EDS So White

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.

And she shared what that entailed here, in a post she finally got published by The Ehlers-Danlos Society last year. (Yay, finally.)

And it’s a great post. But I just know there have to be more enlightening stories out there from even more of you.

Truly. How do we alter this ratio, if we can’t/don’t find and signal boost them/you?

I follow many POC on Twitter, including the incredible and lovely @lilririah and @imani_barbarin from whom I’ve learned a lot.

But they don’t talk about EDS or HSD. (Yet.)

So my quest for additional BiPOC and all VOC continues during this May, aka “EDS Awareness Month”. I’m seeking to signal boost POC with EDS for once if we can.

Like, as hard as I think my diagnostic journey was/has been, I can’t even imagine how much harder it must be as a POC. Especially in the United States and UK, where we center white voices almost to the exclusion of all others.

I know I’m privileged, and even in ways I still haven’t yet recognized. Nay, I think you could have even called me a “Karen” once.

(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!

To your health,

Jandroid, the undeniably white android