I still remember the first time I understood the phrase “chronic pain” – and that it applied to me.
It was about 8 years ago. I had been struggling with a bout of depression and was seeing a counsellor. I don’t remember how the topic came up (maybe I didn’t successfully suppress a wince, or was subconsciously rubbing a sore joint) but whatever the reason, she drew out of me the list of pains I experienced regularly. As she drew the story out of me she cocked her head and said in a considering voice “so you have chronic pain.”
My immediate reaction was “What? Of course not. It’s not BAD pain” – but she persisted, asking me the meaning of the word “chronic”. Emotionally, I wanted to say it meant “intense” but that’s not what chronic means. It means ongoing, long-lasting, or marked by frequent recurrence. Regardless of how wrong it felt to claim the word “chronic” I could see that, technically, all my pain issues were chronic conditions. The most significant insight was still coming, however.
My counsellor started to talk about the emotional impact of chronic pain. For the very first time I began to consider the cost of being in pain. It was so normal to me that it had never occurred to me to think in this way. It would still be another three years (and serious degeneration in my knees) before I was truly able to accept that the pain I was in was not normal, not something everyone else experienced and dealt with.
It began when I decided to do a “pain journal” for a month – to chart what kind of pain I was experiencing, and where, so I would have a better idea of what was going on in my body. The knee pain had been increasing in intensity and I wanted some “data” before talking to a doctor about it (I have a lot of resistance to trusting my pain to doctors). I knew I blocked out most of my pain – that if I ever consciously tuned in there was pain going on in multiple parts of my body at any given moment – but I really didn’t know the extent of it, because suppressing it meant I didn’t really remember it. So I made a chart and 6 times a day stopped to write down where I was in pain, and at what intensity. I lasted three days. Tuning into the pain, being aware of it, brought it into conscious memory. I was distracted and miserable, overwhelmed by the sheer amount of pain going on in me. I remember talking about it with a friend. I was very nervous, afraid I would be told that it was normal and I was just a wimp, although I had begun to believe that really wasn’t true. She was shocked by what I told her about my pain. She asked if I was in pain right then, curled up on her couch. I stopped to tune in and rattled off the few places that were hurting. She looked me full in the face, with so much compassion in her eyes and said, “that’s not normal”.
Since getting serious about cutting back on the salicylic acid in my diet, I have experienced a significant reduction in pain. It wasn’t the only thing that reduced my pain levels, but the most recent and most comprehensive. I still get headaches, but far less frequently – they are less of an everyday expectation and more of a once or twice a month inconvenience. I still have various joint/tendon/ligament issues that cause pain, but nowhere near as acute and not as constant. Where once I had constant background pain across multiple locations and daily acute pains, I now have near-daily background pain and occasional acute pain but in generally confined to a single location.
The emotional impact of this change is HUGE. It’s hard to convey just how much mental energy went into pain management. There was the brain power diverted to pain suppression, so that I could actually THINK in the remaining part of my mind. There was consideration of what I could and could not do – so much pre-planning and preparation, working out where I would be going and what I would have to do each day (I still have to manage the number of stairs I climb, but it’s the ONLY consideration most days). There was sadness over things I couldn’t share in with my friends, and fear that I was seen as lazy for not joining in.
Then there was the feeling of futility – knowing that this was my life and believing it would never be any different. From my earliest memories I experienced pain (I have clear memories of leg pain going back to about age four) so it was very difficult to believe that life could be pain free. There had been some improvements over time, through stretches and exercises as well as learning to limit myself, but actually being pain-free? A dream I never thought to dream.
I may not be entirely pain-free now, but in comparison to the rest of my life, it’s close enough. Pain now feels like an interruption, rather than my unchallenged daily norm.
It took a stupid injury to help me really see all this. Two months ago I cut my left index finger with a pair of scissors that slipped. It was a short cut (maybe 1.5 cm) but deep. I cut through all the skin layers, injured the ligament between my first two fingers, and severed a superficial nerve causing a patch of numbness running 3cm along my finger. It was fairly painful – the cut on its own, but also if I put any weight on my first two fingers, or bumped against anything. The numbness is mostly gone now, but something about the healing process means that this week I’ve been feeling pain along the cut line – which is what reminded me of all this.
The pain of cutting my finger taught me an unexpected lesson. For a few days I had constant pain. It was restricted to a small part of my body, but it was there. It was present in that corner of my mind, no matter what I was doing. I realised I was getting distracted more easily – that I would miss a part of conversation because the throb inside my head was loud for a few seconds and drowned out what someone was saying. I would catch myself staring blankly at a page of writing without actually reading it because my concentration was divided between what I was doing and the pain in the back of my head.
And I remembered.
I remembered that this used to be my life. That it had been my life for so long I had never thought to consider it strange. I never thought to consider there might be another way. I never realised I was existing with part of my brain tied up doing something else.
Suddenly I realised that the drop in pain levels was so much more than a reduction in physical discomfort. The reduction of physical pain corresponded with a reduction in mental stress. Being without pain set me free. Free to spend my mental energy on other things. Free to let myself feel more – because there was more in my head than pain. Free to let go some of the barriers that had held feelings back – because releasing them would no longer release a flood of suppressed physical pain as well. Without the pain to manage, I didn’t have to hide in my own head as much.
In the grand scheme of things, my body is pretty decent. It works, if sometimes (often) painfully. It gets me where I need to go, and under my own power. But now I also realise the emotional impact that chronic pain had on me as a child and as a young woman. The fear and uncertainty that still shadow physical activity, even when pain is minimal. The false beliefs I still have trouble rejecting.
I still have some things to work through, but there is a big difference between frequent pain and constant pain, and I revel in the freedom that difference brings.