The Whispered Roar
— Shawna Barnes

What’s the first thing that comes to mind when someone tells you they’re “doing the carnivore diet”? If you’re like my husband, who works in the fitness world, it might just be an eye roll. If you’re a vegan or vegetarian, it might be disgust. What if I told…

“Review scientific articles only and summarize the content to explain what treatments are available for a person with myasthenia gravis experiencing breathing difficulties due to diaphragm and intercostal weakness.” This was the question I posed to Microsoft’s Copilot software, the company’s version of ChatGPT, both of…

The past 12 months have been eye-opening for me, bringing opportunities to accept hard truths about my mortality and independence while living with myasthenia gravis (MG). Both of my husband’s parents passed away in the span of just 18 months: his father on Halloween in 2022 and his…

The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief. 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 desire to prove wrong the doctors who’d…

“Is there anything I need to know to help you in an emergency situation? What does an emergency look like for you?” A client of mine recently asked me those questions as we chatted before getting to work. She had come into The Nook, a shared workspace I run,…

It’s crazy to think that I’m approaching my 30th month of writing my column, “The Whispered Roar,” for Myasthenia Gravis News, as well as my seventh year of raising awareness for myasthenia gravis (MG). Over the years, I’ve grown quite comfortable sharing my story, so I thought…

Because of myasthenia gravis (MG), not only do I have to keep track of the food I eat, the amount I talk, and the schedule for my treatment plan, but I also must pay attention to everything around me. Some days it’s all overwhelming, and I wish I…

As you watch the scene unfold, you see someone standing before a person who’s seated. The person who’s standing swings a pocket watch in front of the other, whose eyes are closed, and chants, “You are getting sleepy. Veeeeeeeery sleepy.” Is this what you envision when someone mentions hypnosis? It…

When explaining myasthenia gravis (MG) to someone, I often describe it as a “fickle [expletive].” With MG, there seems to be no rhyme or reason for anything. At the start of my diagnostic journey, I asked my healthcare providers what might have triggered the slow, progressive mudslide of…

If you’ve been recently diagnosed with myasthenia gravis (MG) and you’re looking for a website to help you understand what that means, including how to explain to family members what your life is actually like, you’re in the right place. If you’ve been hearing the same sh*t about being…

I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information. But even I can admit that when I tried to explain the science behind how myasthenia gravis…

“Disabled.” It’s a word with many meanings that trigger a gamut of feelings. Myasthenia gravis (MG) is considered a rare and disabling disease. It qualifies those of us who have it to collect disability benefits. (The ease of collecting these benefits is an entirely different topic that I’ll not…