There is a pattern in the EDS world that I have wanted to write about properly for a while now, mostly because most people tend to skirt around it. Those who have had Ehlers Danlos syndrome for years, sometimes for decades, often start to notice that their whole relationship with healthcare feels quite different to everyone else’s. They brace themselves before appointments. They rehearse the script in the car park beforehand, working out which bit of the symptom list is going to get the raised eyebrow this time, and which bits are probably safer to leave out altogether.
So they stop mentioning certain things, because over time they have learned that it is just quicker to keep quiet about them. And some of them have stopped going to appointments at all.
It is a survival response, not a character flaw. It is a learnt behaviour, more or less, and the learning happened in clinics.
Now, the purpose of writing this article is to look at medical trauma in the EDS community properly, rather than with the usual reassuring hand wave you tend to find online. It is a real thing, there is a reasonable body of evidence behind it now, and I also want to be honest about what the different professionals involved can and cannot actually help with, ourselves included, because there is a line here that I think matters a great deal.
This way, we cover what medical trauma means in this context, the numbers behind diagnostic delay and dismissal in hEDS, why this particular group is so at risk, what it does to the body work, and where the different kinds of help actually sit. If you want the broader clinical overview first, the EDS hub has that. So, if you have been bracing yourself before appointments for years, let’s get into it.
What We Mean by Medical Trauma in EDS
Medical trauma is not a formal DSM diagnosis, and it is worth saying that upfront. The International Society for Traumatic Stress Studies describes it as a set of psychological and physiological responses to pain, injury, serious illness, medical procedures, and frightening treatment experiences. When it comes to EDS, I would add something a bit more specific to that list. It is the cumulative weight of being disbelieved, misdiagnosed, sent away with the wrong label, told your pain is just anxiety, and having to start the whole explanation from scratch with every single new clinician you happen to meet.
So that is a slightly different animal from the more commonly discussed forms of trauma. Most PTSD models assume the traumatic event sits firmly in the past, behind you. Medical trauma from a lifelong condition cannot really do that, because the next appointment is always coming around again, the same environment, often the same dismissive dynamics, repeating on a loop with no real end date.
And actually that distinction matters a lot when it comes to how this plays out. It is not like being in a car accident and then avoiding the motorways for a couple of years while things settle down again. It is more like the motorway is the only road to the town where you happen to live, and you have to drive it every few months whether you like it or not, so there is no real opting out of it.
Now, the data we have on all of this is mostly survey based and qualitative rather than big randomised trials, which is worth flagging right at the start. What there is, though, is a fairly consistent signal across a lot of independent sources, which is meaningful in itself even if it does not hand you one precise number to point at. It is not a perfectly clean evidence base, warts and all. But then again, neither is most of what we end up working with in hypermobility.
The Numbers
Look, diagnostic delay in hEDS is probably the most clearly evidenced part of all of this. A 2023 survey of 505 people with clinically confirmed hEDS, drawn from the Ehlers-Danlos Society’s global registry, found an average time to diagnosis of just over ten years [1], with those people seeing an average of 15.6 clinicians before they finally got there, and nearly a quarter of them seeing 20 or more along the way [1]. Once they did have the diagnosis in hand, the average number of clinicians needed dropped by around half [1], so that is something at least.
Ten years. Fifteen plus clinicians. Worth sitting with that one for a moment.
More than half of an Australian cohort of 152 women with EDS first noticed their symptoms more than fifteen years before diagnosis, and the majority of them received other diagnoses first [4], with many having to go and research EDS themselves and then educate the very clinicians they were seeing [4]. It is a fair amount of emotional labour, on top of an already physically demanding condition, and that last bit should make you a little bit angry, because it really should.
Sixteen percent of those 2023 registry respondents had their symptoms specifically dismissed as psychosomatic [1], and the consequences logged in that survey were not small ones: delayed diagnosis, unnecessary psychiatric medication in some cases, and what the survey itself describes as long lasting trauma responses [1].
Now, on the psychiatric side of things, 75% of those same respondents carried an anxiety diagnosis and 68% of them carried a depression diagnosis alongside the hEDS itself [1]. That is a lot of people, and you might reasonably say, well, of course anxious people go off looking for diagnoses. But the ALSPAC adolescent cohort, which is a general population cohort rather than a specialty clinic, found that joint hypermobility at age 18 was associated with depressive disorder (adjusted OR 3.53) and anxiety disorder (adjusted OR 3.14) compared to those without it [5]. The GoodHope EDS clinic over in Toronto found similarly raised rates of anxiety, depression, and PTSD in a retrospective cohort of just over a thousand people [8], and the long term Bulbena cohort flagged joint hypermobility syndrome as an independent risk factor for anxiety disorders across a full fifteen years of follow up [9]. So this is not coming from one single place, and it is not just a referral artefact either.
