troubled roads

Talking past each other: Secret conversations, hidden realities


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.

5 comments

  1. Thanks for important consideration. Several good points including the pleasing of the practitioner by not being telling the whole truth. I have done that myself. Sencing the practitioner is out of tricks and not going to respond well to “still the same or worse” give a fudged answer.

    I also sometimes think it is the push to get rid of pain that entrenches it for some. Eugene Gendlin’s work called Focusing is a beautiful work for simply listening and getting to know a bodily sensation. As a person is guided through Focusing, a pained area might represent as hard, dark and then have a voice or suddenly go to a bright flower. It may not significantly change the pain long term but it is a transforming experience for the client. I have personally experienced it in years past and reading your article reminds me that I should revisit that work as a potential for clients. I am a Feldenkrais practitioner so it is an easy fit for me. Not sure how that would work in a PT or OT setting but still recommend knowing about it.

    I should say there are other less developed works out there that are leading and attempts to fix. Focusing is pure get to know what is, give it a voice, watch it change, no expectations to what approach.

    1. Thanks for taking the time to comment. Yes, focusing is another technique that people can use to get “with” pain rather than attempt to push it away. It seems to be about changing the relationship to or judgement of pain as something wrong or bad. Let me know how it works!

  2. Bronnie, your posts always resonate with me, like I’m reading my own thoughts and that my thoughts are ok🙂

    When I was in physical therapy, during the worst of my pain, I was that patient who never told the whole story. I didn’t want to be difficult. I liked my PTs and didn’t want to disappoint them or lead them to feel ineffective (or to think that I was ineffective or defective).

    I also didn’t know that I should, I was never really asked how pain was affecting my life, I was only asked about the pain. And I didn’t know any of the pain science then that I know now do I didn’t realize that those other areas of my life (the stress of work comp, financial strain, losing my identity, loss of self-worth, worry about my future, fear of losing my career and physical pursuits, etc) were an important part of pain experience. Back then pain was only what I felt in my hip, I wasn’t aware that the experience of pain includes all those other factors.

    So those parts of my experience were largely hidden from everyone, including me husband for a time. I didn’t want to be a burden or a drag. And I became pretty withdrawn from all my friends and family for that reason.

    Later on, when I started learning pain science, I started coming to the realization that all that other stuff wasn’t something to be ashamed of. That it was a part of who I was and that I wanted to talk about it and make it on for others to talk about it.

    I want folks to see that emotion and feelings and experiences don’t have to be categorized as good/bad, they just are and it’s not as daunting to sit with them (even the ones that carry a negative valence like anger, frustration, being over it, feeling exhausted and spent, being in a flare, etc), acknowledge them, give them some space to be there, as it seems. We don’t have to try and be rid of them just because they’re ‘negative’, they’re a part of life, nothing to be ashamed of.

    One of the hardest things for my husband to overcome when I did start sharing these things with him was his desire to fix it and being helpless to do so. I told him I wasn’t sharing to be fixed, that wasn’t what I was seeking, I just wanted to be heard. And loved. All I wanted from him (and still do) is acknowledgement, a hug, and a kiss on the forehead.

    It doesn’t need to be fixed, I just don’t want it to be hidden.

    Thank you for the post and the thought provocation!

  3. Thanks for this thought-provoking post Bronnie! This reminds of an experience I had with a patient a couple of weeks ago. They were telling me about the odd sensations and pain they were feeling in their arm/shoulder after being out of their sling for the first week after several weeks of being immobilized. I was trying to reassure them that it was normal and explain that they were feeling it because of increased sensitivity after being immobilized for so long. I felt pressure to make this person feel better and I think they sensed that so they commented, “I’m just trying to keep you in the loop”.

    After reading this post, I realized that I was uncomfortable with just being present with this patient while they told me about all their symptoms. I felt the urge to explain them away since they are coming to see me and so I thought that they wanted a solution. Maybe all people want sometimes is a listening ear. I’ve been trying to do that more since! My fear is that they think I’m not doing anything for it if I am just listening (and really I don’t know if I am, but maybe that’s not what they would think).

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