Muscular dystrophy is not embarrassing


I was looking at my blog stats and one visitor arrived after searching for “muscular dystrophy is embarrassing” and viewed almost 40 pages on the site over the course of an hour. Not sure what sort of impression my posts left on that particular visitor but I thought I’d address the idea of embarrassment and having muscular dystrophy. I don’t think it’s embarrassing to have muscular dystrophy or any disorder, for that matter.

In my experience, the times when I have felt embarrassed due to my disability are long gone. I know this because a year or so ago, I was being transfered to the aisle chair on a plane and during the lift, my pants slid down far enough to moon the flight attendants nearby. Was I embarrassed? No. I laughed and this allowed everyone around me to laugh too. It was funny.

Often we are embarrassed by things that really are funny. This is probably the easiest type of embarrassment to get over. Once you are able to laugh at yourself, you can eliminate feeling embarrassed by these incidents and the situations become fun instead. For myself, this now includes falling, pants coming off, and a variety of other incidents where I would find myself laughing if I saw someone else do it. Why can’t we all just laugh together? We can.

There is, however, a feeling of “embarrassment” that can come up when dealing with more permanent situations vs. funny incidents. For example, when I started having contractures and walking on my toes, I felt what I thought was embarrassment. Over time, however, I realized that this wasn’t embarrassment as much as it was me not feeling comfortable with my situation. That’s why I put embarrassment in quotes. I wasn’t really embarrassed, I was just feeling different and self conscious.

Self conscious is probably a better term for this type of feeling. I was aware that I was different. I was walking differently, climbing stairs differently. Now that I use a wheelchair, I get from place to place in ways different from most people. Is this something to be “embarrassed” about? Absolutely not. It’s not even something to feel self conscious about. Embracing the fact that you’re simply different is the first step in getting past these feelings. I noticed I stopped feeling self-conscious when my “different” routine became normal to me. In other words, the more I did those things that made me feel self conscious, the less abnormal they felt to me and the self consciousness went away almost completely.

Here are some things I use to remind myself not to feel self conscious when I am out and about and the feeling creeps up:

1. Most people are worrying about themselves most of the time, not me.

2. Whenever people look at me differently it’s because they’re probably seeing something new to them. As humans we tend to inspect new things with curiosity.

3. Would I rather be out and about right now or stuck at home, afraid of what people think?

4. “I’m good enough, I’m smart enough, and dog gone it, people like me.” – From SNL…this always makes me laugh when I start to worry because it makes the worry seem so stupid.

5. Who cares?

Worrying and fear get in the way of a lot of our life’s journeys. Getting over these fears, particularly the fear of embarrassment can lead to much bigger and better things. If you’re not concerned about falling on your face, or walking differently, or using a wheelchair, then you can get to your destiny much faster, with some laughter and a good story or two you pick up along the way.

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3 Responses to Muscular dystrophy is not embarrassing

  1. Katie says:

    Very well put! I’m just learning this myself!

  2. Riven says:

    Great post

  3. Tricia says:

    You are so inspiring! Glass half full, glass half full.

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