Last week, my husband rescued me from feeling like the Scarecrow in “The Wizard of Oz” — as if I didn’t have a brain, weighed down by stubborn brain fog that lingered far too long. He wrote about his perspective on my breast reduction surgery, which made me realize…
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.
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…
This week was jam-packed with appointments. When it came time to sit down and write or edit something worthy of y’all, my brain gave me the big ol’ middle finger for multiple days in a row. Enter my husband. I’ve talked about him before. He has been my caregiver…
Living with myasthenia gravis (MG) teaches you one thing pretty fast: This disease doesn’t move in straight lines. It zigzags. It doubles back. It changes the rules midday just to keep things spicy. One morning, I can get dressed and feel almost hunky-dory. But then, on a day before…
Living with myasthenia gravis (MG) means learning to coexist with a body that doesn’t always follow predictable rules. One minute I feel steady, capable, and even hunky-dory. The next, my muscles wave a white flag, and the simplest task feels like climbing a mountain in wet boots. That unpredictability…
Living with myasthenia gravis (MG) is already a full-time job, and not the cushy work-from-home kind with pajama pants and flexible hours. MG is the kind of job that keeps changing your schedule without warning, hands you tasks you didn’t train for, and occasionally leaves you flat on your…
If you’re shopping for someone with myasthenia gravis (MG), choosing the right gift can feel a little like trying to guess what kind of weather you’ll get tomorrow — unpredictable with a chance of “my body said nope.” MG is a rare condition that affects muscle strength, so…
Living with myasthenia gravis (MG) can feel like starring in a mystery movie I never auditioned for. One minute, I’m moving just fine, and the next, my muscles behave like someone flipped my power switch to low. Anyone with MG knows this rhythm all too well, but my road…
Most folks have never heard of myasthenia gravis (MG), and honestly, I don’t blame them. It’s a rare autoimmune disease that even some doctors initially miss. MG plays tricks with the connection between nerves and muscles, kind of like static on a phone line. One moment, the message from…
When November rolls around, you start to notice more mustaches sprouting across faces — some fuzzy, some patchy, some magnificent. They’re part of the Movember movement, a global effort to raise awareness for men’s health, especially mental health, suicide prevention, and cancers that affect men. But when I see…
If there’s one lesson the Army drilled into me that still applies today, it’s hurry up and wait. I thought I’d left that phrase behind, along with my combat boots and field rations, but living with myasthenia gravis (MG) proved me wrong. That old idiom fits perfectly in…
Let’s be honest right out of the gate: Grief stinks. It’s messy, exhausting, and sneaky. And if you live with a chronic illness like myasthenia gravis (MG), grief isn’t just about losing people you love; it’s about losing versions of yourself you never thought you’d have to say goodbye…
Living with myasthenia gravis (MG) means I’ve spent more time in hospitals and clinics than I ever imagined I would. Most of the healthcare providers I’ve met have been kind, compassionate, and respectful. They’ve held my hand through scary procedures, explained complicated medical jargon in ways I could understand,…
Recent Posts
- The burden of chronic illness life when others don’t believe you
- I learn asking for help means choosing not to do everything the hard way
- I’m learning which conversations are worth having, and which ones aren’t
- As I get back to swimming, slow and steady wins the race
- The tug-of-war between my independence and his caregiving

