Life with chronic illness prompted me to discover who I really am

Living with myasthenia gravis (MG) has changed important parts of my life. It has taken things from me that I thought were permanent, such as my physical strength. My previous ability to plan my days with confidence no longer exists. Most difficult of all, MG has made me distrust our healthcare system here in the U.S.

However, a new me has arisen phoenixlike from the ashes of my pre-MG life. Upon reflection, I see the new me as a better man. If I may borrow from “The Velveteen Rabbit,” I’ve become more real.

Before my diagnosis, I moved through the world with certainty. I could rely on my body. I had plans. I knew what I was capable of. That began to unravel when MG began tightening its grip.

At first, it was subtle: double vision, difficulty swallowing, fatigue that sleep didn’t cure. Then it became frightening. I lost the ability to hold up my head, speak clearly, swallow food, and breathe without effort. I had to be hospitalized. My career evaporated. My income took a nosedive. The pension that once promised a comfortable retirement morphed into barely enough to survive. Everything I once took for granted collapsed.

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In those early days, I felt like I was disappearing. I lost more and more physical abilities. As these losses mounted, my identity slipped through my fingers. I mourned the old me who didn’t need to think about every step, every breath, every phone call to the insurance company. I was becoming someone else, but I didn’t know who that man was.

In “The Velveteen Rabbit,” the Skin Horse and the Rabbit discuss how we become real. I interpret real in this book to mean authentic, loving, and loved. The Skin Horse tells the Rabbit about the process of becoming real. “It takes a long time. That’s why it doesn’t happen often to people who break easily, or who have sharp edges, or who have to be carefully kept.”

Chronic illness requires endurance, not just of the body, but also of the soul. It forces you to confront what remains when so much has been taken away. When living with chronic illness, one cannot have sharp edges. Hospital beds will smooth them. If you break easily, you lose before you begin to fight. MG won’t let you be carefully kept.

Gradually, in the infusion clinics, after successful battles with insurance companies and in a whole host of financial and personal struggles, I began to feel a different kind of strength. Not the strength of muscles, but the strength of spirit. I sensed a power that allows me to bend without breaking. I developed the intangible something that helped me become more real.

I remember cooking dinner one evening. I wasn’t thinking about MG or illness. A thought flashed through my mind: I realized that for 30 years I had worked in a profession where most days were challenging, fun, and rewarding. What a blessing! MG can’t touch that. Those memories are mine forever. Now it’s time to make new memories of equal value.

“You can’t be ugly, except to people who don’t understand,” the Skin Horse said. That line resonates deeply with me. I’ve learned that many people won’t understand, and that’s OK. I’ve stopped chasing their approval. I’ve found a quieter, truer community. Within its embrace are family who love me even when I’m difficult, others with chronic illness who “get it,” friends who show up, and strangers who offer support online. Each play a part in my journey to become real.

After five years of grappling with this disease, I am different. My body is scarred and unpredictable. My life looks nothing like I had planned. But I am more myself than I’ve ever been. I cherish small things such as a day when I’m filled with energy or able to eat and speak without difficulty. I’ve become more empathetic. I no longer hide my fragility. I wear it, because it’s also where my strength lives.

This isn’t the version of me I had imagined. But it is real. And that realness — the hard-won kind — can’t be taken away. It isn’t pretty, at least not in the traditional sense. But it’s beautiful in the way that only those who’ve suffered and survived can understand.

Chronic illness took so much. But it also revealed who I really am. And “once you are real, you can’t be ugly.” Not to the people who truly see.

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.