Navigating uncertainty in life with myasthenia gravis
Despite my affinity for predictability, I'm learning to keep moving forward
Every year, I reflect on my diagnosis of myasthenia gravis (MG) on June 24, 2020. As I look back on the past year, I see that MG forced me to reconsider my understanding of certainty.
I like predictability. Schedules and timetables are comforting, providing an order that appeals to me. I’m certain this is one reason why I’m attracted to teaching: A teacher knows how the weeks and months will unfold.
One notable figure in American history understood my affinity for certainty. In a November 1789 letter to French scientist Jean-Baptiste Le Roy, Benjamin Franklin famously wrote, “Our new Constitution is now established, everything seems to promise it will be durable; but, in this world, nothing is certain except death and taxes.” This phrase later became a common expression of the uncertainty in life.
My desire to understand how an affinity for predictability affects those with MG led me to a 2009 Psychology Today article called “A Hunger for Certainty.” Author David Rock, PhD, writes:
“A sense of uncertainty about the future generates a strong threat or ‘alert’ response in your limbic system. Your brain detects something is wrong, and your ability to focus on other issues diminishes. Your brain doesn’t like uncertainty — it’s like a type of pain, something to be avoided. Certainty on the other hand feels rewarding, and we tend to steer toward it, even when it might be better for us to remain uncertain.”
Moving forward anyway
My MG diagnosis removed some of my life’s certainties, such as my ability to return to work. In addition, I now had to plan my travels around an inflexible infusion schedule and navigate the ebb and flow of my fluctuating energy levels. With MG, it’s nearly impossible to predict the day’s outcome, precluding certainty.
When I was diagnosed, my neurologist used the term “snowflake” to describe MG. When Dr. P gave the disease this moniker, I was concerned about treatment and prognosis. It didn’t seem possible that any treatments would be efficacious across such a broad spectrum of unique patients. Luckily, researchers have devised therapies that are effective in many presentations of MG. While this is great, it does add an element of uncertainty to the treatment process. With each medication, I wonder if it will work.
I’ve always found inspiration in what Jack Welch, former CEO of General Electric, said about the necessity for change: “Change before you have to.” Life with a rare disease is full of difficult decisions, and ignoring them brings unwanted consequences. As I reflect on the past four years, I recognize that some of my choices weren’t the best. Now, I constantly work to improve my decision-making process. As Welch said, “I’ve learned that mistakes can often be as good a teacher as success.”
This month, which also happens to be Myasthenia Gravis Awareness Month, I learned that MG has a teal-colored ribbon. (I’ve always wanted our disease to have a ribbon.) Teal, a mixture of blue and green, symbolizes the snowflake nature of MG. I suggest, with humor, that a yellow stripe be added to the ribbon. Yellow lights tell motorists to slow down and proceed with caution. It could indicate to those with our condition that on their journey they’ll encounter uncertainties, which can be handled with slow, thoughtful analysis.
Slow down, but keep moving forward.
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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Bruce D Lacoe
I am an 18 year survivor with myasthenia gravis.
I can reaffirm all of the points included in Mark Harringtons article. It is a journey of trial and error, success and failure separate from everything else we are all required to deal with in our daily lives. I have recently started Ultomiris infusion, and this is only the latest of a dozen different medical treatments I have been fortunate enough to try to control my symptoms. Most people do not realize there is no cure for myasthenia gravis. Only symptom control. I am grateful for what has been available to me as well as patient, knowledgeable neurologists that have kept me moving and living my life ad best I am able. My advice to the recently diagnosed is; NEVER GIVE UP!