The Whispered Roar
— Shawna Barnes

A graphic depicting a woman writing next to a dog.

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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Columns

How to make room for intimacy when chronic illness enters a relationship

Intimacy becomes a different kind of conversation when a chronic illness like myasthenia gravis (MG) enters a relationship. Before my diagnosis, I believed closeness was mostly about desire, timing, and connection. I didn’t realize how much it also depended on muscle strength, breath control, and the ability to stay…

Shawna Barnes

Columns

With Chronic Illness, the Silence of Others Is Deafening

One of the hardest things about living with a chronic illness like myasthenia gravis (MG) is the dialogue that doesn’t happen with people we know. The eye rolls we perceive when we try to update loved ones about our health status — whether they’re real or not. Or the phone…

Columns

Setting Realistic Goals and Expectations With MG

Many of my friends, colleagues, and family members set goals for the year in January. Goals can be personal or professional, interpersonal or financial, realistic or not. What makes a goal realistic, particularly for someone with myasthenia gravis (MG)? It’s a tough question to answer, but I’ll do my best.

Columns

When a Subtle Voice Becomes a Roar

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…


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