The Whispered Roar
— Shawna Barnes

A graphic depicting a woman writing next to a dog.

Shawna N.M. Barnes is a writer, accessible website designer, and disabled veteran living in Cable, Wisconsin, with her husband. She was diagnosed with seronegative generalized myasthenia gravis (MG) in 2018 after seven years of advocating for herself within the VA’s medical system. She hopes that through her transparency, bluntness, and no-nonsense way of writing about life with her disease that she can help others see that there is hope after an MG diagnosis. Sometimes, we just have to get out of our own way to live our best lives.

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The myasthenia gravis triggers that will get you if you don’t watch out

Living with myasthenia gravis (MG) means learning that some of the most powerful triggers aren’t the ones anyone warns you about. They’re not always heat, or illness, or overexertion (though those matter, too). The hidden triggers are the ones you discover only by living inside a body…

Shawna Barnes

Columns

Here We Go Again: I’m Recording My Symptoms, Just in Case

It’s something I’ve always read about in my research on myasthenia gravis (MG). I’d always hoped it would never happen to me. I went so long trying to figure out MG that having to go down that road all over again is daunting. Quite frankly, I don’t want to…

Columns

This Is What Good Care Should Feel Like

On Aug. 8, I had an appointment with a new neurologist. I was apprehensive about it because he would be the second neurologist I’d see at Veterans Affairs (VA) since our move to Wisconsin. I was quite happy with the neurologist I’d met when we got here, when I…

Columns

In Sickness and in Health, We Serve as Caregivers for Each Other

Last week my husband and I celebrated an anniversary on July 20. It wasn’t the anniversary of when we first met (that’s Oct. 15). It wasn’t our wedding anniversary (that’s coming up on Aug. 10). So what was so momentous that we acknowledge it every year? On July 20, 2016,…

Columns

What I’ve Noticed About Myself While Taking Prednisone for MG

Nobody said this life would be easy. We all endure storms we barely make it out of alive. Throw an autoimmune disease like myasthenia gravis into the mix, and life can go from “not easy” to “WTF?” But then you adjust, and “WTF?” becomes your everyday life. During this…

Columns

I’m Learning How to Counteract the Side Effects of Prednisone

Three years ago, after I had a thymectomy and before I started high doses of prednisone to treat my myasthenia gravis (MG), I weighed in at a comfortable 170 pounds. After I was prescribed 20 mg of prednisone a day, I managed my weight OK for a while.

Columns

Donate Plasma and Save a Life: Mine

It’s the last Monday of June. The last Monday of National Myasthenia Gravis Awareness Month. Last week, I shared some tips for both myasthenics and our friends and family on how you can continue to turn awareness into action long after this month is over. As the month…

Columns

How to Be Helpful When Myasthenia Gravis Awareness Month Is Over

“Hey, Shawna, I have a (friend/co-worker/family member) who was just diagnosed with myasthenia gravis. Can I connect the two of you?” One of the advantages — and sometimes disadvantages — of being as outspoken as I am about my battle with this crazy disease is that people turn to…

Columns

Turning Awareness Into Action: How to Support a Loved One With MG

Yay for June! Do you know why I’m so excited about the sixth month of the calendar year? It never meant much growing up except for the end of another school year. It’s not the month when my son and husband were born. Nope, not our anniversary month, either. I…

Columns

What a Difference VA Medical Care Has Made!

“Will my insurance cover it?” That’s a question I thankfully don’t have to ask when discussing various treatments with my care team at Veterans Affairs (VA). Its healthcare clinics have definitely gotten some bad press due to their care of our veterans, and I’ve been on the receiving end of…


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