Finding humor in life with myasthenia gravis

In the years since my myasthenia gravis (MG) diagnosis, I’ve learned to live with certain remarks that, though well-intended, can be hurtful. In conversations with other MG patients, I’ve heard about experiences like mine. No matter what we do — buying groceries, tying our shoes, breathing — someone is bound to call us “inspirational.”

Last week while I was grocery shopping, someone on social media commented, “You are so brave!” I wasn’t fighting a dragon. I wasn’t rescuing kittens from a burning building. I was literally just shopping. But I’ll take any medal folks want to offer me.

While life with a disability comes with challenges, it’s also sharpened my sense of humor. Over the past five years, I’ve found myself in situations so absurd, so dark, that if I hadn’t laughed, I might not have survived.

I’ve used quips and sarcastic remarks to help turn tense moments into opportunities for connection. When others feel uncomfortable talking about MG and its limitations, I want to tell them it’s all right. Take a deep breath and relax. It’s the same old me; I’m just dealing with medical issues that take some getting used to.

I thought I’d share some of what I consider my better attempts at humor. I have many more, but for now, it’s probably best that I stick to these. Some of my others aren’t quite ready for prime time.

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My top jokes

With MG, slurred speech is a difficult obstacle. There are days when it’s easier for me to write what I’d like to say than to expect others to comprehend me. Nowadays, when this happens, I tell people they’ll have to forgive me — I’m talking in cursive today.

My energy levels fluctuate wildly. I may get out of bed ready to conquer the world, only to collapse two hours later. That can wreak havoc on my already pitiful social life. When I need to make that phone call when I back out of a commitment, I now use exercise as my excuse, saying I need to stick to my MG exercise regimen. Step 1: Think about working out. Step 2: Take a nap. Step 3: Lift weights. Today, I lifted a cup of coffee. Now I’m too tired to go out.

Ptosis, or eyelid drooping, is one effect of MG that I find especially difficult. It cuts me off from reading, watching TV, or surfing the net. It frightens some to see me when I’m having a flare-up. Trust me, I’m not a pretty picture in those moments. I now inject some humor into such situations. When someone nervously asks if I’m OK, I’ll tell them I’m fine, but my face muscles had to check out early today.

People often ask me if I’ll ever return to work. This topic is sensitive for me. My friends and family know that, and we don’t often mention it. When it does come up, we can feel the tension in the air. Usually it’s a completely innocent question, and I don’t want the questioner to feel embarrassed. I’ll tell them that I found a website that helps you figure out how long you can live comfortably in retirement, then plugged in my numbers.

According to the website, I can live comfortably for about 17 minutes. Therefore, I’ve decided to get a job working the loading dock at a local warehouse. That should help my financial situation. Just kidding! I hope.

‘If you can laugh at it, you can live with it’

Whether it’s fighting with my eyelids or fighting to stay awake, life with MG isn’t always easy. Life isn’t easy. Why not try to make it a little more bearable through humor? Laughter can be an ointment that eases pain.

In a February 2024 article from The Saturday Evening Post, Rich Warren wrote that author Erma Bombeck was a “housewife-turned-humorist who, until her death in 1996, poked gentle fun at the foibles of family life. … As Erma herself once put it, ‘If you can laugh at it, you can live with it.'” Erma spoke from experience. Not long after a kidney transplant, she died at age 69.

Thanks, Erma. You’ve shown us a way forward.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.