Ehlers-Danlos Syndrome and the Impact of Medical Trauma

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Adam Foster

Director at The Fibro Guy

Adam Foster is the founder of The Fibro Guy and one of the leading voices in hypermobility, EDS, and chronic pain rehabilitation. A former Reconnaissance Soldier, he developed chronic pain after an IED blast in Afghanistan and built his approach from the ground up when the medical system had no answers. Since 2009 he has worked with thousands of people across eight countries, drawing on pain neuroscience, motor learning, and sensorimotor rehabilitation. He co-authored "No Pain, No Pain" with trauma psychologist Dr Mairi Harper, directed the documentary "Invisible Monster," and has been featured in Forbes, BBC Radio 4, ITV News, LiveScience, and The Telegraph.

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A lot of those with Ehlers-Danlos syndrome end up bracing themselves before an appointment, working out quietly which parts of the symptom list are safe to mention and which ones tend to get the raised eyebrow, and a fair few of them stop going altogether. That’s a learnt behaviour, and the learning happened in clinics. What people with EDS actually describe is distrust of clinicians, real anxiety in the run up to going back, doubt about their own reading of their symptoms, and learning not to mention a stigmatised diagnosis in the first place, a pattern that has been given the name clinician associated traumatisation ^[1]. All of which sits on top of an average wait of just over ten years for a diagnosis, with a stack of other labels collected on the way first ^[2].

So, this article covers what medical trauma actually means in EDS, how long the dismissal typically goes on for, why this particular condition attracts it, what it does to you afterwards, where the PTSD overlap genuinely sits and where it stops, and what the two different kinds of help can each do.

What Medical Trauma Means in EDS

What comes up in the EDS material is cumulative, the same conversation over and over with a different clinician each time, landing on anxiety, or deconditioning, or something being made more of than it is. And the consequences people describe run to distrust, dread in the run up to a clinic visit, self doubt about what they are feeling, avoidance of naming certain diagnoses to a new clinician, and worse health outcomes coming out of all that avoidance ^[1].

Now, the wider framing for this is medical traumatic stress, the bit of ground where health psychology and trauma psychology meet, and it covers the psychological aftermath of illness, procedures and frightening treatment ^[3]. What makes the EDS version of it particularly awkward though, is that the thing you’d want to avoid is also the thing you need, as the appointment comes round again in six months whether or not you’ve made your peace with the last one. (Standard avoidance advice falls apart pretty fast when the feared situation is your own rheumatology follow up.)

A word of caution about how strong any of this actually is. In fibromyalgia, repeated stigmatising encounters have been described as something that can resemble medically induced retraumatisation. That description comes with a limit attached to it in the same breath, which is that it rests on what people report and on conceptual work rather than on anything that has tracked new cases forward over time ^[4]. The EDS material is the same shape, people telling you what happened to them, and in hEDS that includes harmful dismissal, the relief when somebody finally took them seriously, and worry about medical PTSD raised by the people living it ^[5].

Gaslighting, or Invalidation

Medical gaslighting is the phrase that has stuck, and it does a job, as it names something people recognise the second they hear it. It carries a problem too though, in that gaslighting means deliberate manipulation, and you can’t see intent from the other side of a desk. Most of the appointments described in this material don’t read like somebody setting out to deceive anybody, they read like somebody short of time, short of training on a condition they have barely met, reaching for the explanation that fits the ten minutes available.

Invalidation is the term that actually does the measurable work here: it covers being discounted, being told that what you are feeling is less than it is, being told it’s stress, and having your account of your own body treated as unreliable, and not one of those requires anybody to have meant it ^[6]. The mistrust that comes afterwards has been written about as a problem for health services to solve ^[7], and the consequences people describe, from shame right through to avoiding care altogether, look the same regardless of what was going on in the clinician’s head ^[8].

So, the useful framing is that repeated invalidation is clinically consequential, in that it delays diagnosis, changes what people are willing to report, and pushes people out of care entirely, which makes it a safety and access problem ^[9][8]. It’s also the framing most likely to get a service to change something.

The Years Before Anybody Believed You

How long the diagnosis actually takes is the part of all this with the firmest numbers under it. In a large group with clinically confirmed hEDS, average time to diagnosis came out at just over ten years, with a run of other diagnoses picked up and discarded along the way ^[2], and a group in the United States landed on much the same decade ^[10].

UK figures are considerably worse: across the UK, average delay for hEDS and hypermobility spectrum disorder ran to somewhere around two decades depending on how it was counted, with real regional differences in it and a lot of people paying privately to get anywhere at all ^[11]. An international picture put hEDS at a little over two decades, with HSD shorter than that ^[12], and a German figure landed in much the same place ^[13]. So, the delay shows up the same way wherever anybody has counted it.

