Living with myasthenia gravis is a full-time job
My life may seem quiet and still, but I am working hard all day
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Once upon a time, I was constantly on the go. From the moment my feet hit the ground each morning, I never stopped. Then myasthenia gravis (MG) entered my life and work became impossible, so I retired.
After that, many of the activities that once filled my days vanished. My world shrank. But even though it’s less visible, my life is still very full.
Most people mean well when they ask me what I do all day. It’s a reasonable question. From the outside, my life no longer resembles what it once was. After more than three decades in the classroom, my days now appear quiet, even idle. But that appearance is misleading. Living with MG has become a full-time job that no one sees.
We tend to measure work in visible output. Teaching a class or building a house is a visible form of labor. Illness is not. When I left the profession I loved, it wasn’t a traditional retirement. It was a forced withdrawal, dictated by necessity. What replaced it wasn’t leisure, but a different kind of work, without a salary, co-workers, defined schedules, and all the other givens we find in our jobs.
The invisible labor of MG
The daily management of MG follows a structure familiar to anyone who has ever held a demanding job. Medications must be taken on a strict schedule, often multiple times a day, and their effects carefully monitored. Symptoms must be tracked. Is the weakness worse today? Are my eyes more fatigued? Is this a day to push forward or conserve energy? We who live with MG need to constantly calibrate how much activity is enough, and how much is too much.
Fatigue, in this context, is not the satisfying tiredness that follows a productive day. A proverb often attributed to Benjamin Franklin says, “Fatigue is the best pillow,” but there is nothing restful about MG fatigue, which punishes excess and fails to reward effort. Push too far, and the body won’t simply ask for rest — it’ll refuse to cooperate. The work, then, is about restraint as much as effort, a careful rationing of energy that must last the entire day.
There is also a cognitive dimension to this labor that is easy to overlook. Every decision carries weight. Should I run this errand now or save my strength for later? Can I afford the energy cost of a social interaction? What will the recovery look like afterward? These calculations form a constant mental background, a kind of invisible arithmetic.
As Anne Lamott gently reminds us, “Almost everything will work again if you unplug it for a few minutes, including you.” With MG, however, the body does not reliably reset. Rest helps, but it doesn’t restore us in any predictable or complete way.
What others see, more often than not, is stillness. They see someone sitting, pausing, declining an invitation, or leaving early. What they do not see is the work required to stand up, walk across a room, or recover from what once would have been effortless. They don’t see the planning that precedes even small tasks, or the cost of doing them. It is here that misunderstanding can take root.
This invisibility can be its own burden. We live in a culture that prizes productivity and equates busyness with worth. To fall outside that framework is to risk being misunderstood, or worse, dismissed. Yet the reality is that managing a chronic illness like MG demands many of the same skills we admire in more visible professions. You can’t manage MG without discipline, adaptability, patience, and judgment. It is, in its own way, a form of expertise.
I sometimes think of my years in the classroom. Lesson plans, shifting schedules, and the constant need to read a room and adjust required enormous energy and provided constant stimulation and feedback. It took time to adjust to life without all that. Eventually, I realized there is a strange continuity between that life and this one. Back then, I managed the unpredictable energy of 30 students. Now, I manage the unpredictable signals of my own body. The scale has changed, but the vigilance remains.
Viktor Frankl, interpreting the words of Friedrich Nietzsche, noted that “he who has a why to live for can bear almost any how.” For those of us living with MG, the “how” is often complicated and rarely visible. But it is no less real. The work is in every measured step, every calculated decision, all we choose to do, and all we choose to leave undone.
So, when someone asks what I do all day, I understand the question, but the answer isn’t simple. I may not clock in anymore, and my job may not involve an office, a bell, or a paycheck. And yet, I assure you, I work all day.
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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