The Whispered Roar
— Shawna Barnes

Myasthenia gravis (MG) has taken plenty from me — strength, stamina, the ability to pretend I’m fine when I’m absolutely not. But here’s the twist nobody expects: Some of the things MG yanked out of my life were things I should’ve tossed years ago. MG may be a…

There’s a strange quiet that settles over a house when two people who usually move in tandem suddenly have to live on opposite sides of it. My husband has been fighting off a nasty head and chest cold. The kind with heavy coughing and congestion that rattles the walls and…

I celebrated Independence Day a little differently this year. While the rest of the country lit fireworks, grilled burgers, and gathered with friends, I quietly celebrated a different kind of freedom — the kind that comes from choosing a new path when the one you’re on stops serving you. Last…

Living your best life sounds like a big and overly simply goal, the kind people put on vision boards or stitch onto throw pillows. But living with myasthenia gravis (MG), I’ve learned that my “best life” isn’t a sweeping transformation. It’s not a grand plan or a 10‑step program.

There’s a phrase I hear more often than I’d like: “Must be nice.” Must be nice to sleep that long, to nap whenever I want, to not have to get up for work. Yeah, it’s real “nice” having a body that forces rest whether I want it or not. Here’s…

One of the hardest parts of living with myasthenia gravis (MG) is how fast things can change. I can wake up feeling decent and start my day like anyone else, and then hit a wall so hard it feels like my body pulled the emergency brake without warning. People…

Living with myasthenia gravis (MG) means constantly adjusting to a body that doesn’t always cooperate, and the people around me often want to help but don’t know how. Sometimes it turns into hovering, second‑guessing, or trying to fix things that aren’t fixable. Other times, people stay silent because they…

People think myasthenia gravis (MG) is about symptoms you can point to, but the truth is, most of it happens under the surface. I move through every day doing quiet calculations that no one else notices, and those calculations shape everything from how long I stand to whether I…

I didn’t become an advocate because I wanted to. I became one because the alternative was letting other people decide what happened to my body, my career, and my future. The first time I realized that, I was still in my Army uniform, sick and scared. When I struggled…

I’m sitting in an infusion chair with saline slowly dripping into my veins after getting a dose of iron, and all I can think is that I spent a full year blaming myasthenia gravis (MG) for this level of exhaustion. For an entire year, I dragged myself through days…

Some days, living with myasthenia gravis (MG) feels less like managing a medical condition and more like trying to negotiate with a very moody landlord. That landlord owns the building you live in, the body you move in, and the energy you rely on, and they change the terms…