Part Two: We’re Done Being the Quiet, Compliant Patients

By Antonia at Unremarkable Me Published: June 2025

Following on from Part One:

If you’ve already read Part One, then you know where this all began.It was a story not just about rare diseases like Chiari Malformation and Ehlers-Danlos Syndrome—but about the quieter, more corrosive damage of being doubted over and over again by the people meant to help you.

It was about myths that refuse to die, doctors caught in a broken system, and patients left to piece their lives back together in the silence that follows a dismissal.

But this article?This one’s about what happens next.

Because once you’ve lived through that kind of gaslighting and survived it, there comes a moment—and maybe you’ve felt it too—where something shifts.

You stop asking for less pain and start demanding more truth.You stop shrinking to fit the system.And you start rebuilding something stronger than what tried to break you.

We’re Done Being the Quiet, Compliant Patients

Here’s the thing about people like us—people living with misunderstood, mislabelled conditions:

We weren’t meant to question anything.We were expected to smile politely, nod gratefully, and maybe send a thank-you card even when the care wasn’t care at all.

But something changed.

We got tired of being grateful for crumbs.Tired of acting like our expectations were the problem.Tired of being called "complex cases" instead of human beings worthy of complete care.

We’re not asking for special treatment.We’re asking for real treatment.And we’re not sorry for wanting better.

We’ve Burned It Down. Now Let’s Build It Back—Together.

This isn’t just a patient issue.Disinformation doesn’t just harm those living with it—it chips away at trust in healthcare from every angle.

It hurts the exhausted GPs stuck in 10-minute slots.It hurts the specialists buried in admin.It hurts the junior doctors trying to listen but punished for taking too long.

So let’s stop pretending we’re on opposite teams.Let’s rebuild the trust. The systems. The conversations.

Because no one gets better when the care is built on silence.

For Patients (Like Me) Who’ve Been Burned

You are not too sensitive.You are not overreacting.You are not alone.

Learn (but wisely)

Not all information is created equal. Start with trusted, patient-focused resources:

• Conquer Chiari – Research-based guidance and education.

• EDS Support UK – Advocacy, resources, and UK-focused support.

• Speak Up for Better Care. You’re not “difficult” for asking questions—you’re empowered.

• NHS Complaints Advocacy – Help navigating poor care or systemic dismissal.

• Find Trauma-Informed Support. Healing happens best when you're treated like a whole person, not just a checklist.

• Trauma-Informed Healthcare UK – Tools and clinician directories for compassionate care.

  
  

For Doctors & Clinicians

We see you.We know many of you want to do better—and sometimes you’re not given the space to.

We don’t need perfection.We just need curiosity, humility, and care.

Challenge What No Longer Serves

Good medicine evolves. Keep evolving with it.

• Join EDS ECHO – Free expert-led education for clinicians.

Support Research That Centers Patients

People living with these conditions are generating the data that medicine needs.

• Learn from the Patient-Led Research Collaborative

For Systems, Policy Makers & Tech Innovators

You shape the environment. You define what’s possible.

Now do the brave thing: make space for people—not just process.

Update the Tools That Gatekeep Diagnosis

Many current screening methods exclude those who need help the most.

• EDS Toolkit for Primary Care – A practical update for UK clinicians.

Personalise, Don’t Standardise

Patients aren’t problems to be solved—they’re people to partner with.

• Explore the NHS Personalised Care Model

  
  

The Ending You Weren’t Expecting.

We Don’t Need Perfect Doctors or Perfect Patients. We Need Brave Ones.

Let’s stop pretending this will be easy.It won’t.

Change never arrives wrapped in ribbon.It arrives in messy emails, long appointments, uncomfortable truths, and courageous conversations.

But here’s the good news: we don’t have to wait for the perfect moment—or the perfect people—to begin.

We just have to start.Start listening.Start asking better questions.Start believing people when they say, “Something is wrong.”

Because myths can’t survive honesty.Dismissal can’t survive connection.And no system can stay broken forever if enough of us are willing to build something better in its place.

So no, this isn’t just about me. Or you.It’s about all of us.

The tired, the unheard, the quietly furious and the quietly hopeful.

This isn’t where the story ends.It’s where we choose to write a different one—together.

Tools & Support

• Find UK EDS & Chiari specialists:EDS Society Healthcare Professionals Directory

• Download the Disinformation Survival KitComing soon to Unremarkable Me

• Stay connected, stay loud Follow @UnremarkableMeUK for updates, support, and future campaigns.