Two decades is a large chunk of somebody’s adult life spent being told there’s nothing much wrong with them, and then, quite often, being handed a diagnosis that explains things they stopped mentioning years ago.

Part of why it keeps happening here, is that hEDS mostly doesn’t get recognised in general practice. Even after the criteria were reworked in 2017 and a GP toolkit went out, only a small proportion of UK diagnoses came through primary care ^[14]. And the experiences described along the way are consistent to the point of being boring: scepticism, minimising, the wrong label, and clinicians who had genuinely never come across it ^[15]. Women in Australia describe the same shape of thing, right down to having to go and learn about EDS themselves and then explain it to the person sitting opposite them ^[16].

Why It Happens, and Who It Happens To

There are a few reasons this condition in particular runs into it, and they stack rather than compete.

The first is that hEDS is awkward to diagnose, as it doesn’t show up on bloods or imaging, it’s diagnosed on examination and history, and doing that properly takes more time than a standard appointment has in it. Uncertainty runs right through the condition, about what it is, what it’s going to do, and whose job it is, and that uncertainty sits with the person as much as it does with the clinician ^[17]. The comorbidity load is genuinely multisystem too, so what walks into the room is gut symptoms, dizziness, fatigue, pain and joints all at once ^[18], which reads either as something very complicated or as something psychiatric, and the second one is quicker.

The second reason is more uncomfortable to put down in writing: gender bias in pain care is one of the better documented things in this whole area. What gets described in pain care is women being characterised as emotional, exaggerating or psychologically distressed rather than physically unwell, and that characterisation then feeding into the treatment decisions that get made ^[19][20]. In emergency department records from two different countries, women turning up with pain were less likely to be given pain relief, less likely to have a pain score recorded at all, and spent longer in the department than men did ^[21].

All of which matters here, because hEDS and HSD groups are overwhelmingly female ^[11][12]. The phrase “all in your head” turns up so reliably in accounts from women with overlapping pain conditions that it’s ended up with a name of its own, disenfranchising talk ^[22] (academia does love a name for a thing). Australian women with long term conditions, some of them with EDS, described being labelled as anxious, being disbelieved outright, calling the experience traumatic, and being frightened of future care ^[23].

It isn’t spread evenly by money either, as in disadvantaged communities in England, people with chronic pain describe dismissal, being treated as though they were after medication, and eventually disengaging from care altogether ^[24].

What Repeated Dismissal Does

Pulled together across contested conditions including EDS and fibromyalgia, the consequences sort into four groups. Emotional states the encounters themselves produce, including shame and in some accounts suicidality. Anxiety and trauma specifically about healthcare. Avoidance of healthcare. And delayed diagnosis, which then feeds the whole thing round again ^[8].

Not all invalidation does equal damage either. In fibromyalgia, the dimension that comes out as the most damaging is discounting, meaning being told what you’re feeling is less than it is, rather than a clinician being clumsy or over involved ^[25].

Now, the behaviour changes are where it all compounds. Invalidated pain goes together with under reporting pain to doctors and dentists, which sets up its own barrier, as the clinician is now working from a number you’ve deliberately shaded down, and reaching a perfectly reasonable conclusion from bad data ^[26]. People describe going quiet in advance, dropping out of help seeking entirely, and carrying the self doubt home with them afterwards ^[27]. In fibromyalgia, close to half say the condition has made them afraid of seeking healthcare ^[28]. Elsewhere, a clear majority said they’d never been given a satisfactory explanation from a doctor of what was actually causing their pain, which is its own kind of dismissal, quieter than being disbelieved but doing a similar job ^[29].

Stigma and outcomes track together across chronic pain more broadly, in that more stigma goes with more pain, more disability and more depression, and the sizes involved are small to moderate rather than enormous ^[30]. The same directions turn up elsewhere, along with less social support around the person ^[31]. In fibromyalgia, stigma is described as taking away dignity, isolating people socially, and eroding trust in clinicians as a group ^[32]. All of that is association though, and two things turning up together doesn’t show that one produced the other, particularly when pain, disability and low mood all lean on each other anyway.

One more thing in here doesn’t fit neatly into an outcome measure. Being treated as an unreliable witness to your own body is described by people with chronic pain as shaking their sense of who they are ^[33], and it follows people into rooms that have nothing to do with medicine.

