Living with the constant alarm of chronic pain
Pain is like an ear-splitting noise that no one else can hear
I’m a hospice chaplain, and one day I was at the nurses’ station, completing my notes from a patient visit, when the fire alarm sounded. Startled, I turned to the nurse, who said the alarm had been going off all day due to a system glitch. The piercing, unrelenting sound made it difficult to concentrate. The facility staff went about their usual routine as if the alarm were normal. I, on the other hand, finished my work quickly and rushed out the door.
Giving my undivided attention to a task is crucial, but the distraction caused my focus to wane. When I cannot give 100%, I feel terrible. I pride myself on quality work, and anything less unsettles me.
The high-pitched sound that reverberated through the facility reminded me of chronic pain, which I’ve lived with for more than a decade. The constant presence of pain is part of my life. Most of the time, I can manage it enough to continue my daily activities. But not everyone with chronic pain can do this.
A noise we cannot silence
My youngest son, Caeleb, is a college sophomore who lives with severe hemophilia and has had an inhibitor since he was 11 months old. His arduous journey has involved complications that few in the bleeding disorders community experience, including frequent bleeds, joint damage, and treatment challenges.
Over the years, bleeding into his right knee and ankle, called hemarthrosis, has caused irreversible joint damage. Every bleed degrades the synovium and cartilage around the bones. For Caeleb, this means the bones in his joints rub together, causing constant pain. He also has a limited range of motion and arthritis.
How does a young adult live with chronic pain?
Many people mistakenly believe that only older adults experience chronic pain. Before my journey with it began at age 46, I thought the same. But when Caeleb’s chronic pain became apparent at age 14, I began to understand that this issue does not discriminate by age.
While I have managed to keep moving through the worst of my pain, Caeleb, like so many others, cannot always do the same. There are mornings, even in the warmer months, when he hurts too much to get out of bed. The pain is like several ear-splitting alarms reverberating through his brain at maximum volume, without end. I am glad this is not a daily occurrence for him.
More often, Caeleb’s pain hums like a low-level alarm. He’s a living testament to resilience, with a will to keep moving that surpasses his hurt. This is the rhythm of his life, and he has learned to navigate the ever-changing beats.
My own journey has softened me, teaching me compassion in ways I never knew before. Talking with Caeleb and hearing his perspective as a young man living with pain continues to shape how I see others. It reminds me that others don’t see what we carry inside, even if it’s ever-present — an alarm that won’t stop. This understanding is the key to fostering empathy and compassion in our interactions with others.
The alarm may eventually get quieter, but its echo remains — a reminder to slow down, look closer, and recognize that many live with noise they cannot silence. Pain, chronic illness, and hemophilia are only a few examples of what often cannot be seen. We must acknowledge and seek to understand these invisible struggles as they shape the lives of many people around us.
May we all look at the world through a lens of compassion, especially when we don’t understand a person’s plight.
Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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