Resilience

Each time we face our fear, we gain strength, courage, and confidence in the doing – Theodore Roosevelt


I’m not certain Theodore Roosevelt actually said that – but who cares?! It’s a great statement. For the person living with persistent pain, though, it can be the last thing you want to hear. After all, it’s tough enough getting up and just doing the normal things let alone challenge yourself! So… how can a health professional help?

Let’s briefly recap. Self efficacy is the confidence I can do something successfully if I wanted to. It’s a robust predictor of many health behaviours including exercise, stopping smoking, eating healthily and coping well with persistent pain (Jackson, Wang, Wang & Fan, 2014; Williams & Rhodes, 2016). It was first introduced as a concept by Bandura as part of his theoretical model of behaviour change, and further discussed in an experimental study in a paper investigating systematic desensitisation processes, arguing that this approach to treatment created and strengthened expectations of personal efficacy (Bandura & Adams, 1977). Bandura argued that people develop a sense (expectation) of self efficacy from their own performance, watching others succeed, being persuaded by someone that yes indeed you have the skills to achieve, and also awareness of physiological arousal from which people can judge their own level of anxiety.

Self efficacy is more than a simple “general confidence” construct, however. It’s far more selective than this. For example, although I believe I can successfully dance in my lounge with no-one there and the curtains closed, this does not translate to me dancing on a stage on my own in the spotlights with an audience watching! Self efficacy refers to confidence to succeed and produce the outcome I desire in a given context – and that’s extremely important for pain management, and in particular, exercise for people experiencing pain.

How does self efficacy improve outcomes? There are at least two ways: (1) through the actions taken to manage or control pain (for example, gradually increasing activity levels but not doing too much) and (2) managing the situations associated with pain (for example, people with low self efficacy may avoid activities that increase pain, or cope by using more medication (Jackson, Wang, Wang & Fan, 2014).

To examine how self efficacy affects outcomes, Jackson and colleagues (2014) conducted a meta-analysis of papers examining this variable along with other important outcomes. Overall effect sizes for relationships between self efficacy and all chronic pain outcomes were medium and highly significant. This is really important stuff – we don’t find all that many studies where a single variable has this much predictive power!

As a moderator, the adjusted overall effect size (r=.50) of self efficacy and impairment was larger than the average effect sizes of meta-analyses on relations between disability and fear-avoidance beliefs, and pain as a threat for future damage and challenge for future opportunities. Self efficacy has stronger links with impairment than cognitive factors such as fear-avoidance beliefs and primary appraisals of pain (Jackson, Wang, Wang & Fan, 2014).  Age and duration of pain were the strongest moderators of these associations and suggest that reduced self-efficacy can become entrenched over time. In other words – as time passes, people experience fewer opportunities for success and begin to expect they won’t ever manage their pain well.

An important point is made by these authors: how we measure self efficacy matters. They found that self efficacy measures tapping “confidence in the capacity to function despite pain” had
stronger associations with impairment than did those assessing confidence in controlling pain or managing other symptoms.

Bolstering self efficacy – not just about telling people they can do it!

Given that self efficacy is domain-specific, or a construct that refers to confidence to do actions that lead to success in specified situations, here are a few of my questions:

  • Why are most people attending pain management programmes provided with gym-based programmes that don’t look at lot like the kinds of things people have to do in daily life? It’s like there’s an expectation that “doing exercise” – any exercise – is enough to improve a person’s capabilities.

    BUT while this might increase my confidence to (a) do exercise and (b) do it in a gym – but does it mean I’ll be more confident to return to work? Or do my housework?

  • How often are people attending gyms told to “push on”, or to “stop if it hurts”? And what effect does this have on people?

If their confidence is low, being told “just do it” is NOT likely to work. People need to experience that it’s possible to do things despite pain – and I think, to be able to handle a flare-up successfully. Now this is not going to happen if we adopt the line that getting rid of all pain is the aim, and that flare-ups should be avoided. If we want people to deal successfully with the inevitable flare-ups that occur, especially with low back pain, then we need to (a) be gentle, and grade the activities in an appropriate way (b) have some “ways of coping” we can introduce to people rather than simply telling them they can cope or reducing the demands (c) have other people around them also coping well (and that includes us health professionals)

  • Ensure we attribute change to the person, not to us.

That’s right: not to our sparkling personality, not to our special exercises, not to the machines we use, not to the techniques we have – you get the drift? Progress must be attributed to the person and his or her skills and perseverance. Because, seriously, all this arguing over which exercise regime is best doesn’t stack up when it’s actually self efficacy that predicts a good outcome.

And for case managers who may read this: just because someone has successfully completed an exercise programme, or a vocational programme with exercise as a component, this does not mean the person can manage successfully at work. Well, they may manage – but they may utterly lack confidence that they can. Context matters.

 

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral change. Cognitive Therapy and Research, 1(4), 287-310.

Estlander AM, Takala EP, Viikari-Juntura E., (1998). Do psychological factors predict changes in musculoskeletal pain? A prospective, two-year follow-up study of a working population. Journal of Occupational and Environmental Medicine 40:445-453

Jackson, T., Wang, Y., Wang, Y., & Fan, H. (2014). Self-efficacy and chronic pain outcomes: A meta-analytic review. The Journal of Pain, 15(8), 800-814.

Williams, D. M., & Rhodes, R. E. (2016). The confounded self-efficacy construct: Conceptual analysis and recommendations for future research. Health Psychology Review, 10(2), 113-128.

Advertisements

The confidence that you’ll succeed if you try…


Self efficacy. It’s a word bandied about a lot in pain management, and for a group of clinicians in NZ, it’s been a shock to find out that – oh no! They’re not supporting self efficacy with their patients very much! It means “confidence that if I do this under these conditions, I’ll be successful”.

Self efficacy is part of Bandura’s social learning theory (click here for the Wikipedia entry) where he proposed that much of psychological treatment is driven by a common underlying mechanism: to create and strengthen expectations of personal effectiveness. Bandura recognised that we don’t always have to personally experiment through trial and error in order to learn. Self efficacy expectations were thought to develop from personal experience (let me do, and I’ll learn how); watching other people try (show me, and I’ll see if you succeed, then I’ll copy you); verbal persuasion that aims to convince that you have the capabilities to manage successfully (encourage me, let me know I can, and I’ll try); and how physiologically aroused or alert you are (if I feel confident inside, I’ll try but if I feel anxious or stressed I’m less inclined to) (Bandura, 1977).

Bandura and colleagues established that “different treatment approaches alter expectations of personal efficacy, and the more dependable the source of efficacy information, the greater are the changes in self-efficacy.” (Bandura & Adams, 1977, p. 288). The conclusions drawn from this mean that treatments where people DO and succeed are more effective at enhancing their belief in self efficacy, while watching others, or being told how to do something are far weaker at building this effect.

