The Unpredictable Journey of Living with Myasthenia Gravis

Rebekah Dorr avatar

by Rebekah Dorr |

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immunotherapy and MG case

Myasthenia gravis (MG) is nothing short of fickle. We are unwelcome companions, thrust into its foibles and constrained by its unpredictable nature. 

Subsequently, MG has made my life an uncertain seesaw. In the blink of an eye, I have danced near death, and in the next, I’m seemingly resting in quiet joy. But more often than not, MG leaves me to muddle through the day wondering if the shower I planned is really the best idea or if I will have the energy to finish cooking after I start. I now calculate nearly every move I make, or should make, and prioritize even the simplest of tasks. 

In the first year of my diagnosis, I stubbornly resisted the changes I knew I had to make to adapt and to learn a new way of living, without the security of plans and a linear path. I liked having a straightforward trajectory for my life. I could enjoy spontaneity with friends, but in the more substantial dealings of my present and future, I was a planner. MG turned that upside down. 

I recoiled against this new disease I could hardly pronounce, this disease that now dominated my entire world.

MG dictated to me whether I could enjoy time out, and for how long and under what conditions. Was it too hot? Can’t go. Would someone be able to drive me if I got weak or had vision changes? Was it too far from appropriate medical care? Would I get too weak in the middle of getting ready and have to cancel yet again, or could I push back this time and win? On and on went the endlessly rotating list of considerations for this unpredictable, loathsome disease. It shadowed my every move and I found myself hating the death of my ability to plan anything. I loathed struggling to mitigate the losses. 

It took me several years to reconcile this new way of life, one that said goodbye to a dream career but birthed a new, wondrously unexpected one. A life that called me to offer myself grace when I couldn’t do what I planned, and to allow myself the rest I so desperately needed without the guilt (well, without as much). A life that had to say goodbye to friends who didn’t understand that my restrictions and canceled plans weren’t a reflection of my love for them. A life that slowly taught me how to let go of the need to always plan; to embrace the marvelous joy of whimsy and impulse. 

I won’t do myself or anyone else who has MG the disservice of making this life seem easy or implying that my acceptance is not compounded by the ebb and flow of grief, anger, sadness, and so much more. After all, we are marvelously complex, as are our unique experiences with our health. But MG gave me the hard-earned gift of learning to let go of what I thought my life should be to embrace new ways of thriving as best as I know how, even if in the chaos of the unpredictable.


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. in the chaos of the unpredictable. 


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2021 Myasthenia Gravis Survey Results

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Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.