The Whispered Roar
— Shawna Barnes

Fear. Whether it stems from uncertainty over myasthenia gravis (MG), a lack of support from friends and family, the risk of losing an occupation or vocation, or possible disease flare-ups, living with fear…

How well do you really know your partner? Do you know their food or medication allergies? How about their favorite color? Can you rattle off the things that drive them nuts, both in…

“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…

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…

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…

“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…

“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…

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…

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…

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…

“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…

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…