Welcome to “The Whispered Roar,” a column where I will describe what it’s like living with a neuromuscular autoimmune disease called myasthenia gravis (MG). I was officially diagnosed with generalized MG in 2018, although I had been battling symptoms since 2011. My journey to diagnosis is not an uncommon…
The Whispered Roar
— Shawna Barnes
Shawna N.M. Barnes is a writer, accessible website designer, and disabled veteran living in Cable, Wisconsin, with her husband. She was diagnosed with seronegative generalized myasthenia gravis (MG) in 2018 after seven years of advocating for herself within the VA’s medical system. She hopes that through her transparency, bluntness, and no-nonsense way of writing about life with her disease that she can help others see that there is hope after an MG diagnosis. Sometimes, we just have to get out of our own way to live our best lives.
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There’s a part of myasthenia gravis (MG) that people rarely talk about, and it’s not the symptoms, the appointments, or the medications. It’s the sheer weight of having to advocate for yourself over and over and over. Advocacy may sound noble, but from an insider perspective, it can…
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