The vicious cycle of emotional strain and physical fatigue in MG
Uncertainty about symptoms creates a battle between hope and fear
Author and essayist Anne Lamott once wrote that “faith includes noticing the mess, the emptiness and discomfort, and letting it be there until some light returns.” In the five years since I was diagnosed with myasthenia gravis (MG), uncertainty has become a mess that calls for daily accommodation.
My days, once so regular and filled with predictability, now fluctuate from hour to hour, which is deeply unsettling. One morning, I might have manageable fatigue, and by the afternoon, seemingly simple steps become impossible. Two of the most potent enemies of my MG management, anxiety and worry, spring from this constant shifting between hope and fear.
Research has identified uncertainty as a central theme in the lives of MG patients. A 2015 study published in the Australasian Journal of Neuroscience observed that a “person with MG lives in a dynamic equilibrium in their world where the experiences of uncertainty, weakness and change are interlinked and always present in some shape or form. These experiences serve as a constant reminder that disease is present, even if a person is in remission.”
Emotional strain can make physical fatigue worse. And that fatigue affects my body’s ability to keep MG symptoms under control. Some days this vicious cycle is overwhelming. One of the first things my neurologist told me regarding the control of MG was the need to keep my stress levels as low as possible.
Because my symptoms can vary so rapidly, it’s difficult for me to trust my strength. That complicates any attempts I make at daily planning. Even if I’ve accepted an invitation to a social event and am looking forward to attending, my plans might fall through at the last moment. That causes frustration and anger and can compound my sense of isolation.
Not even those who love me the most and wish to support me in all possible ways understand my situation completely. I can relate to that, because I still regret how I sometimes responded to my dad, who had MG, when we’d plan something and he’d have to cancel at the last minute because of fatigue. At the time, I didn’t understand the severity of his symptoms.
Another example: When I set out to write this column, I was full of energy. Now I need to pause because I’m overcome with fatigue and can’t continue. It’s frustrating, because I slept plenty last night and napped yesterday afternoon. But what can I do? I can nap, hope I’ll wake refreshed, and come back to my column later.
***
I’m back. Sleep has refreshed me, and I can continue working. Today my body required a nap that wasn’t on my schedule. I just have to accept it. With MG, flexibility and acceptance are mandatory, and I never know what’ll be required of me. What will my body demand? What emotional challenges will come my way?
In the end, perhaps there is no victory over these challenges. Yes, MG will keep me tethered to uncertainty. Yet over time I’ve discovered that uncertainty need not mean desolation. It can sharpen gratitude for good days and deepen empathy for others. The tightrope is precarious. Beneath it, I’ve created a safety net made from support, spiritual insight, and wisdom.
At times, each step seems chaotic and frightening. Nevertheless, I continue to take those steps. I’ll leave you with words sometimes attributed to Japanese writer Haruki Murakami (although they may sound similar to Buddhist teachings): “Pain is inevitable; suffering is optional.” Whenever possible, I’ll opt out of suffering — even if it means accepting or embracing uncertainty.
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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Joerg Koehler
You are absolutely right. Unpredictability and uncertainty remain to be central themes for MG patients. Much as we try to accept the challenges and to cope with symptoms to achieve remission, we need to be prepared to live with uncertainty. I have made myself familiar with Zen Buddhism. The quote “Pain is inevitable; suffering is optional” pretty much fits into its basic principles. Your encouraging words might be a good motivation to revert to these principles.
Mary Donahue
Enjoyed this article. Feeling very weak and not being able to plan. You hit the nail on the head. I’ve had this condition for thirty years and can’t get use to it. I keep trying to take it slowly , but have trouble saying no.