The people who are close to me in life certainly know one thing about me: I am almost always in pain. They, of course, know it because I complain a lot. Now here is the thing, I have a genetic condition that happens to be an invisible illness.
Let me explain invisible illness first. An invisible illness is an illness, disease, or condition that shows no outward signs that something is wrong. People with invisible illnesses often hear the phrase (and we sure do hate it) “But you don’t look sick.” I often hear “I never would have known” and “then how can you do [insert activity here].”
My genetic condition is something called Ehlers-Danlos Syndrome. If you are not sure what it is, it is a simple search away. Ehlers-Danlos Syndrome and Zebra Syndrome will give similar results. I read somewhere a way to describe this syndrome to people: Imagine that we were put together by household materials. Your joints are held tightly together by rubber bands. They can move, but they only go so far. My joints are held together by soft chewing gum. They can come apart at any moment.
And that is exactly what happens.
It has been happening much more frequently lately. My pain is starting to become overwhelming. I’m missing classes because I can’t get up out of bed (actually, I can’t get up off the floor. I can’t use my bed because I can’t climb into it. That is a story for another time).
My knees feel like the joint is slipping around all over the place. My shoulders have started to sublux (subluxation: a partial dislocation) frequently. Because of this, I have been rolling my rolling backpack around. I see people stare as I go from place to place. I hear the “luggage” jokes. They don’t know that I sprained my knee two years ago just by being in the shower, a wound that has not healed. Yes, I take the elevator up one floor; I’m not entirely sure I can make it up the stairs.
I feel the stares and hear the judgmental statements.
But guess what: I know my limits.
It isn’t the staring and the judging that has me writing this though. I know what it must look like from the outside. I’m not writing this for pity. I am writing this, actually, for the exact opposite.
When people know that you get hurt easily, they tend to treat you like a porcelain doll. Like if they breathe on you wrong, you’ll break. Because of this, people who know about my genetic condition tend to tell me not to do things or that I can’t. There is nothing I cannot stand more than someone telling me I can’t do something.
Because, and I repeat: I know my limits.
I do. If I am having a rough day in terms of pain, I’m not going to volunteer to go on a walk with you, sorry friend. No, I won’t help you move into your new apartment today. If you had asked me yesterday, a good day for me, I would have gladly said yes and felt the repercussions last night.
I am fully aware of the things that are going to cause me to hurt, but that doesn’t mean I won’t do them.
I was told, when I was 7 years old (and before I was diagnosed with this condition) that I would be in a wheelchair by the age of 21. I was told to stop playing sports and to take it easy in P.E. So I did. And it sucked. So, one day, I decided that if my fate was a wheelchair no matter what, I wasn’t going to stop doing things; I needed to do them more frequently, harder, and for as long as I could.
Before I close this article, I want to address the elephant in the room and provide the disclaimer that should be obvious: my situation is not going to be the exact same as every other Ehlers-Danlos Syndrome warrior. As with every condition, no two people will struggle in the same way. As far as I am concerned, it is very possible that I have it easy compared to others with EDS.
But we’re all Zebras, we’re all struggling, and most importantly: we’re all warriors.
Taking it one day at a time and one step, no matter how painful, at a time.
