The power of being present

I’ve been listening to Prof Kevin Vowles recently, as he presents his approach to pain using ACT. He made an important point about mindfulness that resonated with me: it’s that when learning to be fully present, it’s not how long we stray from our point of focus, nor even how many times we come back, the learning is that we can come back. Again and again and again.

There are arguments about what mindfulness is, and I’m certain these will continue, but for the purposes of this post and for people just learning mindfulness, I’m defining it as the deliberate practice of attending to a focus (this could be a single point of focus, or it could be broader – the practice is about being deliberate and self-regulating where attention is being placed), and ‘orienting’ towards sensory experiences in the moment with curiosity, openness and willingness to accept what shows up. This is a definition broadly adopted from Bishop et al., (2004).

A review by Leca and Tavares (2022) looked at mindfulness for people living with fibromyalgia and found, albeit with reservations brought about by study design, that mindfulness does have promise for this pain problem. They used fairly stringent criteria for selecting the studies included in their analysis, resulting in only seven eligible studies, from an initial 160 results.

What they found was that mindfulness helped participants experience better quality of life, and this was influenced by better sleep, less distress, and improved functioning. Not enormous effect sizes, but this is common for chronic pain outcomes of any kind. They also found flaws in the methods used to study mindfulness, including that participants’ experience with mindfulness prior to the research was often omitted, there was limited reporting on the teachers’ experiences or training, and there were a lot of drop-outs, programmes were quite onerous and brief and follow-ups were short. Again, not uncommon in chronic pain research.

Mindfulness is intriguing to study. From the outside there is nothing to see – a person usually sitting quietly, breathing. BUT there is converging evidence that those regularly using mindfulness show some interesting effects on how the brain functions. De Benedittis (2021) compared mindfulness and hypnosis and the brain networks thought to be at play, and found that while both share similar activity in the neural networks, they activate quite differently. Both hypnosis and mindfulness engage the frontal cortex (click here for an update on your neuroanatomy of the frontal cortex) but activate areas differently. De Benedittis found that the anterior cingulate cortex is a key area, the dorsolateral prefrontal cortex is activated in response to hypnotic suggestion in hypnosis, while in meditation, the same area is activated as the person gets more proficient.

So what?

I first started using hypnosis in the mid-1990s, as I needed help with my sleep. I regularly used a hypnotic induction to reduce the time it took me to fall asleep. I have a very active mind that starts to chat to me at night, possibly because I don’t slow down enough through the day for it to get a word in edgeways! Since childhood it’s always taken me at least 45 minutes to settle into bed and eventually fall asleep – and the delay in falling asleep gets worse if I’m tussling over a situation or a problem that I can’t readily find a solution for. There have been times in my life when I haven’t slept until the very wee hours – 4.ooam…. and I still wake (often) for short periods during the night.

Hypnosis helped me retrain my falling asleep practice to where now I can fall asleep most night in about 15 minutes.

As I became more drawn to ACT, I found myself turning to mindfulness rather than hypnosis. With hypnosis I have an outcome in mind: deep relaxation, achieving a trance state that makes it easy to let go and fall asleep. With mindfulness I have no particular destination. I’m willing to be present with whatever sensations and thoughts turn up.

With mindfulness I gently and consistently turn my attention to whatever the target is for that mindfulness practice. It could be my breath (because it’s boring, it’s always there, it’s a rhythm, and there’s a lot to notice!). It could be the contact of my body on the bed (similar reasons to breathing!).

My attention is taken away by thoughts. By weird and fleeting sensations – sharp pin-like stabs in my calves, a feeling like my toes are encased in a gently prickly sock, that my shoulder is being gripped by a large hand and squeezed, that aching in my lower back….

The practice of finding out that my attention has gone there and not my breath and then bringing my attention back to my breath: that is a key part of my mindfulness practice. And doing this without getting irritated by how often this happens!

