Catastrophising: Nuance is needed

The last two posts I’ve written here and here have explored differing perspectives and current debate about the term catastrophising – and I hope I’ve been clear that I don’t dispute the usefulness of (or the accumulated data about) a construct that is associated with poor outcomes across so many pain experiences. I just don’t find the term and its definition lands well with people living with pain, and the way it’s discussed amongst some clinicians is problematic. This post is my take on a nuanced approach.

The term catastrophising is defined as ‘an exaggerated negative mental set’ (Sullivan et al., 2001). Exaggerated, according to Oxford Languages dictionary, means ‘regarded or represented as larger, better, or worse than in reality.’ This means someone, somewhere needs to define ‘reality’. The argument presented by Crombez et al., (2024) is based on the complete lack of external referent for how someone should experience their pain. Pain is, as we all accept, a subjective experience. We have no external referent for how pain ought to be experienced: its intensity, qualities and meaning are individual. What we do have are inferences about ‘how bad’ pain is based on what we observe in another person, and our interpretation of what we might be like in the same situation. In other words, we use social cues, compare these with our social norms, and make a judgement.

Given we know that women, people of colour, those who don’t speak the dominant language, people who are ‘different’ and especially when there are intersections between these ‘differences’ – are likely to have pain intensity under-estimated (see this post). If the social norms we draw on are skewed, we need to ask how valid are the judgements made based on them.

Nevertheless, catastrophising has been associated with greater distress, disability and poor recovery, so what are we to do?

If we unpack the three subscales of the Pain Catastrophising Scale (Sullivan et al., 1995) they consist of (1) ‘ruminating’ or brooding on/difficulty disengaging from thoughts about pain; (2) ‘magnifiying’ or thinking the worst about pain; and (3) ‘helplessness’, or feeling there’s nothing that can help.

I’m pretty sure we’ve all had times when it’s been hard to stop brooding on a problem. Particularly in a situation of uncertainty, or where we’re trying hard to solve the problem but can’t find a way through. The ruminating subscale looks a lot like, as some authors describe it, ‘misdirected problem-solving’ (Flink et al., 2012). Doing what human brains do – setting out to solve something that maybe can’t be solved. ACT has a lot to offer in this regard with strategies for cognitive defusion, willingness and present-moment awareness.

When it comes to thinking the worst, let’s step back to see how people acquire their beliefs and feelings about pain. I ask my 5th year medical students to rate how much pain they expect to feel when asked to hold their hand in 4 degree C water for up to two minutes. I then ask them how they made that judgement given most people won’t have done it before. Their answers are revealing: they’ve seen the Wim Hof videos, they’ve jumped into a cold pool or river, some even go winter sea swimming. They’ve watched other people do it. They’ve gulped an icy cold drink and got ice-cream headache. They make inferences based on what they know, either from direct experience in similar situations, or from watching others.

Now ice water isn’t comfortable, and the students are doing this knowing that: (1) I can’t harm them because ethics; (2) it’s only for two minutes; (3) they’re in a room with all their peers but their responses are anonymous. Quite different from clinical situations where: (1) people don’t know that their pain isn’t something nasty; (2) the pain may continue for quite some time; (3) the person may be alone and their responses about pain intensity will influence treatment decisions.

People acquire their understanding about pain from media, seeing other people having similar experiences, having family members with similar experiences, looking at the interwebs, their own past experiences… They may have heard health professionals tell others (or on social media) ‘5 things making your back pain worse’ (real example, but no link – let’s not share unhelpful stuff like ‘…it is also crucial that we AVOID THE WRONG THINGS that would aggravate your pain and make it worse!). And given humans unrivaled skill to associate concepts (eg click) it’s no wonder they consider pain is terrible.

It’s not surprising people fear pain. While I don’t think we have an ‘algogenic’ society, we do have a lot of very unhelpful messaging about pain and the need to get rid of it.

Pain always holds meaning. It’s the meaning of this experience I think people are communicating when they respond to the ‘magnifying’ items on this subscale. Meaning develops from personal experience and from these external sources. Meaning doesn’t arrive fully-formed. It has a back story.

Finally, the ‘helplessness’ subscale measures the sense of being unable to do anything to help yourself. In the absence of a diagnosis (or when a diagnosis suggests only ‘experts’ can help), when the future is uncertain, when what is read about and available in the community suggests quick fixes are the thing but then they don’t work for that person, it seems reasonable to not know what to do, and feel stuck.

To summarise, we don’t have a objective measure for ‘how bad’ pain is, because it is a subjective experience with meaning to the individual experiencing it. We tend to judge another person’s demonstration of their pain in the way we think we would if we were in the same position (while retaining our privileged understanding). We live in a community where pain is routinely considered either easy to fix (with these simple steps) or incredibly difficult to fix (you’ll need surgery, hard core medications, or a life of misery). And people don’t know what to do in these situations because it’s outside of their experience (or it hasn’t gone well in the past).

I haven’t yet discussed the pejorative tones in which the term ‘catastrophising’ is used by some clinicians. This attitude is not something that can be easily ‘educated’ out of people because it arises from deeply embedded ideas of mind and body, and negative attitudes about those who experience mental ill health. These ideas are perpetuated in clinical education where nociceptors are discussed but not the ’emotional’ experience that is integral to the definition of pain. It’s furthered in medico-legal and compensation settings. Questions about ‘motivation’, ideas that clinicians can ‘detect malingering’ or ‘true effort’, notions that what’s seen in clinic represents daily life, ignorance about our own human biases … these are such complex and ingrained attitudes amongst people who hold incredible political power – and after more than 30 years consistently working to shift the dial it’s over-simplifying to suggest education is the fix.

The final point that came up for me when I read Sullivan and Tripp’s paper (2024), was the suggestion that the term should be used only by professionals with certain training, and only to other health professionals. This smacks of a certain elitism. People read their clinical reports, and they’re entitled to. The reports are often sent to other people within the health system – including insurers who may not have any clinical training whatsoever. FWIW I do agree that clinicians using the term NEED to learn about what it actually measures. Catastrophising is in the public domain, Pandora is out of the box. And as I keep harping on about: Nothing about us, without us. For person-centred care, people with pain are part of the conversation. Our voices matter and we are the people being judged. If treatments are intended to help us live well, all clinicians need to remember that we are not inert slabs of flesh. A preferable term to replace ‘catastrophising’ might be ‘pain-related distress’ or ‘pain-related worrying.’ These seem more apt than ‘exaggerated negative mental set.’ Normal people dealing with an abnormal situation. Retain the construct of difficulty disengaging from thoughts about pain; understand how helplessness comes about; and remove the term ‘exaggeration’ from the lexicon.

Crombez, G., Scott, W., & De Paepe, A. L. (2024). Knowing What We Are Talking About: The Case of Pain Catastrophizing. Journal of Pain, 25(3), 591-594. https://doi.org/10.1016/j.jpain.2023.12.014

Flink, I. K., Boersma, K., MacDonald, S., & Linton, S. J. (2012). Understanding catastrophizing from a misdirected problem-solving perspective. British Journal of Health Psychology, 17(2),

Sullivan, M. J., Bishop, S. R., & Pivik, J. (1995). The pain catastrophizing scale: Development and validation. Psychological Assessment, 7(4), 524.

Sullivan, M. J., Thorn, B., Haythornthwaite, J. A., Keefe, F., Martin, M., Bradley, L. A., & Lefebvre, J. C. (2001). Theoretical perspectives on the relation between catastrophizing and pain. Clinical Journal of Pain, 17(1), 52-64.

Sullivan, M. J. L., & Tripp, D. A. (2024). Pain Catastrophizing: Controversies, Misconceptions and Future Directions. Journal of Pain, 25(3), 575-587. https://doi.org/10.1016/j.jpain.2023.07.004

“Exercise” – what does it do for people living with persistent pain?

No, I’m not going to assemble a bunch of papers and point out the effect sizes of exercise on pain and disability! In fact, I’m not even going to point to much research in this post. I want to pose some questions and put some thoughts out for discussion.

