How myasthenia gravis rewrites my memories

Ever since I was a kid, I’ve had my own version of events. I remember climbing a mountain when it was only a small road, lifting heavy weights when I was only rearranging furniture. My memories were always heavier, longer, more intense than reality.

One day, my boyfriend and I were talking about our university days. I told him how huge the campus was and how we used to walk for hours. He looked at me calmly and said, “It wasn’t that big, and it didn’t take that long. We just had to go slow because of your myasthenia gravis.”

That moment hit me hard. I hated hearing it. Not because he was wrong, but because I never wanted to believe that my memories were different, that my version of reality was shaped by myasthenia gravis (MG). I had always thought my truth was the truth. But suddenly, I realized that maybe it wasn’t.

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This realization made me feel deprived of something fundamental: a sense of truth. MG didn’t only take my mobility; it took my way of seeing things, my way of remembering them. It changed not only how I experience moments, but also how I connect with others.

While people around me were focusing on fun, laughter, or the challenge of the moment, I was focused on pain, fatigue, and survival. My memories are colored by exhaustion, and that changes everything.

There’s also something we rarely talk about: pain. People often assume MG only causes muscle weakness, but I live with soreness, joint pain, and a deep, persistent ache that never fully goes away. Every step becomes a negotiation between my will and my body.

So yes, my memories are different. When others recall a “fun day,” my mind flashes to the moments when I couldn’t breathe properly, when every movement felt like a battle. They talk about joy; I remember the struggle. And when I try to explain that, I get labeled as moody or lazy. But I wasn’t lazy — I was suffocating, literally out of breath.

MG colors everything

Now that I’m aware of this, I’m trying to bridge the gap. I’m learning to listen to other people’s versions of the same memories without feeling invalidated. Sometimes I even borrow their vision of events just to experience them differently in my head. I try to tell myself, “Maybe it was fun, even if it didn’t feel like it at the time.”

Still, it hurts to realize that I can’t fully share memories the way others do. That my recollections are tinted with effort, fatigue, and pain. I find myself asking friends, “How was it for you?” not because I forgot, but because I want to compare their world with mine.

Often, I’m shocked by the contrast. They’ll describe joy, excitement, connection. I’ll remember struggle, shortness of breath, and the quiet panic of wondering how long my body would hold up.

It’s frustrating. I want to experience moments like everyone else, not filter them through the lens of illness. I want to come home from a day out and think, “That was amazing,” not collapse on my bed thinking, “That was unbearable.”

When people tell me, “We’re going out after this!” my first thought is disbelief. How can they still have energy left? How can they want to do more after what already feels like a marathon? For me, one day of socializing equals one night of collapse.

That’s the invisible weight of MG. It doesn’t only change what I can do; it changes how I remember what I’ve done. My mind stores fatigue where others store joy.

And the hardest part is realizing that this isn’t anyone’s fault. It’s not the fault of those who remember things differently. It’s not even my fault. It’s MG’s.

I just wish I could one day look back at a memory and say, “That was fun,” without adding “but I was so tired.” I wish I could remember moments for what they were, not for how much they cost me physically.

Maybe that day will come. Maybe one day I’ll tell my sister, “We had such a great time shopping,” instead of, “That was exhausting.” Maybe I’ll learn to see my memories through a lighter lens.

But for now, MG still colors everything — and sometimes, it even rewrites the story.

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.