The existential fear of separating myself from MG

I complain a lot about living with an invisible disability, and most of the time, people answer with the same sentence: “I hope you heal one day.” As if healing were a realistic option.

This week, my boyfriend asked me a question that shook me much more than those wishes ever did. He said, “If they found a magic cure tomorrow and you healed, what would be the first thing you’d do?”

I froze.

The question scared me from the inside, and days later, I still haven’t fully digested it. How would my life look without myasthenia gravis (MG)? Who would I be without it?

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The truth is, I’ve never known life without MG. My earliest memories already include it. I remember my mom warning my teachers to watch me closely because I had “weird falls.” At the time, no one knew those falls were just my legs giving up from exhaustion. I never knew what it feels like to have a full battery of energy. I never knew what it is like to move without constantly calculating effort, weather, stairs, or distance. I never knew how it feels to breathe without fear when it rains, or after what seems like a minor effort.

People often tell me that I identify too much with my illness. And honestly, they’re right. MG has been with me for so long that I never separated it from who I am. It’s not something I “have,” it’s something I grew up with. It shaped my habits, fears, ambitions, and even my personality. It became a long-living companion, an old friend I never formally introduced to others but always carried with me.

So the question becomes heavier: Would I be a better person without MG?

Letting go

I’m not even sure what kind of person I would be without it. My entire life has been built around observing symptoms, adapting plans, slowing down, and finding alternative paths. If I didn’t have MG, maybe I would’ve finished my studies without interruption and become a physics researcher, as I once dreamed of doing. Maybe I would’ve stayed in labs, chasing stars and equations, instead of screens and strategies.

If I didn’t have MG, perhaps I’d still be obsessed with fashion. Maybe I would’ve launched a clothing brand during the e-commerce boom and spent my days designing, producing, and traveling. Or maybe none of that would have happened.

Maybe I would’ve gotten pregnant early and become a stay-at-home mom. Maybe I would’ve burned out in a completely different way. Maybe I would’ve made the exact same choices I made anyway, for different reasons. That’s the thing about alternative lives: They’re full of fantasies, not guarantees.

What unsettles me the most is realizing that I’m not ready to detach myself from MG. We live in a strange kind of harmony. I know its moods, limits, and warnings. I know how to negotiate with it. I don’t know who I am without it, and that unknown scares me more than the disease itself.

Living with a chronic illness for so long blurs the line between identity and condition. MG is not just something that disrupts my life; it also structures it. It pushes me to be creative, adaptable, sensitive to others, and deeply connected to my body. It forces me to listen when the world tells me to ignore something. It slows me down in a society that worships speed, and even if that hurts, it also teaches me awareness.

I think this realization will help me during my next flare-up or crisis. Instead of fighting the question “Why me?” or dreaming of a hypothetical cured version of myself, I want to make peace with who I am now. With this version, this body, this old friend that never left.

Letting go of constant “what ifs” is strangely comforting. I don’t need to imagine a life without MG to justify my existence. I am already whole, even if I am limited. Making peace with that feels like a form of healing in itself, even if the disease stays.

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.