June is Myasthenia Gravis Awareness Month.
Every June for the past five years, I’ve thought about writing something but always come up short, because what is worth saying?
Should I share my diagnosis story? Should I try to detail all the ways myasthenia gravis has shifted the direction of my life? Should I list the symptoms so people might be better able to recognize it in themselves or others?
Having myasthenia gravis means sometimes I use a cane…
My diagnosis was swift and too long ago to matter. My life has shifted considerably but that is relevant to no one but me. You can Google symptoms and find an exhaustive list.
Those things are not worth sharing today. The awareness I hope people gain is that not all disabilities are visible. Not every illness has a cure. Pain sometimes just persists. That’s the way it is.
Sometimes I use a walker…
Recognize there are people you pass every day in your regular routines who are carrying heavy loads that go unseen. Don’t judge the person using an accessible parking space who looks “fine.” They may be able to make it into the store but are unsure if they’ll be able to make it back, and know that saving those few extra steps might make the difference.
Don’t begrudge that woman you see take the elevator even though it’s only one floor. Maybe she can walk fine on flat ground but not up stairs.
Sometimes I wear sunglasses indoors
Don’t assume that man is using the accessible stall in the bathroom because he just wants more space. He may not be able to get up off a toilet without using grab bars even though he looks no different than you.
Don’t accuse that young person of faking it, or carrying a cane just for attention. They may never know when their legs might fail and drop them to the ground.
Sometimes I get infusions in the hospital
Don’t give the stink-eye to that teenager sitting in the priority seating area on public transit. He might be barely able to sit upright today, let alone stand.
Don’t assume that lady in the checkout line is a bitch because she seems unfriendly and impatient. She might be in excruciating pain and is just trying to survive the day.
Sometimes I do my infusions myself as I run errands
Realize that not every experience is like yours. And that’s OK.
Give the benefit of the doubt.
Sometimes my face feels droopy and lopsided
Listen when people tell you their stories, even though you may have never experienced what they’re describing.
Bodies, like people, are diverse and we need to make space for each other as we move through the world. Because we are better together.
and sometimes I’m perfectly fine and strong and happy. Every day is a surprise.