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What a Victory Means for Someone With Ehlers-Danlos Syndrome


I have Ehlers-Danlos syndrome, and this means it is extremely difficult for me to do even the simplest of tasks. I live with my mother due to my medical problems, and it is hard for me to do chores around the house. Washing dishes causes me pain, vacuuming causes me pain, doing laundry causes me pain — as you can guess at this point, everything causes me pain. I also get wiped out easily, so my energy reserves are almost always on low to empty.

Not being able to do these simple household chores makes me feel worthless, like I am some burden to those around me, or at the very least that I don’t contribute anything at all to my family. On rare occasions I do have enough energy to do things, and my overall pain is relatively low or controlled. I take full advantage of these times because I never know when I will feel well enough to do these things again. It could be days, it could be weeks, or it could be months.

 

The other day I was able to do what I consider a nearly impossible feat — I was able to mow the lawn. On this occasion I had to have help from my mother, so what would have been tantamount to earning the Olympic gold medal was more like earning the silver or even bronze. My point is that completing this ordinary task that most people might take for granted was a huge deal for me. Completing tasks like this is considered a big victory for me. I even count things such as opening a jar of pickles as victories. This may sound ridiculous to some, but unless you’ve lived with the pain and fatigue of Ehlers-Danlos syndrome, you have no idea what a big deal this is.

I try not to be upset when I can’t do chores or open jars. I try to let these moments go. Instead I choose to focus on the times I can do something and take them as big successes. I try not to compare what I can do with what other people can do. So what if mowing the lawn is not a big deal for someone else? For me, mowing the lawn feels like earning an Olympic medal, and this is the feeling I choose to focus on.

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Thinkstock image by Muenz


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