I was recently asked if I choose to protect my loved ones from the reality of my myasthenia gravis (MG) by hiding certain parts of the disease so they won’t worry.

The question made me realize something I’d never clearly named before: I wear a constant mask. I cover my reality with makeup.

When I first started dating, even though my fiancé knew that I had health issues, I would swallow my air hunger crises in silence. I didn’t do this because I was ashamed or feared his reaction. I simply believed it was unnecessary to transfer that stress to him. I didn’t think it was his role to carry my illness along with me. I thought that loving someone meant sparing them from worry whenever possible.

Years earlier, when I was in college, I used to leave the classroom quietly and slowly whenever my body started to give up. I didn’t want to interrupt the lesson or panic my classmates. I learned very early how to disappear politely, how to manage my symptoms without drawing attention, how to suffer quietly.

This rule never really applied at home, though. It would’ve been impossible to pretend all day while I was away and then keep it up once I was home. My family knows my reality too well. But even with them, I sometimes hide my pain. Especially when I fear hearing sentences like, “It’s not that bad,” or “Try to push a little more.”

During holidays, for example, I often say that a particular activity doesn’t suit me or that I’d rather rest. I rarely say the truth out loud: that I’m exhausted because of MG and my body is asking for a pause. Softening the words feels safer than exposing the vulnerability behind them.

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A mask of freedom

I know it’s not my responsibility to manage other people’s emotions toward my illness. However, I also know that I’m not always emotionally strong enough to face feeling like a disappointment, a burden, or a source of stress. Sometimes protecting others is also a way of protecting myself.

So I make the choice, consciously or not, to deal with MG alone for as long as I can. I don’t know how long I’ll be able to do that, though. I’m not sure how long my body will allow me to stay independent. Maybe that uncertainty is what pushes me to keep control over what I reveal and what I keep silent.

Everything about living with MG is tricky. There are no clear rules, no universal guide, no right or wrong way to behave. Some days I share everything, speaking openly about my symptoms, fears, and limitations. Other days, I hide it all behind a calm voice and a composed smile. Both versions are me.

Wearing this mask doesn’t mean I’m lying. It means I’m choosing when I have the strength to explain and when I don’t. It means I’m allowing myself at least one form of freedom in a life shaped by an invisible disability.

Maybe one day I won’t need this mask anymore. Maybe I’ll feel strong enough to exist exactly as I am, without translation or adjustment. Until then, choosing silence sometimes helps me breathe. And, in a world where my body often decides for me, choosing how much I share remains one of the few spaces where I still feel free.

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.