It Was The Worst Of Times | #BehindTheBlogger

It Was The Worst Of Times… not knowing what was wrong with me. 

Health issues suck. No matter how you look at it, they are awful. Whether you are born with something or it develops over time, it is awful. At sixteen years old, I was diagnosed with having muscular dystrophy – but as luck has it, the form I had was an undiagnosed/unknown form. However, I was born with this, and it is something I have dealt with since, well, I could walk. It was the worst of times not knowing what was wrong with me and what I had. Do not get me wrong, it has still a horrible time – in fact, things just keep getting worse from me.

It was the worst of times trying to explain to people what was going on with me when I did not even know. My “excuse” was always that I had a muscle issue – which was true, though I did not have a name for it. Everyone (aside from my Mom and a few other family members) always thought I was making it up that I had an issue because I did not want to do certain things. I have had teachers, gym teachers, principals and a few people who I thought were friends publically embarrass me and say rude and cruel things to me about the muscle problem. I have had gym teachers specifically call me out and make fun of me in front of other students. It was ridiculous and well, it was the worst of times. Of course, those teachers were spoken to, but it still did not help – everyone knew at that point, so I was further made fun of by the students. I loathed going to school because I knew I was going to have to do things every day that showed that I had weak muscles. Going up the stairs in my school was an assache – I was in pain, frustrated, embarrassed – however, I did not want to use the elevators. Everyone in school knew that the elevators were for those that had broken limbs or those that were handicapped in one way or another. In addition, it was a pride thing – by using them, it meant that I gave up and I was not ready to do that yet.

Let me get a couple things straight, to look at me, you would not know that anything was wrong. I struggle with going upstairs, walking long distances (who doesn’t complain about that now a days?!), running (lets just say it does not happen – though I can walk fast), getting into bigger vehicles and taking large steps up onto a sidewalk. There is constant muscle tightness, aches, pains that I deal with daily, and nothing really helps. I have tried all sorts of rubs, creams, patches, gels, pills – anything “pain relieving” I have tried. Nothing works. There is no cure for muscular dystrophy and for me, there is really no remedy. For personal reasons, I do not like taking pain pills, unless they are absolutely needed. The past few weeks have been horrendous for me, I am in more pain that I have ever been my entire life. It would be nice for some relief, but I doubt it will ever happen.

It was the worst of times not knowing what was wrong, having people make fun of me and being in pain… but, it’s still the worst of times having to currently deal with muscular dystrophy. So, why am I telling you this? Well, for many years, I have wanted to hide the fact that I have muscular dystrophy and pretend that it did not exist, but I have come to realize that by doing that, it is not helping me or anyone else. Moral of the post – do not make fun of people for something that they cannot help or “fix”. It is cruel and all you do is make them feel worse than they already did. Eventually, I plan on writing more about muscular dystrophy, but that will not be for a while.

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7 thoughts on “It Was The Worst Of Times | #BehindTheBlogger

  1. Your post is personally touching because my daughter has a “mild’ form of Cerebral Palsy which I feel is wrong to call anything that causes you daily pain that is unmanageable MILD. She was considered “mild” because her brain was not affected, and she could walk, although until after 5 ankle surgeries, a bone fusion, and BRAIN she walked like a ballerina! People would say the stupidest things like WHY DO YOU WALK LIKE THAT? As if by choice. I could go on and on about the ignorance of others but then again its not their fault I suppose. Thanks for sharing your story!

    • Ashley

      Wait… She walked like a “ballerina”, like on her tippy toes? I would agree though, if you’re in constant pain that can’t be managed by much, it’s not mild, it’s more so chronic. Poor thing, I couldn’t imagine having all those surgeries. :/

      I’m actually updating my post. It’s short and I wanted to add more information, but internet issues and adopting a new kitten stopped me from getting work done. Will have more to my post a little later.

  2. I can’t imagine being in constant pain.
    Your advice is very relevant in this time when so much bullying is going on. None of us know what is really going on with alot of people. We should all have compassion and understanding.

    Thank you for sharing

  3. Thank you for sharing your story. I think it’s important for people to speak out it may give others who are scared to go out and live their life some confidence. It’s difficult and sad how some people can be so mean and say things that are hurtful, some of them don’t even realise it.

  4. Your opening line.. Health issues suck. No matter how you look at it, they are awful. .. had me. So true. I suffered for years and got so tired of being told everything was within normal range on all my tests.

    Finally I know what has been wrong with me for decades..and now it is almost too late. Thanks for sharing your story with us.

  5. Pam R

    Health issues suck and even more so when you are young. People in general expect the elderly to have health issues and don’t realize or understand that younger people can also be affected by chronic health issues. It just proves that we have to stop judging others and just accept that not everyone walks the way we do or is able to participate in activities that we take for granted. Many of us speak without thinking. I have been frequently told I have ‘lots of color’ in my cheeks (caused by my lupus rash) and how lucky I am. Right now I am lucky – I am well aware of the complications I may have in the future related to lupus, however, I don’t think having rosy cheeks as the result of a chronic autoimmune disorder is particularly lucky….

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