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title
Brilliant Mind Broken Body
description
Living with Ehlers-Danlos Syndrome
site name
Brilliant Mind Broken Body
author
updated
2026-02-22 11:50:28
raw text
Brilliant Mind Broken Body | Living with Ehlers-Danlos Syndrome Home About Brilliant Mind Broken Body Living with Ehlers-Danlos Syndrome Feeds: Posts Comments What do you do about the doctor? September 4, 2015 by brilliantmindbrokenbody One of the hard parts about having a chronic illness is that some doctors are just going to fail you. And some of them are going to fail you badly, in ways that are really harmful. I can’t remember if I’ve already mentioned this before, but the first geneticist who I saw was an absolute prick, and beyond useless. He told me I had “familial joint instability” and not Ehlers-Danlos Syndrome. I saw him because he was local, in-network for my insurance, and his office claimed he was experienced with EDS. He talked over me when I tried to ask him questions, like why he wasn’t considering my symptoms other than joint instability in making his diagnosis. He made me feel disregarded, and above all like the most important thing for hi...
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