How a red-nosed reindeer helped with my negative body image

I’ve struggled with body image issues since childhood. I don’t remember a time when I didn’t believe there was something wrong with my body. When I was diagnosed with myasthenia gravis (MG), I viewed the disease as yet another manifestation of my body’s faulty design.

I recently discovered that the toll my negative body image has had on my mental health, and I began a healing process. Many who live with MG and other rare diseases share my struggles. I’d like to talk about my journey in hopes that others may benefit from it.

The U.S. is home to over 70 million people under the age of 17. According to the U.S. Centers for Disease Control and Prevention, 456,000 of them have active epilepsy. When I was 6, I joined this group. Two years later, I was diagnosed with a brain tumor and became one of the 5,000 children diagnosed with brain tumors each year. By age 7, I was part of two groups with chronic illnesses.

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My epilepsy continued after two surgeries to remove the tumor. Today I take medication to control the disease. It’s still there, though, and will be for the rest of my life.

Epilepsy and brain surgery bring limitations. I struggle with coordination issues. At times I can appear clumsy. Poor eye-hand coordination prevents me from participating in many sports. I must also avoid certain foods and am required to carry a special driver’s license. I’m set apart from most others, and it isn’t a good feeling.

Over time, I developed a negative self-image of my body. I saw others going about their lives without any of the restrictions I had to live with and concluded that my life would’ve been so much better without the defective body I’d been given.

Fast forward to June 2020, when I started having issues with my eyesight and speech. Memories resurfaced of that struggling 7-year-old boy. Testing delivered a diagnosis of MG. Of all the people in the U.S., only 36,000 have MG. It’s a very small club that I didn’t want to join.

The years since that diagnosis have been challenging. Lying on a gurney in the emergency room, hooked up to a machine for plasmapheresis, and having sleepless nights in uncomfortable hospital beds provided plenty of time for reflection. Once more, I concluded that my body was defective. How could it be otherwise?

After my MG diagnosis, I took 60 mg of prednisone every day. Then I began to experience excruciating pain. My doctor ordered X-rays, and after examining them, he ordered an MRI. He told me that avascular necrosis was a possibility, but that it was rare and highly unlikely. Nevertheless, prednisone can be a common cause of avascular necrosis, and that’s what the medical determination was. Two surgeries were required. To me, that was all additional evidence of a defective body.

‘We’re all misfits’

I went into an emotional tailspin. Why did all of these physical challenges come my way? How come I had to suffer so much pain? Why couldn’t I catch a break? It seemed that everyone else had strong, healthy bodies, so why didn’t I?

Then, a month ago, the children’s Christmas special “Rudolph the Red-Nosed Reindeer” came to mind. I remembered the Island of Misfit Toys, where the toys — a train with square wheels and a gun that shoots jelly — were unlike any others. Like those toys, our differences are part of what makes us unique.

It was as if I’d been hit by a ton of bricks. It dawned on me that I don’t have a defective body. In fact, I have an exceptionally wonderful one. My body learned to live successfully with epilepsy. It underwent two brain surgeries and two hip-replacement surgeries. After four hospitalizations from myasthenic crises and several rounds of intravenous immunoglobulin therapy and plasmapheresis, I’m still standing. My body refuses to quit. What a body!

If you struggle with negative self-image because of your disease, be patient with yourself. Odds are good that you’ve been blessed with an exceptional body. Treat it lovingly.

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.