I’m More Than the Labels That Come With Myasthenia Gravis

Acknowledging and transcending the identity shift that comes with illness

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by Shawna Barnes |

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The caregiver. The parent. The big sister. The only child. The husband/wife/spouse. The honors student. The executive. The jock. The soldier.

The patient. The flaky friend. The chronically ill.

These are all titles and roles that society establishes for us, or we establish ourselves. We might be proud to be the ones in the first series; no one wants to be part of the second. The reality is that we can be all of them or none of them and still just be.

What do I mean?

Through the past 11 years since my medical retirement from the Army, everything I thought I’d be or become was taken away because of my health — or at least, everything I thought was important: the ability to serve my country as a medic and eventually a doctor (I’d wanted to make military service my long-term career), my ability to work the way I used to, my ability to parent the way I once did.

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Why Is MG Such a Large Part of My Identity?

Everything changed. Except me. The real me. The me that I am when you take away the roles we play in this thing called life.

Acknowledging the identity shift between those roles and me was step one. My physical body has provided extensive limitations on what I can do, but it’s also opened doors to some pretty amazing things I wouldn’t have been able to do had I not gotten sick. My emotional and mental abilities have also changed, but not to the same extent.

One of the shifts I’ve struggled with was moving from being a present parent to an absent parent. When I was medically retired from the Army, my then 9-year-old son couldn’t live with me because I had a hard enough time taking care of myself. And that was incredibly difficult for me. Part of being a parent is always putting the needs of your child first.

Throughout my son’s high school years, I missed many events because of myasthenia gravis. He learned at a young age how to help someone having seizures and to stay calm during medical emergencies. He felt the frustration of a world not made to accommodate wheelchairs. These are lessons I wished he wouldn’t have had to learn, but am thankful he did.

Another shift I struggle with has been the transfer from leader and soldier to that of flaky friend and chronically ill. Each of those four roles carry with them their own imagery, and they are to some degree opposite each other. But why do they have to be opposites? Multiple things can be true at the same time, can they not?

Part of acknowledging them and my shift in mindset is also acknowledging that multiple things can be true at the same time. I can be the leader and the flaky, chronically ill friend. I can be present as a parent and instill in my child important life lessons without having to be physically present. I can be a good and supportive spouse to my husband without overextending myself to the point that I’m stuck in bed for days.

The stories we tell and the roles or titles we give ourselves affect our daily lives more than what we say or write on a piece of paper. They influence our actions based on how we see ourselves.

I have myasthenia gravis, but myasthenia gravis doesn’t have me. I’m more than what meets the eye. And so are you.

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.




I liked this article as to how it pertains to me. With my immune suppressant treatment, I am perceived as functional. .
However, I'm the one who heads to bed early, has to focus on my walking as my gate will sometimes be like a slinky, and other times not so much. Noone gets my strength is not who I was prior to back surgery where just 6 weeks later MG reared its head in my life. My family sometimes think I am not trying hard enough or do not see the struggle I endure. Now I have sister on the way to being positive with ALS. Life sucks somedays.

Shawna Barnes avatar

Shawna Barnes

Thank you for sharing Frank. I have a similar lived experience with some of my family as well. Several family members just don't seem to understand, or want to understand. It is hard, and life definitely sucks some days. But I'm glad you're here with us at MG News. Wishing you better days!


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