Zebras, not horses: Ehlers-Danlos syndrome
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“When you hear the sound of hooves, think horses, not zebras.”
Zebras, not horses: Ehlers-Danlos syndrome
"Zebra Crossing"
A woman walked by, pulling her shopping cart behind her. She was dressed in black, hunched against the weather and her years, but her feet were encased in bright red boots—feisty! I watched them flash, red against yellow, as she steadily traversed the zebra-striped crosswalk. The zebra crossing reminded me of the mascot for the chronic illness I recently learned I have: Ehlers-Danlos Syndrome.
A group of zebras is called a dazzle. Scientists have debated extensively whether zebras have white stripes on black or black stripes on white. For a long time, many believed it was black-on-white because zebras' bellies are white. However, it turns out that beneath its stripey fur, a zebra's skin is black.
Since EDS is a genetic disorder that effects the body's connective tissue, most people living as "zebras" are hypermobile. Our loose ligaments, tendons, and joints move around too much. While many of us may be able to do the splits at a moment's notice, like lithe gymnasts, we are also prone to dislocations, sprains, and muscle spasms. EDS means dealing with pain every day as our muscles constantly overwork, attempting to hold our flimsy joints in place.
"Ehlers Danlos Syndrome means dealing with pain every day as our muscles constantly overwork, attempting to hold our flimsy joints in place."
Zebras struggle for years before getting EDS diagnosed
Often, zebras struggle for years before finally getting a diagnosis, dismissed by medical professionals as malingerers or hypochondriacs. My specialized EDS physical therapist told me that when doctors are new graduates and residents, they frequently look for rare, mysterious illnesses in their patients and miss the obvious. She said, "Everybody wants to be Dr. House!" Therefore, residents are repeatedly told that if they hear hoofbeats, it's probably a horse. They are taught to only look for horses. The problem is, sometimes, it actually is a zebra. Zebras make hoofbeats too.
Every zebra stripe is different
Each zebra's stripes are different from an other's. Recently, a foal was born in Kenya with spots on half of its body, rather than stripes. It's intriguing to think that a creature, already so unique and dazzling, should be unique within its own dazzle.
It's said a zebra's stripes help the dazzle create an optical illusion so predators can't tell how many there are or easily prey upon an individual zebra. I wonder if the Kenyan zebra's spots help or hinder the illusion, protecting or endangering it.
The average time for a person to receive a diagnosis of Ehlers-Danlos syndrome (EDS) is 10-12 years: for some people, it can take decades. Harvard Medical School
I once saw a group of people in wheelchairs trying to get seats in a restaurant. (Actually, they were trying to get a table—they provided their own seats!) It was difficult for them to get accommodation. The restaurant staff was frantic—where would they store their chairs? People rarely know how to interact with the disabled. Many people have trouble seeing or even acknowledging those of us who don't fit the traditional definition of "able," as though we're all hiding behind a confusing optical illusion.
Every case of EDS is different. Sometimes I wonder if or when I'll need to use a wheelchair myself. I wonder whether my own unique spots and stripes will help me hide or dazzle then. In the meantime, I suddenly decide I need a pair of bright red boots.
"Zebras struggle for years before finally getting an Ehlers-Danlos Syndrome diagnosis, dismissed by medical professionals as malingerers or hypochondriacs."
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes, just as no two people with Ehlers-Danlos syndrome are identical. We have different symptoms, different types, and different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome, reducing the time to diagnosis and improving pathways to care.
Shantha Bunyan
Shantha J. Bunyan (she/her), a Bi-POC, lived as a nomad, visiting 30+ countries over five years and working as a scuba dive master before returning to Colorado to write (because the Truth must be written) and to fight chronic illnesses (because pain must be fought).
Before traveling, she earned a BA in Neuroscience from Colorado College and worked as a surgical tech on an L&D unit. Her writing was nominated by Kelp Journal for Sundress Publications' Best of the Net Award. Some of her travel adventures and links to some of her other publications can be found at RandomPiecesOfPeace.com.
Caption:
Medical residents are repeatedly told that if they hear hoofbeats, it's probably a horse. They are taught to only look for horses. The problem is, sometimes, it actually is a zebra. Zebras make hoofbeats too. | ©Garan Julia / Adobe Stock
