During a discussion of pain and pain management with a good online friend (you can see his remarkable photography here), my friend Michael made the remark that the efforts of those who cope with chronic pain are heroic. It’s certainly not a typical way to view ourselves. My frequent experience in person and in online circles is that most people would rather you not talk about it. Indeed, if you do, you’re perceived as a whiner or complainer at best, or that you deserve what you’re experiencing at worst. The following are some of my thoughts from that discussion.
It’s actually nice to think of oneself as heroic for a change. We get so used to people minimizing the experience, which is why I think many people tend to be humble and say that we do what we have to do. Myself, sometimes I wonder if it’s like the frog in the proverbial pot brought slowly to the boil. Because the evolution of pain over time is gradual, we almost become inured to the pain (or at least experts at disconnecting from the body and living in our own heads to escape it), whereas if we were dropped into a boiling pot we’d jump out in no time.
Before my emergency hysterectomy in 2008, I’d suffered 12 years of the most debilitating pelvic pain every time an ovarian cyst burst. No doctor took it very seriously, and I remember a telling situation where we were driving to the hospital, and the pain finally relinquished minutes from the door. I didn’t want to go in for another scan and be told nothing was wrong, so my wife turned the car around and we went home. During that emergency episode in 2008, I was throwing up from the pain. The ambulance came and got me and the surgeon told me about this big mass she saw on the scan. I could read cancer all over her face. Well she was surprised to cut me open and find over 2 pints of old and new blood pooled in the pelvic cavity. While I was still under, she told my wife that I was a very brave woman to have dealt with the pain I had obviously been going through. But I literally didn’t have a choice. The other scans hadn’t shown much of concern, past surgeries identified endometriosis and removed a benign tumour, but the doctors remained unconcerned despite my pain. It literally took an emergency to finally get relief. I still occasionally get episodes of that pain, and I don’t know whether to think it’s a phantom or something real.
Hence with my new experience of kidney pain, I’m not really trusting the doctors telling me it’s nothing. I don’t think it’s normal to have a dull pain in your kidney for a year.
I also think it’s destructive to ourselves to compare our pain – whether it’s constant or goes up or down – it’s pain, and we all deserve to improve our quality of life regardless. I know at the moment I have trouble sleeping with it, and it’s making me spacy. My body is wound tighter than a drum, which of course exacerbates the pain but it’s truly difficult to relax, even through meditation and yoga, when it’s so unremitting. So yes, you’re right, we are heroic, even if others don’t see the struggles we go through.