See, the people I’ve seen over the years who live with pain have, by and large, not been great ‘exercisers’ before their pain came on, and many haven’t really changed their lifestyle a heap since their pain either. In fact, there is research showing that people with chronic pain don’t change the overall quantity of their activity very much – but instead, change the pattern of that activity over the course of a day (Huijnen et al., . 2011; Tynan et al., 2023). Nevertheless, because of the influence of the ‘deactivation’ idea, along with the pain-related fear and avoidance model, and of course the benefits of exercise on other aspects of health, there would be very few people living with chronic pain who haven’t been prescribed some sort of exercise intervention.

I’ve made my views on exercise known many times – but once again, for the avoidance of doubt, I think movement is awesome, healthy, integral to living well and something to be done regularly and with enthusiasm. I’m less comfortable, however, with people being obligated to ‘do exercise’ with unhelpful explanations, the inflated promise of effects, and in forms that simply do not fit in with the complex lives we all live – now and over our lifespans.

Some of the unhelpful narratives include: that exercise will ‘take away the pain’; that exercise will improve functioning elsewhere in life; that symmetry is crucial; that core strengthening is needed; that ‘form’ must be ‘perfect’ (whatever that is); that progression should follow some formula (and not based on the person’s response to it); that one type of exercise is ‘the right one’; and that exercise must be supervised by a clinician or it doesn’t work. Bah humbug.

So. We do need to move and do that regularly. That’s a given. There are loads of ways to move and people who regularly meet the WHO exercise recommendations do this in a myriad of ways that look a lot like dance, walking, cycling, gardening, playing with the dogs and kids, leaping into the sea or a pool, doing housework, doing hobbies… all the things. Movement and life go together.

What does exercise offer people with pain?

Well, to me exercise is a simplified context for learning what feels OK and what doesn’t. Exercise (or movement practices) don’t have all the contextual factors that make life difficult. For example, when I’m gardening I need to factor in the ambient temperature, the time of year, the lifecycle of my plants, their needs for compost and water and pest removal. I also need to find a suitable time to garden, assemble all my equipment, be aware of all the other things I need to get done in my ‘spare’ time, and what needs doing in my garden. If I’m working alongside other people, I need to bear in mind the bits they want to do, the bits that need doing, and the bits I like to do. We need to coordinate our efforts so we don’t all go to do the same thing. Gardening is always influenced by context.

If, as I suspect, movement practices offer a simplified context to do movement with a person who helps me feel safe (I won’t damage myself when a therapist is present), who can encourage me to nudge in to movements I’m not confident about, who can offer suggestions about how I might change the way I go about doing a movement, or the quantity – then the ‘work’ is much less about the form of movement I do but much more about the ‘work’ the clinician does. And clinicians, it probably isn’t to do with the form or quality of my movements, but so much more about how YOU go about guiding ME to experience what my body is feeling like while it’s doing the things.

If my hunch is on the money, then the skills so often relegated to ‘oh you’d better do some communication stuff’ or ‘those soft skills’ might actually be the most critical ones a clinician can develop. Because, so it’s been found, words are sticky and have power (O’Keeffe et al., 2022) – and the more people listen to the words spoken in a clinical context, the less able they are to notice their own body responses (we can’t do divided attention very well). And those words spoken can act as life-long rules for behaviour (Barnes-Holmes & Harte, 2022). We know this simply by listening to the narratives of people describing no longer doing things they love on the basis of an authoritative word from a surgeon about the state of an osteoarthritic joint, or back pain and the risk of ‘damage’…(eg Stenberg et al., 2014; Christe et al., 2021).

What skills might be needed to facilitate awareness and build confidence?

Guided discovery is an approach used in psychotherapy – this involves the clinician obtaining data (information) from the person using open-ended questions, then guiding the person to pull that information together in surprising ways, testing assumptions and helping them to notice what they already know to be true. In therapies such as graded exposure for phobias, guided discovery helps people notice and be OK to nudge into discomfort, waiting for the symptoms of anxiety to reduce, and then noticing that this has happened even in the presence of the thing the person fears. From ACT, noticing without judgement is an integral process for people to tune in to sensory experiences so they can be in the present moment and become aware of the in-real-time impact of their actions.

I suspect the same skills might be critical for effectively guiding learning in movement therapies. That is, helping the person nudge into previously worrying movements, guiding them to notice what happens, remaining engaged in the movement enough times that the alertness level drops, and then drawing the person’s attention to how that feels. The therapists work is all about guiding the person to notice their own sensory experience, and of course, in structuring the movements so that the intensity and complexity suit where the person is at.

What this kind of approach won’t do on its own, is help that person transfer their learning undertaken in the safe clinic area with a safe clinician, into the complexity of daily life – and this is where occupational therapists should be adding their input. Because learning doesn’t transfer readily from one context to another without this process being structured, and without lots of repetition and exposure to lots of different contexts.

Helping people gain confidence in what their body feels like when it’s moving is a ‘transferable skill’. Learning to trust your own body experience allows you to experiment with different forms of movement practice. Different movement practices allow us to keep moving throughout our entire lives, in different ways to suit time, equipment, location, goals, money and motivation/interest.

You see, I don’t think movement or exercise is much about fitness or other physiological factors, except that when someone has a pain problem, it’s likely to mean a much bigger reaction from the nervous system (ie pain payback or pain flares) than in everyday folks. To counter this, we need to build confidence, awareness, willingness to go gently into these uncomfortable experiences, and then to sustain practice in all the life contexts so we can be able to do the things exercise and movement are supposed to promote: healthy living. If exercise doesn’t contribute to healthy living (note the emphasis on living), then all the health in the world isn’t worth it. If I’m healthy but don’t do the living I want to do, why that sounds a lot like being in prison.

Barnes-Holmes, D., & Harte, C. (2022). Relational frame theory 20 years on: The Odysseus voyage and beyond. Journal of the Experimental Analysis of Behavior, 117(2), 240-266. https://doi.org/10.1002/jeab.733

Christe, G., Pizzolato, V., Meyer, M., Nzamba, J., & Pichonnaz, C. (2021). Unhelpful beliefs and attitudes about low back pain in the general population: A cross-sectional survey. Musculoskelet Science and Practice, 52, 102342. https://doi.org/10.1016/j.msksp.2021.102342

Huijnen IP, Verbunt JA, Peters ML, et al. Differences in activity-related behaviour among patients with chronic low back pain. European Journal of Pain 15(7):748-755, 2011.

O’Keeffe, M., Ferreira, G. E., Harris, I. A., Darlow, B., Buchbinder, R., Traeger, A. C., Zadro, J. R., Herbert, R. D., Thomas, R., Belton, J., & Maher, C. G. (2022). Effect of diagnostic labelling on management intentions for non-specific low back pain: A randomized scenario-based experiment. Eur J Pain. https://doi.org/10.1002/ejp.1981

Stenberg, G., Fjellman-Wiklund, A., & Ahlgren, C. (2014). ‘I am afraid to make the damage worse’ – fear of engaging in physical activity among patients with neck or back pain – a gender perspective. Scandinavian Journal of Caring Sciences, 28(1), 146-154. https://doi.org/10.1111/scs.12043

Tynan, M., Virzi, N., Wooldridge, J. S., Morse, J. L., & Herbert, M. S. (2023). Examining the Association Between Objective Physical Activity and Momentary Pain: A Systematic Review of Studies Using Ambulatory Assessment. Journal of Pain. https://doi.org/10.1016/j.jpain.2023.10.021

Villatte, M., Villatte, J. L., & Hayes, S. C. (2016). Mastering the clinical conversation: Language as intervention. Guilford Press.

Living with pain is social: The Chronic Pain Couple book review

Over the past year or so I’ve kept returning to ‘the social’ part of our multifactorial pain experience.* Pain can be extraordinarily isolating, and our current sociopolitical emphasis maintains a focus on ‘what the individual should do.’ In New Zealand, our accident compensation legislation is a no-fault, 24/7 everywhere, all-the-time innovation but it falls short in critical areas. One is the continued focus on ‘physical findings’ to validate a diagnosis (and to show that the resultant impact on an individual is entirely due to a personal injury caused by accident), and the other is the attention only to the person who has sustained the injury.

