I don’t understand people.


My back has changed so much in the past few years. I want to know when it’s going to stop getting worse and just…end. I was at the doctors the other day (a doctor that specializes in pain medicine) and she said that my Lordosis would (probably) never go away…I wanted to just cry right then. If you don’t know what Lordosis is, for me, it’s just that I have a large arch in my back. If you’ve read my other blog posts you know how much pain this causes in my back. The thing is, the pain isn’t the only thing that makes me mad. My arch makes looking normal almost impossible.
The title of this post has nothing to do with pain, it only has to do with the way I walk. So like I’ve said before, I walk like a pregnant lady pretty much. The other day I was out with some friends and they saw some guys imitating the way I walk. They arched their backs and started walking around looking like a worse version of me. The worst part is that these guys were in their 20s or 30s! I don’t understand people. Why would you think it’s okay to make fun of the way someone walks?? Because of my arch, I make sure never to judge someone by the way they walk because you never know the reason for it and the hardships they’ve been through because of it. I guess people just don’t understand. They don’t understand that there are people out there who have problems which cause them to look different than the “normal” person. Why does anyone think it’s okay to make fun of someone who doesn’t look “normal”? I honestly felt like I was being bullied and it made me feel like shit the rest of the night. My friends tried to run after them but couldn’t catch up…I wish I could have talked to them though, I would have had A LOT to say. This isn’t the first time I’ve felt like people were making fun of me either. It’s just so hard to see because it just makes me so weak. I try to be strong, but when you see something like that in front of your face, you can help but feel defeated.
The point is, you never know what someone is going through so don’t judge them. I know we’ve all heard this before but I don’t think it’s gotten through everyone’s head yet. There are still people out there who think it’s okay to make fun of someone even though you probably just ruined their day and made them feel even more hurt. Be careful what you do, you never know what affect your actions can have on someone!


3 thoughts on “I don’t understand people.

  1. Hi!
    First of all, thank you for your blog, I just found it and read it the whole way through, love the way you write 🙂 I’m pretty much the same age as you and also have FSHD and some of your thought feel exactly like the ones I’m going through sometimes! I just wanted to share something that has really helped me. I also have a severe lordosis, which is probably the biggest problem for me atm. Have you ever tried using a back brace for it? I have had one for years, getting a new one roughly once a year with small modifications every time to make it suitable for the moment. Truth be told, I couldn’t live without it. Without the brace my lordisis is so bad, that it’s hard for me to walk. But with it, life is ten times easier. I do have back pain at times, but it pretty much keeps them in check. If I would have to live without it, I think my back would kill me. Even with my back doesn’t look completely normal, but a lot straighter never the less. At first a new brace always feels a bit weird and uncomfortable, but after a few week you get used to it. My version has a softer “brace” that goes around my waist, and a attachable back “plate” made out of hard plastic that’s shaped for my back, but of course there must be a hundred different options for it.
    Alright, just wanted to share this one bit that has made my life a lot easier, hope it could help you out as well 🙂 keep on writing!

    • Hey Evelyn, sorry I am just responding now but it’s great to hear from another girl with FSHD that’s a similar age! I have tried many back braces and the problem I’ve been having is that the back brace gives me more pain than my back. I have a similar brace where it’s soft and wraps around and then there’s a plastic part in the back that’s molded to my back. Every time I wear it, it starts to dig into my bones on my back and is extremely painful. I really need to find a brace that is shorter on my back but I’m not sure if it will help as much. It’s a big dilemma I’ve been trying to figure out. Also the doctor has told me that if I rely too much on the brace I might never get stronger, but I don’t think I’ll get stronger without the brace either. Thank you for the advice! If you know of any different braces that you think might work let me know!

  2. Hi there I can totally relate, my symptoms started around 15 and today I am 46 – everything you mention is so true – xxx best of luck

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