“So many live with pain, many more than you can imagine. A billion and a half of us all over the world are intimately entwined with pain and what comes with it … Looking in the dictionary, I see a definition of pain as a distressing sensation, as physical suffering. But is this so? Is this sensation just one thing, just distress, just suffering? Is it singular or, as with so many other aspects of our world, mutable and multiple, ever-changing? If we turn the prism, looking upon pain through each facet of the glittering crystal, what might we see?”
That is a quote from the beginning of my new book 7 Facets: A Meditation on Pain. It’s a short e-book that dives into the depths of pain and looks at it from different perspectives.
I’ve lived with chronic pain since I developed juvenile arthritis in early childhood. Forty-five years of partnership (if you will) with anything or anyone will teach you about said partner’s nooks and crannies, will drive you crazy and sometimes make you smile. After forty-five years, you know this thing or this person better than anything else in your life.
And so it is with pain and me. We know each other well, have been companions for almost half a century. We’ve tested each other, questioned each other, negotiated, fought, coexisted and worked together. And despite all of this, it can still surprise me.
Isn’t that what they say about the best relationships?
Our culture looks upon pain as a thing with only one character: suffering, distress, something to be avoided. This avoidance has ripples, affects how pain is dealt with, how it’s discussed — usually not — and how people who live with pain are perceived. Oddly enough, despite the horror with which most healthy people view pain, this has not translated into an all-out war on pain. Instead, it has led to an avoidance of the issue entirely, surrounding us in silence. And the silence has consequences, means that pain is not understood, either by laypeople or by medical professionals. And anything that’s not understood tends not to be believed, which becomes the “it can’t be as bad as all that” attitude of the healthy towards reports of pain. One step after the other down this road leads to our current situation where most people who live with chronic pain are significantly undertreated for their pain. It costs — on an individual level for the person who lives with pain and for society, in lost work and use of the healthcare system.
Something has to give. This vicious cycle has to be derailed. Breaking the silence is, I believe, the start to a better understanding of pain and the realities of those who live with it. Honesty from those of us who live with chronic pain, both on the bad days and good, is part of this. The refusal to be silenced. Sharing our lives, how we deal with pain, how we find joy. How the pain sometimes steals not just our lives, but also steals us from our loved ones. How other times we live full lives with the pain. All of these and more must be part of the dialogue.
I hope that 7 Facets: A Meditation on Pain will be a useful tool to start conversations within the chronic pain community, as well as each of us with others who don’t live with pain. Maybe reading it will be part of what deepens the understanding of pain and what it’s like to live inside it ever day. And just maybe, it will help more people avoid it less and start to break down the silence.
I chose to release the book during September, National Pain Awareness Month in the US and Arthritis Awareness month in Canada. This is a good time to start talking about pain. Together, let’s make sure the conversations continue past the end of the month.