Random Thoughts…

“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.
















7 thoughts on “Random Thoughts…

  1. I’m so glad I found your blog. It is like I’m reading my thoughts and feelings. It is reassuring to know that someone else thinks and feels the same way I do. Faces the same challenges on a daily basis. I too tried to hide my condition. I just wanted to be normal like everyone else. I did get made fun of in high school. It was tough. It was hard to accept that I had to give up the sports I loved just when I was entering HS, the time in your life when that is so important to you. I still get frustrated that I can’t join my friends on their latest 5k race or go jogging with my husband but I am getting better at opening up about how I feel about that and communicating with the people around me when I’m having a “bad day” I find that helps. There is so much healing in sharing.

  2. You have no idea how wonderful it is to have found your blog! I read about it and your story in an article. It’s kinda crazy, though- I’m also 23, and was diagnosed in 7th grade at age 13 with FSHD, but it’s just some kind of fluke thing for me, no one else in my family seems to have it. It was really difficult to go through those teenage years alone, but it’s really great to know I’m not the only one out there going through these things, now- which it often feels like to me. I’m really glad you made this step to being public about your disability! I always used to want to hide my disability, too, especially as a teenager, but I think you get to a certain point where you’re just like, why does this even matter? This is a part of who I am, I can’t change that, just like we can’t change the color of our skin, so if someone has a problem with it, is that really someone I want in my life? Plus, at least on my end, my disability got to a point where I’d had enough changes in appearance or how I can do things, that it was harder to hide it than to just be myself. I think we’re always going to have rough days where we want to hide and feel sorry, but in the end, we are who we are, and that’s a beautiful thing! Anyways, thank you for your blog, and for joining the public ‘I have a disability’ club! ❤️

  3. I found your blog today. I appreciate your willingness to open up and share. It takes someone who is brave to do so. You are beautiful! I hope you keep on writing and sharing . You’ve touched my life, thank you.

  4. I’m so happy to have found your blog today. I’m almost 40 years old and have FSH MD as well. Just today a rude guy I didn’t know said I’ve never seen anyone walk that way…what’s going on there? I just ignored him and walked away and as I was walking away he said you need to get that fixed. That was the first time anyone’s talked to me that way. I just let it roll off my back, but it stung a bit. It was just so insensitive. I’m in relatively good shape I guess considering my age. I’m almost 40 and have a 7 year old daughter and am pregnant with a baby boy that I’ll be delivering when I’m 40 years old, but it still affects me even though for my age people may consider it “not that bad”. I can relate to that stuck in the middle feeling because I feel like that’s where I am as well.

    • It’s always hard to hear things like that from people. People are just unaware that disabilities like this exist and it’s really frustrating. I totally understand where you’re coming from. It can be really hard on you I’m sure. When people say things to me, I always try to make sure I tell them I have a muscle disability, and they usually feel pretty bad about what they said haha. Good luck to you though! There are many people out there that can relate to you, so you’re not alone!

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