Let Me Explain

One of the hardest parts of living with a rare disease are those awkward explanations. Myasthenia gravis (MG) doesn’t always come with a limp or a rash. It sometimes comes with difficulty walking or a high-pitched voice that could be 1 of a dozen things. But it always comes with curious questions and truly awkward stares.^1,2

MG changed our social life

For decades hubby and I had a pretty active social life, sharing our own interests and those of our boys with friends, family, and the community. Myasthenia gravis really hit that pattern hard. At first, we didn’t care what they thought ... but we were lonely. The buzz of the local breakfast place was a distant memory. The crowd of a mall somehow seemed like another planet. And after a couple years of COVID, hubby really pined for the aisles of the local big box hardware store.

When people ask: "How are you?" almost no one wants a real answer. It’s complicated - for the person with MG and for caregivers and family. What part of accurate facts do we owe to casual acquaintances? You want to get out and communicate with friends, but you don’t want to become the next episode of "Medical Mysteries."

Some of those who ask are just being polite, some are genuinely curious, and a few are secretly wondering if it is "catchy." But almost no one wants to stand on the sidewalk listening to a neurology lecture.

It is a lonely disease

It’s our common reluctance to explain complex ideas that makes MG such a lonely disease. So we often just avoided the occasions when we might have to share explanations or watch for real things that were "catchy." And that was a lot of occasions.

But with experience comes wisdom, and ways to cope. Now we practice those simple but accurate explanations. We even use them as an opportunity to educate and communicate.

Prepare some answers

Now when someone asks "How are you?" I have my repertoire of short but accurate answers that are limited to what they really want to know. Most people can understand the basic idea of an autoimmune condition ("It’s a little like arthritis.") But there are still a lot of misconceptions out there.

Just browse social media, where trolls recommend medicines that "boost your immune system" — exactly the opposite of what most MG treatments do. That’s why we always try to avoid "TMI" (Too much information.)

Still, we have learned not to be shy. If hubby’s speech is slurred or he has double vision, we don’t help him hide it anymore. We explain briefly but accurately. I learned that lesson early on.

Ready to explain MG symptoms

On an airport shuttle after a tiring trip, hubby was zonked. The young adults across the aisle were tittering. They assumed he was drunk. I truly regret not telling them off! that evening. I wasn’t ready then. I am now. I am also prepared to explain why in a crowded situation we both still grab masks. (The drugs that treat MG include immunosuppressants.)¹

"I’m sure you’ve noticed. Gary has myasthenia gravis. It is not contagious or really threatening. He’s just tired right now." or "Gary’s immune system is not great because of the drugs he takes. We are still extra cautious." Those answers are still borderline TMI for most folks, but they work.

Developing new hobbies and social connections

We are determined to get back to the real world whenever we can. So for social expeditions, we tend to look for activities that can be adjourned when we’ve had enough, or places where he can take a break. We also look for friends who can handle it.

In another story I wrote how we bought a tiny camper van so he would have a place to really rest when we go out. We used to love indoor concerts and plays. Now we enjoy an online book club, a walk through the Saturday green market and our town’s band shell series. We aren’t afraid to leave at intermission, either. I’m also looking for an inexpensive inland cruise — not the 3,000 passenger floating cities, but just a room with a view.

It has taken real effort to develop new hobbies and social connections that work for us. It's also taken practice with those quick responses to awkward questions. The real danger is the loneliness of the recliner in front of the television.

And probably the most important thing is to look forward, not backward. We’ve done the "10 European Countries in a Month" thing. Our next vacation may simply be a weekend "for the birds." And we won't feel the need to explain.