Bandura began working on this theory while pondering how psychological treatments, particularly for systematic desensitisation or graded exposure, generated their effects. Systematic desensitisation aimed to reduce arousal levels and thus avoidance while being in a relaxed state – therefore the person is exposed to increasingly “aversive” stimuli (stimuli you want to avoid) while remaining calm and relaxed. Bandura thought that there were other factors involved in avoidance behaviour, developing his theory that expectations of negative consequences alone can generate fear and defensive behaviour and that this isn’t necessarily reflected in autonomic arousal and actions. Bandura hypothesised that reducing physiological arousal improved performance not by eliminating a drive to escape – but instead by increasing the confidence that the person can successfully manage the situation.

For parents, the idea that if you believe you can do what you set out to do, is embodied in the little book “The Little Engine That Could” (Piper, 1930/1989). Remember? The little engine that couldn’t because all the bigger engines said so, but then tried and tried and believed he could – and he did!

So, what does this have to do with pain management?

Let’s paint a scenario. Allan comes to see a hands-on therapist because he has a sore back. He believes that hands-on therapy is the thing, because others have said it’s really good. He goes, gets his treatment and wow! Things improve! The next time he has a sore back (because, you know, it almost always comes back) what does he do? Well, on the basis of his past experience, he heads to his hands-on therapist, because he’s confident this will help his pain. The problem is, his therapist has moved town. He’s a bit stuck now because in his town there are not many therapists doing this particular kind of treatment – what does he do? He doesn’t believe that anyone else can help, and he has no belief that he can manage by himself. He has little self efficacy for managing his own back pain.

Self efficacy is not about whether a person can do certain movements, it’s about believing that the person can organise skills to achieve goals within a changing context – not just what I will do, under duress, but what I can do, what I’m capable of doing, and what I say I’ll probably do.

Self efficacy is not a belief that a specific behaviour will lead to a certain outcome in a certain situation, it’s the belief that I can perform that behaviour to produce the outcome.

So, self efficacy isn’t a generalised attitude – it’s a specific belief about certain actions, certain outcomes in certain situations. It’s not a personality trait like hardiness, or resilience, or general confidence or self-esteem, it’s about being confident that I can generate a solution to a problem in a particular part of my life.

The times when we’re least confident are often when we’re facing a new experience, or we’ve had a bad experience previously. Particularly if we’ve seen other people fail at the same thing, or succeed but do so with much fear and loathing. In the case of pain, there are ample opportunities to have a bad experience in the past, and to learn from other people around us that – oooh back pain is something to be afraid of, and you can’t manage it alone – you need to get help from someone else. Consequently, many people have very low self efficacy for successfully dealing with a bout of low back pain.

And health professionals: we can foster this.

How? By implying that success is due to what we do, rather than being a natural process of recovery. By suggesting it’s something about our “magic hands” or pills, or injections or surgery or special exercises, or “using the core correctly”. In doing so, we’re generating a belief that the person cannot manage alone. That it’s not what the person does, but the magic hands, pills, injections, surgery, special exercises or using the core…

Damush, Kroenke, Bair, Wu, Tu, Krebs and Poleshuck (2016) found that self management approaches to pain increase self efficacy, self management actions, and reduced pain intensity and depression in a group of community patients with chronic musculoskeletal pain and depression. A typically tough group to work with because confidence to succeed at anything is pretty low in depression. Self management aims to ensure the credit for recovery lies with the person doing things that help – creating and supporting a belief that the person has the capability to successfully manage their situation. The techniques? Simple strengthening and stretching exercises, progressive muscle relaxation, and visualisation, in a group setting. Strategies that typically don’t need technology, but do provide support. Information about the natural history of recovery was included – so people were given realistic and optimistic information about their recovery, whether it meant pain reduction, or not. The usual goal setting, problem-solving, and positive self talk were encouraged, and people set goals each week to achieve – maybe based on something from the session, or something the person wanted to do for themselves.

This is not a high-tech approach. This is simple, straightforward pain management as it has been done for years (right back as far as the mid-1970’s and Sternberg!). And through it, these people become increasingly confident that they could successfully manage their own mood and pain independently. As a business model it’s probably not the best for repeat business – but oh how good for those participants who could go away and live their lives without having to think of themselves as patients.

More on self efficacy in the next couple of weeks – we can help people to become confident that they can succeed at managing their pain if it should happen again.

 

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review,  84, 191-215.

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral change. Cognitive Therapy and Research, 1(4), 287-310.

Damush, T., Kroenke, K., Bair, M., Wu, J., Tu, W., Krebs, E., & Poleshuck, E. (2016). Pain self‐management training increases self‐efficacy, self‐management behaviours and pain and depression outcomes. European Journal of Pain, 20(7), 1070-1078.

Maddux, J. E. (2016). Self-efficacy Interpersonal and intrapersonal expectancies (pp. 55-60): Routledge.

Minding your body: Interoceptive awareness, mindfulness and living well


We all grow up with a pretty good idea of what our body feels like; what normal is. It’s one of the first “tasks” of infancy, it seems, to work out what is me and what is not. When people experience a disturbance to the way their body moves or feels, it can take some time to get used to that new way of being. In pregnancy, where the body takes on a different shape and dimension, it’s not uncommon to bump into things because the new shape hasn’t yet sunk in!

This awareness of “what my body feels like” is called interoceptive awareness (IA), and I was intrigued to read this paper by Hanley, Mehling and Garland (2017) in which IA is examined in relation to dispositional mindfulness (DM). DM is thought to be the innate tendency to notice without judging or automatically reacting to what is going on. IA may be extremely sensitive in some people – for example, people with health anxiety might notice their sweaty palms and heart palpitations and then worry that they’re about to have a heart attack, or the same symptoms in someone with social anxiety might be experienced as indications to LEAVE RIGHT NOW because EVERYONE is looking at ME.

I’m not sure of research into IA in people with persistent pain, although I am positive it’s something that has been studied (see Mehling, Daubenmier, Price, Acree, Bartmess & Stewart, 2013). As a result, in my conclusions I’m going to draw from my experience working with those living with persistent pain, and extrapolate wildly!

This study aimed to establish the relationship between various items on two questionnaires used to measure IA and DM: the MAIA (Multidimensional Assessment of Interoceptive Awareness), and the FFMQ (Five Facet Mindfulness Questionnaire). The paper itself discusses the first measure as empirically derived and confirmed by focus groups, and having associations with less trait anxiety, emotional susceptibility and depression – in other words, high scores on this measure (awareness of body sensations and judging those sensations) are associated with important factors influencing our wellbeing. The second measure is described as “one of the most commonly used self-report measures of DM”. It consists of five scales thought to measure important aspects of mindfulness (observing, not reacting and acting with awareness).

Along with these two measures, the authors examined wellbeing, which essentially was defined as a tendency to accept oneself, have a purpose, manage the environment, develop good relationships, continue to grow as a person and be independent and autonomous. We could probably argue about these dimensions in view of what may be a cultural component (autonomy may not be highly favoured in some communities).

