The Whispered Roar
— Shawna Barnes

Living with myasthenia gravis (MG) means spending a lot of time advocating for ourselves. Most of the time, that advocacy happens in exam rooms, emergency departments, and hospital beds. What surprised me was learning that sometimes it also continues after we’ve gone home. The challenges of advocating for ourselves,…

The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief after searching so long for a diagnosis. That was quickly followed by an intense desire to learn everything I could about the condition. One of my biggest motivating factors was a strong…

Breathing is supposed to be automatic. Invisible. Effortless. Most people never think about the mechanics behind it — the diaphragm pulling down, the rib cage expanding, the air moving in and out like a tide. But for some of us living with myasthenia gravis (MG), those mechanics take center…

Myasthenia gravis (MG)  doesn’t usually explode — it erodes. It might be weeks of throat clearing, feeling like you just can’t catch your breath, or eye droop giving everyone the mean mug and acting like it’s filing a workplace grievance. The night I had to crank my BiPAP…

Two years ago, I was living a life that felt like mine. I had purpose and direction. I had a body that mostly cooperated. I was building things — businesses, platforms, routines, dreams. I was moving forward. Now, I’m not. Instead, I’m being fitted for a ventilator. Not “maybe someday”…

Last week, I promised a friend I’d drive her to a surgery. It wasn’t my appointment, but anyone living with myasthenia gravis (MG) knows that showing up for anything requires its own kind of preparation. I spent three days doing what I’ve learned to do before any major commitment:…

I used to love summer. I wasn’t just a “summer person” — I lived in it. I was an outdoor lifeguard and swim instructor, spending entire days in the sun, water, and heat without thinking twice. My body used to thrive there. Until it didn’t. Myasthenia…

Lying in bed while I type this from my phone, I’m annoyed, possibly even aggravated. I’ve been in this same position for most of the afternoon, impersonating Darth Vader while tethered to my BiPAP. My diaphragm has decided to be a passenger princess again, refusing to do the job…

Myasthenia gravis (MG) comes with symptoms that rarely behave the way people might expect. They tend to be subtle, they’re often invisible, and they get misread constantly — sometimes in ways that are annoying, sometimes in ways that are unintentionally hilarious. In my experience, the following three MG…

When you live with a disease like myasthenia gravis (MG), the unexplainable becomes part of daily life. Symptoms appear without warning, flares derail plans, and a diagnosis can feel unfair, no matter how long you’ve lived with it. Religion is one of the oldest ways humans have tried to…

Being told “no” never gets easier. Even though I’m an adult, that two-letter word has the ability to bring out my inner tantrum-throwing toddler in their “terrible twos.” My husband, Justin, has found a way to lessen the blow so that “no” becomes a …