Coping with chronic illness: Who am I to judge?

Along with the certainty of death and taxes, life is mostly about mitigating stress and finding peace within the chaos. As we navigate life, uncertainty abounds, and some of us deal with more of it than others.

I’m learning that young people say we huff “copium” when grappling with uncertainty, which is part of human nature. Life is about coping.

I used to smoke a lot of marijuana to get through life, which didn’t go over well with everyone. My twin brother, Aaron, was judged for his obsession with video games, which I thought bordered on addiction. Aaron was diagnosed with myasthenia gravis (MG) in 1999, at the age of 24. But he was an avid gamer long before his diagnosis.

After his diagnosis, gaming became like a religion for him. He was playing video games all the time. I know this because after I got divorced and lost my job, I had to move back home in 2007. The way I coped with the aftermath of my problems was to be stoned as much as possible instead of being accountable for the choices that got me there. So I was judging Aaron for being a zealous gamer from within a haze of pot smoke.

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Aaron recently told me that he plays video games partly as a coping mechanism. For decades, he’d kept his feelings about MG to himself. I was afraid to bring up the topic of gaming with him, but I also wanted to clear the air now that we’re almost 50 years old. I apologized for having judged him about the video games.

“It’s all good,” he replied, almost Zen-like.

I probed further: “You were obsessed with gaming before MG, but you were gaming so much more after your diagnosis,” I said. “Were you doing it as a fan or as a way to cope with MG?”

“Video games helped me escape,” he said. “I didn’t have to deal with the reality of MG making me weak. Back then, I tried to play games all the time.”

I asked him if MG flare-ups and muscle weakness were still an everyday challenge for him.

“Yes, definitely, because anything can happen,” he said. “My MG flare-ups are off and on, but I still have times of weakness, like during heat waves. I guess you can say I use video games to cope with MG, but I also just like gaming.”

I wrongly had the impression that Aaron’s MG flare-ups weren’t as bad now as they used to be. That was either due to miscommunication or me not asking the right questions. For example, I only recently learned that Aaron experiences severe muscle weakness during heat waves. He lives in New York City, which has notoriously hot summers. I also only recently learned that he doesn’t run anymore and has given up driving because of his MG.

It wasn’t until Aaron and I started having these conversations that I realized he’d have to take MG medications for the rest of his life. That’s a serious reality for him to cope with. He even admitted that at one point, he’d briefly stopped taking his meds because he’d experienced partial MG remission.

Aaron was once a manual laborer, but his work life ended after being diagnosed with MG.

Given all of this, who am I to judge him for playing video games?

“You know, I needed to play video games even though it was sometimes so hard to do with the weakness in my hands,” he said. “So much was out of my control. Maybe it was good to feel some control.”

I was happy to hear Aaron express himself, but it also made me a little uneasy. I really don’t know my twin as much as I should. As we ended our chat, I was annoyed with myself for not having discussed this sooner. Coping is part of human nature, and Aaron has the right to cope with his MG however he wants.

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.