Z is for zebra. In the medical field, early-career medical professionals are often told “when you hear hoofbeats, think horses not zebras,” meaning that it’s unlikely your patient has an extremely rare case of something, it’s more likely that they have something widely known.
People with Ehlers-Danlos Syndrome are known as Zebras because all of our hoofbeats point to horses but really are zebra problems. I wear my stripes as a badge of honor in the form of scar tissue, bruises, and the tattoos I chose to get me through when I didn’t know how I would.
Even with zebras, there are similarities but how it affects you varies from person to person. People with EDS are likely to come from other people with EDS, so in turn, my diagnoses led to my mother and maternal grandmother’s suspected diagnoses as well. My father’s mother passed away over 40 years ago, and very little was known about her medical history other than “she was always sick in some way.” I have some of her same conditions as well, which has led me down the path of researching what happens when two people with EDS genes have a child.
I’ll never know if my paternal grandmother had Ehlers-Danlos Syndrome or any of the comorbidities that I live with. But as a zebra, I’m traveling down the path of “I don’t want anyone else to experience this alone in the way that I did” by information and resource sharing as much as possible.
We zebras may be rare, but our experiences and pain are worth knowing and understanding.
I hope you have a different view now of people with disabilities.
I hope you see the cracks in the system and how we fall through.
I hope you understand more about every letter of the alphabet and will refer back to this when you need it.
The knowledge is out there. But zebras need your hoofbeats too.
For more on Ehlers-Danlos Syndrome and our zebra status, check out the EDS Society website here: https://www.ehlers-danlos.com/why-the-zebra/
A special note about the zebra illustration: My illustration partner in the ABCs, Jessi Allan, worked on this with their student B.A. It is one of Jessi’s favorite pieces of art they’ve ever done, and I think will end up being the zebra tattoo I get for making it through the ABCs.
Pre-diagnoses, I was a private person with all of my life in little safe boxes that never interacted. The emotional and mental energy that went into this project over many months were not easy. I am forever grateful for my illustration partner, a fellow PWD who is trans and non-binary and their work on this project. If you’d like to thank Jessi for their contribution, please venmo @busteropen.