosurgery.

That’s therapy.

Apparently My Therapist Is Now on the Surgical Team

Not literally. She would probably object to being handed a scalpel.

But I have started realizing that major medical decisions like this may require three separate conversations with brutal honesty to make good decisions:

1. One belongs with my surgeon.

2. One belongs with my therapist.

3. And one belongs with me.

The mistake is asking one of them to answer questions that belong to another.

My therapist cannot tell me whether waiting creates a meaningful risk of neurological deterioration.

My surgeon cannot tell me how much of my urgency comes from years of medical uncertainty or the visceral need to know what is happening.

And neither of them can ultimately decide how much risk, recovery, uncertainty and medical intervention I am willing to accept in exchange for a possible improvement in my future.

That’s mine alone.

Then I Walked Into Neurosurgery and Got a Depression Questionnaire

Because apparently the universe enjoys providing even more writing material for me to explore out loud with you.

The day before a recent local neurosurgery appointment, the nurse called to verify that I had followed through with the doctor they referred me to and received the injection they’d recommended.

My brain immediately started narrating.

They’re checking whether I complied.

Then I arrived at neurosurgery and was handed a depression screening questionnaire.

My internal response was immediate:

Oh, terrific. They think I’m crazy and I haven’t even made it out of the waiting room.

Except...

Did they?

Maybe the nurse was appropriately following up on the previous treatment plan.

Maybe the questionnaire was routine screening.

Maybe nobody had decided anything about me at all.

That’s when I realized I needed another tool.

Fact. Story. Fear. Need.

I’ve started trying to separate what actually happened from what my history predicts will happen next.

In this case:

• Fact: The office asked whether I completed the recommended referral and injection, and I received a depression screening questionnaire.

• Story: They’re deciding whether I’ve been compliant and preparing to attribute my symptoms to something psychological.

• Fear: I’m going to be dismissed - again.

But underneath all of that was the much more useful question:

What do I actually need?

I need a neurosurgeon who takes my neurological symptoms seriously, tells me what they think is happening using their expertise, helps me understand what deserves intervention and what doesn’t, and is willing to monitor me if we decide not to act now.

That’s something I can actually ask for. And suddenly the goal of the appointment isn’t:

PROVE I AM SICK.

It’s: Help me make a plan.

That feels very different.

The Other Medical Catch-22: Know the Language, But Don’t Sound Like You Know Too Much

Complex illness forces us to become medically literate.

We have to understand enough to choose specialists, read reports, make decisions, navigate insurance and explain years of history during an appointment scheduled for approximately the length of a commercial break too short to grab a snack.

So we learn the language.

Then we discover that using too much of it can sometimes backfire.

Walk into an appointment saying, “My hand keeps going numb,” and perhaps you haven’t communicated enough.

Walk in announcing the neurological diagnosis you’ve concluded is causing it, complete with three PubMed papers and a color-coded anatomical diagram, and you may inadvertently communicate:

Thank you, Doctor. Your role in today’s appointment will be confirming my research.

So now there is another strange skill involved in patient advocacy.

Learn the language.

Understand the language.

Then sometimes translate it back into ordinary human.

Instead of:

“I believe this is caused by X and I need Y test.”

Try:

“I’ve noticed these changes, and I’m concerned about whether they could be related to what you’re seeing. How would you evaluate that?”

Instead of walking into a surgeon’s office asking whether you need surgery:

“I’m not looking for surgery simply because something abnormal exists. I want to understand what we’re seeing, what we’re watching and what changes would make intervention appropriate.”

Same informed patient.

Very different conversation.

And a very hard set of skills to learn over time to be more effective only learned through trial and error.

So, How the Heck Do We Decide?

This is where I’ve stopped looking for one perfect answer.

Instead, I’ve developed three sets of questions.

Not because they will magically tell me whether I should have surgery.

They won’t.

But they help me separate medical risk - from emotional history - from personal values.

And right now, I desperately need those things separated.

Continue reading only with a subscription for the questions I wish someone had given me before my first surgery. Only paid subscribers find out the three questions you need to ask your surgeon, your therapist and yourself to make a wise decision for you and your body.

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Nobody hands you a diploma. There is no graduation ceremony. Sallie Mae does not come looking for you, which may be the only upside.

But somehow you learn anatomy. You learn medication names, insurance codes, abbreviations and which specialist owns which approximately three-square-inch section of your body. You learn that “unremarkable” is generally good news even though it sounds vaguely insulting. You learn that “clinical correlation recommended” apparently means the radiologist has tagged the next person in the world’s least entertaining game of telephone.

You learn to read your own records because sometimes they contain errors. You learn to keep copies because one health system cannot necessarily communicate with the health system located directly across the street. You learn the difference between an MRI and a CT and eventually find yourself discussing T1, T2, flexion, extension, contrast and in supine/prone or upright and whether somebody actually looked at the images instead of just reading the report.