The focus on individuals has led us to therapy for chronic pain targeting outcomes such as returning to work, independence in the home, and reducing the cost of compensation. Important outcomes, believe me. But what hasn’t been fostered nearly as much is – relationships, intimacy, whanau, interdependence, joy and meaning in therapy. This has left a huge gap for people living with pain who may not have very much attention paid to their relationship with their loved ones. And bringing your partner/lover into therapy? Yeah nah. Let’s just say that New Zealanders are a reserved bunch.

Karra Eloff writes from her own experience and the wisdom of a lot of research in her book The Chronic Pain Couple. Karra lives with chronic pain (spondyloarthritis) so she’s informed by her personal knowledge having worked through the impact of her pain on her own life and relationships. While not everyone will have such an adaptable and supportive person in their life, I was struck by the gentle encouragement in her suggestions for practical actions the person living with pain and their partner can take. Her writing is honest and warm, relatable and clear.

Let’s dive into the structure of this work.

The first part is about pain – how pain is the person’s experience, unshared and unclear. How others in our life (I’m writing as the person with pain here) may be unaware of even simple things about what we do to manage our pain. Even pain intensity that varies isn’t something I communicate to my wonderful man – I keep it to myself, unless it’s really in a flare-up. Karra describes needing to be in hospital with a flare-up and reaction to a new medication, and finding her husband didn’t know what her usual regime was. This first section works through some ideas about chronic pain as ‘over-protection’ and while some people will quibble about the particular orientation she brings I would hope people can read beyond this and on to the heart of what she’s communicating. Because the heart is to know that pain is isolating and we need to communicate on at least three points as a start. One is to communicate what we need (because no-one is a mindreader); then communicating our love (understanding what we prefer – and working out how this can be done in the presence of pain); and finally, how to disagree without breaking your heart.

Practical takeaways from this section: (1) letting your partner know the practical help they can offer you and having a kind of signal so they know when they should. For example, I get brain fade after a day of people contact, so my partner knows it’s a good idea to grab a simple meal, or takeaways, so I don’t have to think ‘what’s for tea tonight?’ (2) create structure around how to talk about your pain and your needs – making it a special, dedicated time that’s not when you’re already cranky! (3) perspective taking when you’re disagreeing – and not responding in the heat of the moment. Explaining why you make a decision, and offering alternatives, or at the very least, exploring how else the two of you can connect.

Part two examines pain and the impact on mental health (and vice versa), as well as looking at trauma and life orientation. Understanding that assumptions we develop when young do have an impact as we become adults; unpacking the effect of early life (and later life) trauma on both the nervous system and our desire to protect our selves; and learning how to probe these assumptions are all integral to learning to love and cherish yourself – and then others. Karra uses a conventional CBT approach to working with assumptions and core beliefs and while this isn’t my preference, her words are more compassionate than many CBT resources I’ve read.

She then moves on to part three on mental medicine. I’d quite like to call this ‘opening up to yourself’ and viewing both you and your partner through a lens of ‘we’re both probably struggling with something but our somethings are different.’ It’s a lot about seeing the impact of pain on both sides – compassion for yourself, and compassion for your partner. Seeing that both of you probably had an idea of what life together would look like – and pain has slipped in where it wasn’t expected. Even if you met your partner after you developed pain! The last chapter in this section looks at what you can do to support your partner – yes, you the person with pain. Because relationships are reciprocal, interactional, and both parties add to the whole. Karra goes on to look at how you can together generate low energy but life sustaining ways to build on the positives in your relationship. Such practical actions!

The fourth part looks at sex and intimacy and why it matters – and how to work together to create a fulfilling intimacy when you’re sore. Sex and intimacy is not something we’re often taught – and knowing how desire ‘works’ and how pain can interfere with desire is powerful. Practical steps in this section include having good discussions with your partner about what feels good and what doesn’t, about prioritising intimacy, about starting the day with ways to build a bond (no, not just sex), about knowing why intimacy and sex are important…and being OK with knowing that sex and intimacy might not be about orgasm, but about feeling valued, destressing, pleasure, to have adult time, to play… and using these values as ways to build your willingness for intimacy even when you’re sore. I like that Karra’s suggestions are small, steps that don’t require a total relationship overhaul (but might lead to one!), and show both sides of the pain couple interaction.

Finally, she turns to the ‘new normal’ – building lifelong ways of living alongside chronic pain, in a relationship, and moving towards richness and, as she puts it, joyfulness and having a remarkable relationship. She doesn’t define what your remarkable relationship looks like – that’s your job, and she doesn’t mince words about the challenges – and yet I’m left feeling like she’s standing right beside me as I consider my relationships.

In case you didn’t realise, I highly recommend Karra’s book, it’s a lovely work that sheds light on an area of living with pain that just doesn’t get much attention. If you see people living with persistent pain, this is a good book to read. If you are a person living with pain – this book offers some ways through, together with your partner.

Final note: the book is not super expensive (NZ$44.99 from the publisher, plus, I’m guessing, shipping). It’s hard cover and the paper is deliciously smooth and creamy. Not a lightweight paper that’s prone to tearing. It’s also available on ebook and audio (and Karra tells me reading the audio was a loooooong process!).

*I could use the over-used term ‘biopsychosocial’ or even ‘sociopsychobiological’ but let’s not get into that hackneyed discussion!

Circling back to supported self-management

I’ve been writing a bit about supported self-management over the last few months. Partly because it’s topical given that medications and exercise offer very small reductions in pain and disability, and people do have lives outside of swallowing a pill and doing 3×10 reps! And partly because it is what we end up doing. It is the bulk of what people living with pain use to have lives.

Self-management refers to a broad range of strategies people with pain use in their daily lives to help them live well. I’m aware of the multiple definitions that exist for self-management, and that the level of agreement isn’t great – and of course, throughout my discussion I always consider self-management to be supported. Supported by relationships with health professionals, friends and family, and within healthcare systems. Or perhaps not so much the latter.

Drawing on Nicholas & Blyth’s commentary from 2016 (because it’s pretty good), the key elements of self-management are:

• being actively involved in daily actions to manage the effects of pain
• knowing about pain and the options for managing pain
• monitoring signs and symptoms and responding to these
• collaborating with health professionals and others to develop ways of living around pain

From my perspective, some of the things that seem to be important in self-management are:

• Knowing how to set limits on demands/obligations from others. This is important because, whether we like it or not, pain does limit how much we can do. I’m not certain this is always considered, especially when I hear of people with pain being asked to do far more than I am expected to do. It is reasonable for people with pain to say no! Being able to say no shouldn’t come with a host of negative consequences like ‘you’re being noncompliant’, or ‘you’re not trying hard enough’, or ‘you’re just using our pain as an excuse to get out of things.’ Unfortunately, for those with an accident insurance claim, the consequences of saying no can be pretty harsh.
• Knowing how to adapt, adjust, tweak or vary anything being suggested. This includes mindfulness, exercise, medications, pacing… And this one is a doozy because there are some very shouty people who think that their way to [insert strategy here] is The Way. If we had agreement we’d all be seeing good results, right? We don’t, and we see so many different ways of doing [insert strategy here] that I think we can be pretty confident that there is no One Way to do any of them. Contextual sensitivity is needed. What this means is being able to adapt, adjust, tweak or vary the things to suit the purpose and the context. “How it functions in this context” is likely more important than “what it looks like in a healthcare context”.
• Being able to feel the effect. To know what it feels like, and use this as the guide for action. No I don’t mean only the short-term effects (resting does feel great at times) but over the longer term. Asking: Does this [insert strategy here] give more options, allow me to move towards the things that matter, adapt and adjust over time? Helping someone feel what it feels like so they can use that ‘body knowledge’ in any context probably means less talking from the therapist, and more guiding to notice and reflect. Now that’s a set of skills many therapists have never been taught, particularly movement therapists.

