4 ms·
EDS has a bizarre stigma attached to it for some reason. I'm pretty noticeable (I can fully dislocate my shoulders, for example), so I was immediately diagnosed
by sterlind 4y ago
EDS has a bizarre stigma attached to it for some reason. I'm pretty noticeable (I can fully dislocate my shoulders, for example), so I was immediately diagnosed with HSD, and finally with hEDS a year later. I haven't had issues with doctors since that, but I got treated terribly in the interim.
I've heard that MS was stigmatized like that before the neurology was appreciated. But EDS has one of the highest disability-to-stigma ratios of any disorder I've known. It gave me a spinal cord injury, for Pete's sake.
- drc500free 4y agoI think it unfortunately boils down to externalized shame from MDs who can't admit they don't know something, mixed with old biases about neurotic women who make up ailments. Nearly all medical knowledge is based on rote memorization in med school and received tribal wisdom during residency. MDs aren't given the time and mental space to really sort out which things are true and which are superstition while they are in training. Ideally the check from a knowledge perspective is CMEs and a separate group of medical researchers that inform med school curriculum, but there is no real check on the eye-rolling and "oh, you have to deal with one of THOSE" that they are exposed to during residency.