Dazzle in Life with Ehlers Danlos

Revised: 12/19/2020 12:06 p.m.

  • Dec. 18, 2020, midnight
  • |
  • Public

“Having EDS is to share
a body and a spirit that do not harmonize
and to live in the gap in between, trying to
make this liminal space a forever home.”

Someone on one of the failbook groups I am in asked what was the best thing to have happened to you this year. Considering how much suckage has happened this year (for everyone)..... and how much my life was turned upside down due to my personal stuff, 2 major procedures, and the pandemic, one would think it would be hard to think of something.

One thing comes to mind that I wont mention here yet (since this book is public) but the second largest one was finally learning that I have Ehlers Danlos syndrome. This is a genetic condition that affects collagen production/synthesis and subsequently affects strength of joints, ligaments, skin, blood vessels. Connective tissue surrounds all of your organs, vertebrae, ect. So a LOT can go wrong. And not everyone wears EDS the same. “Flexibility” and “Hypermobile joints” is just ONE aspect of EDS, that people can see from the outside. There is so much more insideous bullshit going on on the inside. Im like a luxury car that has made in china parts that has to be kept in the garage.

Literally every single symptom I have had since childhood that I had ignored/ didn’t think was a big deal fits into the puzzle board of EDS. My brain kept going ” WHY THE HELL AM I GETTING HURT THIS EASILY????!!” This also gives me an outline of things that can possibly go wrong in the future and what to look out for. I believed that I was chasing the wrong things before. But it turns out, I was looking at the right things, but I had the wrong doctors/ eyes on my images.. And was seeing small signs of issues that COULD be more serious and have been for other folks with EDS.

As devistating as this diagnosis is (there is no cure)… I no longer feel the need to fight with doctors. I will just go to another one, and travel if I have to if I am not getting the right care. For now, I have good insurance through B. So I am doing all I can get have things figured out before that changes. I submitted a DNA sample to test for the more severe/ rare types of EDS as well as other connective tissue disorders. This is a bit scary as this could be worse than I originally thought. But only time till tell.

People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras.

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.

But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.

So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.

When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD.

Fun fact: A group of zebras is called a dazzle.


Last updated December 22, 2020

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