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

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.

 

Coverage from an EDS doctor: https://vm.tiktok.com/ZMYkc6nrY/ (5-minute video)

 

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.

 

I hear you.

 

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?

 

Always focuses on distress, never the real life consequences of being disabled with no support. That framing has to change.