Living with myasthenia gravis keeps me stuck in survival mode

Lately, I’ve been repeating the same sentence to anyone who asks me why I don’t do something: “It’s not my priority.”

But the more I’ve said it, the more it echoes inside of me. Why am I living in survival mode? Why am I only taking care of “priorities”? Then my sister said something that made my brain freeze: “You know, people don’t only do priorities.”

I replied automatically, “Well, after the priorities, I’m drained.”

Drained, thanks to myasthenia gravis (MG): a chronic condition that forces me to constantly worry about whether I’ll be able to meet a deadline or complete a small, simple task that could help me progress in my career. I even worry about whether I’ll be able to walk home or not.

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This is frustrating. I remember how much I loved fashion before MG. I was always so excited to dress up, to express myself through clothes, colors, and accessories. Then an MG flare-up wiped all of that away. Now, I always wear something comfy and easy to put on and take off, not really caring how I look. Why? Because it’s not a priority.

When it comes to lunch, if my mom hasn’t cooked, I’ll just eat some cheese and bread. I used to love cooking, and I was good at it, too. But again, it’s no longer a priority.

I’m not proud of this. From the outside, it might look like a lack of motivation, but in reality, it’s a lack of physical energy. The weight of fatigue, muscle soreness, bone pain, and constant shortness of breath presses down on every choice I make.

Today, my best friend, MG, has a bitter face.

But I won’t fight it. Because even fighting it isn’t a priority.

Survival comes first

I’ve always tried to find balance in my relationship with MG. I’ve made peace with the idea that it’s a part of my life, and I do my best to adapt. But in the past few months, I’ve realized something deeper. It’s not just about adapting; it’s about recognizing how much this condition silently shapes the way I live, the way I decide, the way I give up.

I let go of so many joyful, creative, and expressive things simply because I use up all my energy on survival. I’ve built my life around minimizing the damage, avoiding the crash. But that also means I’ve minimized myself in many ways.

Some days, I want to change that. I want to wear a dress that’s hard to button. I want to stand in the kitchen and cook a real meal for myself, even if it leaves me tired. I want to pick up a hobby that serves no purpose other than to make me happy. But most days, MG wins. Not because it’s stronger, but because I have so little energy left after doing the things that matter most: work, health management, basic functioning.

I’m not writing this to complain. I’m writing this to say: If you’ve been doing only what’s necessary, I see you. If you’re living in survival mode, you’re not alone. And if you feel like your passions are gathering dust on the shelf, I feel that, too.

Maybe one day, “not a priority” won’t be my automatic answer. But until then, I’m giving myself grace.

And MG, as much as I want to fight you sometimes, I just can’t today. Because, well … it’s not a priority.

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.