In this life with chronic illness, I’m no stranger to pain
Because it's difficult to explain, managing my pain has been a struggle
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I’ve been in pain so long that I can’t remember a time when I didn’t feel pain in one part of my body or another. Through surgeries, procedures, medication side effects, and the injuries of everyday life, pain has been a constant companion for me and continues to affect my life, which has included a double-lung transplant nine years ago due to cystic fibrosis.
For the average Joe, aches are temporary. For others, it’s a lifestyle. As I observe Pain Awareness Month, I’m reminded of the pain I’ve endured and continue to live with on a daily basis.
But pain is largely invisible, and it’s incredibly difficult to prove or explain to others. When I go for a routine checkup or an unplanned trip to the emergency department, the first question I get asked is: “Are you in pain?” My response is always “Yes.” But I struggle to answer the next question — “How would you rate your pain today?” — because it’s not easy to explain. Sometimes, I forget that I’m hurting because I’m so used to it. Can you relate?
The mental toll of pain
Because it is difficult to explain, I’ve struggled with managing my pain appropriately. Treating it has sometimes been based on what physicians think should or shouldn’t be painful, essentially putting my ability to manage my chronic illness at the mercy of somebody else.
Sometimes pain turns me into somebody that I’m not. The more I’m hurting, the less patience I have. Silly things become triggers. My senses are heightened. My overall tolerance for things I can’t control diminishes. It’s not pretty, and I’m not proud of those moments.
Pain also plays tricks on me. Sometimes it convinces me that what I’m currently experiencing will last forever. It will never get better, and I’ll suffer this much all the time.
In those moments, I must tame my thoughts to handle the pain more effectively. I have to keep my self-care reservoir full, otherwise all my positive progress can collapse. I keep hope alive for better days, even when it’s hard.
My husband is the greatest comfort when it comes to helping me manage my pain. He is incredibly empathetic, and on my hardest days, he waits on me hand and foot. He holds me to calm my nervous system when it’s fired up. Or he gives me space to do what I need to do for myself. I’m blessed to have his support and care.
In some ways, pain has also been my teacher. On those days when I’m hurting less, I get to celebrate and do everything I want to do and have been putting off. Learning a new pace rather than pushing through immense pain has been healing for my soul, not just my body.
Perhaps the greatest lesson is that although pain isn’t always visible, it is real and deserves validation. Empathy goes a long way because we can never know what others are going through. Believing people when they’re hurting is the first step toward providing them relief.
Note: Cystic Fibrosis 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 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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