The PTSD overlap is harder to pin to hEDS on its own, mostly because the bulk of the solid data sits over in the fibromyalgia literature instead. Around 71.5% of one small fibromyalgia sample of 88 women met criteria for current PTSD [6], and a systematic review of 31 studies put roughly a third of them at lifetime PTSD [7]. These are specialist clinic groups, so they are always going to run a fair bit hotter than a community sample would. But the direction of travel here is real enough.
Why This Happens
There are a few overlapping reasons why people with hEDS in particular are so likely to run into all of this, and it is worth going through them one at a time rather than bundling the whole lot together.
The first one is that hEDS is genuinely hard to diagnose. It does not show up on standard bloods or on imaging. The criteria lean heavily on clinical examination and a detailed symptom history, and in a ten minute GP appointment that is almost impossible to do properly. The condition overlaps with a load of others that are far better understood, and until fairly recently it was not well covered in medical training at all. A GP who has never once seen it before genuinely cannot diagnose it. So that is a training and system problem far more than it is a malicious one, and I think it is worth saying that out loud, because a lot of people I speak to assume the dismissal was something personal, aimed squarely at them. A lot of the time it simply was not. The system was not built for this particular presentation, which is a different problem altogether, though not a less frustrating one.
The second one is more uncomfortable to say directly. There is a gendered pattern running all the way through the dismissal literature. One sociological analysis argues that the ideological structures of western medicine systematically undermine the credibility of certain bodies, particularly those historically read as female, as reliable reporters of their own experience [2]. In a qualitative study of Long Covid cases, 79% of them reported negative interactions with medical professionals, and the female respondents were specifically more likely to have their symptoms put down to anxiety or to psychosomatic causes [3]. Yeah. That is the data, not just a feeling.
For people with hEDS, the “looks fine” problem is a very real one. A lot of them appear physically well. They can often push through just enough to perform adequacy across a short consultation, all while managing constant pain underneath the surface, and their symptoms tend to be variable, worse on some days than on others. None of that makes the condition any less real, but it does make it a lot easier for a busy clinician to wave away.
A quick note on the term “medical gaslighting” while we are here, because it gets thrown around an awful lot. There is a reasonable argument that much of what gets called gaslighting does not actually involve any intentional manipulation at all, and that “medical invalidation” is a more useful term for it, mostly because it does not require you to prove intent [10]. I think that is a sensible enough distinction to make. The experience of having your pain pinned on anxiety when it is actually a connective tissue disorder is real regardless of what you decide to call it, and the label honestly matters a lot less than just spotting the pattern itself.
What It Does to the Body Work
This is the part most directly relevant to what we actually do day to day. And it is also the bit I probably see more clearly than some people, mostly because the body work is exactly where this history tends to show up.
The first thing is increased hypervigilance towards your own body signals. If you have spent years having symptoms dismissed, you learn to monitor yourself far more closely, partly so you can gather enough evidence that you cannot be argued with next time around. It is a reasonable adaptive response to a fairly unreasonable environment. But it does come with a cost attached. Pain systems run partly on attention, and when you are constantly scanning around for signals, those signals tend to get turned up rather than down. The nervous system is not sitting in some separate box from the psychology, not even a little bit.
The second thing is healthcare avoidance. If every single time you go to a doctor you come away feeling worse about yourself, then eventually you just stop going. Or you delay until something is properly serious, and then you panic about it. Or you do go, but you edit yourself right down into whatever version of events you think they will find credible. So all of those behaviours make ongoing management much harder, and they sometimes lead to worse physical outcomes down the line, and the whole thing rather feeds itself in a way that is genuinely tough to interrupt once it has started.
The third one, and the one that comes up the most in rehab, is a deep distrust of your own internal signals.
When you have been told over and over again that what you feel is not real, the logical end point of all that is uncertainty about what you are actually perceiving in the first place. People describe this to us a lot, actually. They genuinely do not know whether what they are feeling is a real physical signal worth acting on, or just the “anxiety” they have been told explains the whole lot. And that is a brutal place to be standing when we are then asking you to build up proprioceptive awareness and learn to read your body’s loading signals accurately. The instrument has been calibrated against years of dismissal, and so it throws the readings off.
The Mental Health Side: Where to Go and Why It Isn’t Us
If any of this is landing with you, the first thing to say is that what you are describing is a recognisable, named pattern, and it makes complete sense given everything you have been through. That is not nothing, and it is worth hearing.
The second thing to say is just as important as the first: the psychological work is not work to do with us.
