what the heck is myotonic dystrophy?
Today is Myotonic Dystrophy Awareness day… but wait, you don’t know what it is? Let’s fix that! Instead of some long-winded post with a bunch of facts and medical terms that no one actually understands, I’m going to tell you what it’s actually like living with a rare and chronic disease in the shortest but most informative way possible.
Imagine you are sitting in a serene spa — waterfalls, the smell of ocean air, and dim lights. You just got the best massage of your life, your nails done, and you’re sipping on a 10/10 Cookie Butter Chai Tea from Dutch Bros. You should be relaxed, minimum pain, and ready to take on the world.
But your body feels weighed down with wet sandbags. You are so tired you are convinced that you haven’t slept in a week, even though you slept for eight hours last night. And your muscles? Well, have you ever had someone take a metal baseball bat to your spine and whack you repeatedly? Imagine that kind of deep, relentless pain mixed with muscles that don’t work or relax the way they should.
That is the frustrating reality of Myotonic Dystrophy. Your body can feel like you’re running a marathon while you’re sitting perfectly still. And this disease doesn’t just affect your muscles. It can and usually does affect different parts of the body. Cardiac and respiratory problems, severe fatigue, gastrointestinal issues, sleep problems, and a dump truck load of other symptoms that nobody wants.
Add in the emotional toll of living with a chronic, progressive disease with a pixie dust sprinkle of Anxiety and Depression and…. well, welcome to Myotonic Dystrophy.
And since it’s awareness day, what do I really want people to take away from this and learn? A couple of things!
Myotonia
Myotonic comes from the Myotonia which essentially means there is difficulty relaxing a muscle after contracting it. Gripping something and your hand taking longer to let go of it, getting out of bed and feeling like your muscles didn’t get the memo, stiffness; and your jaw and other muscles feeling stuck.
It’s invisible
Myotonic Dystrophy does have some visible signs, but the real noticeable signs of Myotonic Dystrophy are invisible. You can’t see how much energy something as simple as getting dressed, going out, and eating dinner can take, or how tired I am after doing one load of laundry. This is pretty vital, and not just for those with Myotonic Dystrophy but for every person on this earth. Most of the time we can’t see what others are going through — illness or not — be kind and be patient.
Looking Healthy Doesn’t Mean My Body Is
I can have good days but still have a disease. Just because I get dressed up and go to a concert does not mean I’m cured or exaggerating. It means that I have one day with more bearable symptoms, and I push through to do/attend something I love. But don’t worry, I will pay for it for up to two weeks after!
Sleep Won’t Help Me Feel Less Tired
This might just be the worst symptom because no matter how much or how little sleep you get, you might just feel the exact same way. Some days I can do one load of laundry, and sometimes I can do three (minus the folding because I throw it all on my chair and it acts as my personal stylist for the next week).
My Disease Isn’t Who I Am
It’s really easy to let something like health problems be your identity, and for a long time after getting diagnosed, I caved into the belief that it was. I go to doctor appointments more than I do anything else; I am constantly trying to keep my head above water, and the disease usually has the final say in a lot of things. But I have come to terms with the fact that even though Myotonic Dystrophy is a huge part of who I am (because how can it not be?), it is not fully who I am. I think I can speak for everyone in the Myotonic Dystrophy community when I say, please don’t treat us differently, but treat us how I hope you would treat anyone — with love and respect. We want to be included even if we can’t always go; we want to be treated like we’re human and not a complex medical condition; and we want you to ask us questions if you are interested in something we’re going through.
It’s hard to keep this post so short, so if you’re interested in more about Myotonic Dystrophy, I invite you to visit my other (and longer) blog post, When Life Hands You Lemons, Check for a Genetic Mutation, and also stick around because today isn’t the only day when this disease should be talked about.
Awareness isn’t just: “Please know my disease exists.”
It’s
knowing the name.
recognizing the symptoms.
understanding that rare diseases can be complicated.
supporting research.
talking about it so people don’t get misdiagnosed and can get the proper medical care sooner.
