Part One:The Pain You Can’t Prove Still Hurts

By Antonia at Unremarkable Me Published:June 2025

This Isn’t a Story About Rare Diseases.

It’s a Story About Being Gaslit Out of Your Own Body.

Some stories begin with answers.This one begins with questions—the kind that echo in the dark.

What if it’s all in my head?What if I’m just sensitive?What if they’re right, and I’m wrong about my own body?

If any of that feels familiar, you’re not alone.This isn’t just a medical journey—it’s a lesson in being doubted, delayed, and dismissed.

It’s about what happens when the people who are meant to help you… don’t.Not out of cruelty, but out of training. Out of pressure. Out of a system built to treat what it knows, and quietly look away from what it doesn’t.

This isn’t a rare story, even if the conditions are.It’s a human one.And I want to tell it, because maybe it sounds a little like yours.

When the System Fails, the Myths Move In

—And Sometimes, They Move Into Your Own Head

Here’s the thing they don’t tell you when you’re diagnosed—or more often, dismissed—with Chiari Malformation or Ehlers-Danlos Syndrome (EDS):You’re not just navigating symptoms.You’re navigating stories—old ones. The kind that get passed around exam rooms like hand-me-downs that no longer fit.

Stories that tell you, “It’s probably nothing.”Stories that turn into second guesses. Into silence. Into self-doubt.

I know, because I lived it.

There were years when I was told I was exaggerating, catastrophising, or—as one doctor once put it—“a little too in tune with your body.”

Looking back, I know it wasn’t me being dramatic.It was the system being unprepared.And it still is.

Let’s Talk About the Myths That Still Wear Lab Coats

The 5mm Rule: The Fairy Tale of the Floating Brain

In Chiari Malformation, there’s a stubborn myth that unless your brain tissue herniates more than 5mm, your symptoms can’t possibly be real.

But research says otherwise—CSF flow (how your spinal fluid moves) is a much stronger indicator of how Chiari affects you (Milhorat et al., 2003).

Still, that 5mm rule shows up in scan reports and clinic notes across the UK like an unwanted guest who refuses to leave.It’s tidy. It’s easy.And it gives doctors a number to hide behind when the symptoms don’t fit the textbook.

The Beighton Score: A Game of Twists and Misses

For those with hypermobile EDS (hEDS), the Beighton score is often the first—and last—test they’re given. Touch your toes? Great. Can’t? Sorry, no further questions.

Never mind that the 2017 International Classification of EDS clearly states the Beighton score is no longer enough on its own.

Joints can dislocate. Organs can malfunction. Nerves can scream.And if you don’t score “bendy” enough that day? It’s like none of it counts.

The Other Side of the Desk

Sometimes, It’s Just as Broken Over There

It’s easy to point fingers at doctors.But I want to pause here—to say something a little harder: not every dismissive experience comes from a bad person.

I’ve seen the tired GP at the end of their shift. The consultant stuck between a waiting list and a wall of red tape. The one who’s trying, but hasn’t been trained in what I’m living.

They didn’t get into medicine to make people feel small.But when the system values efficiency over empathy, something gets lost.

I understand that.I really do.But knowing their pressure doesn’t soften the impact of being sent home unheard.

Silo Medicine: Where Everyone’s Specialised but No One Connects the Dots

If you’ve ever tried to get your neurologist to talk to your gastroenterologist—or your rheumatologist to care about your ENT scan—you already know the drill.

Each specialist sees one chapter.You’re expected to write the book.

And in the space between departments, misinformation takes root.Patients fall through the cracks.And those cracks? They’re deep. Deep enough to swallow hope, time, and quality of life.

Communities: Lifelines With a Warning Label

When medicine leaves gaps, patients turn to each other.Support groups. Forums. Facebook pages. They become our classrooms and our campfires.

Sometimes, they’re lifesaving.Sometimes, they’re overwhelming.

Because when you’re desperate for answers, even the loudest theories can start sounding like truth.And when the system’s silent, any voice feels better than none.

We deserve better than silence.We deserve safe, informed, compassionate guidance—not a scavenger hunt through internet opinions.

We Were All Set Up to Fail. But That Doesn’t Mean We’re Broken

This isn’t a tragic story about misunderstood illnesses.It’s a warning light.

Chiari Malformation and EDS myths aren’t harmless missteps.They shape policy. They impact care. They change lives—and not for the better.

And while it’s tempting to blame individual doctors or viral misinformation, the truth is more uncomfortable:This is structural neglect, wrapped in politeness and polished reports.

But here’s what matters most:

The system is broken. But you’re not.

And the more we tell the truth—out loud, without shame—the harder it becomes for the myths to survive.

Help & Support

• Ann Conroy Trust (UK Chiari Support)

• The Ehlers-Danlos Society

• Patient Safety Learning Hub