Why my twin is terrified of myasthenia gravis remission
I only just learned that he had several periods of partial remission
The writer and editor Christy Leigh Stewart, who lives with a terminal illness, once said, “Remission is not a cure. It’s an adjective of disability.” In other words, remission from a disease refers to a temporary reprieve from symptoms.
There’s a lot I’m still learning about my twin brother, Aaron, who lives with myasthenia gravis (MG) — including that he experienced MG remission several times over a five-year period that ended in 2019.
Aaron was diagnosed with MG in 1999. He’s kept many details about his life and MG symptoms to himself for 26 years now. I only just learned that heat exacerbates his MG. He silently dealt with severe eye misalignment for decades, wearing sunglasses in public to hide it. He underwent successful strabismus surgery in late 2024 to correct the problem; still, his eyes and pupils are now fixed forward and don’t move.
One of the biggest things I’ve learned is that people with MG have to deal with a lot, all while keeping their emotions in check. Now I’m finding out that people with MG can experience partial or full remission for months or years at a time. For Aaron, his intermittent periods of partial remission over the years have been both a blessing and emotionally frustrating.
‘Terrified of remission’
“So far I’m OK. I still get muscle weakness, but I’m terrified of remission,” Aaron told me recently.
I’d asked Aaron about his health and doctor visits. I then asked if he’d ever experienced remission, and for how long. Aaron likes to say a lot with as few words as possible, so I often have to make sure we’re not misunderstanding each other.
“Dude, are we on the same page about remission?” I asked. “I mean, has your MG ever gone away for weeks, months, or years?”
“Yes,” Aaron said. “Sometimes my symptoms would go away for a few weeks or months.”
“Complete remission?” I asked.
“No. Like a partial remission. This was over a five-year period.”
“Really?” I asked, flabbergasted. “When did this happen? Why didn’t you ever say anything?”
“It stopped in 2019,” Aaron said. “No one asked.”
It’s a damning but true assessment. I’m his twin and I knew nothing about this. I realized at this point that I had buried the lede.
“Why is the idea of remission terrifying to you? I thought that was a good thing.”
“I was always afraid of [MG] coming back. Afraid of getting weaker or needing another operation,” Aaron said.
I now get what he means. It can be hard to enjoy remission if you know the symptoms might come back; stress and worry could also bring remission to an end. Aaron’s remission was partial and intermittent, so he knew his MG symptoms would return.
“Does remission just happen? Did your meds or stress and anger management help?” I asked.
“I don’t know,” Aaron said.
“How do you not get angry?” In hindsight, that was a cruel thing to ask of someone whose health is predicated on not getting angry or stressed.
“I was angry. It makes you want to cry. But what could I do?” Aaron said.
Unprompted, he continued, “During that time [of remission], I stopped taking meds for several days.”
He wanted to believe his remission was a cure.
“Please don’t do that again,” I said. So easy for me to judge.
“No, never again. I got so weak when the MG came back,” Aaron said. For 26 years, he kept all of this hidden. I feel awful.
“I should have asked these things long ago,” I said.
“No, I should have spoken up to you,” Aaron responded.
“Let’s agree to disagree,” I countered. We both laughed, cutting through the mood.
We transitioned to discussing our shared disappointment with the show “Daredevil: Born Again” and modern comic books before our conversation ended.
Is the temporary cessation of MG symptoms a reason to have faith in a doctor-approved medical plan? I’d think so, but that’s easy to say when you don’t have MG.
Remission is not a cure, but it can be a reason to hope. In my view, the best defense against MG, besides doctor’s advice and medication, is hope and a positive attitude.
I hate that Aaron felt false hope of being cured, but I’m grateful he experienced some semblance of remission.
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.
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