Why I Celebrate My Identity as an Ehlers-Danlos Syndrome 'Zebra'

I’ve always had a thing for zebras.

If you want to know the roots, it’s pretty simple. I was born an obsessive horse lover. Zebras were like the exotic, adventurous versions of horses. My feral child-self adored them.

Things compounded when, at age 7, I was bitten by a zebra.

No really, I have photographic proof.

I was in Texas. Y’know, where these kinds of things can happen. My family and I were in a wildlife drive-thu, I fed the zebras out of my hand, delightedly and bountifully. I ran out of food, my shirt was the same color as the food bag, and, well… the pictures explain the rest.

photos of a girl feeding a zebra and her expression after being bit
Leah feeding a zebra, and her reaction after it bit her.

It’s been a family story that I’ve delightedly told at every ice-breaker meet-and-greet for most of my life. As such, a lot of gifts I receive are decidedly zebra-themed, such as my favorite sweater I wore to my fangirl-dream-come-true trip to see “Hamilton.”

So the zebra was always a fun, somewhat quirky symbol of myself.

I got my diagnosis of Ehlers Danlos syndrome (a genetic disease I’ve unknowingly had all my life) around January of this year, only to discover that the symbol of the EDS community is no other than… the zebra!

Not only is the zebra a symbol for EDS, it is a well-used, well-loved symbol. EDS awareness banners, bracelets, memes, etc. are always covered in zebra stripes. EDS-ers refer to themselves as “zebras” or “one of the herd.” It’s actually a lot of fun and a very cool symbol to have for your illness!

It now seems that my early-age zebra bite was prophetic. Or a heavy-handed use of foreshadowing. Or the zebra infected me with its vampiric bite in an effort to turn me into one of its own.

I could go all days with these.

But jokes aside, finding out that the zebra was the symbol of my permanent, disabling illness, was not only deeply ironic, it was a little upsetting to me. Zebras were a bizarre, fun, personal flag of mine. Now it felt like it had been co-opted by something I felt very ambivalent about. Yes, having an official diagnosis was incredible, and having an explanation to my weird, lifelong body issues was a tremendous relief (you mean my ankles didn’t just give out and make me fall because I’m unbelievably clumsy? And my unexplained back pain wasn’t all in my head?), it’s still the thing that causes me to feel sick and debilitated every day of my life. I didn’t want the symbol of that to be my beloved zebras.

Here’s the thing, though. EDS isn’t new to my body, just my knowledge of it is. I have always had this disease, just like I have always loved zebras. Whether I knew it or not, I have always been an EDS-er, and I have successfully (to varying degrees) lived with it my entire life.

As much as people may like to say “I am more than my illness,” and “my illness doesn’t define me,” to some extent, my illness does define me. Yes, I am more than just my illness. I am also nerdy, and goofy, and I love animals, and I have a random obsession with English Tudor history. But I am also defined by my illness. My current lifestyle, my likes, my daily habits, my values, my relationships… those have all been determined, by some measure, by my illness. And, I guess, to some extent, it always has been. I have always had a lot of determination and resilience, and I think that is partly because I’ve lived my entire life in a body that was always somewhat dysfunctional. I learned at a young age how to work hard at a thing that didn’t come as easily to me as it did to other people, even if that thing was as simple as “walking.” There were certain things growing up I didn’t pursue or enjoy because my body didn’t allow me, and that has become exponentially more true in the past four years, since my illness has become more acute.

A lot of things about me have changed in that time period that I don’t like, for instance my self-confidence and self-competence, but some things have changed for the better. I know I am a more patient, more empathetic, and more appreciative person than I was before becoming acutely ill. So for better or for worse, every part of me has become informed by being chronically ill. That doesn’t make me any less “me,” it just make my illness one of the many things that completes the “me” package — but it’s a very hefty part of that package.

So the zebra is still a symbol of me, and the fact that it also symbolizes Ehlers-Danlos syndrome just makes it even more “me.” Sure, that makes the symbol more complicated than I had realized as a kid, but life is more complicated than I realized as a kid. And now I get to share this symbol with a lot of kick-ass EDS warriors who share and understand my struggles. Besides, even if we are all part of the same zebra herd, we still have our individual stripe patterns that keep us our own unique persons.

I am an EDS zebra. I always have been and I always will be, even if a cure was discovered tomorrow. I still love my (literal) zebras as much as I still love my old self… I just understand them both a lot better now. And that remains something to celebrate.

Follow this journey on SpoonShares.

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