Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes

RedFox

RedFox

Senior Member (Voting Rights)
Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes
https://www.sciencedirect.com/science/article/pii/S2667321523000215

Abstract:
Patients with hypermobile Ehlers Danlos Syndrome often experience psychological distress resulting from the perceived hostility and disinterest of their clinicians. We conducted 26 in-depth interviews with patients to understand the origins of this trauma and how it could be addressed in practice. We found that the cumulative effects of numerous negative encounters lead patients to lose trust in their healthcare providers and the healthcare system, and to develop acute anxiety about returning to clinic to seek further care. We describe this as clinician-associated traumatization. Ultimately, our interviewees described the result of this traumatization as worse – but preventable – health outcomes.
 
There must be hundreds of comments below that tiktok video, reporting feeling similarly disrespected and variations on that theme. And the video hasn't been up for a day yet.

I'm feeling a bit ambivalent about the paper and even more so the video. For sure I've experienced some horrible treatment from doctors. But I'm not sure what I think about hEDS. I can understand a decent doctor being dismissive about the condition and the ideas someone might have about it picked up off the internet - although of course the doctor should not be dismissive of the person and their symptoms. I expect there's an enormous clash of views, making it hard for both for the doctor and the patient.

I feel a bit uneasy about the idea of PTSD from clinician traumatisation. Some people, especially people who have nearly died due to doctor incompetence and disregard obviously have a fair claim to having PTSD. But, I don't know, it's not a label I'm comfortable putting on the impact of repeated disrespect, poor listening, arrogance, lack of care and occasional dismissal that I have experienced. It's not really the fault of individual doctors that they can't help me and that they believe exercise and therapy might help. Maybe it's just that PTSD means something different to me than what it is taken to mean now? In the same way that anxiety is now used the way I would use worry, but to me anxiety and being anxious means something pretty major and life-limiting.
 
This is an exemplary and badly-needed paper. It describes my experiences as a person with ME to a tee, and the accounts I hear from other chronically ill people. It highlights that uninformed or demeaning care creates a significant burden of iatrogenic harm.

I'd like a further discussion of how inadequate care affects people who have a chronic illness and have co-occurring mental disorders or are neurodivergent like me. These people are far more vulnerable than the general population w/chronic illness and will be gaslit far more often, because doctors can falsely attribute medical symptoms to true mental health problems. The deleterious effect of medical gaslighting on my social and emotional functioning is my second-worst health problem.

I became physically disabled so early in life (age 21) that I had no real career. If I got sick just 1-2 years later, I may have had employer-sponsored disability and health insurance, broadening my healthcare options. Someone who was never able to work due to autism etc. will face the same problem.
 
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You make good points @RedFox. For me, I had decades of mostly being respected, in my work and elsewhere. Also, when I got sick, my two children, who were both happy with their lives, became sick too. None of us had a history of mental illness. So it made it much easier to be sure that we were physically sick. And, even so, even with all my reserves of self-confidence and the facts suggesting we had not all suddenly and collectively taken leave of our senses and decided bed looked too inviting to engage properly with the world, even with all of that, the harm caused by doctors and self-doubt has been considerable.

So, I'll shut up and listen.
 
RedFox said:
This is an exemplary and badly-needed paper. It describes my experiences as a person with ME to a tee, and the accounts I hear from other chronically ill people. It highlights that uninformed or demeaning care creates a significant burden of iatrogenic harm.
Click to expand...

I have not gone through the paper in great detail but like Hutan I think there may be problems with it.

One thing that is strange is that only one out twenty six cases was male and there is no reason why any genuine EDS group should show that.

The major problem I see is that the diagnosis of hEDS is probably so vague as to be meaningless. In the UK I suspect that at least 90% of people given the hEDS diagnosis do not have any form of EDS. It is a complicated topic we have discussed before.

So although I greatly sympathise with PWME who has been dismissed and I sympathise with people who have been told they have hEDS and then are dismissed I think the two situations are different. I think the real problem for hEDS is that large numbers of people are told they have it and that it explains lots of different symptoms when in fact they don't. The traumatisation of being told that they don't really have symptoms due to EDS is the fault of the doctors who told them they did, not those who told them they didn't.

If this was a study on people with vascular EDS or one of the other types with documented genes, that would be quite a different matter. Why is this study just of hEDS? Why no males?
 
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