Shawna Barnes, who lives in Wisconsin, was diagnosed with myasthenia gravis (MG) in 2018. She reflects on a memory that exemplifies her philosophy to roll with the punches of MG.

I’m an odd duck. I was a medic in the Army, so not a lot of stuff stresses me out. Because if I can handle what I saw and handled in Iraq, my health is just kind of an annoyance, to be honest.

So when I go in, and it’s like, “Yep, I can’t breathe, and I’ve lost 10 pounds because I can’t eat. But hey, you know, I know this probably isn’t the best diet I should be on, but we should probably see what’s going on with this.”

So that was my first hospitalization, actually, was when I spent four days there because I couldn’t eat. I kept choking on all of my food.

The docs would come in and be like, “Are you OK? Can you eat?”

“Eh, just bring me some mashed potatoes and make sure there’s extra gravy this time, and I’ll slurp it down.”

And just joking about it, they kept saying, “Well, anybody else, they would be freaking out.”

I was like, “Why? I’m on high-dose steroids, and I gained 60 pounds because of this crap. And I’ve lost 10 of it, so just help me figure it out so I can get to eating again.”

But reframing and not being nonchalant about the issues, but talking with the nurses and the physicians and letting them see my personality, that gets them to talk and joke with you back. And, it gets you extra chocolate pudding and ice cream at 2 o’clock in the morning because they feel bad for you, because you can’t eat anything.