Then everyone tells you the same thing:

You have to advocate for yourself.

So you do. The current lesson is: The system is broken, so patients have to change.

And eventually you discover the final Catch-22.

Advocate for yourself. Just don’t do it in a way that makes anyone think you’re one of those patients.

You know the one. Too anxious. Too complicated. Too informed. Too many symptoms. Too many specialists. Too many questions. Too much internet. Too certain about what might be happening. Too emotional about what has already happened.

And suddenly the skills you developed because navigating complex healthcare practically required them can become the very skills you’re worried will undermine your credibility. Hello Catch-22!

This is such a bizarre way to run a healthcare system. But let’s dive in and look, and laugh because sometimes it’s all we can do.

We Were Told to Become Informed Patients

Modern medicine tells patients to participate in shared decision-making. Read. Ask questions. Understand your options. Know your medications. Report changes. Get a second opinion when appropriate.

For people with relatively straightforward healthcare needs, perhaps that’s manageable.

For complex chronic illness, “be informed” can turn into an unpaid administrative position with zero benefits.

You may have five specialists who don’t communicate with one another. One treats the heart rate. Another treats the GI tract. Another treats the joints. Another treats the spine. Someone else manages pain. Meanwhile, you’re standing in the middle waving your arms and saying:

HELLO. THESE ARE ALL ATTACHED TO THE SAME PERSON.

You become the historian. The records department. The communications liaison. The medication reconciliation specialist. The person who remembers what happened after the injection three years ago. And often, the only person in every appointment.

Of course we learn.

The problem isn’t that patients know too much. The problem is figuring out how to translate what we’ve learned into a clinical conversation that still leaves enough room for the clinician to think.

That is a much more sophisticated form of advocacy than simply arriving armed for battle.

And Not Everyone Walks Into That Room With the Same Advantages

This is important. The ability to become an “expert patient” is not distributed equally.

Some people have the education, time, internet access, money, cognitive bandwidth and physical stamina to spend hours reading research. Some can travel to specialists. Some can pay cash when insurance says no. Some know how to request records, appeal denials and speak the strange dialect of American healthcare.

Others are working two jobs. Some are raising children. Some are cognitively foggy, exhausted or in severe pain. Some don’t speak the same first language as their clinician. Some have disabilities that make communication harder. Some have learned that questioning authority is unsafe. Some have experienced discrimination in healthcare because of race, sex, gender, age, body size, disability, socioeconomic status or other factors. Some freeze in appointments. Some cry. Some talk too fast. Some forget everything they planned to say the second the white coat walks through the door. And some arrive with a three-ring binder, twelve tabs and enough highlighted PubMed abstracts to frighten a small residency program.

None of these things determine whether someone’s symptoms are real.

Good advocacy cannot mean teaching every patient to perform the same polished version of credibility.

It should mean helping people communicate what they are experiencing, what concerns them and what they need, in whatever way they reasonably can.

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But Yes, Presentation Can Affect What Happens Next

I wish this weren’t true. Human beings assess other human beings. Doctors are human beings. Patients are human beings. We all bring assumptions into the room.

If I arrive saying:

“I definitely have X, and I need you to order Y because Dr. So-and-So says this is common in EDS,”

I’ve given the clinician a conclusion to either endorse or reject.

The appointment can quietly become a debate.

But suppose I take exactly the same knowledge and translate it differently:

“I’ve noticed this specific change, and because of my history I’m concerned about what it might represent. I’ve read that X can sometimes be associated with this, but I don’t know whether that’s relevant in my case. How do you interpret what you’re seeing?”

Now I’m not pretending I haven’t done my homework. I’m also not asking the doctor to rubber-stamp my diagnosis.

I brought the evidence from living in my body. I’m asking them to bring their expertise.

That’s shared decision-making at its best. And I think that’s where my own advocacy is evolving.

Then I Got Handed the Depression Questionnaire

Recently, I went back to see a neurosurgeon. The day before the appointment, a nurse called to verify that I had seen the doctor they’d previously referred me to and had gotten the recommended injection.

My brain immediately started interpreting.

They’re checking whether I complied.

Then I arrived at the neurosurgeon’s office and was handed a depression screening questionnaire.

And my internal response was approximately:

Oh, fantastic. They already think I’m crazy and I haven’t even made it out of the waiting room.

That reaction interested me.

Because what had actually happened?

A nurse followed up on a previous treatment recommendation.

Then an office gave me a depression questionnaire.

That’s it.

I had supplied the rest of the story.

Now, maybe my interpretation would ultimately prove correct. Medical dismissal exists. Psychological symptoms can be used inappropriately to discount physical complaints, and patients with complicated histories sometimes do encounter skepticism.

But I didn’t actually know that was happening yet.

My history knew.

