My breakup letter to myasthenia gravis: It’s time to move on

Dear myasthenia gravis (MG),

This note isn’t easy for me to write, but I think it’s time we break up. I could be cliché and say it’s not you, it’s me. But let’s be real, you’re the star of the show, my dear myasthenia gravis. So it is, unfortunately or fortunately, all about you.

I know, I know. You’re probably rolling your invisible eyes and muttering, “But I thought we were in this for life?” And sure, technically you’re not going anywhere, what with being incurable and all. But emotionally? Mentally? I’m done. Like, take-your-junk-and-get-out-I-don’t-ever-want-to-see-your-face-or-hear-your-name kind of done.

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You barged into my life like a wrecking ball with no warning, no invite, no damn courtesy. One day I was just tired. The next? I was flopping around like a puppet with a few strings cut, wondering why walking to the kitchen felt like hiking Everest with a backpack full of bricks.

Let’s talk about the gaslighting, too. You show up like a ghost, all quiet and sneaky, making me question if I’m just “out of shape” or “being dramatic.” And by the time I realize you’re the problem, I’m knee-deep in specialists and blood tests and playing medical bingo hoping someone says “acetylcholine receptor antibodies!”

You’ve been clingy, too. Like, really clingy. I try to rest, you flare. I try to do a little more, you throw a tantrum. Heaven forbid I attempt to have a good day, because you’ll just drag me into bed for 16 hours like some jealous ex who can’t stand to see me thriving.

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And the pills? The treatments? The “Here’s hoping this works” approach to managing you? That’s not love. That’s maintenance. And I’m tired of babysitting your unpredictability like it’s a full-time job. My body is not your playground, MG. I deserve better. I deserve me back.

Let’s not even start on the side effects. Actually, no. Let’s. Dry mouth, double vision, jelly legs, slurred speech — and that’s just a Tuesday. You’ve taken my voice, my energy, and occasionally my dignity (looking at you, bathroom mishaps and hygiene lapses). I never consented to any of that. You’re the worst roommate I never asked for.

But despite it all, and this part is hard to admit, I’ve learned things because of you, my dear myasthenia gravis.

I’ve learned to slow down, to listen to my body, and even to ask for help though I loathe doing it. You’ve made me fierce in ways I didn’t expect and more compassionate toward others who are fighting their own battles.

So while I can’t throw you out for good, I can set some boundaries. I’ll fight for rest, joy, and laughter. I’ll claim every small victory, whether it’s climbing stairs without needing a nap or brushing my hair without feeling like I just ran a marathon. You may have settled in and made yourself comfortable, but you don’t get to define me.

Sincerely and sassily,

Someone who’s choosing to live, not just survive, with myasthenia gravis

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.