I want to connect with the person who exists beyond my illness and fear

You should rest. You should sleep.

You should take care of yourself. Lose weight.

Don’t run. Don’t complain.

It’s all in your head. You can fight it.

These are comments I often hear from friends, family, and loved ones, and honestly, they are not helping. I know people mean well, but these statements feel suffocating. I realize now that what often starts as a good intention slowly destroys my self-confidence and becomes a constant reminder of my limitations.

Even more dangerously, it has started restricting my freedom, my choices, and my self-esteem.

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Holding on, holding back

Little by little, I became scared of suggesting activities that might be considered “risky,” because I was afraid nobody would want to come with me. And sadly, I often need someone with me for walks, or to do sports or anything that could trigger my myasthenia gravis (MG). I live with the fear that my legs might suddenly stop cooperating and that I won’t be able to make it back home alone.

And just like that, I realized something heartbreaking: I had become more limited by other people’s beliefs than by my own body. Somehow, I had convinced myself that I was almost paralyzed. I stopped trying, stopped questioning, stopped exploring my limits. And to me, the most dangerous part of living with a chronic illness is accepting it as a fixed destiny and allowing it to take control of every move you make.

Ironically, the same people who discourage me from activities sometimes have spontaneous moments where they suddenly push me to try. They support me, encourage me, and stay next to me even when I become breathless. Those moments make me cry from happiness. They reassure me that someone would be there if things went wrong.

I don’t think caregivers, family, and friends always realize how important that feeling is.

I understand how difficult and exhausting it must be to support someone with an unpredictable condition. I understand the frustration of watching someone you love push their limits while you fear the consequences.

Even after living with MG my whole life, I still don’t fully understand how it works myself. There is no guidebook for this disease. But I deeply believe that physical disability should never limit a person’s mental freedom.

I don’t want people making choices for me. And if, one day, I decide to push myself too far and it ends in a flare-up, that should still be my choice. I hope that even if it scares the people around me, they will resist the urge to stop me, and instead simply be there when I ask for help.

Maybe that sounds selfish. But as a person living with a disability, I think one of my deepest needs is to remain connected to who I truly am, beyond fear, beyond caution, beyond illness.

If you love me, help me stay true to myself.

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.