I’ve written before about the way ‘the social’ is often ignored in a ‘biopsychosocial’ approach to pain. The factors that fall into the social are the very ones those of us living with chronic pain most have to deal with. The social impacts on how much we’re listened to by health professionals and others, whether we can say no without harsh consequences, how OK it is to adapt, adjust, tweak or vary how we do anything (including the things clinicians suggest), how much notice we take of our own body (because we’re often being talked at, taking our attention away from what we’re actually experiencing), and even on whether we can get to have a decent sleep (I am that person sneaking away from a social event and snuggling down in my bed at 9.30pm!).

Social factors also popularise what’s on offer, how much these things cost, who is able to offer them, and whether they fit in our lifestyle. Our gender, age, ethnicity, cultural background, religion, socio-economic status, education, the type of work we do – all of these are social. And they make an extraordinary difference to how we can employ self-management. A study by Webster et al., (2022) examined what people with chronic pain do in their health work in the context of having difficulty making ends meet.They found there is work in managing chronic pain alongside poverty and subsistence, trying to legitimise their needs (and themselves), attempting to adhere to biomedical models (even when it is clear that social contextual factors are hugely contributing), and navigating multiple diagnoses. The authors call this ‘chronic struggle’ – a term that resonates with my experiences listening to people with chronic pain as a clinician. The experiences they describe are ‘the social’ – and clinicians, we need to listen.

If you’re working in a supermarket job, you can’t just stop the queue of people at the checkout to go do a stretch and pace yourself. The skills needed to make that happen are in those three self-management skills: to safely say no, to be able to adapt (etc), and to use how it feels to guide actions. The social aspects of doing self-management take grit, confidence, great communication skills, and quite a lot of personal power. And for many people with chronic pain, being assertive and taking control over what is expected from you is high risk.

The social is about participation, if you’re going to use ICF (WHO – ICF). Participation is all about being able to do the things – in ICF-speak it’s “… involvement in a life situation… Participation restrictions are problems an individual may experience in involvement in life situations.” and goes on to say “…Because the current environment brings in a societal context, performance as recorded by this qualifier can also be understood as “involvement in a life situation” or “the lived experience” of people in the actual context in which they live.”

Self-management, because it is about daily life, is inevitably about participating in life situations. It’s up to health professionals to learn about a person’s real daily life contexts to make sure that what is suggested as ‘self-management’ can actually be done, and to help people with pain develop those three skills I’ve suggested at the very least. And for all of us to push back on attempts to limit our ability to do those without kickbacks.

Nicholas, M. K., & Blyth, F. M. (2016). Are self-management strategies effective in chronic pain treatment? Pain Management, 6(1), 75-75–88. https://doi.org/https://doi.org/10.2217/pmt.15.57

Webster, F., Connoy, L., Sud, A., Rice, K., Katz, J., Pinto, A. D., Upshur, R., & Dale, C. (2022). Chronic Struggle: An Institutional Ethnography of Chronic Pain and Marginalization. J Pain. https://doi.org/10.1016/j.jpain.2022.10.004

The words we use to talk about pain

Are you a ‘pain sufferer’? A ‘pain warrior’? A ‘pain victim’? Do you ‘ache’ or is it a ‘stabbing’ pain? Do you even know what ‘lancinating’ means?

And let’s add in: are you a ‘catastrophiser’? Has your pain been developed through ‘chronification’? Is your body ‘unbalanced’ or ‘asymmetrical’? Do you ‘comply’ or ‘adhere’? Are you ‘motivated’?

The ways we talk about pain are weird! We blithely use words, us clinicians and researchers (and yes, people with pain) without perhaps, really coming to grips with what the words mean – or what they say.

One of the themes in qualitative pain research is the idea of ‘pain as indescribable’ – pain is invisible and can’t be put into words (Munday, et al., 2021) and yet as clinicians we’re constantly trying to find out ‘what it feels like’ and ‘how much it hurts’. So people with pain (and clinicians) turn to metaphors and by using metaphors attempt to bridge the gap between something known and the unknown/indescribable. The language and phrases we all use reveal some uncomfortable attitudes.

There have been many, many papers discussing the ‘battleground’ metaphor in medicine (e.g. Kirmayere, 2008; Loftus, 2011; Neilson, 2016). The ‘war against’ [disease of the time] has apparently been used since the 17th century (Diaz Vera, 2012; Cohen, 2010), with ‘the enemy’ being ‘targeted’ to ‘eradicate’, ‘annihilate’, ‘attack’, ‘battle’ and ‘destroy’ (Johnson, 2023)- and of course, to overcome. But what of the person? For some reason I keep thinking ‘the treatment was successful, but the patient died.’

And so we have ‘pain killers’ and ‘pain attacks’ and ‘fighting pain’ – and in a depiction of winning or losing, when the ‘battle’ isn’t ‘won’ (ie the pain remains), who are the prisoners of war? Are they ever released?

I’m not covering any new ground in this post, just reviving some of the issues there are with this ‘battleground’ metaphor.

But there are other battlegrounds. Hidden tensions that people living with pain talk about, but very quietly. Here are some:

• the tension between attending to pain management and Doing the Things, and also trying to fulfil the normal daily life roles and responsibilities that come with living. Balancing the obligation (and desire) to do rehabilitation with the obligations and needs of partner, family, employer – oh and to have some time and space to just BE for yourself.
• the challenge of balancing a focus on resuming work and doing exercise with doing the things that are meaningful and make life worth living. Wanting to and in many cases having to focus on returning to work (because income matters, and because compensation systems obligate it) and the exercise programme but not having time to play the guitar or cook a meal, or even have sex because it’s not the focus of pain management.
• the challenge of looking good enough to feel good, but not good enough to lead people to think you’re completely well; then being told ‘you look so well’ and therefore not ‘suffering’
• the difficulty with wanting to have some say in your care but being told you’re ‘noncompliant’ when you say you don’t want a treatment you’ve tried before (didn’t work), or that doesn’t fit with your life.
• the task of being the only one present at each healthcare appointment, but not having the energy or voice to point out the discrepancies between what’s said verbally and what’s documented – and worse, having what’s documented interpreted by someone with a particular perspective about you and what you ‘should’ do/be/get
• the need to come up with future goals for therapy when just getting through each day is a challenge. Worse – coming up with goals when you’ve only just met the clinician! And not everyone sets goals….

The job of being a person receiving treatment for chronic pain is complicated. For clinicians, the experience of being on the receiving end of treatment within a healthcare system is eye-opening. The uncertainty of the outcome – the foreign processes, the language, the power dynamics, the context of ‘care.’

In a fascinating paper, Miglio and Stanier (2022) discuss the need to go beyond words, suggesting that creative expression might be one way for people with pain to express their experience in clinical encounters. Creative expression being one way to develop an ‘intersubjective’ recognition of pain. Or is it? I look at a painting and it speaks to me of one thing. Another person looks at the same painting and it speaks to them of something quite different. Can we share the meaning? Miglio and Stanier are interested in ‘how shared understanding can facilitate transformation of painful experiences for the better – especially when the meaning is co-developed within a group dynamic of shared power to address marginalisation‘ (p. 8). Because one of the themes often found in qualitative pain research is this sense of utter isolation, of separation from normal life, other people, agency and alienation. Their point is that making sense of pain might occur in a clinical setting, but mostly the process of making sense of pain occurs well beyond the four walls of a therapy office.

What does all this mean? As a person living with pain, I don’t usually think about how I describe my pain. When I have tried, I feel inadequate. I attempt to come up with something unique and hopefully that doesn’t increase my distress – something neutral. I do this deliberately because I know that when I do talk about my pain in illustrative language it increases my attention and concern about it. And I risk being called ‘a catastrophiser.’

I think of numbers on a pain scale as a communication transaction – if I say this number I might be taken seriously, if I say that number I’ll be disregarded. I think the same of goal-setting – if I say I’m looking for this outcome (say, the ability to work), we can agree but if I say I’m looking at this other outcome (say, the ability to go fishing) I’ll probably be told it’s not important. For my hip and groin pain, having full RoM means I’m fine – too bad that in the morning I have trouble rolling over to get out of bed.

