This post is dedicated to all of my peeps who don’t quite understand what Myasthenia Gravis is. If I had a dollar for every time someone asked me “What is Myasthenia Gravis?”, I’d be rich. Seriously, it’s rare and I’m accustomed to people asking me to repeat myself. I’ve been living with MG for 5 years and counting. If I could give someone the spark notes of my illness it would look something like this.
MG Affects My Voluntary Muscles
I never appreciated how much work my body did for me every day. Until one day something as simple as smiling was hard to do. Myasthenia Gravis affects ALL of my voluntary muscles and causes weakness. Think of your arms, legs, eyes, fingers, and all of the muscles you can control in your body. Imagine if you were too weak to control them and couldn’t breathe on your own.
If I could describe how it feels to live with Myasthenia Gravis weakness, I would say it feels like weights are attached to my muscles and weighing me down. Imagine doing 100 squats and trying to walk around afterward. That’s how I feel some days without doing the squats. Please be mindful that standing, walking, and other physical activities are super uncomfortable for a person such as me with MG. If I get too weak, I can stop breathing.
It’s an Invisible Illness
Meaning that you are not able to recognize it by simply looking at someone. Many individuals with invisible illnesses look “healthy” on the outside, but in reality, they are not. The majority of autoimmune diseases fall under the invisible illness umbrella. People are always taken aback when I share that I live with an autoimmune disease.
When someone discovers that I have a chronic illness they usually reply with something like “What? You don’t look sick.” If you can take anything away from this post let it be that saying such a thing is lame. You can’t look at someone and tell they’re sick. I blame society for this gross disconnect. Take Selena Gomez, Lady Gaga, and Nick Jonas. They’re all talented celebrities living with invisible disorders. You can not look at someone and tell what they’re dealing with.
Living with MG is Stressful
Myasthenia Gravis can be unpredictable. I’ve learned over the years that my mental and emotional status impacts my symptoms greatly. Some of my symptoms include droopy eyelids, slurred speech, and overall muscle weakness. Visit this post to learn about the Signs & Symptoms of MG. Can you imagine getting into an argument and then struggling to open a bag of chips because you’re so weak? It’s humbling (lol).
When my symptoms act up it’s hard to do much of anything. Trying to maintain a consistent job that doesn’t allow flexibility is almost impossible. Because I live with a chronic condition I am constantly having to maintain treatment, medications, and doctor’s visits. All of those things cost money…a lot of it. But how do you pay off medical bills if you’re too weak to work? The answer is you don’t. Some days I don’t know what’s more stressful, living with a disease or the medical debt that comes with it.
**Feel free to send me donations to assist with these stressors below**
MG Looks Different for Everyone
It’s the snowflake disease. This is what Myasthenia Gravis is also called. Not because people with MG are cold, but because this disease looks different for everyone. Everyone with this rare condition is unique just like a snowflake. You will never find two of the same snowflakes and the same can be said about those of us with MG.
My Mood Might Suck Often
Another important thing I wish people would understand is that I may be in a crappy mood or irritable most days. This is especially true when I find myself experiencing a bad flare. Flares are periods in time when MG symptoms begin to go crazy. When this happens I am on bed rest and on a soft diet (smoothies, apple sauce, easy things to chew and swallow). I wish that friends and family members could remember to be lenient with me during these crappy periods. Don’t expect chronically ill folks to be happy all the time. That’s just unrealistic.
Well, that’s all of my quick bullet points for what I wish people knew about Myasthenia Gravis. Hopefully, I’ve helped someone else explain this to their family and friends.