The Whispered Roar
— Shawna Barnes

“How do you do it?” I’m asked this question a lot by friends, family, and even new acquaintances. I have myasthenia gravis (MG), so the topic usually comes up in conversation. After small talk, I’ll often end up explaining MG and how it affects me. The question usually follows…

H.I.T. Honesty. Integrity. Transparency. These are three values that I use as principles in my personal and professional lives. They were presented to me as H.I.T. by a friend, a fellow veteran and business owner. I use them when I discuss my life with myasthenia gravis, as well as…

I cried. All day. Usually, no matter the level of sadness or grief, I can shut off my emotions because it’s necessary. Crying is one of the triggers that exacerbates my myasthenia gravis (MG) symptoms. I get droopy eyes and have trouble breathing, and weak bulbar muscles…

“Breathe in. Hold the ball. Breathe out. Stroke the horse’s mane. Breathe in. Repulse the monkey.” OK, so maybe it wasn’t exactly like that, but last week, I tried tai chi for the first time in more than 20 years. I was in high school the last time I’d done…

“Maybe if you just exercised, you’d feel better.” “You look tired today.” “I don’t know how you do it.” Mental health, particularly how we feel about ourselves, is a touchy subject, especially when you’re battling a chronic and debilitating illness like myasthenia gravis (MG). Friends and loved…

Feeling so, so tired — the kind of fatigue that makes me wonder if I’m going to fall asleep standing up. Adjusting medication routines because the old timing no longer works. Questioning my sanity as my libido skyrockets. These are all things that have happened since I began experiencing…

People tend to take certain abilities for granted, refusing help even if the need arises. Call it pride, embarrassment, stubbornness, or denial, but the result is the same: Some tasks may not get done if the person doesn’t request assistance. That includes activities of personal hygiene, such as bathing…

Do you ever just sit there, staring into space, wondering which diagnosis you can attribute your latest symptom to? Maybe you don’t even bring up new issues with your doctor, simply chalking them up to whatever health condition you know you have. I’m guilty of doing both. As a former…

“That spot is saved for someone who really needs it, someone living with a disability.” You can unclench your fists and stop gritting your teeth now. If, like me, you’re a young(er) person with myasthenia gravis (MG) and utilize accessible parking spots, you’ve likely heard the above quote, or…

Doctor to patient: “I went to medical school. I think I know what I’m doing and what is best.” Patient to doctor: “My [arbitrary number of years] living with [rare disease] trump the 15 minutes you spent learning about it in class. I think I know my body and what…

Post-traumatic stress disorder (PTSD) is one of those taboo topics many people don’t seem to want to talk about. Good thing I’m not like most folks. I have PTSD from my time in the U.S. Army as a result of combat, surviving assault, and a sprinkling of medical trauma.

What’s that word again? You know, the thing where you can’t remember and your thoughts are fuzzy? Oh yeah! Brain fog. It may be anecdotal, but brain fog seems to be one of those symptoms that crosses the threshold for many autoimmune diseases. Myasthenia gravis (MG) is not…