Recruitment was via mTurk, Amazon’s crowdsourcing website. As a result participants possibly don’t represent the kinds of people I would see in clinical practice. And half of the 478 participants were excluded because people didn’t complete all the questionnaires. I could quibble about this sample, so bear that in mind when you consider the results.

Results

Turning to the results, the first finding was a good correlation between all three questionnaires, with the FFMQ more strongly correlated with psychological wellbeing than the MAIA. But these researchers wanted more! So they carried out canonical correlation analysis, which is used to correlate the latent variables present in measurement instruments. It’s complicated, but what it can tell us is how underlying aspects of two unrelated measures might fit together. In this instance, the researchers found that two of the FFMQ (non-reacting and observing) were related to six of the eight MAIA factors (attention regulation, self-regulation, trusting, emotional awareness, body listening and noticing). They also found that FFMQ ‘non-judging’ and ‘acting with awareness’ were associated with MAIA ‘not worrying’ subscale.

What does this tell us? Well, to me it’s about grouping somewhat-related items together from two instruments to work out their contribution to something else. The authors thought so too, and therefore completed a further analysis (told you it was complicated!), to look at a two-step hierarchical multiple regression where the two sets of scales were entered into equations to see how much each contributed to the psychological wellbeing score. Whew!

What they found was interesting, and why I’m fascinated by this study despite its shortcomings.

What can we do with this info?

Being mindfully observant and non-reactive seems to be associated with a person’s ability to notice and control attention to what’s going on in the body. Makes sense to me – knowing what goes on in your body but being able to flexibly decide how much to be bothered about, and what you’re going to do about those sensations will make a difference to how well you can cope with things like fatigue, hunger, the need to change body position or to sustain a position when you’re focusing on something else – like hunting!

Apparently, being able to attend to body sensations is also part of regulating your emotional state, and if you can do this, you’ll generally experience your body as a safe and “trustworthy” place. And if you can do this when your body doesn’t feel so good yet still remain calm and accepting, this is a good thing. In the final analysis, these authors called the first cluster of statements “Regulatory awareness” – being aware of your body and regulating how you respond to it. The second cluster related more with non-judging and acting with awareness, so the authors called this “Acceptance in action”.

For people living with persistent pain, where the body often does not feel trustworthy and there’s an increased need to “ignore” or “let go” or “not judge” painful areas, it seems that one of the most important skills to learn is how to self regulate responses to IA. To take the time to notice all the body (not ignore the sore bits, nor obsess about the sore bits). This doesn’t come easily because I think for most of us, we’ve learned we need to notice pain – after all, ordinarily it’s helpful! The second part is to accept in action – in other words discriminating between unpleasant body sensations are should be worried about, and those not needing our attention is an adaptive skill. Perhaps mindfulness gives us better capabilities to discriminate between what needs to be taken into account, and what does not.

Interestingly, the least strongly associated response items were related to using words to describe what goes on in the body. For me this suggests experiential practices might be more useful to help people develop these two skills than simply talking about it. And suggests that maybe we could use meditative movement practices as a good way to develop these skills.

R.A. Baer, G.T. Smith, J. Hopkins, J. Krietemeyer, L. Toney, (2006) Using self-report assessment methods to explore facets of mindfulness, Assessment 13 27–45.

Hanley, A. W., Mehling, W. E., & Garland, E. L. (2017). Holding the body in mind: Interoceptive awareness, dispositional mindfulness and psychological well-being. Journal of Psychosomatic Research, 99, 13-20. doi:https://doi.org/10.1016/j.jpsychores.2017.05.014

W.E. Mehling, J. Daubenmier, C.J. Price, M. Acree, E. Bartmess, A.L. Stewart, (2013). Self-reported interoceptive awareness in primary care patients with past or current low back pain, Journal of Pain Research. 6

W.E. Mehling, C. Price, J.J. Daubenmier, M. Acree, E. Bartmess, A. Stewart, (2012) The multidimensional assessment of interoceptive awareness (MAIA), PLoS One 7  e48230.

Empathy and catastrophising influence pain inhibition


When I went to occupational therapy school I was introduced to nociception and the biological underpinnings of pain. I wasn’t, at that time, taught anything about the brain, attention, emotions or any social responses to pain behaviour. Like most health professionals educated in the early 1980’s, pain was a biological and physical phenomenon. I suppose that’s why it can be so hard for some of my colleagues to unlearn the things they learned way back then, and begin to integrate what we know about psychological and social aspects of our pain experience. Because pain is a truly biopsychosocial experience. Those pesky psychosocial factors aren’t just present in people who have difficulty recovering from pain, they’re actually integral to the entire experience.

Anyway, ’nuff said.

Today I stumbled across a cool study exploring two of the psychosocial phenomena that we’ve learned are involved in pain. The first is catastrophising. And if you haven’t got your head around catastrophising it’s probably time to do so. It’s one of the strongest predictors of disability (Edwards, Dworkin, Sullivan, Turk & Wasan, 2016). Catastrophising is the tendency to “think the worst” and consists of ruminating (brooding on), magnifying (over-estimating the negative impact) and helplessness (feeling as if there’s nothing you can do).  The second is empathy, or the ability to sense other people’s emotions, coupled with the ability to imagine what someone else might be thinking or feeling. Empathy is not the same as sympathy which seems to be about the emotions a person experiences while observing another’s emotional state. In fact, separate parts of the brain are involved in the two experiences (Cuff, Brown, Taylor & Howat, 2014).

Back to the study. This study examined conditioned pain modulation in partners observing their partner undergoing a painful experience. It was carried out by Gougeon, Gaumond, Goffaux, Potvin and Marchand (2016) in an attempt to understand what happens to the pain experience of people watching their loved ones in pain. The experimental protocol was (1) baseline; (2) assessing pain VAS 50; (3) pre-CPT heat pain testing (thermode preimmersion at a fixed temperature); (4) CPT (either at 201Cor71C); and (5) post-CPT heat testing (thermode postimmersion at the same fixed temperature). What they did was ask the participants to submerge their right hand in a freezing cold waterbath while video recording them. They then asked their partners to place their right hand in lukewarm water while watching the video recording. Participants were asked to rate their pain intensity.

What they found was the higher the catastrophizing score was, stronger was their descending pain inhibition when they were watching either themselves or their spouse in pain. In women, the more empathic the women were, the better was their descending pain inhibition when they observed their spouse in pain.

This is extraordinary. Firstly, the finding that there was a correlation between catastrophising score and descending inhibition contradicts other research studies – Gougeon, Gaumond, Goffaux, Potvin and Marchand suggest that although cognitive and emotional processes underlying catastrophising increase pain perception and decrease inhibition, their experimental design may have increased pain perception during the conditioned stimulus which may have triggered more conditioned pain modulation. They also suggest that the catastrophising level of participants increases their perceived pain, explaining why it correlates with conditioned pain modulation efficiency.

