With myasthenia gravis, uncertainty is the only certainty

When explaining myasthenia gravis (MG) to someone, I often describe it as a “fickle [expletive].” With MG, there seems to be no rhyme or reason for anything.

At the start of my diagnostic journey, I asked my healthcare providers what might have triggered the slow, progressive mudslide of symptoms I was experiencing. No one seemed to have an answer. Then when I was finally diagnosed, it was like a game of darts to identify which medications would work for me.

“How long before I start feeling better?” was my next question.

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No one could answer that question with certainty, either. Everyone seemed to agree that it’d take trial and error and mountains of patience.

In 2022, I began receiving intravenous immunoglobulin as part of my maintenance treatment plan to attempt to stave off a myasthenic crisis. When I asked how long it’d take to restore my quality of life, no one knew.

Some days, I can shuffle and hobble 3,000 steps and feel wonderful. Yet the same week, I’ll feel utterly exhausted, sleep 14 hours at a time, and be stuck on the couch. For someone as in tune with her body as I am, even I can’t explain why my days are so varied.

Do you see a common theme here? The only certainty with this disease is uncertainty, which is one of the hardest parts of living with MG.

It takes work

The result of all of this is grief over the loss of self, one of the few things that is pretty consistent. When I experience this emotion, I realize it’s important to acknowledge it and allow myself to move through the various stages of grief. I think it’s important not to fight it.

One of the stages of grief is acceptance. Can you guess what one of the main things that acceptance entails? If you guessed “uncertainty,” you’d be correct.

Accepting a body that is no longer under my control isn’t easy to do. It’s taken me years of hard work on my mental health to get to the point of being able to share these nuggets in hopes that they’ll help others in similar situations live their best life.

Life ain’t easy. But as my mama used to say when I was growing up, what fun would it be if it were? Here’s to embracing and accepting that uncertainty as perhaps the only certainty in life with MG.

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.