Working through myasthenia gravis, one story at a time

It’s been 10 months since I started writing this column, and I can honestly say that it’s changed my life. My mindset, my emotional health, and even my relationship with myasthenia gravis (MG) have evolved. Writing hasn’t cured my condition, of course, but it’s helped me live with it. And I believe it could help you, too.

You don’t need to share your writing publicly like I do. But you can absolutely write — just for you.

Journaling vs. writing a column

Writing for yourself and writing with a public purpose are different. When I journal, I usually start with how I’m feeling that day. But when I write a column, I don’t do it as “Sarah, the MG patient.” I become the observer. It’s one of the rare moments when I mentally separate myself from MG and look at it from the outside. It’s as if MG is a friend sitting across the table, and I get to analyze, criticize, and even mock it — without letting it define me.

Column writing makes me more aware of MG’s consequences in my daily life. Because I’m writing for others, I have to look deeper into my experiences to find what might resonate with someone else. Ironically, it’s always easier to take care of others than ourselves — and this writing process reflects that.

In writing for others, I also find myself simplifying emotions I usually hide from. It forces me to articulate things I’ve felt for years but never fully admitted. For instance, I live every day making food and physical activity choices because of MG, but I’d never taken the time to think about why I choose what I choose until I wrote about it.

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Try it for yourself

I encourage you to try writing — not to become a full-time writer or even to publish anything, but just to “breathe out” your truth.

Start by setting a deadline for yourself, maybe once a week. Treat it as a promise between you and your thoughts. Use a notebook, your phone, a computer, or even voice notes — whatever feels easiest. Don’t worry about structure or grammar. Just let your feelings out.

Begin with a real situation. Maybe someone asked you an awkward question about your illness. Maybe you canceled an event. Maybe something made you smile despite the pain. Start there and let your mind wander.

Let yourself be brutally honest. Say the things you normally keep in that emotional box we all have, the one labeled “too sad” or “too real.” You don’t need to tie everything into a neat moral lesson at the end. Some experiences don’t come with a lesson. Some things just are.

My example

When I wrote a recent column about my sister completing an 18-km trail run, I felt deeply uncomfortable admitting that I was jealous. But I did it anyway. Writing that helped me face the truth instead of avoiding it. Since then, I’ve felt relief, clarity, and peace. That’s the magic of writing honestly: It turns pain into something you can process and understand.

There’s no guidebook for dealing with chronic illness or the complicated emotions it brings. But you don’t have to keep it all inside. Writing is free. It’s healing. It’s yours.

So I invite you not to fight MG nor to erase it, but to sit with it. Talk to it. Write it. Work on your MG, word by word.

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.