by Corey Pierce , November PEN 2020
The bleeding disorder community has a pain problem, but it’s not the problem of too much pain. The real problem is a misunderstanding of pain and its importance for our survival. Many people with bleeding disorders have come to devalue pain, because pain is often characterized as a mysterious and uncontrollable inevitability. A fallacious concept like “spontaneous bleeding” has sowed a seed in many minds that the actions we engage in are divorced from how our bodies respond. If the pain we experience is seen as inevitable, or with clouded causes, then we’re left with no other option than to manage the best we can, or trick ourselves into thinking the pain doesn’t exist.
If given the option to never feel pain again, many people would take this deal in a heartbeat. But only later would they truly understand the horrors of living without pain. What if you took this deal? Well, rare medical conditions like congenital insensitivity to pain (CIP) suggest that you shouldn’t be too attached to your fingers and toes. And you’d better hope to never get an infection or have heart failure, because you’ll be without the best warning sign nature ever created: pain. In short, your life would end much sooner. Living without pain is not a blessing—it’s a tragic, brutal curse.
If you want to understand pain, know that it results from a set of factors. Pain doesn’t arrive out of nowhere, and it’s rarely attributable to a single cause. For example, the mild ankle pain I am experiencing as I write this is not only the result of countless past ankle bleeds, but also the result of (1) standing for two hours straight while making an elaborate meal yesterday; (2) wearing “cool” shoes with no heel drop yesterday; (3) running three days ago even though I was sore; (4) eating inflammatory foods yesterday; (5) being dehydrated today; (6) slightly twisting my ankle on a tree nut while intently looking at a mailbox on a recent run; (7) not being able to ice myself after physical activity (my roommate has needed the ice more after his recent surgery); (8) not yet knowing my mileage limit while running (running is new for me since COVID-19); (9) switching to a new running shoe (is it helping or hurting?); (10) walking a mile on uneven sand recently. And so on…
If you look critically at what contributes to pain, you’ll see that it’s possible to improve your underlying condition by changing how you navigate through this world. By examining the obvious—and subtle—contributing factors to pain, you can create a template in your mind for what you should be doing and also avoiding. In my earlier example, there are complex interactions between my physical awareness, my activity level, and my shoes that I can monitor and refine over time, as I get used to my new activity—running. This introspective, reflective process is often at odds with the objectives of using pain medications.
Sadly, many people with bleeding disorders have been offered pain medications as the only solution to their pain. Too much reliance on pain meds may be nothing more than a deception that obscures the true problem(s). While effective over the short term in tamping down pain signals (the effects), pain meds also disguise the complex set of underlying factors (the causes). If we don’t address the true causes of pain, and instead focus solely on the effects with pain medication, the condition or behaviors at the root of pain will get worse, not better.
So, is pain your enemy, or is it your collaborator? If you want to live a long and healthy life, pain can’t be reduced to your tormentor Don’t let your pain be in vain by seeking remedy only through pain medications. You can’t arrive at the underlying causes of your pain when you are literally numb to them. Our pain is not what ruins life; it is what prolongs life, but only if we listen and learn from it.
Corey Pierce is a PhD candidate in public health at Oregon State University. He is currently completing his PhD dissertation, which explores how pain attitudes are connected to the experience of pain and use of pain medication. Corey has severe hemophilia A. He is active in the bleeding disorder community as an advocate and teacher of yoga, and he serves on the board of Pacific Northwest Bleeding Disorders.