And apparently my history had arrived at the appointment before I did.

When Past Dismissal Starts Predicting Future Dismissal

This may be one of the most important things I’ve learned while writing this series.

If you’ve repeatedly experienced a pattern, your brain gets very good at recognizing it.

Sometimes that protects you (as your brain’s entire job is to predict and keep you safe).

If you’ve been dismissed before, you may recognize subtle dismissal earlier. If something important was missed because you didn’t push, you may be less willing to quietly accept an answer that doesn’t make sense.

Those adaptations aren’t stupid. They came from somewhere. But prediction can begin to feel exactly like observation.

They asked about depression. Therefore, they think this is psychological.

They asked whether I completed the referral. Therefore, they’re judging my compliance.

The doctor hasn’t ordered the test. Therefore, he doesn’t believe me.

Maybe. But maybe not. So I’ve started experimenting with a framework that creates a little space between what happened and what my nervous system thinks is about to happen. Check it out.

Fact → Story → Fear → Need

Take my neurosurgery visit.

FACT: The nurse asked whether I had completed the referral and injection. The office gave me a depression screening questionnaire.

STORY: They’re deciding whether I’m compliant and preparing to psychologize my neurological symptoms.

FEAR: They’re going to dismiss me again.

And then comes the question underneath all the others:

NEED: I need this clinician to take my symptoms seriously, give me their independent assessment, tell me whether anything concerns them and help me understand what we should monitor going forward.

That’s an entirely different place from which to begin an appointment.

It doesn’t require me to convince myself that my fear is irrational.

It doesn’t require me to pretend medical gaslighting never happens.

It simply asks:

What do I actually know right now, and what do I need next?

That is starting to feel less like defensive advocacy and more like purposeful advocacy.

Knowing what you need is one thing. Figuring out how to say it in the room is another.

After years of complex illness, many of us have learned enough medical language to practically qualify for continuing education credits. But how do you use that knowledge without sounding like you’re telling the doctor how to do their job? What do you say when you think something is being missed? When a doctor disagrees? When you freeze? When you cry? When you’re worried you’ve already been labeled “anxious” or “difficult”?

For paid subscribers, I’m sharing the scripts I wish I’d had years ago, plus a simple way to prepare for an appointment without bringing your entire medical autobiography into the room.

And at the end, I’m wrapping up all six Chronic Illness Catch-22s with the bigger lesson I didn’t expect to find when I started writing this series.

Because maybe better advocacy isn’t about learning how to fight harder. Maybe it’s about finally knowing what deserves a fight, what deserves a question, and what we can safely put down.

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You finally get what you wanted.

The expert.

Not just another doctor who has vaguely heard of Ehlers-Danlos syndrome. Not somebody who once attended a lunch-and-learn on hypermobility.

The expert expert.

The person patients talk about in Facebook groups using only their last name because apparently once you’ve reached this level of medicine, first names are no longer necessary.

You send records.

You fill out forms.

You collect imaging.

You wait.

Maybe months.

Maybe years.

You finally get your case in front of someone who understands the obscure thing you’ve spent half your adult life trying to understand.

And they say:

Yes.

They see it.

They believe you.

They even have an idea about what might help.

And then you realize:

Oh shit. I wasn’t necessarily looking for surgery.

I was looking for someone who understood.

Welcome to Part 5 of The Chronic Illness Catch-22.

This one is personal.

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Yes, there is some irony here.

I realize I just wrote an entire article about not letting diagnoses become your identity, and then voluntarily spent a week at a retreat organized around one of mine.

But maybe that is exactly the point.

I went because of something that happened to my brain.

What I found were people.

Beautiful, funny, complicated, resilient, struggling, hopeful people who understood things I didn’t have to explain. For one week, there was an extraordinary relief in being among people who simply got it.

I didn’t have to convince anyone that an invisible injury could change a life.

I didn’t have to justify why something seemingly small might be difficult.

I didn’t have to translate my experience into language that would make somebody else comfortable.

I didn’t have to produce evidence.

I was heard.

I was seen.

I was felt.

I was accepted.

And maybe most importantly, so was everyone else.

Something beautiful happens when we stop competing in the ‘Suffering Olympics’

We all arrived with different stories, different injuries, different abilities, different losses and different lives.

But the magic wasn’t in comparing who had been through the most.

It was in recognizing one another.

We found the common threads.

The strange things our brains do.

The relationships that changed.

The things we’ve lost.

The things we’ve learned.

The moments nobody else seems to understand.

And then, instead of marinating together in everything that had gone wrong, we did something much more powerful.

We elevated each other.

We laughed.

We listened.

We encouraged.

We moved.

We connected.

We witnessed one another without trying to fix one another.

For a little while, the suffering didn’t have to be silenced because it was unwelcome. It became quieter because it didn’t have to scream to be believed.

That distinction feels enormous to me.

