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Between Care and Caution: EDS Through the Eyes of the NHS

By Antonia at Unremarkable Me (who once told a consultant she'd learned more from Reddit and wasn't entirely joking)


The first time a doctor truly believed me, I cried. Not in a dramatic, Oscar-worthy way—more like a slow, stunned leak of relief down my face while I stared at the wall, trying not to ruin the moment. It had taken years. And in those years, I’d been labelled everything from anxious to hormonal to flat-out delusional. But here’s the thing: I don’t think most of those doctors were bad people. I think many of them genuinely cared. They just didn’t know what to do with me.

Living with Ehlers-Danlos Syndrome (EDS) in the UK often feels like being an unsolvable riddle handed to a very tired person with six minutes and no clues. The NHS is a lifeline, but it's also a labyrinth—and too many of us get lost. This isn’t a hit piece. It’s a plea. Because behind every horror story is a doctor trying their best—and behind some of those doctors are systems that are failing us all.


Zebras Don’t Roam Here: The Training Gap

There’s a saying in medicine: "When you hear hoofbeats, think horses, not zebras." It’s meant to encourage doctors to consider common diagnoses first. Unfortunately for people with rare conditions like EDS (the metaphorical zebras), this approach often leads to years of misdiagnosis and neglect.

Many UK doctors receive limited to no formal education about connective tissue disorders. The result? EDS is often brushed aside as anxiety, depression, or even attention-seeking behaviour. According to a 2019 survey by the Ehlers-Danlos Society, nearly 50% of EDS patients reported waiting more than 10 years for a diagnosis.

It's not that EDS is obscure—it's that medical education hasn't caught up. The National Institute for Health and Care Excellence (NICE) does offer guidance on EDS, but without consistent implementation or mandatory training, many doctors are simply unprepared.


Champions in a Broken System

Still, let’s give credit where it’s due: some NHS professionals are absolute champions. They listen. They investigate. They don’t stop until they find something that makes sense. These doctors exist—and they are often working under tremendous strain.

Take Dr. Amir Hannan, for instance, who took over a GP practice once run by Harold Shipman. Rather than run from its dark past, he rebuilt it through transparency, giving patients online access to their records and encouraging collaborative care. His model helped restore trust where trust had been decimated. (Wikipedia)

And many GPs, rheumatologists, and geneticists quietly go above and beyond every day: calling after hours, advocating for referrals, fighting administrative walls—all in a system where their own burnout is often treated with as much indifference as ours.


When Disbelief Becomes Diagnosis

But what happens when doctors don’t—or can’t—believe us? The damage is profound. Medical gaslighting doesn’t just hurt feelings; it changes outcomes. Patients internalise doubt, delay care, and begin to see themselves as unreliable narrators of their own bodies.

And the damage isn’t limited to individuals. Some doctors have fought back against systems that not only harm patients, but punish professionals for speaking up. The group Justice for Doctors (JFD) represents over 140 NHS whistleblowers who allege they were harassed, investigated, and even referred to the General Medical Council (GMC) after raising patient safety concerns. (The Times)

Others, like The Doctors' Association UK (DAUK), formed in response to the Bawa-Garba case, are advocating for a culture of learning over blame. Their "Learn Not Blame" campaign promotes safer, more compassionate healthcare through transparency and support. (Wikipedia)

These professionals aren’t defying medicine—they’re defending it.


What Needs to Change

We need better training—not just in textbooks, but in listening. Complex patients shouldn’t be a source of dread; they should be a call to curiosity. The GMC recently ruled that physician associates can be called "medical professionals," a decision contested by the BMA over fears it could mislead patients and muddy already fragile trust. (The Times)

The truth is, titles matter. So does time. So does belief.

Imagine a system where a patient saying "something feels wrong" wasn’t the start of an argument but the beginning of an investigation. Where a tired, hurting person didn’t have to walk in with a PowerPoint and a bibliography just to be taken seriously. Where being a zebra didn’t make you a pariah.


Promoting the Good: What We Can Do Together

We talk a lot about what goes wrong in medicine—and rightly so. But we also need to elevate the good. Not just because it feels nice, but because it creates momentum. Patients can:

  • Nominate great doctors for recognition within their trusts and organisations.

  • Write positive feedback letters to GP surgeries and hospitals, which go on professional records.

  • Share stories publicly—on blogs, social media, even NHS review sites—so that others know who is out there making a difference.

  • Support advocacy groups like The Doctors' Association UK and Justice for Doctors that protect both patients and practitioners.

Because behind every quietly heroic doctor is often a mountain of silence. Let’s turn that silence into applause.


I still believe in the NHS. I believe in good medicine and good people. But belief is not the same as blind faith. And while hope can keep you going, it shouldn’t be the only thing you’re prescribed.

We deserve systems that see us. Doctors deserve systems that support them. And medicine, at its best, is a partnership—not a battlefield.

I don’t need every doctor to understand me—I just need them to believe I’m worth understanding. And maybe—just maybe—we could all be a little louder in thanking those who already do.


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