I’m struggling to really convey the position I hold as a person living with pain, and as an academic and clinician and researcher. The linguistic tangles we have because pain is an experience, not a thing and yet we need to communicate about the experience in ways that others can attempt to understand. Imperfectly. So if pain is, as some have said, ‘an output of the brain’, how imperfect is this? And is it any more imperfect than pain as a number, or pain as an image (pain pathways), or pain as a disease, or ‘an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.’

All I can say for now is that pain is that the words and images I use to describe my pain have developed within my sociocultural context, and with an eye to the impact my description might have on those around me, and myself. That other’s opinions of how well my description ‘works’ are irrelevant – the workability of my description depends on what I’m wanting to achieve by it. And right now, I want to notice the location and quality and intensity of my pain, and make room for it so I can be with it and be curious about how it might play out today, instead of resisting or avoiding.

Cohen E. The modulated scream: pain in late medieval culture. London: University of Chicago Press Ltd (2010). 384.

Díaz Vera JE. When pain is not a place: pain and its metaphors in late middle English medical texts. Onomázein. (2012) 26(2):279–308. doi: 10.7764/onomazein.26. 10

Kirmayer, L. J. (2008). Culture and the metaphoric mediation of pain. Transcultural Psychiatry, 45(2), 318-338. https://doi.org/http://dx.doi.org/10.1177/1363461508089769

Kugelmann, R. (1999). Complaining about chronic pain. Social Science & Medicine, 49(12), 1663-1676.

Johnson, M. I., Hudson, M., & Ryan, C. G. (2023). Perspectives on the insidious nature of pain metaphor: we literally need to change our metaphors. Front Pain Res (Lausanne), 4, 1224139. https://doi.org/10.3389/fpain.2023.1224139

Loftus, S. (2011). Pain and its metaphors: a dialogical approach. Journal of Medical Humanities, 32(3), 213-230. https://doi.org/10.1007/s10912-011-9139-3

Miglio, N., & Stanier, J. (2022). Beyond Pain Scales: A Critical Phenomenology of the Expression of Pain. Front Pain Res (Lausanne), 3, 895443. https://doi.org/10.3389/fpain.2022.895443

Munday, I., Kneebone, I., & Newton-John, T. (2021). The language of chronic pain. Disabil Rehabil, 43(3), 354-361. https://doi.org/10.1080/09638288.2019.1624842

Neilson, S. (2016). Pain as metaphor: metaphor and medicine. Med Humanit, 42(1), 3-10. https://doi.org/10.1136/medhum-2015-010672

January 22, 2024

What are the most commonly used pain self-management strategies?

In a very unscientific vox populi survey conducted via my blog, I asked people with pain to tell me the FIVE self-management strategies they’d used over the week prior. If you’re interested in completing this yourself, click here: click. (Scroll down that page to the survey).

Today I thought it’s worth looking at the fifth strategy in the list: deliberately doing something fun or enjoyable. How cool is that? Not ‘self-care’ or ‘having hands-on treatment’ but having some fun.

It’s always struck me that when pain hangs around, the first things to go are all those enjoyable, fun, leisure activities that we relish. Things that make life worth living. And yet if I look back on the ‘goal setting’ and treatment plans I’ve seen over the decades, most of them have never included deliberately doing something fun. In fact, some of the programmes I’ve helped develop were rejected by the insurer because they ‘didn’t have exercise’ but included ‘walking along the river going fishing.’ Ummm…. because walking isn’t exercise? No! Because fishing is ‘unrelated to returning to work.’

Why is having fun so good for people with pain? Positive psychology studies show that “In older adults, greater ability to savor positive experiences and higher resilience both predicted greater happiness, lower depression, and greater satisfaction with life (i.e., greater psychological well-being)” Smith & Hollinger-Smith, 2015). Without activities that bring pleasure, it’s hard to savour positive experiences….just sayin’

Oh, you want more evidence. Well, here are a couple of studies I’ve stumbled across.

First is a review of positive affect in pain by Finan and Garland (2015). Old research, but always worth looking at these ‘historic’ reviews and studies because they set the scene for what we’ve learned (and often how we frame ‘problems’) over time. In this review, the authors point out that most of our chronic pain therapy targets negative affect but with fairly modest results. They define positive affect as ‘pleasant moods or emotions that promote approach-oriented behaviours, or pleasant moods or emotions that instill a sense of relaxation, contentment, or serenity’ (p. 178). We know, from experimental studies, that positive affect (induced by watching comedy, laughing, pleasant smells and so on) helps reduce reported pain intensity, and is confirmed via fMRI studies with alterations in activity in the ACC, bilateral insual, secondary somatosensory cortex and left orbital frontal cortex. They go on to report on Zautra and colleagues studies of dynamic affect showing that fluctuations in pain tend to narrow the attention and reduce the ability to experience emotional complexity – such as the bitter-sweet poignancy of a sad ending to a movie. By expanding the number of positive experiences, this emotional narrowing broadens out and pain is also reduced, helping to build resilience. Positive affect also helps people with chronic pain be more positive in their social world – and this can enhance relationship satisfaction (with the person’s spouse, children and friends).

Finally, they point out the Broaden-and-build theory posits that positive affect enables people to access higher-level associations and a broader range of ideas and sensory information. By doing this, people can respond more flexibly to challenges by promoting curiosity and exploration.

I love this diagram showing how positive affect might build resilience (p. 183).

Next is a pilot study (yeah I know, low level of evidence – but wait, there’s more!) of a positive psychology intervention carried out with five people with longstanding chronic pain (Flink et al., 2015). Tiny study BUT they used single case intensive longitudinal measurement to understand the processes that occurred when people engage in positive psychology activities. These activities weren’t ‘fun’ activities necessarily, but are about self-compassion, gratitude, savouring, and ‘my best possible self.’ All of these strategies are found in positive psychology research, and the idea was to investigate the impact of these on people with chronic pain. The results weren’t super-startling – except that, rather surprisingly, measures of catastrophising and disability improved the most! And they weren’t directly targeted. Wow. This study also demonstrates how novel interventions can be examined in groups with small numbers, but still allowing us to measure important changes. As an exploratory design, single case study design replicated with several participants is a method we need to use more.

In a systematic review and meta-analysis, Blasco-Belled and colleagues (2023) found that positive psychology interventions do enhance positive affect and reduce anxiety but didn’t alter depression. There were not many studies included in this analysis suggesting that we still have a hang-up on promoting joy and compassion and all the good things in life. Fancourt and colleagues (2021) discuss a theoretical framework for understanding how leisure activities affect health in the Lancet – using complexity theory. Making it very complicated – but very research-friendly. There is good evidence that doing things that hold meaning and enjoyment help people feel more connected, their lives more meaningful, and in turn feel better in themselves. In the UK it’s even called a thing: social prescribing. As an occupational therapist part of my heart goes yippity yay! while another part sighs in resignation that yet another part of what my profession has been doing for decades is ‘suddenly discovered’ and implemented without occupational therapy’s sophisticated clinical reasoning and research to support those incorporating it.

I can understand why fun doesn’t seem relevant to ‘therapeutic’ programmes where the focus is on medium-term goals to ‘return to function.’ Yet again I find myself asking when will health professionals begin to acknowledge that many people with pain will ultimately need to live for a loooonggggg time with their pain, so incorporating a balance between ‘hard work’ therapy with helping people develop and engage in fun, enjoyable and nourishing activities is critical. Otherwise life becomes simply a set of Things To Do, looking nothing like life and an awful lot like doing hard time.

People living with pain have shown us that doing things that hold enjoyment is important. Why not start there in our therapeutic approaches, so that the confidence that builds from positive affect might influence all the other things carried out in the name of pain management and rehabilitation?

