Being honest is important when someone asks me how I’m doing

An MG patient and columnist takes a cue from the innocence of children

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by Mark Harrington |

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If I’m not careful, myasthenia gravis (MG) will take control of areas of my life I don’t want it to. I’m not referring to the daily exercise regimens or the employment challenges, but rather my interactions with others.

In phone conversations with family and friends, I sometimes catch myself talking about my symptoms, treatments, or insurance company problems. Suddenly, I’ll realize that I sound like a man with nothing in his life but MG, and I don’t want to be that person. Sure, I want to share some of my daily struggles, but I’m much more than a series of struggles, and my conversations should reflect this.

Daily life with MG varies greatly. Some days I feel great, as if the disease were gone. Other days my energy level is so low that getting out of bed is a challenge. One day might start fine, then gradually go downhill. My speech might start to slur, or my breathing might become difficult. Anxiety could return.

Some people find these rapid health swings disconcerting. I understand. MG is often an invisible disease, and even during periods of crisis, I may look the same.

Most people are caring. When they ask me how I’m doing, they’re genuinely interested. It’s easy to respond when I’m having a good day. On difficult days, I find myself not sharing how I really feel, and something about not being honest makes me uneasy.

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Choosing to be truthful

As I reflected on this, I found myself turning once again to the young people in my life. The young possess wisdom and insight we adults lose as we age. I agree with the biblical passage that states, “But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.” Experience has taught me that the more children that are in my life, the richer life will be.

Bible teacher Joyce Meyer writes that, “Little children aren’t complicated. They don’t live their life trying to impress anyone. And they can teach us a lot about how to enjoy life.”

I spend summers in New England, safe from the inferno that is Texas from May to October. While there, I spend lots of time with my youngest nieces and nephews, who range in age from 3 to 10.

During a recent summer, one of my nieces had become adept at freeing herself from any room, like a reincarnated Houdini. Unfortunately, it put her safety at risk and caused the adults anxiety.

One day while she was under my care, I put her down for her afternoon nap. But when I checked on her, she was missing. We were at my sister’s home, which is very large. Finding the tiny Houdini was difficult. I began to fear that I would need to call her mother with the bad news that our little bird had successfully flown the coop.

Then I found her in the pantry. Grateful and miffed, I asked what she was doing. Without missing a beat, and with a full and sweet smile, she said, “Looking for candy.” She made no attempt to hide her mischief.

Unknowingly, she had provided me a way to respond when I’m asked how I’m doing. In response to questions about our health, we can choose to be truthful and yet sensitive to others. It might be best not to respond with the candor of a 4-year-old, but being truthful is possible, and I believe essential.

Openness and candor can assist our minds and bodies as they struggle with the challenges inherent in diseases. Psychology Today notes that, “Openness is correlated with higher measures of well-being, including overall happiness. People high in this trait feel more positive and have warm and loving relationships with the people around them.”

I’m trying to remove complications from my life, and I want to replace them with childlike joy.

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.


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