Building confidence, not in spite of myasthenia gravis, but by living with it

In recognition of Myasthenia Gravis Awareness Month in June, the MG Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by MG, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MGAwarenessMonth, or read the full series.

Before myasthenia gravis (MG), I could just jump in my car and drive for hours. I lived in the moment without thinking about naps, medications, or limits. I could have a drink without worrying about how it might interact with MG treatment. I didn’t have to explain my routines, my pills, or why I might cancel plans. All of that changed after my diagnosis.

Living with MG has been a true game-changer. I’m not angry at it. I call it my forever best friend because it’s always with me, but it challenges me every single day. MG forced me to slow down and reevaluate my life. I was responsible before, but MG made me more organized, more intentional, and more strategic.

Nathan wears a rare disease awareness shirt featuring a ribbon with zebra stripes; the zebra is the official mascot for rare disease.

Not every day is a rainbow. There are limits, frustrations, and moments where I feel like I’m hitting a glass ceiling. Still, I’ve built confidence on the back of MG. I knew I needed to understand what this diagnosis meant for me and how I would move forward. I knew I wouldn’t have all the answers, but I could learn enough to advocate for myself.

I realized I couldn’t sit still and let life happen around me; I had to participate differently.

Having a chronic illness doesn’t mean your life is over. It means letting go of the life you had and growing into the life you have now. You may mourn your old self, and that’s OK. But along the way, you build a support system, establish routines, learn your body, research your doctors, and become your own best advocate. You learn to make yourself a priority.

Recently, I found out my thymoma is growing back. In that moment, I knew I needed to be intentional about my care and how I showed up for myself. It hasn’t been a walk in the park. I’ve had to shape-shift through every stage of this journey. But in doing so, I’ve discovered a new strength within myself. Through my story and advocacy, I hope to bring awareness, resilience, and the reminder that you are heard.

Thanks for reading. If you’re navigating MG or any chronic illness, remember this: You’re stronger than the shifts, braver than the setbacks, and fully capable of building a life that fits you now. Keep listening to yourself. Keep adjusting. Keep rising.

This is my motto: “You will build a life again, not in spite of MG, but alongside it.”