Finding dignity in the chronic illness waiting game
Every patient learns that we are stronger than the empty spaces in our lives
I vividly remember sitting in my third-grade classroom near the end of a school year. Sunshine always filled the classroom at the end of the year, particularly by 1 p.m., making it perfect for an afternoon nap. Those days were unbearable because of the heat, but also because the final school day was approaching.
Days at the beach, games at the park, and trips to Maine and New Hampshire were so close it was painful. The clock on the wall became my enemy, and the second hand seemed frozen in place.
The same feelings returned every December. My childish understanding of the passage of time made the lead-up to Christmas worse than the coming of summer. Christmas Eve was filled with so much anticipation that it seemed like the world was conspiring against me to slow down time.
I hadn’t yet learned the wisdom of Roman poet Ovid’s wise observation about the passage of time: “Everything comes gradually and at its appointed hour.” Strangely enough, those waiting times were also filled with something precious that was invisible to the eyes of a third grader: hope.
Those childhood experiences of impatiently waiting foreshadowed the more complicated lessons of adulthood. Since myasthenia gravis (MG) entered my life, I find myself waiting in very different ways.
Some days I wait for medications to take effect. Other times, I wait for strength to return after a rest. Then there’s the difficult wait, which is when I’m anticipating a call from the doctor with lab results.
Like many people who live with rare diseases, I wait and hope for new treatments to emerge from research labs. I want to scream, “Hurry up! Find that cure! The clock is ticking!” What once felt like a childish burden has become the central discipline of resilience in adulthood.
Within the rare disease community, many of us know that waiting is not a passive act. It is endurance, a form of holding our ground. Whether we’re waiting for pain to pass or for a doctor’s appointment to start an hour past the scheduled time, we learn the value of persistence.
After losing his sight, English poet John Milton expressed a similar truth in his sonnet “When I Consider How My Light is Spent” (also known as “On His Blindness”): “They also serve who only stand and wait.” Waiting is not empty. It is service, endurance, and faith.
MG has taught me humility to accept that my body cannot always bend to my will. It has taught me empathy to understand the struggles of others who live with limitations. And it has taught me resilience, the ability to endure days, weeks, or even years when progress is slow. These lessons came during times when waiting was all I could do.
The Cleveland Clinic notes that “muscle weakness gets worse after physical activity and improves after rest.” That cycle of decline and recovery becomes its own classroom. We learn to pause, rest, and believe that renewal will come.
The strain of waiting can be intense and wear down our patience, replacing it with anxiety and restlessness. I’ve learned to cope through small disciplines such as keeping a journal, celebrating minor victories, leaning on friends and family, and turning to prayer. Humor helps, too. As anyone who has spent long hours in hospital waiting rooms knows, sometimes the only way to survive is to laugh at the absurdity of it all.
Waiting has a surprising dignity. Every pause isn’t wasted time but rather part of the larger rhythm of endurance. Every patient with MG or any other chronic illness learns that we are stronger than the empty spaces in our lives.
When I look back on those childhood moments of waiting for summer vacation or Christmas morning, I smile at the impatience that once made the seemingly slow passage of time unbearable. Now, with MG, the waiting is heavier and the stakes are much higher. But the lesson is the same: Time is not the enemy. Time is the field on which patience, hope, and resilience take root.
As a popular church refrain goes, “God grant me patience and give it to me NOW.”
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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