Finding ways to reduce suffering, even while living with chronic pain
I've found that pain demands the same virtues as winter
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I haven’t written in a few weeks due to problems with my legs and knees. This has been the most pain I’ve endured since developing avascular necrosis in both hips. The bone destruction was caused by high doses of prednisone prescribed to treat my myasthenia gravis (MG). It led to months of undiagnosed pain, followed by painful surgeries and recuperations.
Sleep lately has been brief and unreliable. I’ve tried a couple of medications, but none did the job. Concentration became impossible, and even phone calls felt difficult. I spoke only to a few close friends and my sister. Pain narrows the world that way, shrinking it down to what is absolutely necessary for survival.
Today, I received a treatment that I hope will bring some relief. If it does not, I honestly don’t know how much longer I can endure this level of pain. And so I find myself searching. I’m not seeking answers; I don’t need inspiration. What I’m looking for are ways to manage pain well enough to keep living a recognizable life.
Learning how to live with pain
Pain has always been hard for me to understand — not just that it exists, but what it asks of us. I had two brain surgeries before I was 9 years old, and so, coupled with my life since my MG diagnosis, I’ve endured a decent amount of pain. It has tested my ability to maintain equanimity and attempted to erode my sense of identity.
Perhaps the greatest demon unleashed by suffering is one of life’s great untruths: the stubborn old idea that suffering must mean punishment. I’ve had to reject that belief again and again, as it never seems to completely go away. I keep reminding myself that pain comes from innumerable sources. Add time to this mixture, and you have suffering. There is no moral lesson embedded in it. Just pain.
This season of pain has unfolded, appropriately enough, in winter. Winter has always carried meaning for me. I am a New Englander by birth, a descendant of people shaped by cold, hard ground and harder work. My father told the story of how he left behind this world of hard labor and struggle.
While moving furniture on a sleety March day, it occurred to him that he didn’t want to labor that way for the rest of his life. He returned to college, obtained multiple degrees, and lived a life of the mind rather than one of physical labor. His life in academia gave him immeasurable pleasure. This didn’t happen because life was kind to him; it happened because he endured steadily. With patience and persistence, he saw new horizons, then set out to reach them.
That spirit matters to me now because pain demands the same virtues as winter. One of these is pacing and energy conservation. The Arthritis Foundation explains this approach clearly. Basically, rather than pushing until you collapse, break tasks down into smaller, more manageable units, and stop before pain spirals out of control.
It sounds simple, but it isn’t. Pacing requires surrendering the illusion that willpower alone can override biology. It also preserves something precious — the ability to show up tomorrow.
The second approach I’ve leaned into is mindfulness-based pain management. This is a way to reduce suffering layered on top of pain. Mindfulness does not tell us that pain is in our head. It helps the brain stop amplifying pain through fear, tension, and catastrophic thinking. Focused breathing and body scanning can soften pain’s grip on the nervous system. They don’t make winter disappear, but they help you stop fighting the season you’re in.
This time of year also holds spiritual meaning. In the Christian calendar, this period is known as Advent. It is a time of waiting, a time to reflect on how, even when light is scarce, we hold on to hope that it will return. During the darkest time of the year, we turn our focus toward bright days. Advent does not deny suffering; it insists that suffering is not the final word. We are called to resist allowing suffering a victory.
Perhaps that is the sense I am trying to make of these weeks. I’m trying to hold pain without turning it into punishment. I’m trying my best to practice patience without surrendering hope. Winter has always been part of my story. So has waiting.
Author and minister Jan Richardson’s words feel made for seasons like this: “Blessed are you/ who bear the light/ in unbearable times.”
For now, that blessing is enough.
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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