Q. After years of being dismissed, disbelieved, and misdiagnosed, I’ve finally been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). Part of me feels vindicated but mostly I just feel exhausted.

I know that hEDS is not easy to diagnose and many doctors don’t know/ understand the condition. But there wasn’t ever any curiosity and I’ve spent more than a decade bracing myself for appointments where I would be repeatedly told that I was “too young to be in that much pain”, or that my dizziness and fatigue were probably “just anxiety’’.

At one point I started to wonder if I really was making it all up. I was prescribed antidepressants, advised to exercise more and told to “focus on the positives’’. In reality, I was constantly battling debilitating symptoms and the loneliness of not being believed.

Now, thanks to endless research on my part and a (young) curious doctor who really did listen, I have the diagnosis. But I don’t feel better because the damage is already done. I’ve lost trust in doctors, I second-guess my symptoms, and I worry I’ve become hyperfocused on my body in a way that isn’t healthy.

Everyone around me assumes I should be “relieved” or “grateful” now that I finally have a label, but it doesn’t undo the years of being dismissed, or the impact that’s had on my mental health. I’m both angry and weirdly numb at the same time while always being constantly on edge.

How do I move forward with this new diagnosis without carrying all that emotional baggage? And how do I start rebuilding trust in myself, in others, in the healthcare system?
Leigh

A. As you eloquently describe, receiving a diagnosis after years of not being taken seriously does not erase the suffering, self-doubt and dismissal endured. It’s rather insensitive for people to expect that with a diagnosis you should be “grateful” and “relieved”.

A diagnosis doesn’t erase the humiliation of being disbelieved, nor does it hand you back the time and energy spent fighting to be believed. To have lived for ten years in pain that some thought was fake and/or exaggerated leaves psychological scars.

So, while getting the diagnosis is the end of one battle, it is also the start of another. Yes, your instincts have been validated but you now have to come to terms with your condition, physically, emotionally and practically. Hypermobile Ehlers-Danlos syndrome is a chronic, often misunderstood connective tissue disorder with life-altering symptoms including pain, fatigue and instability, as well as complex care needs that can follow.

• Could a patient passport have prevented my 20 years in agony?

The psychological and emotional difficulties you describe are the result of medical gaslighting, ie when healthcare professionals minimise, misattribute or dismiss a patient’s symptoms, often implying the problem is psychological or fabricated. The term comes from the psychological abuse tactic where someone is manipulated into doubting their reality.

There are many who will relate to your story, including people with other long-term conditions such as ME/CFS, endometriosis, fibromyalgia, or long Covid, where their all-too-real, life-impacting pain has been dismissed as stress or “low mood”, sometimes for years, before finally receiving an accurate diagnosis. By then, as with you, the physical condition may have worsened, but so too has the psychological toll: self-doubt, helplessness, even trauma.

Medical gaslighting does not generally stem from malice, instead often from unconscious bias: the subtle, automatic assumptions that influence how clinicians interpret symptoms without even realising it. These biases, often shaped by cultural norms, training gaps and personal experiences, skew clinical judgment, undermining trust and leading to patients being dismissed, misdiagnosed or left untreated.

There is research to support this: women’s pain is more likely to be downplayed than men’s; there is evidence that people from ethnic minorities receive less effective pain management; studies highlight how neurodivergent people (people with ADHD, autism etc) are often told they’re “just anxious” when reporting physical symptoms, and patients with invisible illnesses are more likely to be dismissed outright.

Clinicians, like all humans, use heuristics (mental shortcuts). However, these shortcuts can risk what is called diagnostic overshadowing — a patient who doesn’t “look ill’’ might be labelled attention-seeking, a person with a known mental health history might have physical symptoms misread as psychological. These false assumptions can be dangerous and lead to serious delays in treatment or no treatment at all.

Experiences like yours sometimes illustrate a pattern of systemic biases — some of the biggest class-action lawsuits in recent years have revealed just how systemic this problem can be. Women harmed by Essure contraceptive implants and vaginal mesh were dismissed for years, many being told that their pain was normal, their distress hormonal, their injuries imagined.

The same pattern has played out with long Covid, where patients were originally told to rest or to stop catastrophising, even when reporting disabling symptoms backed by emerging biomedical evidence.

When we’re repeatedly dismissed, our nervous system eventually goes into survival mode and these protective habits don’t switch off overnight. This is similar to experiencing trauma because it results in heightened vigilance, emotional shutdown, deep mistrust and self-advocacy fatigue.

Therefore this isn’t stress, it’s an adaptive response to prolonged invalidation and fear. You would brace yourself before every appointment, remain hypervigilant for dismissal, your trust eroded after years of researching your condition. You now juggle extreme emotions: understandable anger at the perverse victory of being proved right, alongside a numbness which comes from protective detachment.

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Feeling “constantly on edge”, you are also experiencing somatic anxiety — this is the trauma living in your body. For some people the experience you describe is also like a form of medical PTSD born out of starting to question their sanity and mistrust their memory.

They end up feeling disoriented about what’s real. Therefore, your numbness, your difficulty trusting, your “hyperfocus” on your body are not pathology, but psychology responding to prolonged invalidation.

Rebuilding trust in the healthcare system will be a challenge but if you don’t yet have one, seek out a multidisciplinary hEDS-aware service. They are few and far between but a few NHS specialist clinics exist in, for example, London, Bath and Stanmore.

Referrals often require patience and persistence. In the meantime, some pain management centres and multidisciplinary teams are increasingly hEDS-aware, offering joined-up care through physiotherapists, occupational therapists, rheumatologists, rehabilitation specialists and psychologists with expertise in chronic pain or medical trauma.

If financially possible, private practitioners may also be worth exploring, to devise both tailored physio and pacing plans, which are personalised strategies to help people with chronic conditions to balance activity and rest and thus prevent the cycle of overexertion followed by crashes. This process involves tracking energy levels, setting limits, and gradually building stamina without worsening symptoms.

For continuing support, charities such as Ehlers-Danlos Support UK (ehlers-danlos.com) and the Hypermobility Syndromes Association (hypermobility.org) offer webinars, downloadable resources, and peer networks for both patients and professionals.

Tools such as the Zebra Club app (offering gentle rehab designed for hypermobile bodies), and the Pain Toolkit provide practical strategies for managing fatigue and pain. Given the frequent overlap with other conditions such as Pots: postural orthostatic tachycardia syndrome (a form of dysautonomia where the heart rate increases abnormally upon standing, often causing dizziness, palpitations, fatigue, and fainting), see: potsuk.org.

Find a therapist who understands the overlap between chronic illness and trauma. Health psychology, EMDR, or compassion-focused therapy may all be helpful. Explore somatic therapies and develop skills — body-focused approaches that use movement, breath and physical awareness to help release stored tension and regulate the nervous system, especially after trauma or chronic stress.

You have survived a decade of systemic invalidation and still found the strength to advocate for yourself — that’s astonishing resilience. So don’t rush to be grateful or optimistic just because others expect it. Be where you are. You’ve earned the right to move slowly, on your terms.