The emotional toll of living with myasthenia gravis

Some days, living with myasthenia gravis (MG) feels less like managing a medical condition and more like trying to negotiate with a very moody landlord. That landlord owns the building you live in, the body you move in, and the energy you rely on, and they change the terms of your lease without warning. You wake up thinking you know the rules, only to discover the fine print has changed overnight. Ring any bells?

The emotional toll of that constant uncertainty is something no one prepares you for. It’s not just the fatigue or the muscle weakness or the swallowing issues. It’s the way MG sneaks into the quiet corners of your mind and sets up camp. It’s the overwhelm that hits when you realize you’ve spent more time managing your symptoms than managing your life. It’s the grief that arrives in waves; the slow and steady kind that erodes the shoreline of who you used to be. It’s the anger that flares when your body betrays you at the worst possible moment. It’s the depression that settles in when you’re too tired to fight it off.

It’s a constant cycle of losing, adjusting, rebuilding, and losing again. And the wild part? You can be doing everything “right” and still get knocked flat on your tush. MG is nothing if not committed to the bit.

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How purpose lightens the load

I’ve been thinking a lot about this emotional toll lately, especially as I’ve been rebuilding my work life around what my body can realistically handle. I have a schedule now that doesn’t include a color‑coded planner or a productivity system, but rather a rhythm stitched together from medication cycles, energy windows, and the unpredictable whims of my symptoms. Every day, I have to decide whether I’m well enough to climb the stairs to my home office, if it’s a “laptop on the couch” kind of day, or if the most I’m going to get done is get lost in a romantic comedy novel.

It’s a strange thing to grieve the version of yourself who could sit at a desk for eight hours or be on duty for 12-plus hours without thinking about it. It’s stranger still to realize that honoring your limits isn’t giving up but choosing to stay functional. Everything takes longer now and requires more intention. And I’m learning — very slowly, and with a fair amount of dark humor — to be OK with the fact that my body runs on its own timeline and doesn’t give a hoot about my to‑do list.

But here’s the part I didn’t expect, the part that keeps me from sinking under the emotional weight of all this: Purpose lightens the load. Not in a “toxic positivity” way, but in a very real, grounded way that feels like oxygen on the days when everything else feels heavy.

For me, that purpose shows up in the moments when I get to turn my lived experience into something useful. When I write about MG in a way that helps someone feel less alone. When I answer a forum question and someone says, “I thought I was the only one.” When I get to be the squeaky wheel in rooms that weren’t built for people like us and shake up the status quo.

This week, I’m speaking at a virtual listening session about living with MG as a veteran, and the role burn pit exposure may have played in triggering my disease. It’s the kind of thing that takes energy I don’t always have, but it’s worth riding the struggle bus to make sure I’m there. It reminds me that my voice matters and that advocacy, while exhausting, can also be deeply fulfilling. It reminds me that telling the truth about this disease can shift something for the people who come after me.

And that’s the thing about the emotional toll of MG: It’s real, heavy, and relentless — but it’s not the whole story. There are moments of clarity, connection, and stubborn hope when you realize your ability to make meaning hasn’t changed.

Living with MG often means carrying grief and purpose at the same time. It means holding anger in one hand and resilience in the other. It means acknowledging the emotional weight without letting it crush the parts of you that still want to build something.

If you’re in a season where the emotional toll feels heavier than usual, the grief loops are tighter, the overwhelm louder, and the anger roaring, I hope you know that you’re not alone. Whether you feel it today or not, the fact that you are here and choosing to participate in this crazy thing called life is its own kind of strength.

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.