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How I Keep Moving Forward With Ehlers-Danlos Syndrome


I live life along a very fine line between concern and constraint. I have to think about every single move I make. If I step this way, my ankle may “react badly” and then I won’t be able to walk for the rest of the day. Or if I try to chew something like a
carrot, my jaw will ache to the point where I stop eating for several hours or
resort to soup only. That is my life with Ehlers-Danlos syndrome.

I can read my body better than I can read a book. I notice when the slightest thing is off. I can predict when the evening is going to be particularly difficult, depending on how I feel when I wake up. It is a delicate science, but it is also a very useful one. By knowing these things about how my body is functioning, I can decide when I can push the boundaries a little more. I can decide whether it would be too much for me to go up the next flight of stairs, or if I should go look for a lift somewhere. It allows me to really live.

Knowing about my illness can be quite worrisome, because as much as I can judge, evaluate, and predict, the reality is that my body can change its tune in a second and that means I always have to be on my guard. It also means that my loved ones are on their guard. My family and myself are always navigating “the road less traveled” so no
one will accidentally knock into me and I won’t be able to keep my balance, or they might accidentally step on my foot or my shoe and cause the bones in my feet to separate. It is a delicate dance of avoidance while also trying to do things that will later on have me aching to the point of immobility.

This can look weird to outsiders. I always move toward the right-hand side of a staircase, because I need the railing and my left arm is more unpredictable. I’m always walking towards the back of groups or desperately searching for a lift or escalator. This is what you have to do when you are always avoiding injury. Once, my brother stopped someone from hugging me because they hugged him first in a vice-like grip and he wouldn’t allow them to jeopardize my ribcage. This sometimes makes people look at me and my loved ones a bit funny or think of us as over-protective or overreacting.

If they were with me for any period of time, I hope they would see that everything we do is because we have to  — not because it’s fun. It isn’t paranoia or over-concern. It is finding a way to keep me moving forward and not staying stagnant.

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Thinkstock photo by Serpe Blu.


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