How do you write a Zebra... and what does that mean, anyway? Let's answer the second question first.
Zebra, in this case, refers to people with Ehlers-Danlos Syndrome. The nickname stems from an old medical saying, "When you hear hoofbeats, think horse, not zebra." The saying itself serves as a useful reminder that most patients presenting with cold symptoms probably don't have a super-rare 1-in-100,000 infection. But sometimes the hoofbeats really do belong to zebra's and that's why a lot of us have adopted the name for ourselves (plus, to be honest, I think it sounds cooler than EDSer, which is the other generally accepted name.)
The basics are that there are actually 13 types of EDS, with hEDS being the most common. hEDS in particular is still considered a relatively rare condition, though more and more people are being diagnosed every year. Despite this, however, it is still fairly rare to find fictional characters with ANY TYPE of EDS. Offhand, I only know of a small handful of characters with EDS, and that's hardly enough!
It's important to note that EDS has gotten a large bump in representation lately, largely due to people sharing about their experiences online... but unfortunately, this also means that there's a lot of misinformation flying around. So, why should you listen to me?
I, my entire household, and several members of my extended family all have hypermobile Ehlers-Danlos Syndrome, (hEDS for short.) My mom was first diagnosed when she was a kid, which made my brother's and my diagnoses a lot easier. We've waded through the streams of misinformation and watched new studies for over two decades, and between us, we regularly experience a wide range of symptoms, from quite mild to fairly severe.
That said, I have to warn you that I have no medical training, so I can't give any actual medical advice, nor are my answers medically sanctioned... just based on my personal experience. And I don't represent the entire community, so I can only speak for myself and my family.
So, in the interests of helping out any fellow authors who want to write an hEDS Zebra, I'll be working on building a guide to writing... well... some Zebras. As I mentioned, there are 13 kinds of EDS, and I only have one of them. On top of that, hEDS itself is such a large spectrum that I can't possibly hope to tell you much about hEDS as a monolith, but I can tell you how it feels through my own lens of experience, and I can tell you what it looks like in the members of my immediate family.
So... that's a lot! If you have any questions about writing an hEDS Zebra, feel free to ask me. Please keep in mind that I'm not an expert or a doctor, and that like any other group of people, Zebra's opinions vary widely. I cannot speak for everyone, but if you want to know this Zebra's opinion or advice for a character with my condition, ask away!
Otherwise, stay tuned for the next fifth Wednesday!
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