We’re a rehabilitation business. We work with the movement, loading, and physical side of hypermobility and chronic pain. The psychological work, specifically the processing of trauma, working through the impact of years of dismissal and disbelief, addressing PTSD symptoms, managing the anxiety that comes with chronic illness, that is work to do with a qualified mental health professional. Not with us.
So, if you are in the UK, the starting point is your GP, who can refer you into NHS Talking Therapies (the service that was for a long time called IAPT), or you can self refer to NHS Talking Therapies directly without going through the GP at all. If you would rather find a private therapist with some experience of chronic illness, the BACP (British Association for Counselling and Psychotherapy) runs a therapist directory that you can filter by specialism. A psychologist who has worked with chronic pain and medical trauma before will understand the particular shape of this. That is the expertise you actually want for the psychological piece, and it is not ours to offer.
Now, what I would caution against is assuming that you have to process all the trauma before you can do any of the physical work, or that the physical work will somehow go and fix the psychological side off its own back. Both of them can run along in parallel, with different professionals, at the same time. They support each other, sure, but they are not the same job.
What Rehab Can Actually Do
Right, this is the part that I can speak to directly.
Working in a body that you have been taught to distrust is harder. Not impossible, but harder, and anyone who tells you otherwise has not worked with this particular group much. The pace matters more, and the framing matters more too. The conventional “push through it, load up, stop whinging” approach does not land at all well for people who have spent years being told their physical experience is not reliable. It just confirms the story that the body cannot be trusted, mostly because a lot of the time it then goes and reacts in ways nobody actually predicted.
What structured loading can do, done carefully and slowly, is start to rebuild the relationship between intention, action, and a predictable outcome. You do a thing, the thing then produces a result, the result is roughly what you expected it to be, and then you go and do it again. Over time, that whole sequence starts to become a more reliable internal signal. It is not magic, it is just repetition inside a predictable environment. So that is why the Full Body Fibro Course and the studio sessions are built around progressive loading rather than arbitrary targets pulled out of thin air.
The proprioceptive angle is worth a quick mention here too. One of the more consistent findings in hypermobility research is that proprioceptive signals are simply less precise to begin with, so there is real neurological noise sitting in the system. Now, that is separate from medical trauma, it is a feature of the connective tissue itself, but it does tangle up with the hypervigilance problem in a fairly unhelpful way. A body that is genuinely harder to read from the inside, combined with a long history of being told that you are misreading it anyway, makes for a pretty rough starting point. So you set a baseline, you progress it slowly over time, and gradually the internal signal that says “this is manageable and I know what this is” starts to become a bit more reliable. That is the work, more or less.
The alexithymia post covers a lot more on the interoception side of all this. The autism and hypermobility piece gets into the sensory processing complexity that sits alongside this in a fair number of people with hEDS. Both are worth a read if this section hit close to home.
Bottom Line
Medical trauma in the EDS community is real, it is well enough documented to take seriously, and it is a rational response to a healthcare pattern that has been recorded across a fair few different countries now. Ten years to diagnosis, fifteen or more clinicians, symptoms waved away as psychosomatic, none of that is just bad luck. It is a structural problem, and it has been a structural problem for a very long time.
The mental health knock-on effects, the anxiety, the depression, the PTSD patterns, the hypervigilance, the healthcare avoidance, none of those appear out of nowhere. They come from a specific and fairly predictable kind of repeated experience instead. Understanding all that does not fix anything on its own, to be honest with you, but it does change how you go on to frame the next bit.
So, the work to address the psychological layer belongs with qualified mental health professionals. The work to rebuild a functional, trustworthy relationship with your own physical body and what it can actually do? Well, that is the part we can help with. They are different processes, both well worth doing, and you really do not have to pick which one comes first.
FAQ
Is medical trauma a recognised diagnosis?
Not as a standalone formal diagnosis in DSM-5 or in ICD-11, no. It is usually understood as a form of PTSD or complex trauma, with particular features that come out of healthcare experiences specifically. The thing that sets it apart from the standard PTSD models is that the traumatic context, the medical encounter itself, is not something you can avoid or file away in the past when you have a lifelong condition. If you are experiencing symptoms, the label matters a good deal less than going and talking to a GP or a mental health professional who can assess and help.
Do I need to sort out the psychological side before I can do the rehab work?
No. The two of them can run along in parallel, and they often work a fair bit better that way round. You do not need to have processed all of your medical history before you can start loading a joint safely. And you do not need to wait until you are physically stronger before you go and address the psychological piece either. They interact with each other, sure, but they do not have to happen in any particular sequence.
Can rehab help with the psychological side?