The PTSD Question

PTSD and chronic pain overlap a great deal. In people seeking treatment for chronic pain, PTSD goes with worse functioning than having been through a traumatic event without the PTSD ^[34], and traumatic experiences and post traumatic symptoms turn up commonly alongside chronic pain ^[35]. In fibromyalgia specifically, trauma exposure and post traumatic symptoms go with more severe pain, worse sleep, more anxiety and depression, and more difficulty functioning, with anxiety looking like part of how the two are linked ^[36][37]. Childhood trauma and complex PTSD show a similar association with chronic pain later on ^[38].

There’s a limit on all of that though, and it changes what you can take from it. What’s being measured there is lifetime trauma and PTSD, not trauma produced by medical care itself ^[37][38]. So it tells you that this population carries a lot of trauma and that carrying it makes things measurably worse, and it doesn’t tell you what share of that came out of the appointments. In hEDS, the medical PTSD idea is something people raise about their own experience of care ^[5].

None of which is a reason to wave it away, it’s a reason to describe it properly: repeated invalidating medical encounters are consistently linked to distress, mistrust, avoidance and delay, and the trauma framing rests on what people say about their own care.

What Actually Helps in the Room

Validation and clear communication come up again and again as the thing that interrupts all of it. In fibromyalgia consultations the pattern that keeps repeating is uncertainty, clinician scepticism and dissatisfaction feeding each other, and what breaks that loop is the clinician taking the report seriously and being clear about what is and isn’t known ^[39]. Being straight about the uncertainty seems to do more work than having an answer does. In rheumatology, a fibromyalgia label went with lower trust and lower satisfaction where communication was poor or the uncertainty was not handled openly, and explaining the mechanism as a conversation held trust better than handing over the category on its own ^[40]. UK accounts from people with fibromyalgia describe the opposite version, being ignored, dismissed and disbelieved by GPs, sometimes told straight out that it was all in their head, with knock on effects on trust and on whether they went back ^[41].

What the evidence points at, for the system rather than for you personally:

Trauma informed care: repeated stigma and dismissal in these conditions have been described as resembling retraumatisation, and as clinician associated traumatisation, which makes it a safety and access problem ^[4][1].

Validation alongside an open account of uncertainty: acknowledging what isn’t yet clear, and listening without reaching for a psychological explanation first, is what keeps people engaged with care at all ^[39][40].

Care that is actually joined up: hEDS and HSD carry a multisystem load across several specialties, and fragmented care is one of the most consistent failures described ^[11][13][18].

Asking about trauma as routine in chronic pain: PTSD in chronic pain goes with worse functioning and greater treatment need, which is an argument for asking rather than waiting for somebody to volunteer it ^[34][35].

The one thing in there that’s actually within your control is the under reporting, and that’s a genuinely difficult ask. Shading your symptoms down is a sensible response to being disbelieved, and it also hands the next clinician worse information than they need ^[26].

What Rehab Can Do, and What It Cannot

This is the part I can speak to directly, and there’s a line in it we don’t cross.

The psychological work isn’t ours: processing what happened to you in medical settings belongs with a qualified mental health professional, ideally one who’s worked with chronic illness or chronic pain before, as the ongoing nature of the condition changes the job considerably. A therapist who treats the whole thing as a past event to be reframed has misunderstood the problem. In the UK that’s a GP referral or a self referral into NHS Talking Therapies, and the BACP directory lets you filter for experience with chronic illness and trauma.

What rehab does have to deal with though, is the residue, as it turns up in the work whether anybody plans for it or not. Invalidation is associated with people disengaging from help seeking and pulling back from rehabilitation ^[42], which is a problem when rehabilitation is the part that actually shifts what you can do. If somebody has spent fifteen years being told their physical experience isn’t reliable, then a coach telling them to push through it is just more evidence for the same conclusion.

So, the work is slow and predictable on purpose. You do a thing, it produces a result, the result is roughly the one you expected, and then you go and do it again. Over time that rebuilds a usable relationship between what you intend and what your body actually does, which isn’t a treatment for trauma and isn’t being sold as one. It’s the thing that has to be in place before loading anything means very much.

Neither of those two pieces of work has to come first, as they run alongside each other, with different people doing them, and you don’t need to have sorted out fifteen years of medical history before you’re allowed to start loading a joint properly.

The Fibro Guy

References

[1] Halverson, C.M.E., Penwell, H.L. and Francomano, C.A. (2023) ‘Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes’, SSM – Qualitative Research in Health. https://doi.org/10.1016/j.ssmqr.2023.100237

[2] 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. https://doi.org/10.1016/j.gimo.2023.100812

[3] McBain, S. and Cordova, M.J. (2024) ‘Medical traumatic stress: Integrating evidence‐based clinical applications from health and trauma psychology’, Journal of Traumatic Stress. https://doi.org/10.1002/jts.23075