I Used to Hide My Disease From Others, but Now I Proudly Talk About It

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by Michelle Gonzaba |

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Strength in Weakness column by Michelle Gonzaba / grief

For most of my life, I have been a private person. Most of the time, I keep things close to my chest, because some people tend to be nosy. I purposefully keep parts of me closed off from others, and one of these is myasthenia gravis (MG). 

While I could blame it on privacy, my choice to previously keep my MG diagnosis to myself was mostly due to embarrassment and shame. I hate showing any weakness, and MG is literally all about weakness. Why would I want to tell anyone about that? What if they treated me differently?

It took me a long time to open up to someone outside my family, but doing so helped me change my perspective about myself and my MG.

When I started teaching three years ago, I never anticipated the strong bonds I would forge with my fellow educators. Whether it was due to the stress of our workplace or a mix of personalities that just meshed well together, I became close with the other teachers in the English department. 

Our tightknit group grew closer as the year went on, and I began to feel guilty about not telling them about my MG. Because I wasn’t on any meds or other treatments, I showed no external signs of illness. It felt like I was hiding a big part of myself by not talking about something that had completely changed my life.

Still, I kept it to myself — until a random piece of clothing forced me to open up to others.

One day, I decided to wear a V-neck shirt to work. As I went about my day, I noticed that colleagues and students were continuously glancing down at my chest while speaking to me. No one actually said anything to me, though, until my closest work friend spotted me later in the day.

“Oh my gosh, what happened to you?” she asked with wide eyes, pointing to my chest. I had no idea what she was talking about until I saw what she was looking at. The V-neck had revealed my thymectomy scar. Situated in the middle of my chest and above my heart, the scar showed where a surgeon had cut my breastbone open to remove my thymus gland.

It was impossible to explain the scar without talking about MG. So, before I knew it, I had word-vomited my entire MG story to my friend. And because she is one of the best listeners in the world, her face went through a dramatic journey like that of the comedy series “Unbreakable Kimmy Schmidt.”

When I finished telling her the story, my friend’s face was a picture of complete shock. She said she couldn’t believe what I had gone through. I was startled by her reply. I had always thought that my trauma was painted across my face for the world to see.

I realized then that perhaps I’d been holding a part of myself too closely to my chest. Maybe I didn’t need to hide my MG anymore from the people who were close to me. 

Today, while I don’t exactly wear a sign saying “I have myasthenia gravis” around my neck, I no longer hide it from close friends. I’m much more honest and open about my experiences. If they discuss a topic that reminds me of MG, I’ll speak up and share my story. The more I talk about it, the prouder I am of myself.

And why shouldn’t I, or anyone else with MG, be proud? Look at what we’ve been through. Look at what we’ve achieved!

I’m proud to share my story now. Maybe my experiences will help someone come to the same realization I did. There’s nothing to be ashamed of or embarrassed about when it comes to having MG. I look at my trauma now and see something beautiful and extraordinary. 

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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.

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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.