Take a look at what is written about pain and people living with pain. Look at it with a critical eye. What do you see?

We have descriptions of battling, winning, losing, overcoming, finding a way, getting through, controlling, removing, reducing. Pain is the invader, the alien, something against which we must prevail. And we may prevail using the tools of modern science: we diagnose, we identify, we label and we explain. We treat, we medicate, we use novel movements, graded activity, we avoid sensitising a sensitised nervous system.

The results of this discourse are that when pain does not reduce, is not overcome, cannot be controlled, does not respond to treatment or explanation, we as treatment providers have lost.

Cognitive dissonance is the mental stress or discomfort experienced by an individual who holds two or more contradictory beliefs, ideas, or values. When faced with the situation in which pain “should” have reduced but hasn’t, treatment providers explain away this uncomfortable fact by suggesting that the person hasn’t been following instructions, the treatment wasn’t carried out properly or wasn’t the right treatment, the real cause wasn’t found, the explanation wasn’t thorough enough, the person wasn’t convinced, the treatment wasn’t carried out for long enough, or even that there was a change but the person didn’t recognise it, didn’t make the most of it, expected more.

How often do people living with pain fudge the outcome to avoid displeasing the person treating them? Fail to let the clinician know that yes, there’s still an impact on life despite pain being explained or managed?

Words, or discourse, are as John Shotter put it, “prostheses for moving about through our world’s physicality” (Shotter, 1993). By conversing, clinicians are given a glimpse into a client’s world, but at the same time, clinicians shape that conversation, guiding and leading it in directions that suit the clinician’s purpose. The words used by the client are translated into technical jargon, one prosthesis replaced with another, more “correct” one. Much of the “what it is like” to live with pain is never spoken of, perhaps never verbalised and never made tangible.

Let’s examine some of the expectations we as clinicians might hold about pain (taken from Strong, 1999):

1. Pain is personal and individual. This means that outward demonstrations of pain are discouraged – those who do are labelled negatively and called “distressed”, “disabled”, their behaviour called “maladaptive”, and in some cases even called “histrionic”, “malingering”, or simply “wallowing”.
2. Pain is valid only if “we” all agree on it. Although this discourse is slowly changing there’s a hint still present that if the person doesn’t “recover” the way they’re expected to, there’s something wrong with them – it’s those “psychosocial factors”, not the real pain mechanisms.
3. Suffering, or the loss of self, is some sort of moral or physical failing of the person.  They haven’t “accepted” it, they have ongoing litigation or compensation, they must be getting secondary gain.

I am guilty of these kinds of attitudes. I have been guilty of projecting my own frustration at people who haven’t responded the way I think they ought to. I’ve held beliefs that people should get better because I’ve conducted good therapy and if they haven’t made changes it can’t possibly be my fault, it must be “them”.

In a conversation over the weekend I was reminded that despite generally being someone who deals with my pain (and depression) reasonably well, there is a whole hidden conversation that I rarely engage in, and in failing to acknowledge that part of the “what it is like” to live with pain I’ve missed being compassionate towards myself – and probably others.  That conversation for me was about the never-ending presence of pain at all times somewhere in my body. There is never a time when I’m not sore somewhere. I ache in my lower back, I burn between my shoulder blades, my neck is tight, my MCPs feel hot and bruised, my toes are tingling and sensitive.  I have heaviness behind my eyes. My belly hurts.

The point behind posting this is not that I seek comfort or support or anything from anyone else, but simply to acknowledge that although I know my pain is meaningless, it doesn’t reflect harm or damage and doesn’t pose a threat – it is still present. And in being present, in order to do what is good and enriching and valuable, I must use energy to put that pain experience to one side. I need to accommodate that pain, and take account of it at all times.  And that is tiring. It can be more than tiring, it can be exhausting.

In his article, Strong describes a practice that I guess today would be called mindfulness. He describes “listening for, and working within, the language of visceral experience” to help people transform the quality from one of rejection or judgement, into an “authenticating or welcoming stance”.  He suggests beginning by actively focusing in a relaxed manner on the area which most feels pained, using breathing and concentration. Using this focusing to explore the sensory quality of that area anew – a gentle curiosity. To stay “with” the area – and if working with a therapist, the therapist must “stay with” their client by using “clean language” or the client’s actual words to reflect that the experience has been “authenticated”, or verified by co-construction.

Hidden or secret experiences continue to have an impact although they are rarely discussed. While my experience of pain is certainly personal, the impact it has on me and what I do (and even on what I allow myself to acknowledge) is public. Or it can be if I allow it to be so. By hiding my experience from others I show a public face of energy and effervescence that isn’t complete. It’s not authentic. It suggests to others that I may not have this experience. I wonder how often I/we as clinicians make our therapeutic space safe and nonjudgmental enough for the people we work with to get in touch with those aspects of “what it is like” to live with pain that are hidden, are buried beneath the facade of winning, overcoming, battling, being explained away.

And here’s a final kicker: having been open to being vulnerable, how many of you find it hard to read this honesty? What’s your initial response? Do you want to fix it? Find a solution? Offer me something? Do something for me, to me? What would it be like to simply be present and experience the “what it is like” to be utterly fatigued by ever-present pain? Would you be willing to stay with that experience? And what would it mean to you? Your response will, if you let it, tell you a secret.

 

Shotter, J. (1993). The cultural politics of everyday understanding. London: Basil Blackwell.

Strong, Tom. (1999). Macro- and micro-conversation in conspiring with chronic pain. Journal of Systemic Therapies, 18(3), 37-50.