People always tell me…

People always tell me “don’t let what people say get to you” but it’s so hard to do that when you’re having a perfectly good day and then out of nowhere the cashier at Target says “Oh what are you having?”… in, ARE YOU HAVING A BOY OR A GIRL. I know I’ve talked about this before, but the looks and the comments are really taking a toll on me. It just comes out of nowhere. I’m happy one minute and the next minute I’m trying to fight back tears. I left the Target, got into my car and started balling. It’s just hard to hold it in, especially when you try so hard to look normal, but you know that everyone is either thinking your pregnant or wondering what’s wrong with you.

People always tell me, you’re so strong and brave and blah blah blah. But how am I brave? How am I strong? I break down and cry every time something happens bad to me. Actually this is funny, I just went on Facebook and saw that someone posted this quote “You’ve been given this life because you are strong enough to handle it.” I guess I’m handling it, but am I handling it in the right way? There are so many movements nowadays talking about how you should love your body, whether you’re heavy, skinny, disabled, black, white, etc. But it’s SO hard for me to love my body. I love parts of my body, but every time I look in the mirror, I think “ugh this shirt makes me look pregnant” or “damn you can really see my arch in this shirt.” How do I just accept it?

People always tell me, “it must be easy for you to find clothes that fit because you’re so skinny.” HA try being me and shopping. I have to make sure the material doesn’t cling to my stomach so that I don’t look pregnant, I need to make sure the arm holes don’t hang too low so that you can’t see my back arch, I can’t wear things that are too tight because then you can REALLY see my arch. And up until a month ago, I had to make sure the back of the shirt covered my shoulder blades because they stuck out so far. My friends tell me, “who cares! You look great!” Thanks friends, but you don’t know how uncomfortable I feel all night when I don’t wear clothes that look good on me.

People always tell me these things and I’m so grateful to have people who are always making me feel good about myself. I would never take it for granted, but it’s hard to believe you.


3 thoughts on “People always tell me…

  1. It’s so recognizable to read your blog!! Always being strong for friends and people and when you are at home, brake down and cry :(. Many people are saying “don’t mind, it’s okay, who cares,…” but in our mind we do care. I want to care less about what people are saying or thinking but it is so hard and difficult. The fight we have to do to make the disease invisible for the outside. I’m struggling with it because people don’t see it. Only when I have to do things that I can not do any more.
    I really understand the way you feel. I hope you are doing fine and be strong! Take care!
    1 question…the lower scarfs, is that also of the surgery from shoulder blades? Here in Belgium (Europe), they didn’t want to do that surgery because the experiences of it are so low. So they don’t want to make the risk of doing it. Hope you have good luck with everything and have good people around you 😉

    • I’m glad you were able to relate to my blog! It seems like everyone with FSHD experiences most of the same things. Yes the scars are the bottom are from the surgery. They had to take bone graph from my hips and put it in my shoulder area. Those scars were the most painful actually haha

      • Oh yes, I recognize a lot in your blog! My blog is not translated unfortunately. It is written in Dutch. Take care!

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