Understanding the shame that came with my MG was half the battle

In the novel “Till We Have Faces,” C.S. Lewis wrote, “Don’t you think the things people are most ashamed of are the things they can’t help?” These words resonated with me as I began to understand how shame was a silent and unwelcome part of my myasthenia gravis (MG) journey.

I was diagnosed with MG in June 2020. Since then, my life has been a roller coaster of emotions. Some of those emotions, while difficult, were easily identifiable: anger, fear, hope.

But accompanying them was something I couldn’t identify. I felt like Pigpen from the famous “Peanuts” comic strip. But unlike Pigpen, I didn’t walk around with a cloud of dirt surrounding me. My cloud was more dangerous, and it was primarily composed of shame.

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When I was 6, I began to have epileptic seizures. Two years later, doctors at Boston Children’s Hospital diagnosed me with a brain tumor that required two surgeries: the first to remove the tumor and the right side of my skull; the second to replace the missing piece of skull.

While the prognosis was good, a decent quality of life was uncertain. Doctors told my parents that severe side effects were likely. Most frightening were the potential cognitive problems.

At that age, I didn’t grasp the seriousness of my situation. Instead, I worried about what really mattered to an 8-year-old: After surgery, I’d need to wear bandaging that made me look like a horror movie creature. Then, after the bandages were removed, I had to wear a helmet that made me resemble an alien from another galaxy. I hated both of these things.

While I survived both surgeries, hidden from view were two side effects that would greatly affect my life. No one had warned me about the shame and embarrassment I would experience.

My only comfort was that once the bandages and helmet were gone, I’d be like everyone else again. Not so! I was left with a huge scar on the right side of my head, limits to the sports I could play, and tonic-clonic seizures. At a time in my social development when belonging to a group was crucial, I felt isolated.

I developed a strategy to overcome these limitations: I refused to speak about my surgeries and illness. I pushed myself to do anything that adults thought was too risky. I never lost at any game. I had to have the highest grades in every subject. I grew my hair long so that it covered my scar.

In college, I proved I could drink with the best of them and successfully compete romantically. I became a big man on campus. I wasn’t like everyone else — I was better.

But after college, my struggles with shame continued. The need to outshine others intensified. I was hired by one of the most prestigious consulting firms in the world. I moved into my own place and traveled all over the world for business and pleasure. Obsessive exercise resulted in a pumped physique. I fell in love.

As I experienced personal and professional success, my shame dissipated. I decided that I would no longer hide my scar. I shaved my head, and to my surprise, others found my scar sexy. By the time I was 30, I had conquered my shame once and for all.

The rug is pulled — again

Then, in 2020, MG entered my world and upended my victory. My voice, when intelligible, sounded as if I were intoxicated. At times, ptosis, or droopy eyelid, required me to wear sunglasses inside the house. Venturing outdoors was impossible. Shaving grew so difficult that I grew a beard. Fatigue eliminated exercise, and I lost my toned physique. I’d consider my life and feel ashamed.

I developed new coping mechanisms. When my voice was unintelligible, I hid my frustration and jokingly told others I was speaking in cursive. If others expressed concern about MG, I’d say it was a mild, chronic condition. Around others, I was always upbeat. I told colleagues that I’d soon return to work. MG hadn’t made me unhealthy — only other MG patients were unhealthy. Then reality reared its ugly head.

To celebrate my birthday one year, friends hosted a dinner. On the scheduled day, I was speaking in cursive and overcome by fatigue. I had to cancel. After calling all of the invitees to let them know that dinner had been postponed, I went to bed, embarrassed and ashamed. In that moment, I knew I was no different from other people with MG. Denial of the shame wouldn’t make it go away.

Since then, I’ve realized that I could not have prevented my MG. And I now know that having it isn’t something to be ashamed about. As Leigh Bardugo wrote, “We can endure all kinds of pain. It’s shame that eats men whole.”

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.