One of the most pervasive descriptions of what it is like to live with persistent pain is the loss of sense of self. Time after time in qualitative research we read about people feeling they’re in “limbo land”, losing confidence that they can do what matters in their lives, feeling stigmatised and isolated – not themselves any more. An in-depth meta-ethnography of qualitative research showed that pain undermined participation, ability to carry out daily activities, stymied a sense of the future, and intruded on the sense of self (MacNeela, Doyle, O’Gorman, Ruane & McGuire, 2015).
To understand the idea of “self”, I poked about a little in the literature, and found a title I like “Becoming who you are” (Koole, Schlinkert, Maldei & Baumann, 2019). The theoretical propositions of this paper relate more to self-determination than self-concept – but that title “Becoming who you are” resonated strongly with me.
When I read through pain rehabilitation research and theory, especially that dealing with learning how to live well with pain, I rarely see anything written about how we might help people who feel alienated from their sense of self. Scarcely a word. Except in the psychological literature. There’s a bit about self-discrepancy theory (See E. Tory Higgins works for much more about self-discrepancy), where the “imagined self”, the “real self”, the “feared self” and the “ought self” don’t match – but not much about what to do about helping people restore a sense of self, particularly in physical and “functional” rehabilitation.
Silvia Sze Wai Kwok and colleagues (2016) argue that psychological flexibility can play a role in helping people adjust to chronic pain. They found that psychological flexibility mediated between self-discrepancy (how close is my current self to my feared or ideal self?) and pain outcomes (distress, disability and so on). In other words, the degree to which people could flexibly adjust their goals and actions to suit what they could and couldn’t do made a difference.
This seems like common sense. Kinda. As the authors put it: “recognition of self worth and self-values could be attuned through flexible (re)construction of self-concept in response to changing contexts. These adaptations and regulatory functions then in turn may predict the subjective feelings of pain interference, emotional distress and pain tolerance level perceived.”
So my question is: how often does this become openly discussed in pain rehabilitation? Particularly by occupational therapists and physiotherapists – the clinicians who most often work on goals and helping people achieve them?
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Whether a person is “motivated” to pursue important goals depends on whether the goals are important to them and whether they think they’ll successfully achieve them. When someone is “non-compliant” it’s because either the rehabilitation activities are not as important as something else in the person’s life, OR they’re not at all confident they can be successful at it. An enormous part of our job as rehabilitation professionals is helping people re-examine what they want to do and helping them adjust how to achieve the underlying values, even if the particular goal isn’t possible – yet. So, for example, if a person really values being a conscientious worker but can’t sustain a full working day, we can either help them fell OK about being conscientious for fewer hours, or we can make the work less demanding. I see this as an especially valuable contribution from occupational therapists.
Should rehabilitation clinicians be involved in this kind of “self-concept” work? I think so – especially occupational therapists. Occupational therapists are about doing, being and becoming – by doing things, we express who we are, and what we choose to engage in also shapes our perceptions of ourselves. As therapists we can’t help but influence a person’s self-concept – if we’re hoping to increase self-efficacy, we’re automatically influencing self-concept. If we’re working on goals, we’re influencing self-concept. If we’re working on participation in life, we’re working on self-concept.
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And physiotherapists? Self-concept? Yep – of course. If we’re helping someone do exercise, that’s going to influence that person’s beliefs about exercise and their capabilities – that in turn is going to influence self-concept. (psst! it might be even more powerful if movements are done in the context of daily life, where feedback is real, meaningful and ever-present).
Persistent pain challenges the automatic assumptions people hold about what they can and can’t do, what they’re good at, what’s important in life, and how to engage with “the world” at large. Our job as clinicians is to be sensitive to just how confronting it is to find that what used to be effortless and meaningful is now daunting and requires more concentration and thought than we ever believed. I think that’s part of our job, irrespective of professional labels.
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Koole, Sander L., Schlinkert, Caroline, Maldei, Tobias, & Baumann, Nicola. (2019). Becoming who you are: An integrative review of self-determination theory and personality systems interactions theory. Journal of Personality, 87(1), 15-36. doi: 10.1111/jopy.12380
Kwok, Silvia Sze Wai, Chan, Esther Chin Chi, Chen, Phoon Ping, & Lo, Barbara Chuen Yee. (2016). The “self” in pain: The role of psychological inflexibility in chronic pain adjustment. Journal of Behavioral Medicine, 39(5), 908-915.
MacNeela, Padraig, Doyle, Catherine, O’Gorman, David, Ruane, Nancy, & McGuire, Brian E. (2015). Experiences of chronic low back pain: a meta-ethnography of qualitative research. Health Psychology Review, 9(1), 63-82.
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