Sometimes we talk about “not focusing on illness” as though the solution is simply to stop talking about it.

I don’t think that’s it at all.

Sometimes you need to talk about it until somebody actually hears you.

Sometimes you need to sit across from another human being who says, in one way or another:

Me too.

And suddenly your nervous system doesn’t have to work quite so hard to prove that your experience exists.

Being seen can quiet something that being silenced never could.

Maybe connection is part of how we find ourselves again

I am profoundly grateful for th e retreat week.

For the people who created it.

For the volunteers, leaders and facilitators who held space for us.

For the Colorado mountains that reminded me how enormous the world is when my own body has sometimes made my world feel very small.

And especially for the beautiful humans I met there.

I hope some of these people stay in my life for a very long time.

Because they reminded me of something I have spent years trying to understand:

Support shouldn’t make us more identified with our suffering. The best support helps us feel safe enough to look beyond it.

We can acknowledge what happened.

We can grieve what changed.

We can swap the bizarre stories only people with altered bodies and brains truly appreciate.

And then we can ask each other:

Okay. What else?

• What do you love?

• What makes you laugh?

• What are you dreaming about?

• What do you still want?

• Who are you becoming?

Those questions feel different to me now.

I came home wanting more than answers

For years, so much of my energy has gone toward understanding my body.

That was necessary.

I needed diagnoses. I needed knowledgeable doctors. I needed language for what was happening. I needed communities where people understood.

I am enormously grateful for all of it.

But this week solidified something I’ve been feeling for a while:

I want to become more than my diagnoses.

Not instead of being a person with chronic illness.

Not by pretending my limitations don’t exist.

Not by manufacturing toxic positivity and putting a motivational quote over a mountain sunset.

I mean something much more radical.

I want to know what happens when illness is no longer the most interesting thing about me.

I want to explore healing that isn’t synonymous with curing.

I want to talk about identity, connection, nervous-system safety, creativity, meaning, relationships, boundaries, grief, laughter, purpose and the strange experience of meeting yourself again after life rearranges everything.

I want to keep advocating for this body.

And I want to spend more time living fully inside it.

Maybe this is what comes next

Zebras Underground has given me a place to investigate illness, medicine, research, advocacy and the wonderfully absurd experience of living in a body that routinely ignores the owner’s manual.

I’m not leaving that behind.

But I think there is another conversation beginning.

You may start seeing some of what comes next under a different handle:

Seen & Soothed.

Because maybe after years of desperately wanting to be seen and believed, the next question is:

What do we do once we finally feel seen?

How do we soothe what has been fighting for so long?

How do we stop organizing our entire existence around what hurts?

How do we get out of our own way without denying what happened to us?

How do we find the light without pretending there wasn’t an abyss?

I don’t have all those answers.

That’s precisely why I want to explore them.

For now, I came down from a Colorado mountain profoundly grateful for Love Your Brain, for the people who welcomed me exactly as I was, and for a group of extraordinary humans who reminded me that our common suffering can introduce us to one another.

But it doesn’t have to be where we stay.

Maybe we meet there.

Maybe we recognize one another there.

Maybe we hold each other there for a while.

And then, when we’re ready, we help each other toward the light.

That’s where I’m going as Zebras Underground starts sharing the Seen & Soothed stories of our lives. Yes, the wit and wild explainer style of ZU you know of chronic illness as a club no one wants a membership to - will go on. But watch for a few expansive, more emotive pieces to come. Stay tuned and subscribe if you haven’t already. Get ready to be grippin’ feels!

Keep looking.

• The first doctor may not know.

• The second might tell you it’s stress.

• The third orders the wrong test.

• The fourth says your labs are normal.

• The fifth sends you back to the first.

Eventually, somebody listens differently, orders something differently, or knows something the others didn’t.

And sometimes you discover:

You were right.

Something was wrong.

This is not an imaginary phenomenon in EDS. Research has documented the long diagnostic odyssey many patients experience. In one study of 505 people with clinically confirmed hEDS, participants reported an average of more than 10 alternative diagnoses before their hEDS diagnosis, and the average diagnostic journey lasted more than a decade. (PubMed Central (PMC))

Other researchers have described how people with hEDS can have subjective symptoms dismissed, particularly chronic pain, prolonging the diagnostic journey and damaging the patient-provider relationship.

So eventually you learn:

Nobody is coming to solve this for me.

You start reading. You learn acronyms. You join groups. You request records. You compare symptoms. You read PubMed abstracts while normal people are watching Netflix. You develop the ability to pronounce medications that should require a minor in Latin. And sometimes it works. Which creates a very interesting problem. Thus, the Catch-22 of irony to come.

Your Brain Takes Notes

Imagine the lesson your brain learns from this sequence:

I felt something was wrong.

People told me I was fine. I kept looking. Eventually, someone found something.

