Patient Blogs | Myasthenia Gravis
How a Chronic Condition Like Myasthenia Gravis Affects My Identity
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Chronic illness is a thief. It sneaks into your body unannounced. It confuses your immune system. Robbing you of your imagined future and stealing your identity. I was a victim until recently. 

One day I woke up and my body didn’t operate the same. My eyelids would become heavy and droop. My words would slur, and I’d even struggle to smile. Walking also felt impossible. Simple tasks such as feeding myself became difficult. Illness stole my basic voluntary muscle function like a thief in the night. When I was diagnosed with myasthenia gravis (MG), my life changed, as did how I viewed myself. 

The things I once loved became less enjoyable. Some activities that I did regularly weren’t accessible anymore. My way of living that I was accustomed to changed in the blink of an eye. I didn’t know who I was anymore without the little supporting elements that helped shape my personality. I started looking, acting, and moving differently. I found myself having to relearn my body and its new limitations. It’s a surreal feeling living in a body that used to be able to do so much, and suddenly, you’re not sure what you can do. You start to have an identity crisis. 

I used to save lives in the pediatric intensive care unit as a respiratory therapist. I loved my job and actually had a passion for it. When I stepped down because of my health, I felt devastated. Honestly, I couldn’t keep up physically. I’d ask myself, “Who am I without this job?”

I realized many years after my diagnosis that I’d been equating my self-worth to my job. Thinking if I couldn’t work, I wasn’t as valuable. I felt that being sick made me burdensome. So when I lost my position, I felt as though I’d lost a huge chunk of my identity. It’s a constant struggle for me to reconcile the person I thought I was with the way my life, body, and daily routines are now. It’s hard not to imagine how my life would be without MG. 

How did I recover from identity theft by a chronic illness? I rediscovered who I was with MG. I’d been living my life for 22 years a certain way, and all of a sudden it changed. I had to relearn “me.” I’m constantly learning myself; what brings me joy, comfort, or peace. I ask myself now, “What makes me feel good?” I try to shift my perspective. 

I also practice self-acceptance to combat identity crises. I accept where I am, who I am, and my limitations. None of these things make me any less valuable. Yes, I live with MG, but it’s just one piece of the whole puzzle of my identity. I’m able to separate the expectations of society from my reality. No, I probably won’t keep a stable job or be able to be uber-productive every day, but it doesn’t mean I'm a failure. I don’t define my self-worth and value based on titles, roles that I perform, or how much money I make. 

I reclaimed my identity, and I love the person I am today. Chronically ill and all.

 

 

Photo Credit: Cavan Images via Getty Images

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Ashley Brooks

Ashley Brooks

Diagnosed since 2017

Ashley Brooks is a chronic illness blogger and advocate who was diagnosed with myasthenia gravis at 22 years old. She has since dedicated her life to raising awareness about living with a rare disease and helping other people who are living with the same illness find the strength to keep going. Brooks has a bachelor’s degree in respiratory therapy and uses her education and personal experiences to help others. She is passionate about sharing her story, her struggles, and her successes with her community in order to bring hope and support to those fighting their own battles with chronic illnesses. Brooks is also a small business owner. In her free time, she enjoys pouring candles and recording beauty product reviews for her blog.

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