Tools of the Trade: How I Live My Best Life With MG
It’s 4:30 a.m. on Thursday, and I have been awake since 3 a.m. My deadline for turning in this column is less than four hours away. Why does this matter? I’ve been wanting to…
The Whispered Roar
— Shawna Barnes
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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How quicksand, elephants, and sirens relate to living with MG
Close your eyes and imagine that you’re in a diving suit, swimming in a warm and comfortable lagoon. You find yourself drawn into the depths of the beautiful teal water by a siren. At…
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How Can Hospitals Better Serve Rare Disease Communities?
“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the rare disease community, these comments aren’t uncommon. As someone with seronegative myasthenia gravis…
My Quest to Name the Beast That Is MG
With a prevalence of 14-40 cases per 100,000 people in the U.S., myasthenia gravis (MG) is considered a rare disease. Plus, early-onset MG can mimic other diseases like multiple sclerosis, amyotrophic lateral sclerosis,…
‘Let’s Talk About Sex, Baby’
“Let’s talk about sex, baby/ Let’s talk about you and me/ Let’s talk about all the good things/ And the bad things that may be.” Am I aging myself by referencing a Salt-N-Pepa…
The Trials and Tribulations of COVID-19 and Rare Disease
Last month, I began experiencing symptoms of COVID-19. My husband had tested positive two days before that, but we thought I might get lucky because I was fully vaccinated and boosted. Alas, it…
Accepting Help and Receiving Kindness
I wrote last week about how the inaction and silence of others can be deafening. The opposite is also true. When help is offered and the offer is followed up on, it can…
With Chronic Illness, the Silence of Others Is Deafening
One of the hardest things about living with a chronic illness like myasthenia gravis (MG) is the dialogue that doesn’t happen with people we know. The eye rolls we perceive when we try to…
Setting Realistic Goals and Expectations With MG
Many of my friends, colleagues, and family members set goals for the year in January. Goals can be personal or professional, interpersonal or financial, realistic or not. What makes a goal realistic, particularly for…
When a Subtle Voice Becomes a Roar
Welcome to “The Whispered Roar,” a column where I will describe what it’s like living with a neuromuscular autoimmune disease called myasthenia gravis (MG). I was officially diagnosed with generalized MG in 2018,…