Secondly, women were more distraught than men by observing pain in others. Adopting the perspective of a loved-one elicited stronger activation in regions involved in the “pain” matrix than adopting the stranger’s perspective (Cheng et al), and the authors suggest that empathy is a powerful factor involved in pain modulation while observing someone in pain. This shows that descending inhibition is influenced by physical stimulus characteristics (such as intensity or location), as well as personal cognitive dimensions. A far cry from the notion that psychosocial factors play little part in modulating our pain experience.

What does this actually mean for us?

Well, to me it suggests that we need to be aware of our own empathic response to observing someone else who is experiencing pain. Let’s put it this way: if I’m an especially empathic person (and especially if I tend to catastrophise) and I see people who are experiencing pain in my clinical practice, my own emotional and cognitive response to seeing people may influence my behaviour and practice. For example, I might be less willing to tell people that I don’t have a way to reduce their pain. I might pursue more “heroic” healthcare – send people off for more treatments, try for longer with unsuccessful treatments “just in case”, I might even send people away from my care because I find it hard to tolerate being around someone who “doesn’t respond”.

You see, being empathic and catastrophising tends to elevate feelings of distress in the presence of pain. If we don’t have effective ways to manage our own distress when we are in the presence of someone who is indicating they’re sore, we’re at greater risk of developing burnout and of feeling frustrated (Gleichgerrcht & Decety, 2014).

For this reason I’m a fan of using mindfulness because it does help people to step back from the emotional judgements of experience, and in particular the negative impact such judgements have on both interactions and emotions (Dobkin, Bernardi & Bagnis, 2016).

 

Cheng Y, Chen C, Lin CP, et al. Love hurts: an fMRI study. Neuroimage. 2010;51:923–929.

Cuff, B. M. P., Brown, S. J., Taylor, L., & Howat, D. J. (2014). Empathy: A review of the concept. Emotion Review, 8(2), 144-153. doi:10.1177/1754073914558466

Decety, J., Yang, C.-Y., & Cheng, Y. (2010). Physicians down-regulate their pain empathy response: An event-related brain potential study. Neuroimage, 50(4), 1676-1682.

Dobkin, P. L., Bernardi, N. F., & Bagnis, C. I. (2016). Enhancing clinicians’ well-being and patient-centered care through mindfulness. Journal of Continuing Education in the Health Professions, 36(1), 11-16.

Edwards, R. R., Dworkin, R. H., Sullivan, M. D., Turk, D. C., & Wasan, A. D. (2016). The role of psychosocial processes in the development and maintenance of chronic pain. The Journal of Pain, 17(9, Suppl), T70-T92.

Gleichgerrcht, E., & Decety, J. (2014). The relationship between different facets of empathy, pain perception and compassion fatigue among physicians. Frontiers in behavioral neuroscience, 8, 243.

Gougeon, V. M., Gaumond, I. P., Goffaux, P. P., Potvin, S. P., & Marchand, S. P. (2016). Triggering descending pain inhibition by observing ourselves or a loved-one in pain. Clinical Journal of Pain, 32(3), 238-245.

On the value of doing, being and becoming


An old occupational therapy tagline was “doing, being, becoming”. The meaning of this phrase is intended to point to the tight relationship between what we do, who we are, and how we develop and grow. As I read blogs discussing an increased emphasis on “real world” outcomes there is something missing from the narratives: that intangible quality that marks the difference between colouring in – and painting. Or filling in a form – and writing a poem. Going from room to room – and dancing. Something about expressing who we are and what we value.

Values are things we hold dear. They are principles, or “desired qualities of behaviour”, life directions (not destinations).

The things we do (our actions) are inevitably infused with our values because how we do things (sloppily, carefully, neatly, with gay abandon, enthusiastically) is an expression of what we think is important. To give you an example, I occasionally vacuum my house. Sometimes I’ll do it really thoroughly – because I love seeing a sparkling house. Sometimes I’ll do it with a flick and a promise – because it’s a beautiful day and I want to get out of the house. In both instances I’ve expressed something about what is important to me – I do enjoy seeing my home looking tidy and organised. I don’t have to have reasons for liking my home this way, I just do. When I do a quick flick through my home it’s not because I’m lazy or I don’t care, it’s because I value getting out of the house more than I value having a tidy and organised home on that day.

Values don’t have to be explained. We don’t have to have reasons for holding them. They’re something we choose to place as important.

Why be concerned about values? Well, they underpin our choices. They provide motivation towards some activities, and away from others.

There is a lot of emphasis at the moment on people with osteoarthritis “getting fit” and “doing exercise”. The current approach in New Zealand is to provide community-based programmes to people who have just been declined joint replacement surgery (because we can’t offer surgery to everyone who wants it). Uptake hasn’t been enormous, and to be honest I’m not surprised. People who haven’t been exercisers are not very likely to begin an exercise programme that is undoubtedly going to increase their pain in the short-term (because, duh, movement hurts!) even if the programme offers hope of improved pain and function in the future. Putting this into a “values” and “motivation” perspective, people usually value comfort over discomfort. They value short-term outcomes over long. If they’ve never exercised much, it’s clear that exercise isn’t something they value. To help them engage in an exercise programme, we need to work hard to identify values they hold dear so they’ll look to those to over-ride the value of comfort over discomfort.

An alternative might be to think of different ways of expressing values that will concurrently meet the goal of increased exercise. For example, I don’t enjoy exercise per se. In fact I’ve boasted that my body is an exercise-free zone! To tell the truth, that’s not exactly the case. I just don’t do “exercises”. Instead I dance. I get out of my chair for five minutes every 20 minutes and go do something involving my whole body. I garden. I play with the dog. I go out in the kayak. I walk miles when I’m fishing.

Some people would argue that “there’s no evidence base for this” – but I think we’ve forgotten that exercises are simply a planned and repetitive form of moving our bodies because we don’t do that nearly as much in modern times as we used to even in the early 1900’s, let alone in stone-age times. I don’t think hunter-gatherers “do exercises” except as training for something like war or hunting (to increase skill).

Living life with chronic pain must become a lifestyle. And it needs to be a lifestyle that has some life to it – not an endless series of “things we must do for health”, unless “health” is a particular value. If life is just about “things we do for health” doesn’t that constantly remind people of what they don’t have? That they’re not healthy? Making them patients instead of people? For most people, to be healthy is a means to an end: they want to connect with family, express who they are, contribute to their society, love and be loved. If the person in front of us isn’t into exercise, it’s OUR job to work out what they value and connect what we think is important to what they think is important, or we will simply fail.

Some simple steps to identify values – try these out in the clinic!