Blasco-Belled, A., Tejada-Gallardo, C., & Alsinet, C. (2023). Positive psychology interventions can improve mental health for chronic pain patients: a systematic review and meta-analysis. Psychology & Health, 1-17. https://doi.org/10.1080/08870446.2023.2250382

Fancourt, D., Aughterson, H., Finn, S., Walker, E., & Steptoe, A. (2021). How leisure activities affect health: a narrative review and multi-level theoretical framework of mechanisms of action. Lancet Psychiatry, 8(4), 329-339. https://doi.org/10.1016/S2215-0366(20)30384-9

Finan, P. H., & Garland, E. L. (2015). The role of positive affect in pain and its treatment. Clinical Journal of Pain, 31(2), 177-187. https://doi.org/10.1097/AJP.0000000000000092

Flink, I. K., Smeets, E., Bergboma, S., & Peters, M. L. (2015). Happy despite pain: Pilot study of a positive psychology intervention for patients with chronic pain. Scandinavian Journal of Pain, 7(1), 71-79. https://doi.org/10.1016/j.sjpain.2015.01.005

Smith, J. L., & Hollinger-Smith, L. (2015). Savoring, resilience, and psychological well-being in older adults. Aging & Mental Health, 19(3), 192-200. https://doi.org/10.1080/13607863.2014.986647

What are the most commonly used pain self-management strategies?

In a very unscientific vox populi survey conducted via my blog, I asked people with pain to tell me the FIVE self-management strategies they’d used over the week prior. If you’re interested in completing this yourself, click here: click. (Scroll down that page to the survey).

My reason for asking the question is that we have a list of self-management strategies, but the definitions and the way strategies are used in daily life are quite murky. For example, we don’t have a clear definition of ‘activity pacing’ though we are starting to investigate it. We also don’t know whether strategies introduced during a pain management programme are those that get carried on over time. We know that movement practices are common, but we’re not certain what forms of movement practice are carried out over a lifetime – and many people living with persisting pain will need to use strategies over a lifetime.

My survey results are below, and I’ll unpack them a bit today.

Now the survey didn’t ask people any details about what these strategies look like, apart from the examples I listed, so I’m drawing on my experiences working with people living well with pain when I talk about them.

No surprises, movement practices come out on top. This is such a broad church of activities! In my PhD study, I found that movement practices were mainly woven into daily life. Things like walking or cycling to work, walking on the beach to ‘clear the mind’, taking the dog for a walk and meeting other like-minded pawrents, and yes… even going to the gym (some of you will know my aversion to that environment!). Movement practices are critical for people with pain because if we don’t maintain full movement practices, we tend to seize up, but more importantly, movement practices in my study were about having ‘head space.’

Movement practices are relatively easy to ‘prescribe’, to ‘count’, and to have unhelpful messaging around. Too many people are told they must do a particular form of movement practice, and do it in a particular way to ‘correct dysfunction.’ This means I’ve seen some people terrified to stop doing the exercises they were prescribed 15 years ago! Movement practices should, IMHO, be about relishing how amazing our bodies are. Celebrating the range of movements we can undertake, enjoying the different tempo’s and rhythms of our bodies, and that our bodies are the way we interact with our world. As long as we DO some movement practice every day, the kind of movement is really up to each individual. And if you use movement practices to ‘clear your mind’ – GO YOU! I do too!

Activity pacing is another familiar strategy, albeit weirdly difficult to define. I’ve defined it in my survey as ‘ways to keep your activity levels consistent‘ rather than the erratic ups and downs we can fall into when pain is the guide. Pacing does not mean you must take a five minute break every 20 minutes as I’ve often heard – pacing means you can reliably predict how much you can manage consistently whether it’s a good or a frankly rotten day. It’s the ‘do no more on good days, and do no less on bad days’ motto – tempered with the total enjoyment of doing more of a thing because it’s important (and fulfills something valuable to the soul), and less of a thing because we have planned to take it easy for that time.

Pacing is a skill that seems to need several steps to learn to use. There’s the initial phase where we need to establish just how much is ‘usual’ (we could call that the baseline); then there’s the adjustment phase where the focus is on adjusting activity levels to either increase or reduce the amount of activity to bring it to the level where it can be consistent; and finally there’s the living phase where it’s about being flexible and values-guided in choices about activity management. Now I’m making these stages up – they’re my observations having seen people at all stages of their living well with pain process – but what I’ve seen at pain management programmes (when pacing is introduced) is a lot of work on the adjustment phase and not much on the living phase. And so much of pacing seems to target ‘boom and bust’ or ‘increasing activity levels’ rather than the end goal which is to feel that we can be reliable about what we can expect from ourselves.

Managing sleep was the third most commonly used strategy and for this I am really happy! Sleep management wasn’t much on the radar when I developed the programme Springboard. While it was discussed a little, I don’t think we knew why sleep management is so critical. It’s because rotten sleep predicts greater pain the following day, and poorer sleep that night…. And having poor sleep poses a risk for developing chronic pain anyway. Pain doesn’t wake people up from sleep, but during those brief moments of wakefulness through the night, if we are experiencing pain, we’re more likely to notice it and wake more fully. If we can’t fall asleep easily, we can stay awake and feeling rotten.

Managing attention is another really important strategy – not to ‘ignore’ pain, or ‘distract from pain’ as much as to use attention to be aware of pain and the mind chatter that goes with it. We could call this ‘mindfulness’ but that brings with it a lot of unhelpful baggage, so I like to draw from ACT and call it ‘clean pain’ and ‘dirty pain’. Clean pain is all the sensory stuff – the prickling, aching, burning…. Dirty pain is all the commentary minds make about the clean pain, including a good few swear words! I suspect managing attention is something that gets easier with time but is inclined to fall apart when something else is happening in life. For example, when I’m not doing my movement practices, or when I’m coming down with a bug.

It’s important to recognise that attempting to ‘ignore’ or ‘not notice’ pain is impossible. Pain is an attention-grabber. Trying to NOT notice pain can be done but typically only for a short time and with much effort. What seems to be more useful is to notice and not judge pain negatively. I characterise my pain as like a very firm hug (at the moment, around my lower back and butt), or like tingly socks with toes in them (my feet are often sore at night). Imagery isn’t talked about very much but it is part of the ‘managing attention’ set of strategies.

I’ve just make a start on unpacking these strategies and as I do, I realise how little we know about HOW people use these during their daily life. When do people do movement practices? How long and how often, and do they change over a lifetime? What cues help people use pacing in their daily life? What happens if pacing can’t be used (eg if you work in retail, you know what I mean, right!)? How is attention management used when driving? When working in the office? When the kids are driving you nuts at dinner time?

The theory of these strategies might be buried beneath decades of cognitive and behavioural therapy and perhaps we haven’t truly examined them as they’re used in people not in a pain management programme. And maybe we haven’t even looked at whether what’s taught during pain management programmes actually transfers into living well with pain. And that is what I found in my study. Maybe it’s time to look a little more deeply into what people actually do in their world?

How confident are clinicians to deliver pain self-management?

Over the past few weeks I’ve been talking about pain self management from many perspectives. It’s an important topic because most people living with pain will be self managing most of the time. Being able to confidently self manage leads to less disability, distress and lives that look like life, not some endless healthcare regime.

A paper by Penlington et al., (2023) explored confidence beliefs of clinicians working in the UK in primary or community settings prior to a training programme that was then delivered to them. The sample included in the survey is therefore a subset of those who might be expected to deliver pain self management – in other words, they are clinicians likely to be interested in offering self management rather than those who don’t give a rat’s proverbial. In fact, they found 33% of participants had no previous training in supported self management, while others had at least some previous training or knowledge – but this made absolutely no difference in overall confidence to deliver self management.

Confidence, rated on a 0 – 10 point scale, (mean confidence, that is) was between 4.68 and 4.89 – in other words, pretty darned low.

Interestingly, but unsurprisingly, physiotherapists appear to be the most confident to offer elements of self management – if explaining pain, managing activity levels and supporting healthy habits is what you’re looking for, but no differences between professional groups to help people manage moods.

As the authors point out, self management support is expected from clinicians as part of a health policy that acknowledges chronic or long-term conditions need a different approach from the way that health services have historically been organised. That is, people with urgent or remediable health problems have been and still are prioritised in service delivery – particularly people who might die. Fair enough, we don’t want people dying on our watch says any government! However, the growing need for long-term conditions self management must be recognised, and from this survey (remember: from a self-selected group enrolled in a pain self management training programme) we can see that many clinicians simply lack confidence and often lack knowledge.

