Looking After the Mind and the Body
Nothing has ever made me feel more alone in this world than lying awake in my hospital bed at night.
Myasthenia gravis patients are not allowed sleeping tablets because they could be fatal. So, I will often lie in my hospital bed at night for hours. When that happens, I realize how much I differ from my peers. And it hurts, even though I try not to acknowledge it.
Most people, including patients, often underestimate the psychological effects of chronic illness. We are so busy trying to figure out which medication is causing which side effect, or trying to avoid hospitalization altogether, that we forget to look after our mental health.
I often postpone it as long as possible because I see it as a reality check that results in a complete comedown. But I can’t just brush it off. I have to face it. I have to deal with it head-on, and that is incredibly scary. No one likes facing their demons, much less fighting them.
As a chronically ill 20-something, alienation isn’t a foreign concept. People will never fully understand what I’m going through. They can try, but they will never fully comprehend it. Oh, how I love the people who try, though! They make my bad days bearable.
I think the thing I hate most about being ill is that it makes me fragile even though I feel emotionally stronger because of it. In a physical sense, my muscles are slowly fading, but I can deal with that. Emotionally, this disease has taught me countless life lessons that have forever altered my perception.
Life remains unpredictable. We cannot control everything, and eventually, something is going to stress you out. MG symptoms tend to flare up at any sign of stress. Physical stress is not something you want when you already suffer from emotional stress. The opposite also is true.
I don’t know what I would do without my haven, the one person who gets it and lets me be sick. Who holds me and comforts me. The person allowed behind the glass bubble I have created to keep people out. At the end of the day, that’s why I keep fighting, even when I know I will not be cured. Never stop fighting — life remains beautiful.
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