The Whispered Roar – a Column by Shawna Barnes

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…

Note: This column describes the author’s own experiences with Mestinon (pyridostigmine bromide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. There’s a kind of math you learn to do when you live with myasthenia gravis (MG). It’s a quiet,…

There’s a version of chronic illness people imagine: the one where you get a diagnosis, adjust a few routines, take your medications, and eventually settle into something manageable. And then there’s the real version, the one that unfolds slowly and quietly until one day you look around and realize your…

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…

The exhaustion that comes from not being believed about the details of my life with myasthenia gravis (MG) isn’t something that announces itself all at once. It settles in slowly, the way a long winter works its way into your bones. Before you know it, you’re carrying a weight…

Asking for help has never come naturally to me. I’ve always been the person who is the helper or the one who pushes through and figures it out. Living with myasthenia gravis (MG) has forced me to rethink that instinct, but it hasn’t erased it. I still hesitate. I…

There are conversations I’ve had so many times that I can feel my body tense before the first word even leaves my mouth. Living with myasthenia gravis (MG) means carrying a story that most people can’t see, and sometimes the hardest part isn’t the symptoms. It’s the explaining. I…

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?…