Therefore:

When I feel something is wrong, KEEP LOOKING.

That’s not irrational. That’s learning. Adaptation as a human being at its best. In fact, it may have been one of the most adaptive things you ever did.

Persistence may have gotten you diagnosed. Research may have helped you find the right specialist. Your refusal to accept “everything looks normal” may have eventually produced an explanation, treatment, accommodation, or simply the relief of finally knowing what was happening. So when the next strange symptom appears, of course you know what to do.

Research it. Ask around about it. Find someone who gets it. Get the test. Get the second opinion. And if that doesn’t answer it, perhaps get another one.

After all, last time persistence worked.

And that’s where another Chronic Illness Catch-22 begins.

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What Happens When the Skill That Saved You Never Turns Off?

This is the question I’ve started asking myself.

Not:

“Was I wrong to keep looking?”

I wasn’t.

Not:

“Are my medical problems actually psychological?”

They’re not.

The more uncomfortable question is:

“Is the strategy that once protected me still protecting me every time I use it?”

Because eventually, investigating your body can become its own occupation. A symptom produces a question. The question produces research. The research produces a possible explanation. The possible explanation produces a specialist. The specialist produces testing. The testing produces a finding. The finding produces three more questions. And congratulations. You have unlocked the next level of the medical video game. There is no princess at the end. There is, however, another portal message.

The Diagnostic Odyssey Can Change Us

This is where I want to tread carefully because chronically ill people have heard enough variations of maybe you’re just anxious. I’m not suggesting that.

There is research documenting the psychological consequences of difficult medical encounters in complex conditions like EDS. In qualitative interviews, researchers found that repeated negative encounters could produce loss of trust in clinicians and the healthcare system, along with significant anxiety about seeking care. They used the term clinician-associated traumatization to describe what some patients experienced. (PubMed Central (PMC))

More recent qualitative research has also explored how repeated doubt from clinicians and others can become self-doubt in people with EDS. (PubMed Central (PMC))

Think about the bizarre position that puts us in.

First:

Nobody believes me.

Then:

Maybe I don’t believe myself.

Then something finally proves you weren’t imagining it.

And now:

I will never make the mistake of doubting myself again.

That is understandable.

It can also make uncertainty incredibly difficult to tolerate.

Because “We Don’t Know” Doesn’t Feel Neutral Anymore

To someone without this history, a doctor saying:

“I don’t see anything concerning right now. Let’s watch it.”

That might sound reassuring. Wonderful. Nothing urgent. Go home.

To someone who has spent years being told nothing concerning is happening only to later discover that something was, the same sentence can land very differently.

Your brain may hear:

Here we go again.

And now we’re in complicated psychological territory.

Psychologists study something called intolerance of uncertainty, essentially difficulty tolerating not knowing what something means or what will happen. Research has found relationships between intolerance of uncertainty, health-related information seeking and distress in people prone to health anxiety. (PubMed)

But I think we have to be very careful applying that research to complex chronic illness. Because sometimes our uncertainty is not hypothetical. Sometimes we really do have an unusual condition. Sometimes the first clinician really did miss something. Sometimes access to the appropriate specialist really does take months or years. Sometimes waiting really can matter.

Which is why simply labeling repeated searching as health anxiety can be both inaccurate and spectacularly unhelpful.

Maybe there is another way to think about it...

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Read more

“You need more support.”

So you get the brace.

Your knee feels better. Your ankle stops behaving like it has independent political aspirations. Your wrist hurts less. Your SI belt lets you stand longer. Compression helps. Tape helps. Maybe a cane, trekking pole or other mobility aid lets you go somewhere you otherwise couldn’t.

Wonderful!

Then someone says:

“Be careful. You don’t want to become dependent on that.”

Oh. Fine.

Take off the brace.

Joint immediately says:

PUT IT BACK.

Welcome to this issue of of The Chronic Illness Catch-22, where today’s assignment is to simultaneously support your body and make absolutely certain your body doesn’t get too comfortable being supported.

The Problem Is Real: Hypermobile Joints Often Need Help

Let’s start with the obvious. Connective tissue helps hold joints together. In hEDS and HSD, joint hypermobility can contribute to joints going outside that range causing instability, pain, recurrent injury and problems with proprioception, which is the body’s ability to sense where it is in space.

So muscles become particularly important. They don’t replace connective tissue, but stronger muscles and better neuromuscular control can help stabilize joints during movement. This is one reason physical therapy and strengthening are such common recommendations in hypermobility management.

And that advice makes sense.

Build the muscles around the joint. Improve control. Improve proprioception. Increase stability and strength.

Except there’s one minor logistical problem.

You have to use the unstable joint to strengthen the muscles that are supposed to stabilize the unstable joint.

Ah.

There it is. The Catch-22.

Strengthen It. But Don’t Piss It Off.

