Surviving Myasthenia Gravis
Word to the wise, especially for those living with myasthenia gravis (MG) at a young age: Us adults are all just faking it 'til we make it. It’s true. As we grow older, we think we are going to have it all figured out when we become adults but the truth is, I’m 30 years old and I still have no idea what I am doing.
I initially approached this piece with the intent to impart some sort of sophisticated wisdom about transitioning from childhood to adulthood with MG successfully, but as I was writing this; I realized how much I am still learning even as an adult. The good thing about growing up with MG is that you will have so much practice in these life lessons that it becomes easier to be your most authentic self.
Diagnosed as a teen
I am not going to lie to you; being diagnosed with myasthenia as a teenager was no easy feat. It was frustrating, difficult, overwhelming, and outright unfair. Many call me an "old soul" and I think on some level I have always been that way, but much of that persona was a result of having to grow up rather quickly.
There was barely any awareness of MG 20 years ago and I felt I was living in what I call, a "constant state of advocacy." Sometimes it was a note from my mother written to the school excusing me from class; other times it was a text message I would hesitantly send to a friend, telling them I would no longer be able to make it to this-or-that event.
Every week you could probably find me writing an email to a professor requesting an extension on an assignment. And most days I was forced to surrender to a nap rather than the activity I actually wanted to be doing.
Myasthenia gravis will try to take everything away from you, but you don’t have to let it. Outsmart this disease and utilize these lessons from someone who has been in the trenches:
"No" is not a bad word. The people-pleaser that I am, this was a difficult lesson to learn. However, setting boundaries is like a life-preserver; it protects your energy and saves you from drowning in unproductive thoughts or worry.
Receiving help does not make you weak. MG causes physical weakness and while seeking support can be one of the toughest things to do, it is also one of the bravest things you can do. As someone who hates asking for help and would rather do things myself, this is really difficult for me. Nevertheless, I have learned to pick my battles wisely.
An unconventional life is not a bad life. Different? Yes. Bad? No. People may not always understand your choices or actions because it does not fit into their standard way of living or understanding of the world around them, but that’s not something to get encumbered by. Embrace your differences as much as possible. Give yourself grace when you feel crippled by those differences, and either utilize your differences to your advantage or learn ways to adapt to them.
Overcoming the challenges
Like I said, life with MG is no picnic. It will challenge you in more ways than you knew possible. But, be like a contestant on one of my favorite television shows, Survivor: Outwit it. Outplay it. Outlast it.
How frequently do you experience double vision (diplopia)?