  1. When a person attends your clinic, they’re expressing a value, that they care about something. Asking the person “what do you hope from coming to see me” is a pretty common opening line. Try extending this by, after they’ve answered, asking “why is that important to you?” or “what would it mean you could do” or “how would that make a difference to you?”
  2. If a person says they don’t like something, try suggesting to them that they value the exact opposite. eg if they’ve said they really don’t like running, ask them why: “it’s boring” might be the answer. This answer suggests they like variety and excitement in their exercise routine. Then you can ask them what activities they see as exciting – maybe instead of running, they’d enjoy virtual boxing (bring out the Oculus Prime!), or a scavenger hunt, or geocaching.
  3. Use the 1 – 10 “readiness ruler” technique from Motivational Interviewing. Ask the person to draw a line and put 1 at one end, and 10 at the other. 1 = not at all important and 10 = incredibly important. Then ask them to put a cross on the line to indicate the importance they place on doing exercise/healthy living/pain management (whatever you’re asking them to do). Then (and this is important!) ask them why they put that mark so high. This is important – even if that mark is down on 2!! Ask them why they put it there and not lower. This will help elicit important values that you can then use to connect what you want them to do with what they value.

Ups and downs and rocking and rolling


What a week it has been! Not only an unexpected result in the US elections, but also a very large earthquake north of Christchurch, along with a tsunami alert for the entire eastern coastline of New Zealand. Luckily I live far enough away from the shoreline that I didn’t have to evacuate, but the sirens certainly work!

As a result of these events, which I firmly believe are NOT associated except in time, the post I was going to make seems a bit redundant, so I’m going to talk about resilience and what it really means.

For someone who has lived through thousands of earthquakes since September 2010, resilience is almost a dirty word. People living in Christchurch are a bit tired of being called resilient.  You see, it’s not the quakes that are the problem – it’s the aftermath. The “new normal” that we’ve been living through these past years. The thousands of road cones lining almost every street. The constant detours as bits of road are dug up and sewerage, storm water and water pipes relaid. The delays. The ongoing processing needed to work out “where am I?” in the streets we used to know so well.

Resilience is intended to refer to “bounce back”. The thing is, I don’t think we bounce back to exactly the way we were before – we’re irrevocably changed by all experiences, but especially ones as significant as the earthquakes, or even political changes. That we don’t “return to normal” is one of the main reasons I don’t believe reports of people “going back to normal” if pain is completely removed. Why? Because people actively process and make meaning from everything that happens to them – and the meanings that are given to experiences don’t ever completely go.  We know, for example, that we can’t “unwire” nerves that have fired together, so what actually happens is that alternative paths or connections between nerves are formed. This means that under the right circumstances, those original paths will fire again… And people who have experienced chronic pain will, even if their pain eventually goes, know exactly what that pain meant, how it affected them, and I’m certain will be very aware of any new pain that seems to be similar to the one that was just there.

Resilience to me is therefore not so much about “bouncing back” as it is about being able to take stock of what actually IS, determine the paths that lead on in the direction of important values, and then choosing to take those paths. And this can often mean taking detours because old paths aren’t negotiable any more. That can be, and is, disturbing. It can be frustrating, fatiguing and far more demanding than the idea usually invoked by the word “resilience”.

So, in the next days and weeks, let’s think less about being resilient, and more about being flexible – flexibly persisting, if you will. We need to persist to get anywhere, do anything. We need to be flexible about how we get there and how we do what we value. We’ll need passion, but more than passion, we’ll need commitment.

 

Deciding when to say when: pain cure? or pain managed?


I think the subject of this post is the singularly most important yet neglected topic in chronic pain research today. When is it time to say “All this looking at pain cure, or reducing your pain isn’t working, it’s time to accept that pain is going to part of your life.” It’s difficult for so many reasons whether you’re the person experiencing the pain, or the clinician trying to help. It’s also incredibly important for everyone including our community.

Cures for pain that persists are not easily found. One possibility is that the underlying disease or dysfunction has not yet been treated – pain in this case is the experience we have when there’s an unresolved threat to body tissues. Find the source of the problem, treat it, and voila! No pain.

Another possibility is that a new or groovy treatment has been developed – something extraordinary, or something that’s being applied to a different problem or something that’s emerging from the experimental phase to clinical practice.  This means clinicians need to have heard about it, maybe will have had to think hard about their clinical reasoning, have developed skills to apply it, and be ready to talk about it with the person they’re treating.

In the case of much chronic pain, pharmacological approaches simply do not work. Machado and colleagues (2009), in a large meta-analysis of placebo-controlled randomised trials, found 76 eligible trials reporting on 34 treatments. Fifty percent of the treatments had statistically significant effects, but for most the effects were small or moderate … the analgesic effects of many treatments for non-specific low back pain are small”, while Machado, Maher and colleagues found that paracetamol was “ineffective” for reducing pain intensity or improving quality of life for people with low back pain, and although there was a statistically significant result for paracetamol on osteoarthritis pain (hip or knee), this was not clinically important (Machado, Maher, Ferreira, Pinheiro, Lin, et al_2015).  Clifford Woolf said “most existing analgesics for persistent pain are relatively ineffective… the number of patients who are needed to be treated to achieve 50% reduction in neuropathic pain in one patient is more than four – a high cost for the three unsuccessfully treated patients and their physicians” (Woolf, 2010).

Woolf’s sentence ends with an important statement: A high cost for the three unsuccessfully treated patients and their physicians. I have emphasised the final three words, because this might be the most difficult to process. It’s hard for clinicians to say “I can’t reduce your pain”, and “there isn’t a cure”. It’s incredibly hard. And it’s perhaps because it’s so hard that I’ve found very little published research looking at the way clinicians go about telling people their pain is likely to be ongoing. It’s like a taboo – let’s not talk about it, let’s pretend it doesn’t happen, after all it doesn’t happen often.  Really?

Amongst allied health (I can’t bear to use the word “non-medical”), and in particular, physiotherapists, there continues to be a push to address pain intensity and (ultimately) to cure pain.  Innovative treatments such as mirror therapy, graded motor imagery, therapeutic pain neuroscience (we used to call it psycho-education in the 1980’s when I first started working in this area), reducing the threat value of the experience have all come into their own over the past 15 years or so. Even long-standing pain problems apparently respond to these approaches – people cured! Who wouldn’t be keen to try them?

Most of these latter treatments are based on the idea that our neurology is plastic; that is, it can change as we change input and thoughts/beliefs about what’s going on.  Unfortunately, the systematic reviews of trials, and at least one “real world” trial of graded motor imagery haven’t shown effects as great as promised from the early research (eg Johnson, Hall, Barnett, Draper, Derbyshire et al, 2012). There are sure to be people who can point to amazing outcomes in the people they treat. I’m certain that it’s not just the “treatment” but an awful lot to do with the person delivering the treatment – and the treatment context – that might make a difference to outcomes.

But where this all leads me to is who makes the decision to stop chasing pain reduction and pain cure? When does it happen? What’s the process? And what if we treatment providers are actually prolonging disability out of the goodness of our hearts to find a cure?

Let me unpack this a little.

In my research, several important factors led to people deciding to begin flexibly persisting (and getting on with life as it is, not as it was, or might be).