Interestingly, just knowing about, or having had previous training in supported self management approaches did not appear to improve confidence to actually deliver pain self management. Why? Because pain self management is not the same as generic long-term disease self management. It’s often much more difficult, and here’s why:

• Pain is weird and many people with persistent pain want and expect resolution of their problem, so accepting a diagnosis that leaves you with pain ‘for the rest of your life’ is HARD. It’s far more common and almost ‘accepted’ that diseases like diabetes or COPD or stroke need to be managed. Pain? Not so much.
• Pain self management involves everything we do in life, from movement practices to sleep management, to overall daily life planning to countering stigma because ‘you look fine to me.’ Diabetes, in contrast, involves medication management, blood sugar testing and dietary changes. Now before you all yell at me – I’ve lived with diabetes with both my pregnancies (and I’m ‘pre-diabetic’ and have been for 33 years, ever since then), so I do know what’s involved. The tight monitoring, using insulin, managing food intake and so on is very familiar – but it is normalised, recognised, and only affects that part of life. Pain is far more nebulous, there are far more contradictions (because acute pain does go away, right? but persistent pain does not and that’s confusing), and the stigma attached to having a limitation nobody can see is extraordinary.
• Everything we experience can alter pain – in both helpful and also rather unhelpful ways. This means mood, stress, excitement, changes in routine, changes in physical demands, social demands, sleep – all the things we routinely encounter in life – will influence pain intensity. And that’s really hard to deal with. Contingency plans need to be in place for every situation we might encounter and doing that is tough, especially when we never know what might come around the corner.
• There are conflicting opinions about pain everywhere – Google ‘pain management’ for a minute and you’ll see what I mean. Go on any social media platform and you’ll see what I mean. Who is trustworthy? And with the common attitudes experienced by people with persistent pain from clinicians it’s highly likely ‘go talk to your Doctor’ will not go down well. People with pain don’t want to have to go see a clinician who is either scared of your pain, feels reluctant to see you, doesn’t know enough about your particular kind of pain, or who communicates that you’re hard work… So people will go look on social media and talk with one another and not everything that’s shared is helpful.

In my very unscientific vox pop survey carried out via this blog, these are the things people with pain find themselves doing to live well alongside their pain. I’ll expand on these results in my next post, but they make for interesting viewing. Clearly movement practices are important to those of us who live with pain, along with managing our activity levels and then – managing sleep. Managing attention and doing fun things are next on the list.

If these are what we do to live well with pain, how do we integrate these things into our daily lives? How do we get them embedded into our routines and habits? How do we maintain doing these things when life changes over time? Do these things look the same for each person? If they are ‘done differently’ – what do clinicians need to know to help them help people with pain ‘do them their way?’ And how do clinicians respond when challenged by someone who doesn’t want to do the things the ways clinicians might think are ‘best’? Especially when we don’t have a clear guide on what ‘best’ looks like?

For all that we have been talking pain self management for decades (at least since the 1970’s!) it’s odd that we don’t really know the best approaches for helping support people to live well in the presence of persistent pain.

Penlington, C., Pornsukjantra, P., Chazot, P., Cole, F., & Denneny, D. (2023). Confidence of practitioners to support self-management of pain: A multidisciplinary survey. British Journal of Pain. https://doi.org/10.1177/20494637231212748

All by myself… don’t wanna be

Throughout my career, I’ve been interested in how and why people see clinicians about their pain. I’m intrigued by the journey before, during and afterwards.

I’m interested in the social factors influencing choices in healthcare. If I’ve been gardening over the weekend and I wake up Monday with a sore back it’s easy to see a physio here in NZ. That visit is likely paid for by our accident compensation system (24/7 no-fault scheme paid for by taxes and levies). And the jolly joy germ in me thinks “Well at least that means people don’t have to see a doctor first” – but there’s also a tiny cynic in me wondering “what if…?”

The ‘what if’ is all about knowing what I know about low back pain trajectories and how little anyone can do to ‘treat’ acute low back pain. It’s about thinking maybe it’s time we took a hard look at what we’re not doing well but seriously need to. And a dollop of “what if we took the market-driven ideology out of healthcare, removed the perverse incentives that create the drive for repeat customers and unnecessary treatments, and gave people more information about how to self-manage?”

If you’re not aware about low back pain trajectories, here’s the thing: repeated episodes of low back pain are more common than not. In fact there have been a good number of longitudinal studies investigating trajectories finding three or four groupings: High intensity and stable; high intensity but gradually decreasing; medium intensity and stable; and low intensity and decreasing (Andersen et al., 2022). Other studies have shown fairly similar and stable paths for people with chronic pain (Glette et al., 2019).

Now my point is that we know this, and we’ve known it a while. My question is: If it’s probable someone will have either ongoing pain, or recurrent pain, what are we doing to help people manage by themselves? Where are our public health messages about self-managing pain? What do our clinicians themselves know about the trajectories and self-management? Could there be a somewhat selfish reason for the lack of attention to helping people help themselves?

Conversely, I know that when you’re feeling sore, especially if the pain is new, intense, or has been grinding on for ages… seeing a clinician seems sensible. Nobody wants to be dealing with pain all by themselves. And there are some people who feel that self-management is essentially dumping the problem back on to the very people who are most vulnerable – almost like self-management is suggested because “Oh the doctor’s not interested”, “On you go, I can’t do anything about this, you deal with it” (Gordon, et al., 2017, p. 213).

Actually, the paper by Gordon, et al., points out that people may be given information during a course of treatment but that nobody follows the person up – even though both people with pain, and those treating them think this is important. It’s worth noting this study was carried out in a publicly funded jurisdiction. We don’t much have that for non-accident-related problems in New Zealand, so there is very little self-management support and no follow-up at all for most.

Supported self-management is the term given to approaches combining self-management (as I defined it here) with clinician support. The clinician support seems to be important, as Svendsen et al., (2022) found, as did Devan et al., (2018). This is because people find self-management hard work (believe me, it surely is – all that planning, judging, deciding, prioritising, fitting it all in to an already busy life!), particularly if pain and low mood and unhelpful others are around. And the time people feel most vulnerable is likely during a flare-up or when other life events demand energy. Supported self-management will only help, however, if the support offered (especially during a flare-up) continues to focus on supporting self-management. It won’t work if the person’s confidence to manage by themselves is eroded by a well-meaning clinician referring them off for another scan or procedure, or bumping up the medications …

Now if I look at the New Zealand setting, where is supported self-management? Despite showing that self-management programmes for pain are cost effective (see Chowdhury et al., 2023), there are few self-management programmes available and there doesn’t appear to be anything for ongoing support – at least, not freely or widely available. Most pain management programmes in NZ are a combination of exercise plus psychology but the content of those programmes is not visible. Self-management strategies need to be integrated into daily life and there’s very limited occupational therapy involvement even though this is what occupational therapy is all about.

There is about to be a new government in New Zealand. The spokesman for health in the National party was a GP. I hope that he chooses to step up to the challenge of implementing supported self-management for pain – and takes the lives and suffering of the 22% of New Zealanders living with chronic pain seriously. I hope he listens to academics who know of good solutions – and doesn’t simply focus on expediency and simplistic notions of ‘quick fixes’ that have not worked. Privatising healthcare has led to wider service availability – but lower quality of care. There is no incentive to pay for a senior experienced clinician when a less expensive new graduate can come in to do the job. It takes time to develop a deep understanding of just how difficult it is to self-manage pain, and it takes time for clinicians to let go of their ideas about ‘what works’ and start to listen to the people they want to help. It takes maturity to say ‘your idea sounds great’ when someone comes up with a plan to help themselves – even if that plan doesn’t look like something learned in undergrad.

The thing is, people with pain want supported self-management – but it takes time to learn why and there’s a process of coming to terms with it. Once someone has learned that pain is likely to hang around, and medical approaches don’t offer very much, the really hard part begins: picking up all the pieces of life, stitching it back together again but differently, and then carrying on with daily self-management.

