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Things We Want the World to Know

June 18, 2018

There have been many times in my life when people have come up to me and asked certain questions or said certain things about me, not quite understanding in full my situation.

 

"You walk funny." | "Well, you look normal." | "Can't you just exercise more?"

 

I asked the LGMD Facebook community to share their experiences as well. Here are a few questions or comments people have stated to somebody with LGMD, and a little bit of my thoughts on it. 

 

"WHAT EXACTLY IS LGMD?"

It is not just my legs affected, but my entire body.

 

Limb Girdle Muscular Dystrophy is a genetic disorder with many subtypes.  LGMD is all about the proximal muscles around the hips and shoulders. (The proximal muscles are the closest to the center of the body.) LGMD is the observed weakness and atrophy (wasting) of the muscles connected to the limbs. For more information, you can visit my page all about LGMD.

 

"YOU LOOK NORMAL."

"I thought people with MD were in wheelchairs."

"Why are you parking in a handicap spot? You look normal."

 

There are many who are in wheelchairs. However, for a lot of the LGMD community, we have what is called an invisible disability. Everyday we are progressively losing muscle, but you can't see it on a day to day basis. We may look normal, but we struggle. And it's only getting worse. Eventually, we won't look so "normal."

 

"DID YOU HURT YOUR LEG?"

"What's wrong with your leg?" | "What sort of accident did you have?" | "You walk funny."

 

I personally have gotten all these responses. I used to wear an ACL brace on my legs to help me walk. People would always ask what happened. I usually just made up stories and crap to make it sound more cool that it was. In this case, I didn't mind people asking if I hurt my leg. I'm pretty sure I do it too. When someone's hand is in a cast, or they are wearing a boot, it's common for people to ask what happened. However, telling someone they walk funny is just pure rude.

 

"ARE YOU PREGNANT?"

I haven't ever gotten this one, but others on the Facebook page had mentioned it. I for sure have felt like it though. People will think, or we may feel, that we look like we are pregnant because we waddle, as well as our stomachs are pushed forward to help us balance.

 

MUSCULAR DYSTROPHY (MD) IS NOT MULTIPLE SCLEROSIS (MS).

"I know someone with MS. They are doing great stuff for that!"

 

I am sure they are doing wonderful things for MS. However, it is not MD. I understand that people don't memorize everyone's disabilities and they may forget exactly what you have. And I understand that MS is more common or more known than MD. I don't think people are being rude when they mention MS. But it is different that MD. MS is about the nerves (I think). MD is about the muscles.

 

"I THOUGHT ONLY BOYS HAD MUSCULAR DYSTROPHY."

I think the most common or known type of Muscular Dystrophy is Duchenne's MD, which is typically only in boys. I had to correct my high school teacher on this one. She taught that only boys had MD, and I raised my hand and said, "uh nope!"

 

"CAN'T YOU JUST EXERCISE OR DO SOME PHYSICAL THERAPY?"

"You should exercise more and build more muscle, that way you will be strong again." 

 

Exercise is great. But it can only help so much. If I over do it one day, I will really feel it for the next month. Our muscles are more tender and fragile than other people's. I went to physical therapy every week for 6 years. Eventually it got hard to go while working and having a baby. I have definitely noticed a difference in my body after I stopped going. It's always good to exercise. But it won't necessarily make our muscles stronger; it will just maintain them.

 

"ISN'T THERE A CURE?"

Sadly, there is no cure. MD doesn't get better, it is a progressive disease. We can fight it, but we cannot win. People assume there is treatment that can cure us or that we can take a pill that can make us stronger. Currently, there are doctor's doing a lot of tests and trials, but no cure yet.

 

I'M NOT LAZY. I'M TIRED.

"Why are you taking the elevator up one floor? Are you that lazy?"

 

I hope none of the LGMD community has every actually heard this response, however I have definitely felt like people were thinking it. I had a class in college that was on the second floor and people in my class always looked at me funny for taking the elevator up, instead of just going up the stairs. I can't climb stairs. I'm not lazy.

 

Somedays are better than others. But most days I feel week and tired. No, I'm not lazy. Just tired. I have no energy. I wish I could help my husband carry Cali around more. I wish that I could help carry all the bags so my husband doesn't have to carry everything himself. I wish that I could go on hikes and bike rides. No, I'm not trying to be a lazy wife or mother; I'm just tired. Thankfully I have a loving husband and family that understand this.

 

EVERYDAY IS DIFFERENT.

Just because I was able to do something yesterday, doesn't mean I will be able to do it again today. Different days, different muscles strengths. We take it day by day.

 

WE ARE JUST LIKE YOU.

"I just wish people see past the [wheel] chair to the person sitting in it." - Kevin

"Too many people can't see past the wheelchair. It doesn't define us." - Jennifer

 

One of the most common things people on the LGMD Facebook page wanted the world to know is that we are just like you. Our muscular state does not affect our intelligence. Just because we have MD doesn't mean we have to write off all our goals. We can choose to achieve the same goals, but differently. Inside, we are just like you; with hopes, dreams, and desires.

 

A huge thanks to everyone on the MD Facebook page for helping me out with this post. And thanks to you for reading it! Please let me know your thoughts below.

 

 

 

 

 

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