Published: 14/04/2023 Tags: Stories

I’m hoping to spark conversation about EDS

I was given my hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis almost a decade ago, sitting in a geneticist’s office, hearing words I already knew but couldn’t claim yet. It was vindication; it was proof; it was sad. He told me that my body may fail more and that having children would probably be problematic (I had endometriosis along with many other diagnoses at that point). He told me my life may take a turn, given that I’d already had 9 surgeries, and few were successful in any meaningful way.

It was a conversation I waited years to have and immediately wished I could take back.

After the initial shock, I knew it was good. I had a game plan. Three months later, I went to the EDS Conference. Learning was how I coped.

Armed with new terminology, I talked with my doctor about my medication resistance and allergies, my options, and my future. It didn’t take long for me to decide to move across the country to find pain relief, ease my POTS and MCAS suffering, and hopefully have a better overall quality of life. I found my place in the PNW. I started fresh. Once a special effects makeup artist, I turned to something I could do from the horizontal position. I turned to writing.

With my life as it has been, I gravitated to telling stories with trauma first—something I’ve had plenty of. I couldn’t tap into my disability yet. It felt too close. So, I wrote about grief from a magical realism perspective. But it wasn’t enough. I knew I needed to write about chronic illness. I couldn’t do it from a place of disability, sadness, or even triumph, though. That felt inauthentic to me. I see myself as a woman, a wife, a cat mom, a writer, a crafter, and a peach-haired human who wants to live her best life on the days she can. I don’t see myself as a sick person who should be pitied for her pain or celebrated for getting out of bed.

They say to write what you want to see—or in this case, what you don’t see already written.

First, I wrote a suspense novel where a woman with trichotillomania goes home to deal with childhood trauma (read: finding a dead body). Her trich was just a part of her. Most people—even those of us who have been consumed by it at some point in their life—still had to live their day-to-day life. And so does she.

For my next few books, I showcased people with different physical or mental issues that were just aspects of them. Their stories didn’t revolve around it.

I still hadn’t tackled EDS. I knew I wanted to, but I wanted to portray it like I have the others—just a person who happens to have it.

One day, I was reading about murderesses. A lot of them were named Elizabeth. It’s funny because that’s my real name (though I publish under one of my many nicknames—Elle). I thought, this will be weird, but what if I write a woman named Elizabeth with EDS who wants to kill people? It could be darkly funny. I mean, think of an EDSer trying to stab someone or drag a body somewhere.

I ruminated on it for a while because our community isn’t seen in the media often. So many times, representation is expected to be positive, super broad to encompass the entire disorder, or explain the ins and outs of what it really is—at least in the very beginning. But this book wouldn’t be that.

I decided it could be good that it didn’t go out of its way to be positive, that there would be a main character just living her life, being a human with hEDS. She has a significant other, a best friend, and part-time jobs. She deals with the pain by withdrawing, snapping, gritting her teeth, and crying—the same way we all do.

It felt like a study in how we as EDSers must balance what we want to do versus what we can do. Sure, you and I are balancing going to the movies or out to dinner, not sneaking into someone’s house to murder them, but the basic principles apply. Do we risk it? How important is it?

I’m hoping to spark conversation about EDS (not just hEDS), disability, and SSDI. I want people to know the word “subluxation” and understand that we fully dislocate, then shove our parts back in—sometimes while talking. I hope that helps people look at the world differently. I also hope to have more people feel inspired to write about disability in ways outside of the expected.

I don’t rep us all. I don’t want to. I also don’t think I’ll change the world. I’m not delusional (though the fictional Elizabeth may be). But I would love someone out there to feel seen.

I recently published an article that goes further into why I chose to write a disabled serial killer that I’m hoping will shed some light on chronic illness in fiction, if you’d like to check it out.

The book:

Add to Goodreads:

Website & newsletter (free horror short story): https:/

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