5 Things I wish people knew about living with a disability

Hello all!  Today is a gross day where I live.  I went to the local Farmer’s Market and on our way out, my mom and I got caught in a massive downpour.  We took cover under a tree, but it wasn’t too much better.  I did get some maple cotton candy which is amazing.  Anyway, today I wanted to talk about what I wish people knew about living with a disability.  This is actually part of why I wanted to start this blog, so people could know what it’s like to live every day with a disability.  I just want to give my audience a different perspective then what they might see on TV or read about.  So here are five things I wish people knew about living with a disability.


  1. It’s for life, it doesn’t go away after a period of time.   I have been asked by adults who work for healthcare companies and even by some medical professionals when they think “I will get better”.   That’s the thing, I won’t be cured, with the medication I am on, my muscles have improved, but they will never function the way they are supposed to.  When people have a disability, they don’t go away; they may start later in life, but they are permanent.
  2. Not all muscle disorders are the same.  There are people with CMS who don’t appear the same as I do.  I have seen a little girl who could be my twin and I have seen a woman who does not look like she has CMS at all.  It’s the same as every other disability;  just because someone is in a wheelchair, doesn’t mean they have the same disorder.
  3. Just because I have a disability, doesn’t mean that I am sad; I have a great sense of humor!  A lot of people expect me to be sad and be negative because I live with a disability that limits my life.  However, I don’t see it that way.  I mean, I may feel that way when I am having a down moment (or day), but I try not to focus on the negative because that’s not going to get me anywhere in life.  When you have constant doctors appointments and physical difficulties, you have to have humor or else your life will be miserable.
  4. My disability does not define who I am.  The people who know me well, know that I am much more than my disability, but when I meet someone new, like for a job interview or a new professor, I fear that all they see is my disability.  When I look in the mirror, I don’t see a disabled girl, I just see me.  It took me a long time to come to that, but I did eventually.  I want people to know that I do not dwell on the fact that I have a disorder.
  5. Not everything I do is a struggle.  Some people may think that my life is full of struggles and difficulties.  I do come across some, but for the most part, I go through my day just like you, with a few differences of course.


Thank you for reading!  If you have questions, you know what to do!  Stay gorgeous lovelies!

4 thoughts on “5 Things I wish people knew about living with a disability

Add yours

  1. Rosie, I saw the your article in the Seacoast Sunday just now. It is terrific. Then I read your blog entries! Your entries are informative, strong, and show your strong personality and talent. Keep it up. Love it.


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