More than muscle weakness: My disease affects my self-esteem

I know none of the symptoms of myasthenia gravis (MG) directly affect how I look. There’s no sudden body change or visible sign that screams “something is wrong.” But anything that changes your daily routine inevitably shapes the way you eat, the way you dress, the way you move — and the way you see yourself.

This disease doesn’t only alter my body. It shapes how I think, how I perceive relationships, and how I build my dreams, passions, and hobbies. And all those things are exactly what make a person attractive — or not.

I often say I’m lucky to have met my boyfriend before my diagnosis. I honestly don’t know if I’d have the same confidence to open up to someone new today. There’s a quiet insecurity that settles in, one that whispers, “Would someone still find me lovable if they knew what living with MG really looks like?”

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The hardest moments are when I feel like he deserves better — better than my fatigue, better than my fear, better than my unpredictability. Every time I choose comfort over fashion, every time I go to bed instead of watching a movie with him, every time my anxiety about paralysis takes over, I feel guilty. It’s as if MG steals not only my strength, but also the version of me I want him to love.

Everything about MG can feel unromantic. It can feel like the opposite of desire — tiredness, routine, medication schedules, and canceled plans. And sometimes, it deeply affects my self-esteem.

What real attractiveness is

But here’s the truth I keep learning: Attraction isn’t always about what’s visible. I have many friends with chronic illnesses and invisible disabilities, and they are absolutely gorgeous. Their beauty shines through their strength, their grace, and their resilience. There’s something magnetic about people who live with hardship, but still smile, still create, still love.

Maybe that’s what real attractiveness is — being fully present, even when life isn’t easy.

Still, I understand the internal battle. It’s not about comparing myself to others or feeling jealous of healthy bodies. It’s about feeling disconnected from the person I used to be. The version of me who dressed up effortlessly, stayed out late, and never had to plan her energy like a budget.

Now, even getting ready can feel like an act of courage. Putting on lipstick feels like reclaiming control. Brushing my hair before going out feels like an act of resistance against fatigue. And I realize that, in a way, these small gestures are also forms of self-love. It’s not about looking good for others — it’s about telling myself that I’m still here, still me, still worthy.

Maybe that’s the first step in gaining my confidence back: recognizing that my appearance, my habits, and even my choices are all reflections of how I adapt to my new normal.

We often talk about love as something that happens between two people. But I think the most important love story begins with ourselves. MG tries to make me forget that, but I’m learning to take my femininity back, one small choice at a time. Every day, I have the power to choose how I want to exist — with or without makeup, in heels or in orthopedic shoes, resting or out in the world. Every day, I can choose to see myself as more than a patient, more than a diagnosis.

Because everything we live is a choice. I can let MG take away my femininity — or I can take it back.

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.