  • The first was knowing the diagnosis and that it would not be completely cured but could be managed.
  • The second, that hurting didn’t mean harm (pain is just pain, not a sign of ongoing damage).
  • The third, that there was something important the person wanted or needed to do to be themselves.

There were other things as well, like having a clinician who would stand by the person even if the person didn’t “do as the Doctor ordered”, and developing their own personalised model or explanation for their pain as it fluctuated from day-to-day. BUT the single most important factor was knowing that the problem needed to be managed because there was no cure. Knowing this meant that energy used chasing a cure was redirected towards learning to live well and be the person they were, rather than a patient or being dominated by pain.

Unfortunately, I think that many clinicians confuse the idea of managing pain with that of resignation to a lesser life. Even the wonderful Lorimer Moseley and crew wrote recently that “CBT literature seemed to focus on this idea of ‘pain is now unavoidable so it is now time to learn how to cope with it.’ He goes on to argue that because a CBT approach focuses on thoughts and beliefs (much like Explain Pain does), it’s not incompatible with the idea that the plastic brain can learn to reduce the threat value even further to ultimately “helping them live well with less pain, or perhaps without any pain at all.”

Here’s my concern: Right now there are many people living with chronic pain who have lost their sense of hope. They’ve pursued pain cure after pain cure, and in doing so, they’ve lost normal routines and habits, lost their usual occupations (activities), stopped being around people, stopped working, and have suffered in the true sense of the word – they’ve lost their sense of self. While I applaud the efforts of researchers like Moseley and colleagues, and I think we must continue to seek treatments to reverse the neurobiological underpinnings of pain, at the same time I think we need to look at the psychological and social aspects of our attitudes and expectations towards experiencing pain. And we must think of the negative effects of our emotional response to seeing another person who is experiencing pain.

Is it so terrible to experience pain every day? Speaking as one who does – despite my knowledge of neuroplasticity – my pain doesn’t represent a threat. It’s just an experience. It’s there. I notice it, I can feel it. And the participants in my research similarly acknowledged pain as present – but it didn’t have the emotional primacy that pain can represent before it is explained. In fact, some of the participants said they’d learned important things because they’d had pain. A lot like having a mood disorder (that must be managed), or diabetes (that must be managed), or heart disease (that must be managed), or respiratory disease (that must be managed), perhaps it’s OK to have pain – that must be managed. Because until our research has advanced a LOT further than it has, there are an awful lot of people living with chronic pain, and who will continue to live with chronic pain. And even more sadly, there are an awful lot of people who don’t even get the opportunity to know that it’s possible to live well despite experiencing chronic pain because we (as part of society) still don’t accept that pain can be present without it being a threat.

Sometimes I wonder at our (clinicians and researchers) blind spot. We just don’t seem to be ready to accept persisting pain as something that can be lived with. Is it time to look at our own discomfort with allowing pain to be part of life?

 

Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: a systematic review and meta-analysis. Journal of Pain, 14(1), 3-13.

Cossins, L., Okell, R. W., Cameron, H., Simpson, B., Poole, H. M., & Goebel, A. (2013). Treatment of complex regional pain syndrome in adults: a systematic review of randomized controlled trials published from June 2000 to February 2012. European Journal of Pain, 17(2), 158-173.

Johnson, S., Hall, J., Barnett, S., Draper, M., Derbyshire, G., Haynes, L., . . . Goebel, A. (2012). Using graded motor imagery for complex regional pain syndrome in clinical practice: failure to improve pain. European Journal of Pain, 16(4), 550-561.

Machado, LAC, Kamper, SJ, Herbert, RD, Maher, CG, & McAuley, JH. (2009). Analgesic effects of treatments for non-specific low back pain: a meta-analysis of placebo-controlled randomized trials. Rheumatology, 48(5), 520-527.

Machado, Gustavo C, Maher, Chris G, Ferreira, Paulo H, Pinheiro, Marina B, Lin, Chung-Wei Christine, Day, Richard O, . . . Ferreira, Manuela L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Woolf, Clifford J. (2010). Overcoming obstacles to developing new analgesics. Nature Medical, 16(11), 1241-1247. doi: doi:10.1038/nm.2230

An allied health response to primary care for musculoskeletal aches and pains


For as long as I can remember, the joke about doctors saying “take two paracetamol and ring me in the morning” has been a pretty accurate reflection of reality – but no more perhaps?

A large review and meta-analysis of randomised placebo controlled trials of paracetamol in back pain and osteoarthritis has found that although paracetamol can provide a limited reduction in pain in osteoarthritis but not at a clinically important level, there is an elevated risk (four times) of having abnormal results on liver function tests (Machado, Maher, Ferreira, Pinheiro, Lin et al, 2015). The meaning of this elevated risk on liver function isn’t clear, but what is clear is the very minimal effect of what has been used as a mainstay drug for two of the most common complaints in the world.

Oh what are we to do? Because if the findings about paracetamol are stunning, add to it the clear evidence of harms associated with nonsteroidal anti-inflammatories, and we have a situation where the two most common front-line treatments for musculoskeletal pain are being strongly questioned. What’s a busy GP meant to do?

As a community, I think health professionals working with people who have musculoskeletal pain need to begin a concerted campaign to show the value of nonpharmacological approaches to managing life with aches and pains. We already have this beginning with some of the physiotherapy social media campaigns – see a physio first! But I think we could add “See your allied health team first”.

What would it mean to see an allied health professional first? And what would allied health professionals need to do to make this a valid option?

I think allied health professionals would need to make some changes to how we assess people presenting with pain – I wouldn’t want to ban the biomechanical, but here’s a question: how well do physiotherapists consider the psychosocial in their history taking? Luckily I don’t need to have the answer because Rob Oostendorp, Hans Elvers and colleagues have done the work for me.  In this study, therapists were observed conducting their first assessment with a new patient experiencing chronic neck or back pain. Their interviews were reviewed against the SCEBS (Somatic, Psychological (Cognition, Emotion and Behaviour) and Social dimensions of chronic pain), and given scores for how well the interviews explored these domains. Perhaps unsurprisingly, history taking for the Somatic dimension (how sore, where are you sore, what triggers etc) was excellent, with 98% including this area. BUT, and you’d expect this perhaps, Cognition was 43%, Behaviour was 38%, Emotion was 28%, and Social was 18%. What this means is that despite the clinicians themselves considering their coverage for all but the social domain as being “adequate”, in reality the only aspect that these clinicians covered well was the most basic area – “what does it feel like?”.

Challenging indeed.

Now, what would happen if we then examined what these clinicians do with that information? Because if we’re not so wonderful at collecting useful information across domains, my bet is that we’re even worse at combining this information to make sense of it – in other words, developing useful formulations.

Unfortunately I don’t have any information on how we as allied health clinicians use the information we collect, but if my experience as an educator and the very limited number of papers discussing formulations is anything to go by, I don’t think we’re doing too well. I suspect we tend to collect information then blithely continue doing what we’ve always done in terms of treatments. And I’m sorry I don’t have the evidence to support my hunch – would someone take this on for a project, please?

