Coping with myasthenia gravis meant staying silent

“Silence is a true friend who never betrays,” Confucius once said.

There is so much modern science doesn’t know about myasthenia gravis (MG). It must be taxing and frustrating for people with MG to explain the disease and its symptoms to family, friends, and others who may have good intentions but can never truly understand what it’s like. It’s probably even harder discussing it with strangers who seem indifferent.

The more I talk to my twin brother, Aaron, who has MG, the more I realize that his main strategy for dealing with this aspect of the disease was to do so in silence.

Aaron was diagnosed with MG in 1999, when he was 24. While today we can find news about experimental medicines and research studies, doctors knew little about the disease when Aaron was diagnosed. The internet was still new at the time, and social media didn’t yet exist. It must’ve been emotionally stifling for Aaron to have to cope with this disease at such a young age.

As a family, we didn’t talk much about it with him. I wish I could say that happened in order to spare him embarrassment and pain, but it was probably more for our own sake. It was the 20th century, and I think a lot was expected to be left unsaid. I don’t believe it was done out of malice, but I certainly share the blame.

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Breaking the silence

“What could anyone do?” Aaron recently said to me as we discussed the matter. I realized his attitude about MG is an augmented mindset over the past 25 years. We were both born and raised in the South Bronx in New York City. We weren’t street dudes, but we did have to project mental toughness and bravado when walking the streets of the South Bronx in the 1980s and ’90s.

In the course of my conversation with Aaron, he said there were many things about his MG symptoms that he had kept to himself. He said that dealing with flare-ups of muscle weakness, which caused his eyes to be badly misaligned, was very hard on him emotionally. (He recently had strabismus surgery to correct it.) Dark sunglasses became a part of his identity for a long time in order to avoid the judgmental glares of strangers.

He also told me that police had stopped him several times thinking he might’ve been drunk or otherwise impaired due to his misaligned eyes.

The most difficult thing he’s kept silent about all this time was his extreme double vision, which he suffered from for over three years due to his MG. This was a major factor in his decision to have strabismus surgery.

I was absolutely floored when he told me these things during a Facebook chat. I take pride in being a twin, but there is so much about Aaron I don’t know, especially when it comes to his medical condition, and that pierces my soul.

I asked him if anyone in the family knew how bad his symptoms were. He said no. “What could anyone do?” he repeated.

I wondered what Aaron did to stay calm and manage his emotions. We both love geeking out to experimental heavy metal music, but he really loves old-school soul music and zoning out to Mary J. Blige and Stevie Wonder. He said that chatting with me, even though we live far away from each other, also helps.

It’s hard to admit, but I started getting gray hair before I realized that not everything must go unsaid. I know my twin brother, but I don’t know his pain. I have a lot to make up for in that regard.

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.