> CTDs often remain undiagnosed for a long time

This seems to be a common thread, my wife's EDS diagnosis took more than a decade. It's a straightforward and obvious physical ailment. Even after her diagnosis she ran into problems - she once had to leave an ER without treatment for an unrelated problem, because the attending refused to treat her until she admitted that she was lying about her diagnosis. Hearing her stories and seeing first-hand how her medical interactions go has really shaken my faith in the medical system.

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.

I 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.

10-20 years is average time to diagnose for hEDS. Though 90% of people who have it will never get diagnosed so the average is really never.

Thanks for your comment. I have mild hEDS and have always been scared by cipro. Now I know it is likely awful.

If only I could mark myself with “never administer cipro and friends” in some way that would be respected even if unconscious…