The Whispered Roar
— Shawna Barnes

Over the last 15 years, I’ve learned that having myasthenia gravis (MG) means living inside a body that rarely behaves the same way twice. In the early years of my symptoms, long before anyone put all the pieces together, I kept trying to make sense of what was…

Loving someone with myasthenia gravis (MG) isn’t a rom-com, inspirational-poster kind of love. It’s the sleeves-rolled-up, “we’re figuring this out in real time,” “in sickness and never mind” kind of love. MG doesn’t just change the person who carries it; it reshapes the entire relationship. I’ve lived with this…

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…

Loving your body is easy advice to give when your body behaves. When it wakes up when you do, moves when you ask, and carries you through the day without protest. But when you live with myasthenia gravis (MG), the relationship you have with your body becomes something far…

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…

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…