How I handle uncomfortable questions about my MG diagnosis
Despite good intentions, some seem to blame me for my illness
Throughout history, we can find examples of people getting things wrong. In 1903, a banker said, “The horse is here to stay, but the automobile is only a novelty — a fad.” Science once accepted that cigarettes helped relieve stress and that germs were an idiotic concept. What we know to be true frequently turns out to be false.
It’s important during the holiday season for those of us who live with chronic illness to keep in mind our ability to get things wrong. It can be tempting to believe that, unlike our ancestors, we aren’t gullible. But this kind of self-assurance can have a negative impact on the rare disease community.
Here’s why: In 2020, I was diagnosed with myasthenia gravis (MG). Since then, I’ve researched which factors may improve or worsen the illness. No matter how crazy an idea may seem, I’d like to know about it. That said, I take a reasonable and balanced approach to my inquiries. As much as I want to find the Holy Grail that will cure MG, I don’t want to be someone who believes horses are more dependable than automobiles.
During my research, I’ve come across some dubious claims. At least one person has shared that they’d developed a diet that cured their MG. Others have claimed that acupuncture, cupping, or red-light therapy cured them of illness. It’s easy for me to brush away much of this advice, as it seems so absurdly false.
I’ve been asked if it’s possible that my diet caused me to develop MG. One well-intentioned person lectured me on the evils of sugar, wanting to know my sugar intake prior to diagnosis.
Or, could MG be linked to my exercise routine?
Underneath these questions is the implication that I either did something that brought on MG, or didn’t do something that would’ve prevented it.
For those with genetic diseases, we don’t question whether certain lifestyle choices caused their illness. Humans have no control over their genetic makeup, so it’s almost as if these patients are absolved of responsibility. In contrast, people who developed an illness later in life, as I did, are often seen as culpable, with some believing we didn’t eat the proper food or perform the right actions.
My tactics for responding to uncomfortable questions
Between now and Jan. 1, there will be more occasions than usual to gather with family, friends, and colleagues. We might be asked some uncomfortable questions like the ones I mentioned above. I’ve developed two tactics that help me navigate these situations. Feel free to use them.
First, I recognize that most of my questioners are motivated by love and concern. I look directly into their eyes and say to myself, “[This person] is a loving and kind person.” I take a few deep breaths and turn the focus of conversation to them. People like to talk about themselves. Give them the opportunity and you’ll make a friend for life. They’ll tell people what a good listener you are — so interested in others!
Second, I keep alert for good ideas. There is much I can learn about MG. When something catches my interest, I take out my iPhone and jot down some notes. I end up with new information to research and the person with whom I’m speaking usually feels good that I valued their input. Then I gently end the conversation.
For example, I’ll look at my watch and say with surprise, “Oh, look! It’s almost such-and-such time. My ride will be here in a minute and if I’m not ready to go, it will turn back into a pumpkin. Good night. You have a wonderful holiday.”
Without waiting for a response, I make my getaway. I can see from the look on their faces that they aren’t sure what just happened. They may walk away wondering where they can get one of those magical pumpkins. After all, there’s a YouTube video about magical pumpkins, so there has to be some truth to them.
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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