Perhaps you’ve experienced this. Your knee is unstable, so you go to PT. You need stronger quads and glutes.

Excellent.

You begin strengthening. Now your hip hurts.

So you modify the exercise. Then your SI joint complains.

Modify again.

Your knee finally seems happier, but now your ankle has apparently been carrying a workload nobody disclosed during orientation.

Welcome to hypermobile physical therapy, where occasionally it feels as though we’re playing anatomical Whac-A-Mole.

Strengthening can absolutely be beneficial. But the challenge isn’t merely getting stronger.

It’s getting stronger without repeatedly exceeding what the joint, surrounding tissues or entire body can tolerate in the upward and downward alignment of your Leaning Tower of Tissue.

And this is where braces and supports enter the conversation.

If the Brace Helps Me Move, Is It Really Preventing Me From Moving?

This is the question I think deserves more attention. We often talk about braces as though the only possibilities are:

Brace = weak and dependent.

No brace = strong and independent.

But real life is considerably messier. Suppose my knee brace allows me to walk around the grocery store when I otherwise would have stopped after ten minutes.

Did the brace make me less active? Or did it enable activity?

If an SI belt lets someone stand long enough to prepare dinner, is it interfering with their function or supporting it?

If compression improves someone’s orthostatic symptoms enough that they can be upright longer, is that dependence?

If a cane lets someone safely attend their child’s soccer game instead of staying home, what exactly are we afraid they’re becoming dependent on?

Going places?

We need more nuance. Because an assistive device can sometimes be the thing that makes participation possible. And participation matters.

But the Concern Isn’t Completely Ridiculous Either

This is the annoying thing about Catch-22s. Usually both sides contain some truth.

There can be legitimate reasons not to immobilize a joint unnecessarily or use more support than you need indefinitely.

Muscles need opportunities to work. Movement matters. Proprioception and neuromuscular control matter. And depending on the device, body part, injury and individual circumstances, prolonged or inappropriate bracing may have downsides.

Which means the useful question probably isn’t:

“Are braces good or bad?”

It’s:

“What is this particular support doing for this particular body in this particular situation?”

That question is considerably less catchy. It is also considerably more useful.

Maybe We Need to Distinguish Support From Substitution

This distinction has helped me think about it differently.

• Support might help my body do something.

• Substitution might completely replace something my body could reasonably be learning or doing itself.

And even that isn’t automatically bad. Sometimes substitution is exactly what a disabled body needs. A wheelchair doesn’t need to be defended by proving someone couldn’t possibly take a single step without it. A cane isn’t a moral failure. A brace isn’t cheating. Compression isn’t cheating. Sitting down isn’t cheating. Using adaptive equipment isn’t cheating.

There is no Chronic Illness Olympics committee waiting to revoke your medal because you used the handrail.

The better question is:

Does this tool increase my function, safety, comfort or participation?

And then:

Is there anything I can safely build underneath that support?

Now we’re getting somewhere.

Because “Don’t Become Dependent” Can Carry a Lot of Emotional Baggage

I think this language lands differently when you’ve already had to fight your body for basic function.

• Don’t depend on the brace.

• Don’t depend on the cane.

• Don’t use the wheelchair unless you absolutely have to.

• Don’t get used to accommodations.

There’s often an unspoken assumption hiding underneath:

The least supported body is the most successful body.

But is it?

• What if refusing support means doing less?

• What if you’re so exhausted from maintaining perfect posture without assistance that you don’t have energy left for anything else?

• What if avoiding a mobility aid keeps you home?

• What if you’re preserving the appearance of independence at the expense of actual independence?

That’s worth thinking about. Because perhaps independence doesn’t mean:

I can do everything without help.

Maybe independence sometimes means:

I have enough tools and support that I get to choose what I do with my life.

That is a very different definition.

Then There’s the Fear of Looking “Too Disabled”

Let’s talk about this one. Sometimes the resistance to using a brace, cane or other visible support isn’t coming entirely from our clinicians. Sometimes it’s us.

Maybe you can technically walk without a cane.

So are you “allowed” to use one?

Maybe you don’t need the brace every day.

Does that mean you shouldn’t wear it today?

Maybe you can walk through the airport.

You just can’t walk through the airport, stand at security, find your gate, board the plane, retrieve your luggage and still have enough body left to participate in the trip you traveled there to take.

Mobility and function aren’t binary.

You don’t have to be completely unable to do something before you’re allowed to make it easier.

That sentence is worth reading again:

You don’t have to wait until something is impossible before you’re allowed to make it easier.

Many of us could probably use that permission in areas far beyond braces.

But I Also Don’t Want My World to Get Smaller

Here’s the other side I’m trying to hold. If I can safely strengthen something, I want to.

If I can improve stability, balance or proprioception, I want that too.

If a skilled physical therapist can help me gradually require less external support for a particular activity, fantastic.

