Living with myasthenia gravis means living in a constant state of doubt from myself and others. Fighting an invisible illness has taken a toll on my sanity. I have both good and bad days. My health constantly fluctuates, and so does the perception of my disease’s severity.
On my worst days, it’s easy for others to notice that I am sick, and I usually end up in the hospital. On my good days, however, I could be — and often am — mistaken for someone living without any health concerns.
Whenever I use my disabled parking placard, I fear being approached by someone who doesn’t think I should park there. This is because it has happened a couple of times before. Defending the validity of my disability is incredibly stressful.
I cannot simply unbutton my shirt and show someone every scar on my body. Behind every scar, however ugly, is a difficult story that cannot be understood just by looking at it. The scars represent the battles I’ve won, but most battles are won at the cost of something. And that’s not exactly something I feel like sharing with a stranger, especially not on a regular basis.
Every time someone doesn’t believe in the severity or reality of my illness, it makes me doubt it, too. I forget that I conquered all those surgeries and endured all the endless needle pricks to get my treatments. I forget that I am worthy.
And that is something I need to work on, too. It’s inevitable that people will doubt my invisible illness, however unfair that may be. But I cannot control other people — I can only control how I react to their doubt. My body may be weak, but my mind can be strong. I need to learn not to doubt myself.
Perhaps by counseling one person who has asked me why I use disabled parking and educating them about the reality of invisible illnesses on a “good” day, I can prevent that person from approaching someone else with an invisible illness on a bad day.
Life is beautiful. Never stop fighting.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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