Guest Voice: Taking back control of my life from myasthenia gravis

Sixteen years ago, when I was diagnosed with myasthenia gravis (MG) at the age of 12, I was very active. I played sports, including volleyball, until I had to quit because double vision made it impossible.

I didn’t like giving up sports, but since I was a teenager and my ocular MG responded well to medication, I didn’t dwell on it. I could do other things and still have fun.

I didn’t have much access to information about MG like people do now, which I think was a choice my parents made. I didn’t even know about generalized MG (gMG) and other types. Nor was I aware of all the ways the disease can affect people, much less the possibility of experiencing crises or severe respiratory complications.

However, as I grew into adulthood, I began to understand everything that comes with this diagnosis. I met people with many different manifestations, learned about gMG, and kept educating myself. But I knew that every new thing I learned could one day become my own reality. That knowledge brought fear.

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The person in the mirror

For 11 years after my diagnosis, medication managed to control my symptoms very well. However, over the past five years, my condition has worsened, now affecting my face. This includes other facial muscles, which causes difficulty swallowing and smiling. I began feeling tired more quickly. I couldn’t drive or exercise much. Working left me exhausted, even if I did it from home. Worst of all, I stopped responding to medication.

I was in a constant state of symptom exacerbation. My eyelids persistently drooped, and I couldn’t see well. Doctors prescribed additional medications and increased my dosages, which caused significant weight gain. My smile and my face were no longer the same. I began to miss the person I used to be. I felt frustrated for not being able to do the things I once could, and I compared myself to others.

At this point in their lives, many adults become parents and start families. It’s deeply frustrating to know that, in one way or another, MG may prevent me from having children.

I began to not recognize the person in the mirror. I started losing myself — and losing control of my life. It’s a type of grief that people rarely talk about.

I use the expression “losing control” because I feel that MG takes away a large part of a person’s independence. It steals the freedom to decide how and when to do things, because with MG, I can only do things when my body allows it.

My life now revolves around medical appointments, tests, opinions, treatments, being tired all the time, depending on a healthcare system with very high barriers, unanswered questions, and constant uncertainty. I don’t know whether I’ll get better or worse. I depend on others and feel like a burden. I suspect that no one will ever truly understand what I’m dealing with, which includes anxiety and having to adjust all of my life plans. And I have to do this while questioning and resenting my body for one day deciding to attack itself.

So I ask myself: How is it possible to move from that state to a place not only of acceptance, but also of taking action with the tools I have?

Becoming who I am now

In my case, psychological support has been essential. Interestingly, my psychologist was also diagnosed with an autoimmune disease, so I feel a sense of closeness and understanding from her. I’ve come to understand that it’s normal to miss the person I once was. That life is giving me a chance every day to reinvent myself and do things at my own pace.

There are factors that don’t depend on me and that I can’t change. But I can do a lot with the little I have. I can choose to believe and not give up on finding something that works for me — whether it’s a single treatment or a combination of medications that fits my body and helps stabilize me. I know there are people with my diagnosis who manage to live relatively normal lives.

This entire process has been difficult, and I’ve had many relapses, tears, and unanswered questions. It’s like being on a roller coaster I must learn to ride — I know it’s normal to feel bad and to ask “Why me?” But I must always remember, recognize, and accept that I have a diagnosis, but it doesn’t define me. I am not my disease. I simply have it. I don’t need to be who I was before, because I have the opportunity to become someone new now.

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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.