This year, I’m pushing boundaries in how I live with MG
It's time for me to break up with my disease
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Some days I wake up feeling surprisingly good. The pain is quiet, my body feels energized, and for a moment, it feels like myasthenia gravis (MG) is taking a break. You’d think I’d simply enjoy those moments, live them fully, and be grateful. But I never do. Instead, they frighten me. Why?
I often describe MG as a bitter friend, a toxic relationship to which I somehow became attached. It’s not going anywhere, and over the years, it has shaped so much of who I am. Some days it defines my personality. Other days, it’s my worst enemy. So when I wake up and it feels distant, when its presence fades for a while, it’s unsettling rather than freeing.
When I feel “good,” I start my day enthusiastically. I dance, do yoga, prepare a nice breakfast, and try to live like someone whose body is free. But most of the time, those days end in tears. Firstly, that’s because I suddenly become afraid. I start warning myself: Go slowly, don’t push too hard, don’t forget what happens when you exaggerate, and remember the flare-ups. Then I cry for another reason: I grieve the life I may never have, a life where I am truly healthy. And finally, I cry because I realize something painful: I don’t even know how to be healthy.
What do you mean you can walk all day without collapsing the next day? What do you mean you can run without worrying about breathing? Even as a child, I never experienced that. I remember avoiding running games. I never joined racing, chasing, or playful running because, after just a few steps, I’d lose my breath and feel like I was suffocating.
I still remember the frustration of not being able to catch my cousin like the other kids did. It wasn’t because he was a boy or stronger; it was because my body failed me. Instead of joyful memories, I was confused and angered by my body. Today, I can finally name and accept my reality: I will never catch him, and that is OK — but it still hurts.
Over time, it became like a program installed in my brain: Reduce effort, reduce movement, reduce risk. But in reality, I am not just reducing physical strain. I am reducing myself.
My resolution
Recently, while discussing love and relationships with a friend, I shared something that surprised even me. I said I actually appreciate breakups. I love the intensity, the depth of sadness, the emotions, the humanity of them. And then something clicked in my head: If I love feeling alive, if I love taking risks and experiencing powerful emotions, then why am I allowing MG to contain me? Why am I living cautiously, always in fear?
So here is my promise to myself: MG, watch out. This year, I am pushing boundaries. I will try new things, chase joy, and stop assuming I will fail before even trying. I won’t neglect my body or ignore medical care. I will stay attentive and responsible. But I will stop living in constant anticipation of pain. If a flare-up occurs, I will deal with it, just as we do with breakups when they happen. Sometimes love is beautiful. Sometimes it hurts deeply. Yet we still love.
Life deserves to be lived fully, with or without MG. With or without perfect health. With or without guarantees. We can’t always choose our destiny, but we can choose how bravely, deeply, and joyfully we live it.
Note: Myasthenia Gravis 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 other 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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