Learning how to manage fear in life with myasthenia gravis

I like to think of myself as a rational person. I try to meet each new challenge with calm and logic. But with myasthenia gravis (MG), fear has a way of quietly slipping in.

For me, that fear has taken up residence at the dinner table. The MG crisis I recently had has since passed, but what remains is subtler and more insidious: lingering episodes of choking while eating. These episodes don’t announce themselves or follow a schedule. They simply arrive, and everything else disappears.

A few days ago, I met a friend for lunch. It should’ve been a pleasant opportunity for me to reclaim some sense of normalcy. Instead, our meal was ruined by a sudden choking episode. I cannot understate the terror that choking causes. To comprehend it, you have to experience struggling to breathe while things slip out of control and doom permeates.

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In that situation, I hurried from the dining room. The meal was over for me before it had really begun. When I returned, the food sat untouched, and the conversation had shifted. More than anything, it wasn’t embarrassment or disappointment that lingered; it was fear and exhaustion.

An event like that begins to rewrite the script in my mind. Every bite becomes a question, every swallow a calculation. What had once been automatic now carries the quiet possibility of danger. And left unattended, fear does what it always does: It grows.

The fear isn’t unfounded. For example, the Mayo Clinic explains that, with MG, “You may choke easily, making it difficult to eat, drink, or take pills. At times, when you swallow liquid, it may come out of your nose.” That is the world many of us navigate, where a basic human act like eating can suddenly become complicated or fatal. So the question becomes not how to eliminate fear, but how to manage it.

For me, that begins with knowledge and a plan.

Managing fear at the dinner table

Knowledge, in this case, means understanding what is happening physiologically — how MG affects the muscles involved in swallowing, why fatigue plays such a critical role, and what patterns might be emerging. It means learning from both medical professionals and others who live with this condition every day.

“Symptoms of myasthenia gravis may come and go,” the Mayo Clinic adds. “They usually get better when the weak muscle is rested but get worse again when the muscle is used. ” This suggests that timing, pacing, and energy management are essential.

I know that breaking up meals into smaller portions eaten throughout the day is often recommended. Smaller bites plus less strain equals more control. I need to examine that more closely. What foods are safest? What textures are easiest to manage? What pace should I adopt? These are not abstract questions. They are daily decisions.

There is also a psychological dimension to all of this. As the Anxiety & Depression Association of America notes, “Not only does chronic illness/disease increase the chances of having a mental illness, but people experiencing depression are more likely to have other medical conditions.” That has certainly been true for me. The fear isn’t just about choking; it’s the anticipation of choking. And anticipation can be just as powerful as the event itself.

In “Dune,” Frank Herbert offers a reflection on fear:

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”

It’s a striking passage. It doesn’t deny fear; it acknowledges its power and insists we move through it anyway.

Scripture offers a similar reassurance: “Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.” Whether one approaches that verse from a place of faith or simply as a reflection on human resilience, its message is clear: Fear does not have the final word.

That, I think, is where I find myself now. I am not afraid of food. But I am, at times, afraid of what might happen while eating. And that distinction matters because it suggests that the goal is not avoidance, but adaptation.

So I am asking for help. If you are living with MG, or caring for someone who is, and have experienced similar challenges, I would be grateful for your insight. What strategies have helped you? What foods or routines have made eating safer or more manageable? Are there resources, therapies, or techniques you recommend?

I know I am not alone in this. One of the great strengths of the Bionews community is the willingness to share hard-earned knowledge for the benefit of others. Fear thrives in isolation but weakens in the presence of understanding. I will keep learning and planning. Maybe we can sit at the same table. Maybe, as we eat, we can share. Maybe we can help each other continue to get up.

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.