Do I need a diagnosis?
Claire Feldkamp
10/20/20268 min read
I work with many hypermobile people who don't have a diagnosis, and the question I get asked most often is, ‘should I get a diagnosis?’ This is a huge topic, but an important one to discuss, as there are some polarising views depending on who you speak to. In this article, I want to look at how diagnosis works, why it can be helpful, and why some people choose not to pursue one. At the end, I'm going to tell you a little about my own road to diagnosis and how it fundamentally shifted everything for me.
Understanding the spectrum
Since 2017, clinicians have used a revised international classification that separates hypermobile Ehlers-Danlos syndrome (hEDS) from the broader category of hypermobility spectrum disorders (HSD). Both sit on the same spectrum and share overlapping features, including joint pain, instability, fatigue, and a tendency towards soft tissue injuries; the distinction mostly comes down to how many additional systemic features and family history criteria someone meets (Yew, Kamps-Schmitt and Borge, 2021; The Ehlers-Danlos Society, 2017). There is no blood test or scan that confirms either diagnosis. It is built entirely from a careful history and physical examination, which is part of why the process takes so long and why so many people are told conflicting things along the way.
Waiting times
One of the most difficult aspects for anyone who suspects they may have a connective tissue disorder is the waiting time for diagnosis on the NHS in the UK. A 2026 University of Edinburgh study of more than 2,000 people found that those eventually diagnosed with hEDS or an HSD had waited, on average, between 19 and 21.7 years, with the longest delays reported in Wales (University of Edinburgh, 2026). A large international survey told a similar story: an average diagnostic delay of 22.1 years for hEDS and 17.5 years for HSD, alongside a heavy burden of symptoms and other conditions building up in the years beforehand (Daylor et al., 2025). None of this reflects how hard it is to live with a symptomatic condition that affects every part of your body. This situation largely reflects how little training most healthcare professionals receive in recognising these conditions, and how many other explanations tend to get tried first (Yew, Kamps-Schmitt and Borge, 2021).
New diagnostic criteria
There is some good news on the horizon. In December 2026, a new set of international diagnostic criteria for the Ehlers-Danlos syndromes and hypermobility spectrum disorders is due to be published, drawing on research that has considerably advanced understanding of these conditions since 2017. The hope is that clearer, more consistent criteria will help healthcare professionals across specialities recognise and diagnose EDS and HSD more reliably, which should in turn help bring down the long waiting times so many people currently face. That said, I think it's sensible to be cautious about expecting rapid change within an already stretched healthcare system; embedding new criteria into everyday clinical practice tends to take years rather than months.
Why diagnosis matters
For many people, finally having a name for their experience is genuinely important. In one study of adults with hEDS, over 95% described receiving their diagnosis as important or highly important, and the majority said it helped them cope, manage their symptoms, and feel more in control of their long-term care (Wang et al., 2024). Being heard, seen, and taken seriously after years of being dismissed matters enormously, and a diagnosis can end years of confusion or dismissal (Bennett et al., 2021).
Diagnosis matters for reasons that go well beyond simply having a label. Without one, people are frequently misdiagnosed, and the consequences of this can be serious. A 2025 review of 429 patients with hEDS found that 94.4% had previously been told by a physician who was not a psychiatrist that their symptoms were psychological: that they were ‘making it up’, seeking attention, or suffering from conversion disorder or a factitious disorder, rather than living with a genuine connective tissue condition (Lee and Chopra, 2025). This kind of misdiagnosis is not a harmless delay. Being wrongly labelled in this way has been shown to lead to inappropriate medical, surgical, or psychiatric interventions, alongside lasting damage to a person's trust in healthcare and their sense of being believed (Lee and Chopra, 2025). A correct diagnosis protects against this by giving clinicians, and the person themselves, an accurate framework to work from.
Diagnosis also tends to improve the coordination of care. A confirmed diagnosis gives GPs, physiotherapists, and specialists a shared reference point, which makes it easier for them to communicate with one another and to build a treatment plan that actually fits what's going on in the body, rather than treating each symptom in isolation. It can also prompt screening for the systemic comorbidities that so often travel alongside hEDS and HSD, such as postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), so that these don't get missed or misattributed for years. Beyond the clinical picture, a formal diagnosis can open doors that self-management alone can't: referral to specialist services, and formal recognition that can support workplace or education adjustments. For many people it also brings a genuine sense of empowerment, simply through understanding their own condition and prognosis well enough to make informed decisions about their own care. None of this makes a diagnosis a prerequisite for starting to feel better, but it does tend to make the road there considerably smoother.
Why some people choose not to pursue diagnosis
It's also worth being honest about why some people choose not to pursue a formal diagnosis, because the decision isn't straightforward for everyone. Private assessment can be expensive, and NHS waiting lists are, as we've seen, extremely long, so for some people the practical barriers alone are enough to put the idea aside. Others feel that a label wouldn't change much day to day, particularly if they've already found a self-management routine that works and don't feel the need for anything more formal. Some are wary of taking on a diagnosis that feels like it might define them, or worry about how a formal label could affect things like insurance or how they're seen at work. All of these are entirely reasonable positions, and I don't think anyone should feel pressured into pursuing a diagnosis they don't want. What I'd say, though, is that the decision is worth making with a clear picture of what a diagnosis can offer, rather than out of exhaustion with a system that has made the process needlessly hard.
