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“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 (MG), I hear them almost every time I go to the emergency room. I experience bulbar…

A week or so after spending three days in the hospital, I found out I had myasthenia gravis (MG). My symptoms were raging. They included severe double vision, slurred speech, and extreme fatigue, and eating, chewing, and swallowing were next to impossible. All of it was terrifying. Getting up to…

At some point in everyone’s life, we all feel misunderstood. One of my earliest memories is from when I was 6, and a group of kids made me feel like I didn’t fit in. I don’t remember exactly what they did, but I do remember how lost I felt. It’s…

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, and others. If a patient is one of the “lucky” ones who has autoantibodies indicative of…

“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 song? Maybe. But I think the topic of sex is important to discuss. Yet it often…

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 was not to be, as I tested positive shortly afterward. I am a disabled veteran,…

For most of my life, I’ve had a complicated relationship with my weight. I played sports in my early years, but because of my deep and abiding love for sugar and white bread, I was always a chubby kid. And while I wish I could get back to the svelteness…

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 leave you speechless, humbled, and grateful. And those who step up to help often are not…

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 update loved ones about our health status — whether they’re real or not. Or the phone…

A powerful imagination can be both a gift and a curse. On one hand, it can be a way for us to brainstorm and envision ideas. In a way, it can help us make a plan for the goals we want to reach. On the other hand, it can…