I think allied health professionals also need to make some changes to how we present what we do to the general public. While most people in the general public know that physiotherapists help people move, osteopaths are gentle and work with their hands, chiropractic looks after backs and necks – I’m not so sure anyone really knows what occupational therapists might offer, and I’m certain there would be some angst if psychologists were recommended as front line clinicians for musculoskeletal problems!

You see, while we’ve been concerned about a biomedical dominance in musculoskeletal pain, we haven’t been as good at helping the general public recognise that aches and pains are fairly common and often not a sign of pathology. We’ve been pretty poor at showing the value of relaxation, mindfulness and down-regulation as useful ways to deal with pain. We haven’t addressed the need to engage in occupations and activities that are fulfilling and enjoyable and enriching. In fact, I venture to say that we have almost wholly bought into the biomedical model when it comes to how to conceptualise musculoskeletal aches and pains. We are as guilty as anyone for considering an ache or pain as a sign that the person needs to be “fixed” or “mended” or “aligned” or “stabilised”.

I think a more radical approach, and one that allied health professionals can really endorse because there is evidence for it, is that living well involves being fully human beings. That means allowing ourselves to engage in what we love to do, to not only be active but also to relax, to be exuberant and to be peaceful. To think of our lives as a whole, rather than an isolated ouchy hip or knee or neck. And to look to our whole lifestyle as key to living well rather than “treating” the bit that happens to be bothering us right now.

Imagine that – an allied health workforce that puts out the message that life and wellbeing are the products of balancing all the wonderful facets of being human.

 

 

Machado, G.C., Maher, C.G., Ferreira, P.H., Pinheiro, M.B., Lin, C.-W.C., Day, R.O., . . . Ferreira, M.L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: Systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Oostendorp, Elvers, Mikolajewska, Laekeman, van Trijffel, Samwel, Duquet (2015). Manual physical therapists’ use of biopsychosocial history taking in the management of patients with back or neck pain in clinical practice. The Scientific World Journal, 2015, art. 170463, doi: http://dx.doi.org/10.1155/2015/170463

Who are you? The effect of pain on self


My client, let’s call him Al, is a plumber. Or was a plumber. He sees himself as a hard-working, reliable guy who takes pride in doing a job once, doing it well, and not stopping until the job is finished. He’s worked for most of his adult life in his own plumbing business, something he’s very proud of. He’s supported his partner while she’s been at home caring for their two now adolescent boys. In his spare time he goes fishing, loves the outdoors and likes to wander the hills whenever he can.

Al isn’t very happy. He’s been told that his back pain, which he’s had for six months now, is not likely to go away. He’s been having treatments from physiotherapy, had a return to work programme developed by an occupational therapist, tried medications and injections but nothing has taken his pain away. He’s slowly stopped seeing his mates, isn’t sleeping well, hasn’t been out fishing in months, and he’s even had trouble keeping from shouting at his boys.

Al doesn’t sound all that different from many of the men I’ve seen in pain management. Some people call him “unmotivated” because he’s stopped thinking about goals for the future, and does his exercises in a half-hearted sort of way. He doesn’t always attend his appointments. It’s hard to know whether he’s actually doing his home exercise programme. A far cry from the “hard-working, reliable” man who runs his own business.

What’s going on? We could say he’s depressed, and maybe he is. But more importantly, why is he depressed? He doesn’t describe his pain as anything more than a 5/10 where 10 is the most extreme pain he can imagine. He’s still getting an income from his worker’s compensation, he’s still in a loving relationship and in their own home. But he’s not a happy man.

We’ve all met an Al, I’m sure. Superficially he looks fine, but a throwaway comment nails it: “I’m just not myself any more, I want things to be normal”.

Self-concept

All of us have an idea of who we are. A self-concept is a set of representations about who we are, what we do, how we do it, and why we do it. We all have several self-concepts – the “actual” self, the “ideal” self (who we would like to be), the “ought” self (the person others think we should be), the “feared” self (the person we really don’t want to be) and so on (Higgins, 1999; Markus & Nurius, 1986). Our sense of self is based on a collection of memories, a pattern of behaviours that we’ve developed and continue to develop as we aim to be the person we want to be.  Our sense of self guides our choices and the way we do things.

What happens when we can’t do things the way we think we “should”, or the way our sense of self would guide us to? Let’s think about this for a minute.

Al is used to getting up early in the morning, usually about 6.00, so he can get out to the site he’s working on that day and begin work by about 7.30. He prides himself on being at work, ready to go, before his apprentice gets there. He’s always organised, got his gear ready and in the truck with a cup of tea all sorted so he can plan his day.

Since he developed his back pain, Al’s had trouble getting out of bed before 8.00. He’s always tired. He’s not sleeping. He’s the last one in the house to get up, and he can’t even get to the work site until 9.00 because his body is sore and he can’t seem to wake up. He’s getting picked up by his apprentice who keeps giving him grief over not having his gear ready in time. He’s not the man he used to be, in fact, he’s become the man he swore he’d never be, a compensation bludger. He doesn’t like who he’s become. He feels lazy and useless.

Achieving self-coherence by re-occupying self

One of the neglected aspects of pain management is how to help someone deal with the changes to his or her sense of self. Life becomes chaotic when assumptions we make about the world no longer apply. The main concern of someone who is learning to deal with chronic pain is how to make life and self make sense again, to regain some coherence.  When they successfully solve this problem, it’s like all the various aspects of “self” have been reassembled. This is usually a new “self”, one that incorporates pain and the things that need to be done to accommodate pain while still expressing important aspects of “who” he or she is.

The process of learning to live comfortably with a new self is, I believe, a process of re-occupying self. Making a new self that feels recognisably “me”, doing the things that make “me” feel like myself, including some of “my” usual standards and attitudes and interests.

Yet what do we so often do when we doing pain management? We tell people like Al to “relax” and “pace” (Al learned as a child that you don’t stop until the job is done). We tell him he needs to move in certain ways (as a plumber? under buildings, in roof cavities, hauling gear out of the truck, carrying it over building sites). We suggest he needs to not do some things (work for the whole day without a break), but ask him to do other things (carry out a set of exercises three times a day). We say he needs to be back at work, but he doesn’t feel he’s pulling his weight.

What can we do?

I think we need to take some time to understand Al and what’s important to him. Not just the occupations (activities) but also the way he does them, and why he does them. How do they contribute to his sense of self? And then we need to work with him to give himself “permission” to do things differently – for a while. It’s like putting on a temporary “self”, a “rehabilitation” self. We can revisit this “rehabilitation” self as time goes on, and help him identify important values and occupations so he can begin to feel more like himself. Perhaps help him develop a new self that lets go of the old “normal” but includes some of the most important values expressed differently. I call this flexibly persisting – as Antony Robbins says, “staying committed to your decisions, but staying flexible in your approach”.

