Grieving the loss of independence after an MG diagnosis

For more than 26 years, I avoided talking about myasthenia gravis (MG) with my twin, Aaron. We’re 50 now, and Aaron was in his mid-20s when he was diagnosed, and everything changed. He went from being an intense, exercise-loving, hard-working man to living with a condition that weakens his muscles and profoundly alters his quality of life.

I still remember how active Aaron was before MG. For years, I stayed silent about his illness, partly to protect my own emotional health and partly because I wasn’t sure how it would make him feel.

“You used to be so stubbornly independent,” I told Aaron. “Do you think you’ve fully accepted losing that independence?”

Aaron paused before answering. “Yes and no,” he said. “Maybe 90%. I can’t say I’ve fully accepted losing independence.” He paused again, searching for the right words. “Some days I accept it. Other days, it’s hard. There’s no closure, you know? Not like in a film. Some days, I grieve for my former body.”

Recommended Reading

February 18, 2026 Columns by Mark Harrington

Even with myasthenia gravis, ‘you still have to get up in the morning’

‘Some days are better than others’

I tried not to interrupt his reply. I wanted to sympathize and share my own experiences, but I held back. Sometimes, listening is enough. I worry too much about whether my questions are offensive. Maybe my hope that he’ll one day fully accept his condition is more about easing my own grief than his.

“Some days are much better than others. My body has fully accepted it has MG,” Aaron said with a laugh. “Sometimes, when I have good energy, my mind forgets.” But when he tries to pick up something heavy or push himself a little harder, his mind flashes back to life before MG.

“I don’t think I’ve stopped grieving the loss of my former life. It comes and goes in waves. I know focusing on grief doesn’t help,” Aaron admitted.

Studies vary, but somewhere between 14% and 58% of people with MG experience depression. Research is lacking regarding the benefits of psychotherapy for those with MG, but studies do suggest that patients who approach their condition with calm and acceptance tend to cope better mentally.

I asked Aaron if he’d ever considered talking to a therapist. His doctor had suggested it, but he’s still thinking it over. I also asked about joining an MG support group and offered to help him find one, but I realized I need to stop pushing; he’s not ready for that yet.

When I asked Aaron what helped him find acceptance, he brought up a time a few years ago when he experienced a partial remission. Hoping his MG was gone, he stopped taking his meds for a few weeks. His symptoms returned with a vengeance. Since then, Aaron has never missed a dose.

Aaron told me he had no choice but to accept what life was telling him, no matter how much he grieved his former self.

“Accepting that I have MG was so hard because, for so long, it felt like I couldn’t be anything else,” Aaron said. “There has to be more to life than this.”

Maybe that “more” is something like our plan to launch our own comic books and write scripts together. Aaron is also an avid gamer, and he’s always talking about apps to help design video games.

He told me he lost many years to depression, missing his pre-MG body and struggling to accept his condition. Life has already forced him to accept what he’s lost. Now, he wants to focus on improving his health and achieving new goals.

“I can focus on what MG took from me or on what I can take from life now,” Aaron said. “I choose the latter.”

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.