“Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are among the most affected.” -MDA.org
When I was 13, I found out I had FSHD. To be honest, I don’t remember much about how I reacted when I found out. I had just found out that I didn’t make the field hockey team in 7th grade. I was upset, especially since I realized that I wasn’t running as fast as I used to. My mom told me, in some form or shape, that I had FSHD. She has it too, as well as her brother and father.
The main problem with FSHD is the deterioration of muscle. This causes many visible symptoms, like the inability to run, difficulty with walking up stairs or walking in general, pain in many joints and muscles, the inability to whistle, sip through a straw normally, bend over at the waist. I am unable to hop, skip, bike, lift my arms all the way, I mean the list just goes on.
It’s almost as if I knew it was coming and I just accepted it. I think I didn’t overreact because I could still do almost everything that I used to be able to do. As each year went on, my disability slowly got worse. My muscles were deteriorating and I was hiding it from all of my friends. I was trying not to let this disease affect my everyday life, and it didn’t really, until later in high school.
I’m glad I was able to hide it up until college, because high school and earlier are the prime times for bullying. I’m 23 and out of college and I’ve had people make fun of me very recently. I think if this happened in high school though, I wouldn’t be taking it so well. I find it crazy that people are making fun of me at my age. This has happened to me twice and I know that doesn’t seem like a lot, but I never thought it would happen at all; so it was all very surprising to me.
Before you go and make fun of someone for the way they walk or the shape of their body or the way they talk; think about the challenges they have faced because of it. After working hard to combat your disease, would you want people to make fun of you? It tears down your confidence and it is not ok. Think about that the next time you see a situation like this.