My experience
I always had a feeling that something wasn't quite right in my body. Looking back, I can now clearly see all the signs of hEDS that were there but that no one ever connected. I would never have described myself as flexible, despite doing ballet and gymnastics as a child. I have certainly never been able to do the splits, but I do have the ability to do deep hip openers, something I did a lot of in my thirties and early forties, and my shoulders have spent much of their life well out of place. But my body was terribly stiff as well, and no amount of stretching ever made any difference.
I used to look at my elbows and knees and describe them as ‘funky’. Even before I trained as a therapist and movement teacher, I somehow understood that my tight calves and hamstrings were probably a sign of a body trying to stabilise itself. I had no understanding at all of the systemic nature of connective tissue disorders, and didn't realise that my anxiety, headaches, migraines, severe menstrual cramps, heavy periods, constant fatigue, IBS, urinary issues, frequent soft tissue injuries, clumsiness, easily bruised skin, misaligned teeth, clicky jaw, and need to lean on everything solid were all signs of hypermobility.
I have always had lots of clients who are hypermobile, many of them unaware or undiagnosed, and that the more I worked with them, the more I began to see clear patterns in their breathing, in how their bodies organised themselves, and in their movement. When I undertook the Integrated Movement Method training - essentially because I wanted to help my clients more - it was like being struck by lightning. As I listened and read, I saw myself mirrored so clearly in the clinical description of hEDS. Very early into the course I had pretty much made up my mind that I ticked ninety per cent of the boxes for hEDS, and that the only way I would ever get an answer would be to pursue a private diagnosis. I researched and typed up my own clinical notes, and in that process it became very apparent to me that my Mum had hEDS too. Confronting all of this 'stuff' was not easy.
When I travelled down to London for my diagnosis, I made myself accept that I might not get the confirmation I so desperately wanted, and decided that whatever happened, I had done the right thing by seeking out a specialist, who came well recommended by fellow zebras. We had a laugh when she read my clinical notes: ‘You've done ninety-nine per cent of the work for me!’ Right at the end of my appointment, came the words: ‘I'm going to diagnose you with hEDS.’ I burst into tears. My life of struggle, pain, gaslighting, dismissal, and time spent trying to live in a body that never worked how it should all suddenly validated. It was like someone had finally ‘seen’ me for the first time ever. I know I was in shock when I left the clinic. I sat on the steps a few doors down and cried and cried. It felt like I had been handed a life sentence, yet as the same time it felt like everything had changed, nothing had changed. I’d had hEDS all the time I just didn’t know.
As the weeks passed, I realised that for the first time in my life I was being kind to myself. I wasn't pushing and fighting against everything the way I always had. I started to see what I needed, why breathwork and certain types of movement had been helpful for me - and where others had not! I started feeling able to stand up for myself in medical situations. I stopped trying to do so much all the time. When things were too much, I stopped pushing myself. I accepted that I need to sleep, rest and care for myself everyday. Diagnosis really did change my life for the better (even on days when hEDS feels really hard).
So, do you need a diagnosis?
I don't think there's a single right answer. What I hope this article shows is that diagnosis can matter for reasons well beyond simply having a name for what's wrong: it can end years of self-doubt, protect you from being misdiagnosed and mistreated, open the door to the right kind of specialist support, and help you and the people caring for you make sense of a body that doesn't always follow the rules. Equally, if you're not in a position to pursue one, or you don't feel you need one, that doesn't make your experience any less real or any less valid. What matters most is that you're supported, believed, and given the tools to understand and work with your body, whatever route gets you there.
References
Daylor, V. et al. (2025) 'Defining the chronic complexities of hEDS and HSD: a global survey of diagnostic challenges, life-long comorbidities, and unmet needs', Journal of Clinical Medicine, 14(16), p. 5636.
Lee, C. and Chopra, P. (2025) 'The incidence of misdiagnosis in patients with Ehlers-Danlos syndrome', Children, 12(6), p. 698.
The Ehlers-Danlos Society (2017) Hypermobile Ehlers-Danlos syndrome (hEDS) vs. hypermobility spectrum disorders (HSD): what's the difference?
University of Edinburgh (2026) Study reveals two-decade delay in hypermobility diagnoses.
Wang, Y.T., Jahani, S., Morel-Swols, D., Kapely, A., Rosen, A. and Forghani, I. (2024) 'Patient experiences of receiving a diagnosis of hypermobile Ehlers-Danlos syndrome', American Journal of Medical Genetics Part A, 194(8), e63613.
Yew, K.S., Kamps-Schmitt, K.A. and Borge, R. (2021) 'Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders', American Family Physician, 103(8), pp. 481-492.
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