How do you accept chronic pain without giving up?
This is a question I’ve been asking myself increasingly often. I don’t know the answer. You might be wondering, Why are you writing a whole blog post about the answer to a question you don’t know? I decided to write this post in case someone else was grappling with the same question and felt alone.
As someone with both cerebral palsy and chronic pain, I’ve been taught to never give up. If a person who has these conditions gives up, they’re out of luck. No one can help me get better but myself. But what is “better”? “Better” to me can never mean a cure. Cerebral palsy doesn’t have a cure, and if my chronic pain does, it’s not easily attainable. “Better” means that my conditions are managed to the best of my ability to prevent from getting any worse. For example, maintenance is an important part of having CP and chronic pain. If I don’t continue to stretch and exercise, my muscles and joints will be stiff, making it harder to move around. My version of “better” is different than everyone else’s, but it has to be. Without the knowledge that my baseline is different, I would be stuck endlessly resenting my body and my lack of a cure. If “better” to me meant “cured”, I would have given up. That is the one thing I can’t allow myself to do.
There has always been a way for me to overcome things. I’ve always told myself that I can do anything anyone else can; I may just have to do it differently. Can’t carry a backpack? Fine, pull a roller bag around school. Have trouble climbing the stairs with a roller bag? Okay, take the elevator. Struggle to graph coordinates? Use a scribe. But chronic pain is something I can’t avoid. I can’t not feel the pain and there is no way around it.
My chronic pain began in August 2017. I was 9 years old and had no idea how to cope. I woke up one morning with severe stabbing pain in my knees. The muscles in my legs were always tight because of my cerebral palsy, but this was very different. My mom called my physical therapist, who said he believed it was just a growth spurt. The pain moved into my hips and stayed there. Five doctors, three rheumatologists, two different (incorrect) diagnoses, one major surgery, and countless X-rays later, my hip pain is still here. My chronic pain began almost 8 years ago, and I still haven’t accepted that it is here to stay.
I don’t know how to accept my chronic pain. I grieve the person I was before. I have begged and pleaded with my doctors for an answer. I have angrily seethed in my head about how unfair it is that I must deal with this pain at such a young age. I have my bad days where I am depressed about always being in pain. The only stage of grief I have left is acceptance, which seems to be the hardest.
The thing is, I don’t want to accept that I have chronic pain. I don’t want to live the rest of my life in pain. Most people my age are in the athletic prime of their lives; I move like an old lady on my worst days, and on my best, the pain is always there. I had nine years of my life where this pain didn’t exist. I’m used to fighting—with cerebral palsy, I have to fight for what I need. I want to fight this pain. But there is nothing left to hit it with.
I have tried five different types of medication, Botox injections, and steroid injections. I have seen three rheumatologists and a physical rehabilitation doctor. I have gone through astym therapy, hydrotherapy, and dry needling. I have been given diagnoses of bursitis and fibromyalgia, both of which were incorrect. My family and I have stopped trying to pursue a diagnosis and just treat the symptoms. However, I feel that a diagnosis would help me in my path toward acceptance. It is extremely difficult dealing with pain that you know is real, but undiagnosed. As a last resort, I underwent a major orthopedic surgery in June 2023 to attempt to stop my pain. The surgery improved many aspects of my cerebral palsy, but my pain did not change.
As I write this, I am experiencing a flare-up. My doctors are at a loss as to why I am still having chronic pain. My choice remains to either accept my chronic pain or keep living in denial that it might—and probably will—affect the rest of my life. I know what the healthier choice is. I ask myself, Does accepting that I have chronic pain mean that I’m giving up? The fact that my pain is chronic means it might never go away. Am I okay with that? Do I have to be okay with that? It sure is a hard pill to swallow sometimes. Which brings me to my question: how do you accept chronic pain without giving up?
My answer to you would be this: Understand that the pain is there. Don’t try to ignore it or deny its existence. That will never be helpful. The only thing that denying my pain did for me was make me resentful. I was resentful that there wasn’t an answer. I was resentful that there wasn’t a cure. Chronic pain can’t be ignored or avoided. I can’t live my life in spite of my chronic pain; I have to live with it. There is a difference. If pursuing an answer or diagnosis brings closure, keep trying. Keep fighting. (I still Google my symptoms in search of a diagnosis.) But don’t stay stuck in that rut. Giving up would be devoting the rest of your life to your pain. Remember that there are still things you enjoy, things that are worth living your life for—with or without chronic pain.
Accepting that I have chronic pain—and that it might never go away—is very difficult. It makes me sad and fiercely angry. Choosing to recognize those feelings—to acknowledge pain—is scary. So in that way, accepting chronic pain isn’t giving up. Accepting chronic pain is one of the bravest things you can do.