Adapting to MG left me feeling disconnected from my body

I’m writing this week’s column using voice-to-text because I simply overworked my body to the point where it doesn’t want to respond anymore, which feels like the perfect place to start.

Living with myasthenia gravis (MG) is challenging, but it has also been empowering in ways I never expected. It has taught me resilience, adaptation, and how to push my limits. It has taught me to find another way when the way I wanted to do something was no longer available to me. But there is something nobody really talks about when we celebrate our ability to adapt: Sometimes, adaptation disconnects you from your own body.

Last week, during therapy, I had a realization that scared me. I don’t always feel like I belong to my body. I often look at it almost as if I were a doctor looking at a patient. I observe it, analyze its symptoms, calculate what it can and cannot do, and adjust everything around it. But I don’t necessarily feel it as a part of me. Somewhere along the way, my body became a dysfunctional tool I had to carry around, a tool I needed to maintain so I could keep working, run my business, and live the life I wanted.

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My adaptation skills became almost impressive. I adapted my hair, my clothes, my diet, my calendar, my relationships, my expectations, and eventually my entire environment. Everything around me became negotiable because my body wasn’t. And perhaps I became so good at adapting to it that I stopped asking what it needed.

I gave it massages, physiotherapy, food that I hoped would help, and rest when I absolutely had to. But often, those things weren’t really acts of love. They were maintenance. I was taking care of my body so it could continue functioning as a tool, and then I would push it again. And again. And again.

Because there was always something else I wanted to protect: my mental health, my business, my ambitions, my wishes, my independence, my idea of what my life should look like. I was protecting everything against my disease, but I wasn’t necessarily protecting my body from it. And that distinction hurts. I was so proud of myself for finding ways to live my life to the fullest with MG. I was proud of every limit I pushed, every adaptation I made, and every time I refused to let my illness define what I could do.

My body is me

Somewhere in that fight, though, I forgot something fundamental: My body isn’t the enemy, and it isn’t a machine I have to force into cooperation. It’s me.

Maybe my body image isn’t only affected because I choose comfortable clothes or adapt what I wear to what my body can tolerate. Maybe it’s also because I have become so disconnected from my body that I don’t always care about how it looks. Why would I care about the appearance of something I have spent years treating like a problem to solve?

This realization is painful because I thought I was protecting myself. Perhaps, in some ways, I was. But I was protecting my mind, my ambitions, and my independence while leaving my body behind.

I am reminded of rotten tomatoes sitting at the back of the fridge. You don’t really want them there, but you don’t want to throw them away either, so you keep them around and eventually convince yourself that you can still recycle them into a bolognese sauce. That’s more or less how I have been treating my body — something I have to keep because it’s mine, something I have to maintain because I need it, something I have to recycle into whatever version of life I still want to live.

But I don’t want to treat my body like that anymore. I want to give it a seat at the table. I want to ask it what it wants. I want to listen when it hurts instead of immediately trying to negotiate with it. I want it to be an active participant in my life, not an obstacle I constantly have to work around. Most importantly, I want my body to thrive — not simply survive, and not simply function well enough for me to keep going.

I want to learn how to love my body, protect it, respect it, and treat it with patience and tenderness. Almost the way I would treat my own baby.

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.