By the Numbers and the Narratives: The Language of Pain
For mainstream healthcare professionals, pain assessment has become a numbers game. Not in the sense of your grandma playing the numbers in an illegal lottery--but in a simple 1-10 self-assessment with no context and no differentiation between acute and chronic pain. Not only is this method vague and reductive, it isn’t even the stupidest thing I’ve ever heard about acknowledging pain, let alone describing it. Here’s my favorite example of mindfulness gone awry:
Remember the 1989 Patrick Swayze movie ROADHOUSE? He plays a stranger who’s come to town, a Sergio Leone/Clint Eastwood-inspired type of drifter named simply “Dalton,” hired by the owner of a violent roadhouse bar to become the bouncer and purge-master of all things corrupt and evil. From escorting a rowdy patron out the door to busting the bartender for skimming the till, Dalton was calm, articulate, held an advanced degree in Eastern philosophies—and beat up a lot of guys despite his Zen-like demeanor.
His supreme “moment of Zen” came after one such fight when he sat in an ER room, bloody, bruised, and getting his face stitched up by a pretty doctor.
“Do you enjoy pain?” the doc asked.
“Pain don’t hurt,” said Dalton.
I fell on the floor in hysterics. If pain don’t hurt, what do? Then I stopped laughing and realized that Dalton had just expressed a universal-yet-particular kind of denial. Particular because it is a movie scene where the two romantic leads flirt for the first time and he doesn’t want her to think he’s a p***y; universal because Dalton is not the outlier, his ironic denial is the masculine standard of pain presentation. The medical establishment has historically looked to male trial subjects to set the standard for expressing pain. Granted, Dalton is probably a bit more stoic than the average man in pain, but understatement is what is expected. Women, in the conventional opinion of the medical establishment, exaggerate like bloody hell. If Hell is indeed merely bloody, leave it to a female to call it gory, perverse, and soul-killing. Heck, if left to our own devices, we’d probably put up curtains at the blast furnace windows in full view of eternal Hell fire.
Pain is diverse
But we with IBS are male and female, regular folk and aristocrats, kings and drag queens, coke heads and health freaks, grandmothers and Olympic athletes. The kinds of pain we experience are diverse and often defy explanation—but that doesn’t mean we shouldn’t try, and that doctors shouldn’t try to help us do it. Here’s an example of how my gastro helped me when she asked that I describe my gas pains.
“I don’t know,” I said, feeling irritated and at a complete loss for words. “It’s gas pains!”
“Is it a cramp?” she asked.
“Yes, yes, a cramp,” I agreed, thinking I was getting off the hook.
“A sharp pain?” she went on.
“That’s it, a sharp cramp, Bingo,” I said. Actually, that description was right on the money. I just couldn’t think of the words. Strange, since I pride myself on choosing the right ones. Why couldn’t I find them?
Emotion is directly connected with pain and our memories of it. Finding words is an intellectual process that is made difficult by feeling strong emotions. It is no wonder that pain is hard to describe. But emotion is a necessary ingredient of experiencing pain. Without emotion, we wouldn’t be able to distinguish pain from other sensations. Creating the emotion of pain is the body’s way of preserving itself. It distracts us and holds our attention so we’ll take care of it. (Wait, maybe Dalton was right. Pain don’t hurt, emotion do!)
But taking care of pain means making our doctors understand what kind it is and where it is and whether it is acute or chronic. We bear the burden of the responsibility by keeping careful symptom logs and prepping ourselves to explain our pain before appointment day.
Most important, we must make clear to our caregivers, professional and otherwise, exactly how the pain is affecting our quality of life. If we shrug it off, so will they. If we tell them the pain is at a 4 today and that’s been the case every waking hour for the past two weeks, wearing us down to the point of invalidism, then we should insist on providing that narrative. Alas, our suffering has not magically made the non-IBS population develop acute empathy so they can feel our pain.
It would be great if we could use the Vulcan mind meld like Mr. Spock did so masterfully on STAR TREK, gingerly placing our fingers on our docs’ heads and streaming our thoughts and feelings directly to their hearts and minds. I’ll put my money on a sensor app created by Apple or Google that will accomplish that one day—at least, in a virtual reality. Until it happens in real reality, we’ll just have to keep explaining ourselves.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to IBS?