01/02/2026
I've been doing some CPD to help me better understand & manage patients with hypermobile Ehlers Danlos Syndrome (hEDS).
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Can you imagine going to your doctor or health professional & being told it "was all in your head" or "you don't look like you're ill?" I knew from my current clinical experience that hEDS sufferers were termed "revolving door" patients. Often undiagnosed & moving from health professional to health professional seeking help. I'm always shocked to hear how these patients are gaslit by their health providers. On a discussion last Tuesday with colleagues we spoke at length about this. These were a small sample of comments taken from patients personal accounts on their health care journey.
I read a study from Halverson et al 2023 who coined the phrase "clinician-associated traumatization." Basically it's where repeated gaslighting caused patients to lose faith in health care & their own ability to advocate for themselves. This resulted in anxiety & medical avoidance.
hEDS is a complex, multisystemic condition affecting the connective tissues. It's characterized by complaints of chronic pain & fatigue, along with many neurological, cardiovascular, and gastrointestinal issues.(Halverson et. al 2023). You can see that in order to manage hEDS a patient needs to see lots of different professionals. Inadvertent comments really matter as they can lead to medical invalidation.
📖 Read what I've read
Halverson CME, Penwell HL, Francomano CA. Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes. SSM Qual Res Health. 2023 Jun;3:100237. doi: 10.1016/j.ssmqr.2023.100237. Epub 2023 Feb 9. PMID: 37426705;