I don’t want fear of symptoms to automatically convince me that my body is incapable of adaptation.

But I also don’t want some abstract ideal of independence to make me unnecessarily miserable.

So perhaps the goal isn’t:

Get rid of the brace.

Maybe it’s:

Build as much internal support as I reasonably can while using external support strategically enough to participate in my life.

That’s a mouthful. But it feels much closer to reality.

The Better Question: What Does This Support Allow Me to Do?

This may be the question I want to carry forward.

Not:

Am I relying on this too much?

Start with:

What does this allow me to do?

• Walk farther?

• Stand longer?

• Work?

• Cook?

• Travel?

• Exercise?

• Reduce pain?

• Avoid injury?

• Participate socially?

• Feel safer?

• Conserve enough energy for something else?

Then ask:

What happens when I don’t use it?

• Do symptoms meaningfully increase?

• Does function decrease?

• Am I avoiding using it because I genuinely don’t need it, or because I’m embarrassed about needing it?

And then:

Is there something I can safely strengthen underneath it?

That’s where the brace and strengthening stop being enemies.

Maybe they become partners in chronic illness crime.

Sometimes the Goal Is Strategic Support

Perhaps you don’t need the brace sitting on the couch.

Maybe you do need it at Costco.

Perhaps you don’t need the cane inside your house.

Maybe you bring it to the museum because museums apparently believe human beings should be capable of standing contemplatively beside Impressionist paintings for four consecutive hours.

Maybe you use the SI belt while cooking.

Compression when traveling.

Tape during a particular activity.

A mobility aid when distance exceeds your comfortable range.

Support doesn’t necessarily have to be permanent or all-or-nothing.

It can be task-specific.

That alone can take some of the emotional charge out of the word “dependent.”

You’re not necessarily dependent on something.

You may simply be using the right tool for the job.

Nobody accuses you of becoming dependent on oven mitts.

We simply accept that sometimes the pan is hot.

What Helps: Ask What You’re Trying to Accomplish

Before deciding whether a support is helping or hurting, get specific.

What problem am I using this for?

• Pain?

• Instability?

• Fatigue?

• Balance?

• Orthostatic symptoms?

• Injury protection?

• Energy conservation?

Does it actually improve that problem?

Not theoretically.

In your real life.

What does it allow me to do that I otherwise wouldn’t do, or couldn’t do as comfortably?

This is where function becomes the metric.

When do I need it most?

• All day?

• During exercise?

• For long distances?

• During flares?

• Travel?

• Certain household tasks?

Is there a strengthening or rehabilitation goal that could complement it?

Maybe the answer is yes.

Maybe the answer is not right now.

Both can be reasonable.

And finally:

Am I trying to use less support because my body is ready, or because I think needing support means I’ve failed?

Those are very different motivations.

Try Saying This to Your PT or Doctor

If you’re being told to stop using something that genuinely helps:

“This support reduces my symptoms and lets me function better, but I don’t want to use more support than I need. Can you help me understand when you want me supported and when you want me practicing without it?”

If strengthening is the goal:

“What should we strengthen so I’m building more internal stability while still using the external support that currently helps me function?”

If you’re worried about “dependence”:

“What specific downside are you concerned about with me using this? Is the concern muscle strength, joint mobility, skin issues, mechanics, or something else?”

That’s a useful question because “don’t become dependent on it” is vague.

You deserve to understand what the actual clinical concern is.

And if you’re considering a new brace or mobility aid:

“Here’s what I’m currently unable to do comfortably. Would this type of support be appropriate for that problem, or is there another approach you’d recommend?”

Notice the difference.

You’re not asking:

“Can I have a brace?”

You’re asking:

“How can I improve this function?”

The brace is one possible tool.

Maybe Support Isn’t the Opposite of Strength

That’s where I land. We have a strange cultural obsession with doing things independently.

• No cane.

• No brace.

• No accommodations.

• No help.

Look at me, triumphantly opening this jar with my bare hands while dislocating three fingers. But maybe strength isn’t demonstrated by refusing support. Maybe strength sometimes looks like knowing what helps and using it. Maybe rehabilitation isn’t about stripping away every accommodation until you’re indistinguishable from someone without a disability. Maybe it’s about building as much capacity as possible while giving yourself enough support to participate in your actual life.

That’s the part I keep coming back to.

Because the goal isn’t to create a body that requires absolutely nothing. Everybody requires something.

• Glasses.

• Shoes.

• Medication.

• Orthotics.

• Handrails.

• Coffee.

• Emotional support Labradors.

• Costco-sized ibuprofen bottles.

Okay, perhaps not all of those are official rehabilitation devices.

But you get the point. A support is a tool.

The question isn’t whether needing a tool makes you weak.

The question is whether the tool helps you build the life you want.