It can have a positive effect on it. Building a predictable, trustworthy experience inside your own body, where your actions have consistent outcomes, does help to reduce hypervigilance over time. But that is a long way off from saying that rehab is a treatment for PTSD or for medical trauma. It is not. That processing needs a mental health professional who has been trained for it.
What should I look for in a mental health professional for this?
Ideally someone with experience of chronic illness, chronic pain, or medical trauma specifically. In the UK, your GP can refer you, or you can go straight to NHS Talking Therapies yourself. The BACP website has a therapist finder where you can specify experience with chronic illness or trauma. What tends to matter the most is that the therapist actually understands the ongoing nature of your condition, and does not treat your history as something to simply reframe away.
Why did this happen to me?
For most people with hEDS, the honest answer is a combination of things that are not personal at all. A condition that is genuinely hard to diagnose in the current system, a presentation that does not fit neatly into a short and time pressured consultation, and a diagnostic track record that was probably going to be a bit bumpy regardless of who you happen to be. The fact it happened to you is not a reflection of you being a bad historian of your own symptoms. It is a reflection of a system that was not set up well for this condition. That matters, not because it fixes anything, but because the self blame that tends to ride along with this experience is not actually warranted.
References
- Halverson, C.M.E., Cao, S., Perkins, S.M. and Francomano, C.A. (2023) ‘Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome’, Genetics in Medicine Open, 1, p. 100812. doi: 10.1016/j.gimo.2023.100812
- Sebring, J.C.H. (2021) ‘Towards a sociological understanding of medical gaslighting in western health care’, Sociology of Health and Illness, 43(9), pp. 1951-1964. doi: 10.1111/1467-9566.13367
- Au, L., Capotescu, C., Eyal, G. and Finestone, G. (2022) ‘Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment’, SSM – Qualitative Research in Health, 2, p. 100167. doi: 10.1016/j.ssmqr.2022.100167
- Trudgian, R. and Flood, T. (2024) ‘An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia’, PLOS ONE, 19(7), p. e0307574. doi: 10.1371/journal.pone.0307574
- Eccles, J.A., Quadt, L., McCarthy, H., Davies, K.A., Bond, R., David, A.S., Harrison, N.A. and Critchley, H.D. (2022) ‘Variant connective tissue (joint hypermobility) and its relevance to depression and anxiety in adolescents: a cohort-based case-control study’, BMJ Open, 12(12), p. e066130. doi: 10.1136/bmjopen-2022-066130
- Gardoki-Souto, I., Redolar-Ripoll, D., Fontana, M., Hogg, B., Castro, M.J., Blanch, J.M., Ojeda, F., Solanes, A., Radua, J., Valiente-Gómez, A., Cirici, R., Pérez, V., Amann, B.L. and Moreno-Alcázar, A. (2022) ‘Prevalence and characterization of psychological trauma in patients with fibromyalgia: a cross-sectional study’, Pain Research and Management, 2022, p. 2114451. doi: 10.1155/2022/2114451
- Kleykamp, B.A., Ferguson, M.C., McNicol, E., Bixho, I., Arnold, L.M., Edwards, R.R., Fillingim, R., Grol-Prokopczyk, H., Turk, D.C. and Dworkin, R.H. (2021) ‘The prevalence of psychiatric and chronic pain comorbidities in fibromyalgia: an ACTTION systematic review’, Seminars in Arthritis and Rheumatism, 51(1), pp. 166-174. doi: 10.1016/j.semarthrit.2020.10.006
- Slepian, P.M., Axenova, K., McCarthy, M., Siegal, R., Gobin, K., Weinrib, A., Buryk-Iggers, S., Santa Mina, D., McGillis, L., Mittal, N., Katz, J. and Clarke, H. (2025) ‘Rates of mental health concerns among individuals assessed at the GoodHope Ehlers-Danlos Syndrome Clinic’, Orphanet Journal of Rare Diseases, 20, p. 75. doi: 10.1186/s13023-025-03550-5
- Bulbena, A., Gago, J., Pailhez, G., Sperry, L., Fullana, M.A. and Vilarroya, O. (2011) ‘Joint hypermobility syndrome is a risk factor trait for anxiety disorders: a 15-year follow-up cohort study’, General Hospital Psychiatry, 33(4), pp. 363-370. doi: 10.1016/j.genhosppsych.2011.03.004
- Fuss, A., Jagielski, C.H. and Taft, T.H. (2024) ‘We didn’t start the fire … or did we? A narrative review of medical gaslighting and introduction to medical invalidation’, Translational Gastroenterology and Hepatology, 9, p. 73. doi: 10.21037/tgh-24-26
