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Why I Want Widespread Recognition of Ehlers-Danlos Syndrome

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It may seem selfish, and honestly, it kind of is. You see, there aren’t many people who are fighting in my corner, or the corners of those like me. So, I had to take it upon myself. I have been handing out awareness ribbons for my illness, Ehlers-Danlos syndrome, the rare connective tissue disorder that plagues me and several of those I love. It causes pain, discomfort, multi-system complications and there is nothing we can do to stop it. Not yet, anyway.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

And so, as we approach Invisible Disabilities Awareness Week, I hope those I have given my ribbons to will wear them and tell people about them. Spread the word about my condition and other rare diseases that cause invisible disabilities, because you might tell someone who becomes intrigued, angry or even just confused about my condition and that person will tell another person about the plight of the “zebra,” and the word will spread. Right now, there is nothing I can do to halt my condition’s progression. There is nothing I can do to alleviate the pressure and the pain of so many others like myself, but I do have hope. I have hope that one day there will be. But the only way we can promote that hope, spread that hope, is to raise awareness.

It all started last week. I left a meeting with an advisor at my university. We had talked about the joint degree program I am hoping to enter. I was thinking about my future. The thing is, when I think of my future, I can picture all of the things as I would want them to be, but I can’t actually picture myself. I can imagine what I would like to do in this situation or how I would like to be pursuing my career, but I cannot conjure an actual image of myself. This is because I don’t know what I will look like. I don’t know if I will be walking freely but cautiously, or with my cane that I hesitated to buy but now is with me every time I leave my apartment, or wearing braces, or using crutches recovering from surgery. I just don’t know.

I had never thought about this, never noticed my own absence in my future until that day, when walking home from that meeting, a woman approached me. I was hardly paying attention, minding my business, waiting to be able to cross the street and she said to me, “What’s wrong with you?” My first thought was, “Oh my gosh, what did I do?” I couldn’t think of anything. I said with a slight smile, “I’m sorry?” She didn’t hesitate at all, and repeated herself, “What’s wrong with you?” but this time she gave me a hint – she eyed my cane. Of course, I was shocked. I couldn’t believe someone would just walk up to somebody and ask that, but I wanted to be informative. I explained that I have Ehlers-Danlos syndrome and the effects of it on my body. She nodded and said, “Well, you still seem happy anyway,” and she walked away.

I was left to my own thoughts of shock, anger and confusion. None of those emotions have subsided yet (and it’s been two weeks), but I also gained determination. I understand it is often a shock to see such a young and seemingly jubilant, healthy woman walk around with a cane. I have heard everything from insults to praise walking around with that thing, but what often seems to be missing is the acknowledgment of what is causing me to have the cane. I have been on a mission to spread the stripes of EDS to as many people as I can reach. I ordered some zebra print ribbon online and spent one evening cutting it and fitting it with safety pins. I even made up a little information slip explaining EDS and urging people to go online to find out more.

four people wearing ehlers-danlos syndrome awareness ribbons

I have no idea if they will wear it. I have no idea if they will read it. I have no idea what they will do, but at least I know the information is out there. At least I have tried to reduce the odds that another woman will ask me what is wrong with me. It is selfish. But it is also for the good of all zebras. All we want is recognition. We can’t have a treatment or even a cure without recognition.

Originally published: October 11, 2017
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