The Whispered Roar
— Shawna Barnes

Living with myasthenia gravis (MG) means living with questions. Not the big, existential ones, but the small, relentless ones that follow you through your day. Is this an internal trigger or an external one? Is it something I can control, or is it happening no matter what I do?…

Note: This column describes the author’s own experiences with intravenous immunoglobulin (IVIG) infusions. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. One of the most disorienting parts of living with myasthenia gravis (MG) is how quickly everything can…

Living with myasthenia gravis (MG) means learning that not all triggers come from the outside world. Some of the biggest ones come from inside my own body, the traitor. Hormonal shifts, sleep disruptions, and internal rhythms can shape my symptoms long before I’m aware danger is afoot. These…

Living with myasthenia gravis (MG) means learning that some of the most powerful triggers aren’t the ones anyone warns you about. They’re not always heat, or illness, or overexertion (though those matter, too). The hidden triggers are the ones you discover only by living inside a body…

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…