BTW – if you’d like to help me share this concept, you can! The idea of re-occupying self emerged from my PhD studies, and I want to present this at the Pain Science in Motion Colloquium in Brussels at the end of March. If you’d like to help me raise the airfare to get there (and back!), go to Give a Little and my page “Live well with pain”. Every little bit counts! I’ve had some wonderful people help me get almost half the money I need – will you help me get the rest? Thank you!!

 

Beekman, Claire E., Axtell, Lois, Noland, Kathy S., & West, Jaime Y. (1985). Self-concept: An outcome of a program for spinal pain. Pain, 22(1), 59-66. doi: http://dx.doi.org/10.1016/0304-3959%2885%2990148-4

Charmaz, K. (2002). The self as habit: The reconstruction of self in chronic illness. Occupational Therapy Journal of Research, 22(Suppl1), 31S-41S. doi: dx.doi.org/10.1177/15394492020220S105

Hellstrom, Christina. (2001). Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain. Psychology & Health, 16(1), 111-124. doi: http://dx.doi.org/10.1080/08870440108405493

Higgins, E. Tory. (1999). Self-discrepency: A theory relating self and affect The self in social psychology (pp. 150-181). New York, NY: Psychology Press; US.

Markus, Hazel, & Nurius, Paula. (1986). Possible Selves. American Psychologist, 41(9), 954-969. doi: dx.doi.org/10.1037//0003-066X.41.9.954

What’s in a name? Why getting a diagnosis of chronic pain is important


Sticks and stones my break my bones, but words will never harm me – yeah right! Words have power when we’re looking for treatment, or we’re giving treatments for pain. I’ve written about the staying power of language used to describe back pain here.

But let’s look at a more distinct problem: diagnoses.

Diagnoses are, in the words of Annemarie Jutel, “the classification tools of medicine…” Sociologically, they segment and order bodily states, indicating what is and isn’t normal. “A diagnosis is integral to medicine because it organises illness, identifies treatment options, predicts outcomes and provides an explanatory framework (Jutel, 2009). ”

Diagnoses also give people permission to be ill. Being diagnosed replaces mystery with — well, something else depending on the label.

Getting a diagnosis indicating that chronic pain was not likely to be alleviated was a striking finding from my PhD research, and supported by numerous qualitative studies. What I found, and others too, was that once a person had been told that their pain wasn’t likely to go, that the disease was chronic and couldn’t be cured, it wasn’t long before people began to think about life with pain rather than searching for a cure.

It’s interesting that although I could find a lot of research looking at how doctors let people know they have cancer, or a life-limiting illness, I couldn’t find anything to show how doctors give someone the news that they have chronic pain. Anecdotally I have heard that doctors don’t like to tell people their pain is likely to be there “forever”, but I couldn’t find anything in the journals to explain what it was like to be the doctor in this situation. And yet it must happen – or does it?

Doctors use diagnoses to predict, to organise, to tell them what to do next. Chronic pain, because of its complex and disputed nature (is it illness? is it disease? is it physical? is it mental?) is one of those labels that violates these principles. A diagnosis of chronic pain, in many cases, means the doctor has no more treatment ideas, or at least, a very limited repertoire.

Let’s look at this from the point of view of the person living with chronic pain. For probably four or five years this person will have been looking for answers. Initially he or she will have been given some sort of diagnosis “low back sprain” or “whiplash”. This may have been extended and refined to become “z-joint dysfunction” or “disc bulge”. Maybe this will have been added to with names like “trigger points” or “myofascial pain”. Even “anterior pelvic tilt” or “muscle imbalance”. Perhaps “kinesiophobic”. Findings on imaging will have been negligible – or pointed to with a flourish: “There! There is your problem”.

With each label, a new set of predictions is made. “If you do X exercises, it will come right”. “Here, let me do Y procedure and you take this medication, and you’ll be fine”.

And each time, the person hasn’t responded. The feelings of hope go up with a new diagnosis, then plunge to the depths as the new treatment doesn’t work.

At the back of the person’s mind is the suspicion that this pain isn’t really going to go away. But it’s not until someone “official” makes a diagnosis, confirming the prognosis, that her or she can put away the ideal of “going back to normal” and begin to figure out how to be a person-in-pain rather than a person waiting for a cure. Because until someone official sanctions this suspicion, there still is this sneaking hope that maybe, just maybe, a cure for this pain will be found, if only they get the right diagnosis.

What makes it so hard for doctors to give this diagnosis?

I haven’t identified anything definitive, so this is speculation, but here goes.

Chronic pain is a disputed disorder. It lives between physical disease and mental illness. Often no physical cause can be found, and because of the legacy of Descartes, an assumption is made that therefore it must be “mental” or at the very least “biopsychosocial”. But not biopsychosocial in the way that I understand it, more of “psychosocial-because-I-can’t-find-the-real-problem”.

I also think doctors (and other health professionals) have a hard time admitting they can’t fix something. It’s difficult to say “here’s the boundary of medical science”. This is why so many people spend their lives looking for cures for cancer, spinal cord injury, rheumatoid arthritis, multiple sclerosis etc.

I think it’s emotionally demanding work. To tell someone “you have this chronic pain, you’ll need to learn to live with it” can provoke anger, grief, despair, distress. That’s not easy – especially if you’re a doctor who is a little fearful that he or she might have missed something. “What if there really is something treatable?”

It’s also an invitation to a long-term healthcare relationship. People with chronic pain don’t go away, they’re not palliative care. To some GP’s, people with chronic pain are SO difficult to deal with. They turn up at all hours, they’re distressed, they’re depressed, they’re needy, nothing works. Not the kind of patient a GP really wants to deal with.

Finally, I think it’s very difficult to be a GP who sees people with chronic pain because, seriously, what can you do for them? There are very few places for people with chronic pain to be referred. Few treatments. Nothing is very effective.

It’s like opening Pandora’s box. Once a diagnosis of chronic pain is made, this person will need to take time to look at their life and make changes. That’s terribly challenging work. Not really what a GP’s practice is for. Making life changes is personal, individual, takes time and people often fail and need to repeat the process. This is the nature of chronic disease management – it’s not about medication, it’s about examining and exploring what will help this person feel well.

And what did my research show? That those practitioners who did the “little things” like personalising an exercise plan, like agreeing to stick with the person as he or she finds ways around or with the problem, who phoned or sent a text to see how the person was getting on – these made all the difference.

So, one more piece of the puzzle of helping people live well despite their pain is letting them know they have chronic pain, that it won’t go away completely, and conveying your belief that they have the resources to live well and you’ll be there beside them. If that’s not all about a therapeutic relationship, then I don’t know what is.

 

Engel, George L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129-136. doi: http://dx.doi.org/10.1126/science.847460

Jutel, Annemarie. (2009). Sociology of diagnosis: a preliminary review. Sociology of Health & Illness, 31(2), 278-299.