Living with Pain: My Fiercest Enemy, My Unexpected Friend
Living with pain is a complicated existence that involves making peace with our bodies.
In recognition of Pain Awareness Month -#ThisIsPain and as a way to prepare myself for the postoperative pain of my upcoming orthopedic surgery, I decided to write about my relationship with pain and how I deal with it. Our bodies gift us with the mixed blessing of pain, which is part of daily life for most people living with life-altering chronic illness, LACI. I don’t welcome pain, yet it is my body’s way of protecting me. It lets me know when further or different interventions are necessary. Nonetheless, our culture often encourages us to ignore pain and tough it out or take a pill to make it go away so we can get on with life. Pain can be tricky to evaluate when living with LACI because it can indicate something new that must be addressed, or it can be a result of something that has already happened in our bodies that might need to be eased, but is not an alarm. Because I am so used to living with a certain level of pain all the time, I focus more on changes in my pain level rather than whether or not I have pain. This way, I can give my doctors better information and discuss any new or worsening pain with them. I ask if the pain indicates anything emergent that has to be addressed to prevent further damage. If the pain isn’t a warning flare, it allows me to observe the physical sensations of the pain without the added layer of fear or anxiety, which can make pain worse.
The problem with accurately assessing and reporting pain is that it is invisible if there are no observable signs of pain generators. For many, it isn’t until some empirical signs of damage are evident that their complaints of pain are taken seriously and more targeted tests are run. By then, it’s often too late to fix what has already happened. Patients whose body knowledge has been ignored or discounted doubt their bodies’ signals and their minds’ assessment of what is real. I was told for years that the pain and swelling in my fingers were nothing to worry about and that it was probably overuse. This was clearly not the case, as neither my job nor my hobbies involved the intense use of my hands. I found myself secretly seeking permission from doctors and validation from test results to feel the pain I was feeling. It wasn’t until my fingers started to twist and my joints and spine began to degenerate that a rheumatologist took me seriously and investigated further. So when the diagnosis of psoriatic arthritis finally came, I felt a strange combination of fear and relief. I was worried about the progression of the disease and how it would impact my life, but at least then I knew I was not imagining the missteps of my body. Don’t get me wrong, I’m not happy about living with pain, and there are many times that I curse the pain and want to wish it away. However, I no longer see pain as only my enemy but also as a friend who drops in unexpectedly and sometimes overstays her welcome. Pain made me push for a diagnosis and continues to guide my treatment so I can be as healthy as possible.
Living with pain is a complicated existence that involves making peace with our bodies. Pain gives us more than the usual reasons to want to separate from our bodies and disregard their sensations or hyperfocus on every ache and pain in an attempt to control what’s happening. Both scenarios divide our bodies from our whole selves. When this happens, it’s easy to spiral into feelings of shame because we need help physically, loneliness because we are isolated, or self-pity because it’s hard for others to truly understand what it’s like to live with chronic pain or illness. For those of us living with pain, our bodies are often our greatest limitation and yet our only gateway to experiencing the most profound parts of the human experience: a lover’s touch, a child’s embrace, a painted sky, or a soul-stirring melody. We resent our fragility, yet this vulnerability makes moments of joy more precious. Reconciling with our bodies, then, is to discover that our physical form, with all its limitations and possibilities, is not just a vehicle for experiences but the home of our being. In this recognition lies a deep understanding that our pain and pleasure are not competitors in a race to define who we are, but aspects of our human complexity. They are the entry and exit portals to our whole selves.
When I have prolonged periods of intense pain or my body prevents me from doing the things I love, it’s easy to resent my body and use my mind only as a tool for survival. When the urgent situation is over, I have to remind my body not to get stuck in survival mode and invite my mind to transform my reaction to pain into a response that reconnects the parts of me. Meditation, prayer, art, music, and nature help me tolerate pain better, so it doesn’t overwhelm me. Find what works for you. These things don’t cure pain, but they allow us to live well even if we’re not.
This post contains excerpts from my upcoming book to be published by Legacy Book Press in 2026 - Living Well When You’re Not: Chronic Illness and the Art of Living in the In-Between.
