The EDS Boom Is Real. So Is the Crisis Nobody's Talking About.

I didn't plan on becoming the poster child for a rare, incurable disease.

A few of my early doctors told me I was, though — repeatedly. And I'd think: Cool. Do I get a poster? I didn't want this. I didn't want to lose most of my friends, my social life, and eventually my career. I didn't plan to spend fifteen years doing everything humanly possible to live as if I don't have a complex, devastating disease.

But that's where I am. And today — this isn't really about me.

This is about what's happening to our community right now, and the hard truth that I haven't heard anyone say out loud yet.

The EDS boom is real. TikTok. Instagram. Shared stories, personal pain, healing journeys, diagnosis moments — the awareness that's exploded over the last couple of years is genuinely wonderful. I love watching it. I follow the accounts. I've felt the relief of finally seeing our reality reflected back.

And when this boom hit, most of us had the same instinct: finally, this will save us.

In some ways, it has. But there's another side — the side nobody's really talking about yet.

Not because they don't care. Because we broke them.

Let me tell you about a physical therapist I've been seeing since 2021.

In August 2022, I went to a chiropractor-slash-manual-do specialist, desperate to find care after moving back to North Carolina. I will spare you the full six hours — easily one of the most bizarre appointments of my life. But at some point during this appointment, my right shoulder subluxed.

Now, every joint in my body has subluxed or dislocated at some point. I've learned to manage most of them. But not my right shoulder. That one is my PTSD shoulder — the one I'd had reconstructed less than a year before, after my scapula literally detached and spent time hanging out in my armpit.

So I'm sitting there, shoulder out, and I ask this doctor to help me. He grabs my hand and, with full force, essentially wet-noodles my arm — just jerks it, shakes it. I was so shocked I didn't even react. I just sat there.

And I knew immediately. Every bit of progress from the last year and a half of surgery and recovery — gone. In seconds.

A few days later, I saw my PT here in NC. I'd first met him before the DC move, back when everything had started falling apart with my shoulder. I remember him telling me back then: "I can only take two EDS patients on my caseload at a time. You guys are a lot." I'd completely understood.

So I came in after the setback. He took one look at me, started to assess the situation — and then he had to leave the room.

He came back a few minutes later with tears in his eyes.

My first reaction, honestly? A kind of hurt I couldn't fully name. My own emotions were in self-protection mode. But when he finally spoke, he said: "I consider myself a healer. And when my patients have setbacks like this, it's hard. I care about you."

He wasn't performing. He meant it.

And I sat with that for a long time afterward.

Now imagine doing that — carrying that — with 8, 10, 12 patients a day. Five days a week. For years.

These providers who choose to work with us — people with EDS, POTS, MCAS, complex comorbidities, years of trauma from the medical system — they're not just doing a job. They're holding weight that most people in medicine never touch. Every setback their patients have, they feel. Every mystery they can't solve, they carry.

And now? Add to that an internet full of content about how terrible doctors are.

I'm not saying that content is wrong. I have cried in more parking lots than I can count. I've been dismissed mid-sentence. I've had a doctor give me thoracic outlet syndrome from placing a central line port in the wrong vein. I have been in the "doctors suck" camp — loudly. I've earned my right to be there.

But we also need to say this plainly:

And the patients being left behind are people like us — the complicated ones. The ones who need the most nuanced, specialized, connected-dots care. The ones the EDS boom was supposed to help.

This is the paradox. And I don't think we're talking about it clearly enough.

The visibility has been real progress. The community has been lifesaving — genuinely. But when the online conversation tips into constant doctor-bashing, when every provider misstep goes viral, when good and bad providers get flattened into the same narrative — we're not just venting. We're pushing people out of a field that already has almost nobody in it.

And there's no one coming to fill those spots.

Here's the reframe I keep coming back to:

We are not just a diagnosis. We're an uncracked code. And we are this close to blowing the lid off modern medicine.

The research that's emerging — connective tissue biology, genetics, gene expression, neuro-immune dysfunction — we are the case studies. Providers who choose to work with us don't just get difficult patients. They get a front-row seat to history being made.

To the new providers, to the medical students, to anyone who is considering whether to lean into this space or run from it: please don't run. The field needs visionaries. We need people willing to sit with uncertainty, to connect dots across systems, to treat us as whole humans. We need the ones who are willing to be uncomfortable for the sake of discovery.

To the providers who are still here, still showing up, still trying — you are unicorns. We know it. We need to do better at telling you.

And to those of us in the EDS community:

We can hold both things at once. The real harm that has been done to us, and the reality that we need the good providers to stay. We can share our stories and be thoughtful about what we're building. We can demand better care and make the field worth staying in.

Not with shame. Not with shock value.

With sharp questions. Real stories. Actual solutions.

I'm here to make noise that matters — and to get the doctors who are still listening to pull up a chair and stay at the table with us.

If that's the kind of conversation you're looking for, you're in the right place.