Andersen, T. E., Karstoft, K. I., Lauridsen, H. H., & Manniche, C. (2022). Trajectories of disability in low back pain. Pain Reports, 7(1), e985. https://doi.org/10.1097/PR9.0000000000000985

Chowdhury, A. R., Schofield, D., Shrestha, R., & Nicholas, M. (2023). Economic analysis of patient-related effects of an interdisciplinary pain self-management program. Pain, 164(11), 2491-2500. https://doi.org/10.1097/j.pain.0000000000002959

Glette, M., Stiles, T. C., Borchgrevink, P. C., & Landmark, T. (2019). The Natural Course of Chronic Pain in a General Population: Stability and Change in an Eight-Wave Longitudinal Study Over Four Years (the HUNT Pain Study). Journal of Pain. https://doi.org/10.1016/j.jpain.2019.10.008

Gordon, K., Rice, H., Allcock, N., Bell, P., Dunbar, M., Gilbert, S., & Wallace, H. (2017). Barriers to self-management of chronic pain in primary care: a qualitative focus group study. British Journal of General Practice, 67(656), e209-e217. https://doi.org/10.3399/bjgp17X688825

Shhhhh! The secret we don’t talk about…

For all my writing about ACT, there are some things that ACT doesn’t directly deal with: what do people use to help them do what matters in their life? OK we do discuss actions, values, perspective-taking, mindfulness, willingness and defusion, but we don’t talk about the specifics of what people living with pain might do to live well. The skills or ways of going about daily life, using things that help people with pain do things. *Scroll to the bottom to see my totally unscientific survey for people with pain*

So for a few weeks I’m exploring self-management: this is one of those poorly-defined terms that gets tossed around SO much, so I’m defining it for my purposes so you know what I’m talking about.

Self-management strategies are all those things I do everyday that allow me to have a full life in the presence of my widespread body pain. Self-management includes the usual self-care stuff everyone needs to do like eating healthily, cleaning my body, having adequate fun and rest, sleeping well. Self-management adds those things I need to do because of my long-lasting pain – things like scanning what my pain is up to today, choosing the intensity of my life demands to suit my pain and stress tolerance, pacing (yes, even I pace myself LOL), communicating to others about my need to get up and move around, ensuring I go for a walk and do my mindfulness daily… all of those things! Some authors add symptom management to these two groups of strategies (Kongsted et al., 2021), and embed both self-management and symptom management within an interactive model including healthcare professionals. The list below comes from Nicholas & Blyth (2016) and gives an indication of the things they believe are part of self-management.

If we take a long, honest look at our musculoskeletal pain therapies, we need to be pretty humble about our success, or lack of success. While there are literally thousands of studies looking at treatments for low back pain, it is the largest contributor to years lived with disability in the world – and has been for decades (https://vizhub.healthdata.org/gbd-compare/#). Exercise therapy for chronic low back pain, recently reviewed in a Cochrane study (Hayden et al., 2021) found that while exercise therapy did reduce pain and functional limitations, the impact on daily life function didn’t meet the pre-established clinically important difference, and while pain reduced, it didn’t meet clinically important thresholds.

I’m an equal opportunity critic, so I also took a look at psychological therapies (many of which are offered by other health professionals such as occupational therapists), and found that while there were many, many studies – yet again, the results were not terribly exciting in terms of reduced pain and disability (Williams et al., 2020). Same again for pharmacological treatments for low back pain in adults: “We found no high- or moderate-certainty evidence that any investigated pharmacological intervention provided a large or medium effect on pain intensity for acute or chronic LBP compared to placebo.” (Cashin et al., 2023).

These findings do not surprise me. Pain is a multifactorial experience essential for our survival. Chronic or persisting pain is even more complex than acute pain because the experience lingers, defies usual treatments, is enmeshed with our socio-cultural beliefs about health and people and motivation. No wonder people living with persistent pain feel demoralised and stigmatised when few clinicians want to actually discuss the hard facts that our treatments are not very effective. We’d rather have arguments about whether the ’cause of the pain has been diagnosed’ and ‘the pendulum swinging too far.’

At the heart of this dark, bitter secret is the fear that a clinician has missed something obvious or that the treatment should have worked but one of these pesky psychosocial factors has messed up our lovely statistics.

But more importantly, failing to acknowledge just how poorly treatments fare, leaves people living with persistent weird pain in the dark like mushrooms, being fed bullsh*t.

Self-management, therefore, is what people have to do whether they’re prepared for it or not.

What exactly are those self-management strategies we need to know about?

Well, that’s another problem. We do have some fairly commonly-named strategies: exercise (or movement practices); self-regulation (relaxation, mindfulness); activity management (pacing and planning); ‘DIMs and SIMs’ (danger in me, safety in me – things that elicit feelings of being OK and safe, and things that do the opposite). But we don’t have a clear-cut, well-researched range of approaches that people with pain can check off on some kind of list. We don’t know what helps and for whom, and where and when these approaches might be useful (for a good paper looking at these, see Nicholas & Blyth, 2016).

Even more importantly, we don’t have much research showing how clinicians can help people employ these strategies in their daily life. There is a little from occupational therapy (see Lagueux et al., 2020; Pyatak et al., 2022) but in very small studies and with limited outcome data.

The gap, as I see it, is in understanding the strategies used by people living with persistent pain – and how best clinicians can help people learn them and embed them into the person’s own daily life. I suspect the research method most suited to understanding this is intensive measurement longitudinal designs, because I think it’s not just about the ‘what’ strategies people use, but almost inevitably the ‘why’ and ‘where’ they’re used.

Just for fun, have a go at this totally unscientific survey. It’s entirely anonymous, there’s nothing in it for you except curiosity, no risks and I promise to only use a screenshot if I ever talk about this in a presentation.

Cashin, A. G., Wand, B. M., O’Connell, N. E., Lee, H., Rizzo, R. R., Bagg, M. K., O’Hagan, E., Maher, C. G., Furlan, A. D., van Tulder, M. W., & McAuley, J. H. (2023). Pharmacological treatments for low back pain in adults: an overview of Cochrane Reviews. Cochrane Database of Systematic Reviews, 4(4), CD013815. https://doi.org/10.1002/14651858.CD013815.pub2

Hayden JA, Ellis J, Ogilvie R, Malmivaara A, van Tulder MW. Exercise therapy for chronic low back pain. Cochrane Database of Systematic Reviews 2021, Issue 9. Art. No.: CD009790. DOI: 10.1002/14651858.CD009790.pub2. Accessed 01 October 2023.

Kongsted, A., Ris, I., Kjaer, P., & Hartvigsen, J. (2021). Self-management at the core of back pain care: 10 key points for clinicians. Braz J Phys Ther, 25(4), 396-406. https://doi.org/10.1016/j.bjpt.2021.05.002

Lagueux, É., Levasseur, M., Tousignant-Laflamme, Y., Dépelteau, A., Pagé, R., Pinard, A.-M., Lévesque, M.-H., & Masse, J. (2020). French-Canadian Adaptation of Lifestyle Redesign® for Chronic Pain Management: A Pre-Experimental Pilot Study…2020 AOTA Annual Conference & Expo. American Journal of Occupational Therapy, 74(Sup1), 1-1. https://doi.org/10.5014/ajot.2020.74S1-PO2715

Nicholas, M. K., & Blyth, F. M. (2016). Are self-management strategies effective in chronic pain treatment? Pain Management, 6(1), 75-75–88. https://doi.org/https://doi.org/10.2217/pmt.15.57

Pyatak, E. A., Carandang, K., Rice Collins, C., & Carlson, M. (2022). Optimizing Occupations, Habits, and Routines for Health and Well-Being With Lifestyle Redesign(R): A Synthesis and Scoping Review. Am J Occup Ther, 76(5). https://doi.org/10.5014/ajot.2022.049269

Williams, A. C. C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 8, CD007407. https://doi.org/10.1002/14651858.CD007407.pub4