The way I respond to remarks about my MG is always changing

Sometimes people tell me I should be grateful.

I have myasthenia gravis (MG), and when I talk about my chronic illness, some will respond: “But you’re fine; you’re not that sick. There are people who can’t even walk.”

My instant feeling in those moments is anger. “How could you say that?” I want to say. How do some people not understand that I spend my days just trying to live normally, despite nights of pain and discomfort, always working to catch my breath, calculating every step I take?

What hurts the most is the denial of my reality, as if all the invisible effort I put into surviving is erased by one comment. As if, because I am standing, talking, smiling, I must be fine. As if my pain is only legitimate when it becomes visible to the point that someone notices and is shocked by it.

However, I’ve come to realize that my response to people who don’t understand what my life is like, who think they are being encouraging while actually minimizing my reality, has changed over time.

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Denying my reality

I used to either explode in anger or completely shut down. Some days, I would argue, explain, justify myself, give medical details, and try to educate. On other days, I would just smile, nod, and swallow my frustration. Both reactions left me drained. One made me feel aggressive, the other made me feel invisible.

I know these comments often come from a place of clumsiness, rather than cruelty. People want to motivate you, to make you feel “better,” to lighten your mood.

They don’t realize that comparing pain does not erase pain. There will always be someone who is doing worse, but that doesn’t make my life easier. Saying “others have it worse” does not heal my muscles, does not give me more air, and does not take away the fear of a collapse.

Over time, I have learned that I do not owe anyone the full story of my suffering. I’ve also learned that sometimes people do not actually want to understand. They want reassurance. They want the discomfort of illness to stay far from their own life. When they say, “You’re not that sick,” what they often mean is, “I don’t want to have to imagine that you could be.”

I am grateful, but I am also sick

When someone tells me now that I should be grateful because someone else has it worse, I say calmly: “I am grateful. And I am also sick. Both can be true at the same time.” Being able to say this changed everything for me. It establishes a boundary without creating a fight and reminds the other person that gratitude does not erase pain.

Sometimes I also say: “Yes, others suffer differently. That doesn’t make my suffering disappear.” And when I am too tired to explain, I simply change the subject. Protecting my energy is more important than correcting everyone.

Living with a chronic illness forces you into a strange emotional territory. On the one hand, you learn resilience. On the other hand, you constantly face misunderstandings. People see the version of you that survived the moment. They don’t see the version of you that struggled to get there.

The right reaction is not one fixed answer. It depends on the day, on my strength, on my emotional state. Some days I educate. Some days I defend. Some days I ignore. And all of these reactions are valid. What is not valid is to force myself to stay silent just to make others comfortable.

I no longer want to scream at ignorance, but I also will not soften my truth for others’ comfort. My disease does not become lighter because someone else is more disabled than I am. My struggle does not become smaller because it is invisible.

I have learned that people tend to react based on what they can handle emotionally, not on the actual reality they are being presented with. My job is not to make them understand. My job is to survive, to protect my peace, and to stay honest with myself. And maybe, little by little, with the right words, some of them will listen.

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.