10 Things You Need to Know About Muscular Dystrophy
All my life, people have loved to ask me why I’m in a wheelchair. And all my life, people have been confused when I’ve told them I have Muscular Dystrophy.
I didn’t realize that so few people knew about my disease. I mean we have our own telethon, c’mon.
Some people heard the name before but were unsure of the details, others had no idea, and a lot of people just assumed I have MS. Even after I explained that I have Muscular Dystrophy. The two seem interchangeable to a lot of people? I don’t really know why…
So anyway, I figured it was time I talk a little bit about my experience with Muscular Dystrophy and explain the disease a little bit as well as some of its biggest misconceptions!
1. Muscular Dystrophy is a big umbrella
A lot of people think that MD is the only diagnosis and that it doesn’t get any more specific than that. In reality, there are a bunch of different types and subtypes. I think people usually picture Duchenne’s because it’s a common type and gets a fair bit of media.
I have Congenital Muscular Dystrophy, so it was present at birth. Technically, I could get a more specific diagnosis if I wanted to because there are something like 30 different kinds of CMD. It varies a lot person to person and definitely differs across types, but the general symptoms include the weakening of muscles.
2. It’s a progressive muscle wasting disease
Yep, it’s progressive. Over the years, it gets worse and I get weaker. I used to be able to almost stand if I were leaning against a bed, raise my arms and legs, and had enough balance to sit on the floor or in a regular chair. I can’t do any of that anymore. I also have to keep an eye on my heart and lungs from time to time and make sure they’re still doing their job okay.
3. I’m not unhealthy, sick, or suffering
I’m not sickly, which a lot of people (including doctors and social workers) seem surprised by. I think the word ‘disease’ throws everyone off at first. People always expect me to have a mile long list of medications, and (luckily) I’m not on any.
Obviously, that’s not the case for everyone, but I think it’s important that people understand that disabled doesn’t necessarily equal unhealthy.
4. Exercise isn’t a magic fix
I can’t tell you how many people have suggested that I just need to exercise more often. All the time in school.
“You should lift weights”
“What about if you just like, exercised your legs a ton?”
No, Ashley. I’m not in a wheelchair because I missed leg day.
5. Neither is physical therapy
I had PT when I was a kid but didn’t keep up with it. In my experience, it was uncomfortable, awkward, and sometimes painful for little to no gain. It can help maintain flexibility and theoretically slow down things like muscle contractions, but it was never worth it for me. At the end of the day, I still have Muscular Dystrophy and it’s still going to progress.
6. I’m not childlike
“She’s going to be a child forever” is an actual thing someone said about me. Someone in my family, no less. I graduated from college with honors, and I don’t need you to baby me. I’m not a child, I’m a grown woman. Regardless of my education or learning capabilities.
Just respect people. Don’t be a jerk and try to justify treating people differently just because you think you’re smarter. It’s gross, and the whole concept behind IQ’s/IQ testing is ableist.
7. It’s a lot more than just weak legs
Muscular Dystrophy affects my whole body, including my heart, and not just my legs like some people think. From a young age, I had a curvature in my spine, so I had to have Spinal Fusion surgery to correct it. I have muscle contractions, so I can’t straighten out my arms and legs, turn my wrists, or open my jaw very wide. I have to be very careful to not get pressure sores.
My body is wonky and gets dehydrated alarmingly fast. You can ask anyone and they’ll tell you that I’m literally always tired. I have terrible circulation so I’m always cold. My bad circulation also causes my legs and feet to swell, which can be pretty uncomfortable sometimes.
8. It can be painful
This answer will change with every person you speak to, but in my experience, it can be painful. Well, a few symptoms can be. I get muscle cramps sometimes that make me want to chop my leg off, but that’s not super common. If my feet swell too much, that can get bad. Having a curve in your spine isn’t the best feeling.
My pain levels rarely get too high, but my brother deals with a lot more pain than I do.
9. It’s not as limiting as you might think
Most days, I just feel limited by other people and a lack of accessibility. After living with my disability for this long, I know what I’m doing and how to get around.
People hear the name and think it’s scary and horrific, but I can live a normal life as long as I’m given the chance to and the access I need. People with my disease live happy, successful lives every day!
10. Having Muscular Dystrophy doesn’t necessarily equal an early death
Truthfully, I don’t know what my lifespan is because I’ve never asked or been told. I’m not that worried about it. But the point is, not everyone with Muscular Dystrophy dies by the time they’re 30, which a lot of people assume is the case. It’s just another example of how varied it is by person and diagnosis.
These assumptions can be harmful and regardless, I don’t think anyone should go around asking disabled people how long they’ll live in the first place. It’s kinda creepy, right? Besides, the president could send us all into nuclear winter any day now, anyway.