I like to think of myself as a strong individual. Even before myasthenia gravis (MG) entered my life, I had, like most people, faced my share of challenges: the usual relationship issues, loss of loved ones, and so on. Unlike most, I underwent two years of diagnosis, surgery, and post-operative recovery from brain cancer. This forced me to become resilient and tough, though these traits are often invisible to others.
When I received my MG diagnosis in 2020, I considered it something minor. My father had lived with MG for the last 11 years of his life, and while the disease slowed him down a bit, he was otherwise healthy. What I couldn’t see, since he lived 1,500 miles from me, were his many struggles, which led me to underestimate the seriousness of the disease. Believe it or not, I viewed it as simply a minor irritation.
That illusion didn’t last.
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Sometimes called “the snowflake disease,” MG is, in many ways, an invisible illness. In a 2024 blog post on the Myasthenia Gravis Foundation of America’s website, Greg Olsen wrote, “Just like a snowflake, the symptoms can appear one minute and be gone the next. If conditions are right, a snowflake will hang around for a while; perhaps minutes, or hours, or even days, but eventually it melts away.”
I would add that many MG symptoms aren’t visible. Weakness, exhaustion, and the inability to speak or swallow can come and go, leaving others — and sometimes even us, the patients — unsure of what is happening.
The physical and mental burden of MG
A few weeks ago, that invisibility nearly became my undoing. What began as a routine day quickly spiraled into something far more serious. My symptoms flared with unexpected ferocity. Eating became difficult. Speaking became strained. My eyes began to close against my will. I found myself staring at the possibility of hospitalization, something I’d managed to avoid for three years. There were moments when choking was so severe that I was on the verge of death.
But the physical symptoms were only part of the story.
What followed in the days after was unexpected: I experienced a kind of mental and emotional collapse. The stress of the flare, combined with the fear of losing control over my own body and choking to death, triggered something deeper. I struggled to focus. Simple tasks felt overwhelming. Getting out of bed required a level of effort that seemed disproportionate to the act itself. There were moments when the anxiety felt suffocating, when my thoughts raced in circles I could not break. In short, I found myself confronting not only MG but the invisible burden of mental health.
The connection between chronic illness and mental health is well documented, but it is rarely discussed in honest, everyday terms. According to the National Institute of Mental Health, “People who have a chronic disease are at a higher risk of developing depression.” That clinical language, while accurate, hardly captures the lived reality. It does not adequately convey the quiet panic, the sense of isolation, and the frustration of a mind that refuses to cooperate.
In many ways, mental health struggles mirror MG itself. Both are often invisible. Both are frequently misunderstood. And both require a kind of daily courage that goes largely unseen.
A new version of strength
As my life has returned to normal, I am reminded of Ernest Hemingway’s words: “The world breaks everyone and afterward many are strong at the broken places.” I used to think strength meant enduring without breaking. Now I’m beginning to understand that it may mean something else entirely.
The past two weeks have not been easy. There were moments when I felt I was coming apart at the seams, physically and emotionally. But slowly, almost imperceptibly at first, things began to improve. The symptoms eased. The anxiety loosened its grip. I found myself able to focus again, to engage, to live. I am, as they say, back in the saddle.
But I’m not naive. I know this will most likely happen again. MG has a way of reminding you that control is, at best, temporary. And the accompanying mental health struggles never leave.
Oddly enough, I find a strange comfort in that knowledge. Because if it happens again, I will recognize it. I will name it. And I will know that I have come through it before.
And if all else fails, I will cling to one final truth: Getting older and dealing with chronic illness is a lot like trying to remember why you walked into a room. Except sometimes the room is your own body, and you’re not entirely sure what you came in for. But you’re pretty sure it wasn’t this.
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.