So brace the knee if that’s what you and your healthcare team determine helps. Strengthen what you safely can. Use the cane when it expands your world. Sit when sitting makes something possible. Ask for an accept the accommodation. Take the elevator. Use the damn handrail. Get the airport wheelchair.

Support your body enough that it can participate in your life.

Because maybe the goal was never to prove that we can do everything unsupported. Maybe the goal is simply to do more of what matters.

And that brings us directly to the next, much deeper Catch-22:

You are told to advocate for yourself. Keep searching. Learn your body. Find answers.

Until one day you realize that searching for answers has become an enormous part of your life.

Next in The Chronic Illness Catch-22: Keep Looking. But Stop Chasing.

And that one gets uncomfortable. Subscribe already because that emotional outpour is for paid subscribers only.

This article reflects lived experience and general patient education, not individualized medical or rehabilitation advice. Bracing, mobility aids, compression and strengthening can have different benefits and risks depending on the person, condition, injury and device. A knowledgeable clinician, physical therapist or occupational therapist can help determine what support is appropriate for your situation.

One of the weirdest things about chronic illness is discovering that someone can have a completely different diagnosis from yours and still tell a story that sounds remarkably like your own.

Different specialists. Different medications. Different malfunctioning body parts.

Same waiting rooms. Same insurance battles. Same grief. Same “but you look fine.” Same late-night Googling that accidentally earns you an unofficial minor in medicine.

I recently wrote a piece for the U.S. Pain Foundation called “Different Diagnoses, Same Struggles: 15 Experiences People With Pain Share.”

And while I wrote it for the broader chronic pain community, I kept thinking:

Oh, my zebra people are going to recognize this.

Because underneath all our alphabet-soup diagnoses are some remarkably universal experiences. Here’s a simple summary of the article.

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The 15 things we seem to learn the hard way

1. We grieve who we used to be.
Not necessarily because that person is gone, but because life no longer works the way we assumed it would.

2. We miss ridiculously ordinary things.
Spontaneity. Grocery shopping without strategy. Saying yes without first consulting the body committee.

3. We become excellent at looking fine.
Sometimes frighteningly excellent.

4. We never quite know which body is showing up today.
Yesterday’s ability is not necessarily today’s ability.

5. We desperately want to be believed.
Especially when there is no cast, scan or lab result capable of adequately explaining what living inside this body actually feels like.

6. We can spend years trying to get a diagnosis.
And then discover that getting the diagnosis doesn’t necessarily mean getting the treatment.

7. We become our own unpaid care coordinators.
Records. Referrals. Prescriptions. Portals. Prior authorizations. Appeals. Repeat.

8. We keep wondering whether the next doctor might finally connect the dots.
Hope is remarkably persistent.

9. We learn WAY more medicine than we ever intended to know.
Nobody asked for this degree. There was no graduation ceremony. Yet here we are.

10. Every treatment becomes a cost-benefit analysis.
Will it help enough to justify the money, side effects, recovery, travel, energy and another withdrawal from the increasingly depleted Bank of Hope?

11. Healthcare bureaucracy can become its own chronic condition.
Sometimes the treatment isn’t the exhausting part. Getting permission to receive it is.

12. Pain costs far more than medical bills.
It can cost income, careers, independence, confidence and pieces of the life we thought we’d have.

13. Finding people who GET IT can be profoundly healing.
There is extraordinary relief in telling your story without having to prove it first.

14. Illness reveals relationships.
Some people disappear. Some surprise you. Some strangers become chosen family.

15. Somehow, we keep hoping.
Maybe not for the magical cure anymore. Sometimes hope becomes smaller and sturdier: a better treatment, a more functional day, a little less pain, a little more life.

And maybe that’s the bigger point.

We spend so much time separating ourselves by diagnosis.

EDS. Fibromyalgia. Migraine. CRPS. Arthritis. Neuropathy. Autoimmune disease. Back pain. Pelvic pain. Rare disease. Undiagnosed disease.

But sometimes the diagnosis isn’t the most important thing we have in common.

The experience is.

The grief.

The adaptation.

The exhaustion.

The ridiculous bureaucracy.

The need to be believed.

The enormous relief of finally finding another human being who says:

“Yep. Me too.”

And perhaps one of the most important things we can remember is that resilience doesn’t necessarily mean getting our old lives back.

Sometimes it means figuring out how to build meaningful lives inside bodies and circumstances we never would have chosen.

That’s the part I wanted to write about.

Read the full article

I unpack all 15 shared experiences, along with research and data from the chronic pain community, in my new piece for the U.S. Pain Foundation:

Different Diagnoses, Same Struggles: 15 Experiences People With Pain Share

Go read it, then come back and tell me:

Which number made you say, “Oh Lord, THAT ONE is so me”?

Because I’m guessing most of us won’t have just one.

Share your experiences. Or share this article with someone who gets it too.

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