Years Later, I’m Learning How MG Affected My Family

I was diagnosed with myasthenia gravis (MG) at the self-centered age of 19. Ah, 19, that beautiful age when we think no one else in the world has worse problems than we do.

While I wasn’t a total monster at that age, I was handling my problems in unnecessarily dramatic ways. I should take full responsibility for my behavior, but I blame the MTV reality shows I watched every day.

Nevertheless, when I was diagnosed with MG, I reacted in a way that was totally appropriate for my age: I declared that my life was over and nothing could be done to save me. For the first few months, I had a pretty bad attitude. I followed my doctor’s orders but was consumed with self-pity. How could this happen to me? I didn’t deserve this!

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While I was stuck in this never-ending loop of fear, self-pity, and anger, I never once thought of how MG was affecting my family. For too long, my thoughts were focused only on how MG was affecting my life. I didn’t realize I wasn’t the only one whose life had changed forever.

It’s too easy to become wrapped up in our own problems. It happens to the best of us. But now that many years have passed since my diagnosis, I’ve begun to think about how MG affected my mom and my sister.

During the worst parts of my MG journey, my family put on some really convincing façades. They were worried, yes, but they never showed any emotion that could have negatively affected me. After recently speaking with them about some of the more frightening periods of my disease, I discovered what they had hidden to protect me from more stress.

They told me about how they couldn’t sleep when I was in the ICU. My mother described her fear of getting a phone call in the middle of the night from the hospital with bad news. My sister described the helplessness she felt when she saw me gasping for breath before being intubated. It was incredibly tough for me to hear, but absolutely necessary for me to understand.

After having this tearful conversation with them, I felt both thankful and guilty. Maybe if I had just taken better care of myself, I wouldn’t have ended up in the ICU. If I didn’t end up in the ICU, then they never would have experienced those horrible emotions.

But I knew I had done everything I could to handle my MG, and some things were just out of my control. I knew my family didn’t blame me. And I knew I would have reacted the same as they did if the positions had been reversed.

Now that I know what they went through, I am more grateful than ever for them. They have taught me to always take a moment and ask those around me if they are OK, no matter how I am feeling. MG isn’t just my burden to bear, it’s a load my family is more than willing to help with.

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