So I tried to enlist zebras of color to share their stories of trying to get diagnosed with EDS/HSD three years ago in 2017. Because if you haven’t yet noticed, the EDS space is very white. And female. Mostly.
Or at least what I’ve encountered so far is. (I’m in over 40 EDS related groups on Facebook, and the vast majority of participants are women or female-identifying to my unscientific observation, and again, majority white.)
And the loudest or biggest voices all seem to be white females to me so far.
Including myself. (Except when I flush. Then I turn bright red, whee!)
So I decided to try to both acknowledge this fact, and do something about it. I wrote that post to try to find some voices of color to boost for a change to help alter this ratio.
After all, the Ehlers-Danlos syndromes (EDS and the HSDs) don’t discriminate, so neither should we! (They really don’t: they run across all races and ethnicities pretty evenly.) But you wouldn’t know it from all the blogs and medical literature featuring only images of white patients.
I got a few good nibbles of interest, but only one good bite, from the lovely Nia Hamm of Boston’s NBC10 affiliate. Turns out she also has EDS and had a fairly typical painful EDS diagnostic journey. With one exception: she’s Black.
(A “Karen” for the uninitiated, is a privileged white woman who threatens to either “call the cops” or asks to “see your manager” at the slightest inconvenience or injustice. Making life somewhat hellish for the POC she is almost invariably calling out.)
Bad joke @terrjbenton recently tweeted:
“Someone said a group of Karens is called a privilege and I have not stopped laughing” (crying laughing smiley).
I have to admit that was pretty good!
So… I hope more POC speak up and out about your experiences getting diagnosed with anything at all, but especially any form of EDS or HSD and “friends”. We really do need to hear from more of you!