Each September, as my aching body begins reacting to the cooler temperatures of fall, I am reminded how appropriate it is that September is Pain Awareness Month. As someone living with axSpa (Axial Spondyloarthritis), my pain is more or less a constant. I have lived with it for decades, yet fall and winter bring more of that pain to the surface and force me to pay more attention to my body.
The first time I recall being aware of my pain was as a tween, or perhaps even earlier, when I would cry myself to sleep at night because of intense throbbing in my knees. “Growing pains,” I thought. I learned to hide my pain because none of my peers were crying themselves to sleep, and I did not want to be seen as different, or worse, weak. I got really good at hiding my “growing pains” even from my family—crying at night as quietly as I could.
As a 13-year-old, I helped set out luminaries across my town for our annual holiday festival. My best friends were older, retired, white people who made up the majority of the small town. I complained that my hips were aching and cramping from doing splits (my 13-year-old way of measuring the distance between each luminary). When I shared this, my older friends said it sounded like their arthritic pain. But kids don’t get arthritis. Right?
From then on, pain became my soundtrack, always playing in the background. Eventually, I only began noticing when a new song began, whenever I would feel a new, different kind of pain that I would have to adjust to. This constant and sporadic readjusting to pain was my normal. It was always there, happening as a backdrop to my teenage years and my early 20s, ever accompanying my sports and otherwise active life.
The only time I was allowed to really feel pain was if I knew what had caused it:
In high school I broke my thumb.
Pain. People could see it. I had a cast.
I broke my nose. I had surgery to help repair damage to my nostril.
Pain. People could see it. I had bruising and stitches.
My grandmother died.
Pain. People could see it. My eyes were baggy, there was a funeral — tangible stuff.
In college I tore my ACL playing soccer and had surgery to repair it.
Pain. People could see it. I had braces and crutches and things.
These were all acceptable forms of pain; there was an obvious cause and solution. The other kind of pain I had lived with since I was a child was not caused by anything. So, it was not valid, and why would I whine about aches and pains? After all, I was an athlete, and athletes push through the pain. It’s what makes us better at our sport.
When my lower back began hurting in earnest – to the point I could no longer ignore it, and it was significantly impacting my life – it was after I tore my ACL during my first year in college. I could not stand or walk longer than a few minutes without debilitating pain but running and slide-tackling other soccer stars felt just fine. The more active I was, the better I felt.
Doctors encouraged 20-year-young me to blame my back pain on my being such a hardcore college athlete, even though it was when I was most active that I had the least pain. They also told me my back pain was partly because my hips were uneven after knee surgery. The message was loud and clear: it was basically my fault – as an athlete – that my spine was beginning to show damage in the MRI they took.
I listened. I had no choice but to blame myself. Pain was my normal because I was conditioned to accept that doctors knew everything. Their explanations had to make sense. So, I blamed myself, and I internalized my chronic low back pain just like I had internalized the other pain I had since I was a child.
Without realizing it, I learned not to even try to show my pain for the same reason as during childhood: I did not want to be seen as different or weak. I grew to be an expert at hiding my grimace, and I joked with friends about the back brace I sometimes wore or the silly standing-crunch stretch I did to allow my vertebrae to “breathe” a little if I had been standing too long. My joints would painfully snap, crackle, and pop, allowing a few seconds of relief.
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When I was finally diagnosed with axSpa at age 26, I had lived with undiagnosed pain for over 13 years of my life. Suddenly, there was a reason for my pain, and many of my previous maladies fit together like puzzle pieces to support a single diagnosis. But the pain did not go away after diagnosis. I am still trying to solve that puzzle, eight years later.
I do, however, recall the first time as an adult that I experienced no pain. It was a couple years after my diagnosis and lasted a single afternoon in a 110-degree natural hot springs tub. After several minutes in the tub I felt, well, strange. I had no idea what was going on, but my body did not feel like mine anymore. Then it hit me. I was not feeling pain for the first time in a decade! I collapsed, sobbing with fear, my then-partner wondering what on earth was wrong. Instead of rejoicing, after so many years in pain I did not know what to do or how to react, and I was terrified.
Terrified of the pain returning.
Terrified of overdoing it with what suddenly felt like a brittle body; my built-in ‘Pain Warning System’ was gone.
I knew it was temporary relief, but I chose to push my body just a tiny bit even in my fear of this shell of a body that could not possibly be mine.
I did yoga for the first time in a long time. I bent in ways I had not bent since I was a child. I tried, I pushed, gently, and I cried a lot knowing the pain would return soon. I did not know how much time I had in this temporary state.
The pain returned the next morning, or perhaps while I was sleeping that night, and I had my body back — the one I could understand.
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I have developed a relationship with my body that, abstractly, has become abusive by proxy. I don’t know what it means to live without pain, such that experiencing a reduction or removal of pain terrifies me, and I wait for it to return so I’m in familiar territory. I know how to handle my body in pain because it is the only thing I know, as much as I hate living with pain. Having survived abusive relationships, this is the only way I know to understand my pain; pain that I wish I could leave behind with the core of my being, yet I don’t have the option and can’t even visualize that reality.
I also feel brittle without pain, as if I may not survive without my built-in warning system that tells me when I am pushing too hard. The feeling of pain has grounded me for so long that I do not understand life without it. The concept of a cure for axSpA is laughable to me; what would I do if my body had no pain for the rest of my life? Would I need decades of targeted psychotherapy, and would I ever really believe it? Would I question my body’s ability to survive without pain?
My pain is a tool that measures how much or how little I can do before I collapse. Without that measure, would I know when to stop? Would I unintentionally bring back pain if I did not have that tool, that Pain Warning System?
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Since my childhood, and since my diagnosis at age 26, I’ve grown so used to pain that my doctors, my therapist, my partners and friends all have stories about having to nearly force me to take medication or go to the emergency room for unbearable pain. I regularly “ignore” breakthrough pain, and I almost always find myself in tears or vibrating from the pain before I will allow myself to take a pill for it.
This tendency to inadvertently punish myself stems from a childhood of internalization and a society that encourages us to put on a brave face and push through pain rather than pay attention to it and treat it. It also comes from my default athlete brain: push through the pain, it leads to athletic achievement!
I am still learning and accepting that I do not have to wait to treat my pain, even if all I am able to accomplish is lessening it to a semi-tolerable amount. After all, pain is still my soundtrack. I am also consciously untraining my stubborn athlete brain, but that’s 33 years of unlearning to do. I know I do not have to wait until I am in tears before seeking treatment. I know I do not have to react to the stigma that exists around opioid pain medication, especially because it has helped me function for the last four years. Yet acting on that knowledge is where I still fail.
I am not at the point where I can imagine a life without pain, but somewhere deep down I hope for that future someday. In the interim, I am doing what I can in the body I have to find joy in the small things like gardening, loving my cats, and writing. More and more, I am also taking advantage of accessibility tools that help reduce my pain, like braces, canes, shower stools, and my wheelchair. I have realized that standing tall through the pain only makes the pain worse, so why not use a wheelchair so I can do more things that I enjoy and be in less pain?
September is Pain Awareness Month, and I am still learning to manage my pain with medications, exercises, mental healthcare, and other tools that can help — before the pain makes me writhe in tears. I hope, reader, wherever you are in your journey with pain, whether mental, emotional, spiritual or physical, that you, too allow yourself to take advantage of any tools you have at your disposal that can help bring that level of pain down even a smidge. So, you can do more in the body and mind that you have.
You deserve it. We all deserve it.
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