When I’m particularly sore my mindfulness practice is such a gift. It doesn’t reduce my pain, let me be clear about that. It doesn’t change pain intensity or qualities, at least not for me. What mindfulness gives me is curiosity. My pain is never just one sensation. The more I explore an area where I’m sore, the more complex is my pain. There are areas of hot pain. Areas of no pain. Areas that pulse. Areas that are almost absent – I can’t ‘feel’ them in my mind. Areas that are tingling, and areas that are like tiny needles. And the weirdest thing of all is as I go to explore them in my mind, they slide away and change and metamorphose into another sensation. Pain is a slippery sucker!

Curiosity is, as I’ve written before, associated with willingness to not know. Curiosity is part of openness to experience (Silvia & Christensen, 2020), it’s essential for human growth because it leads to exploring our world and developing an understanding of what is currently unknown. My mindfulness practice unleashes my curiosity – what am I experiencing in my body at this moment? Curiosity has a tiny frisson of anxiety – I don’t know what I will find out – but tempered with a kind of calm knowledge that whatever I notice will likely change. That particular pain won’t last forever, even if my overall pain continues to be present. I would never have known this if I hadn’t explored, in minute detail, areas where I’m sore.

Mindfulness has given me the ability to manage that anxiety, and we need this kind of self-regulation when we live with pains that are negatively valenced – and all pain, by definition, is ‘unpleasant’ and ‘sensory’ and ’emotional’.

As a clinician, mindfulness has given me the skills to be present as I listen to distressing stories from people who haven’t had the kind of healthcare experience they deserve. Mindfulness means I can check in with what is happening here and now, rather than letting my mind head off in the direction of ‘how long will this take?’ or ‘let’s just cut to the chase: what’s wrong’ or ‘what a tragic tale, how dare this happen.’ Even brief dips in and out of mindfulness can give me a chance to notice that I’m not listening fully. And gives me a chance to come back to who I am here for. Mindfulness removes me from my mindiness, and steps me towards curiosity.

You see, while extended mindfulness meditation is part of my life, these brief moments of mindfulness are my mainstay as I go about my everyday living.

I invite you, whether you live with pain, or you’re a clinician – or both – to stop right now and pay attention to the contact of your body on whatever support you’re on. The chair. My feet on my footstool. The weight of my forearms on my computer keyboard. The pressure of my clothing on my legs, the cool areas where the air is circulating, the warmth where my legs touch the chair.

Notice that you can bring your attention back again and again and again.

You can’t do it wrong. Just bring your attention back to what is being sensed now.

And see how often you can do this throughout today.

And notice how it feels.

Bishop, S. R., Lau, M., Shapiro, S., Carlson, L., Anderson, N. D., Carmody, J., et al. (2004). Mindfulness: a proposed operational definition. Clinical Psychology Science & Practice, 11, 230–241.

De Benedittis, G. (2021). Neural Mechanisms of Hypnosis and Meditation-Induced Analgesia: A Narrative Review. International Journal of Clinical & Experimental Hypnosis, 69(3), 363-382. https://doi.org/10.1080/00207144.2021.1917294

Kashdan, T. B., Stiksma, M. C., Disabato, D. J., McKnight, P. E., Bekier, J., Kaji, J., & Lazarus, R. (2018). The five-dimensional curiosity scale: Capturing the bandwidth of curiosity and identifying four unique subgroups of curious people. Journal of Research in Personality, 73, 130-149. https://doi.org/10.1016/j.jrp.2017.11.011

Leca, S., & Tavares, I. (2022). Research in Mindfulness Interventions for Patients With Fibromyalgia: A Critical Review. Frontiers in Integrative Neuroscience, 16, 920271. https://doi.org/10.3389/fnint.2022.920271

Silvia, P. J., & Christensen, A. P. (2020). Looking up at the curious personality: individual differences in curiosity and openness to experience. Current Opinion in Behavioral Sciences, 35, 1-6. https://doi.org/10.1016/j.cobeha.2020.05.013

New! Awesome! Better! (Learning a new approach)

With all the attention being given to cognitive functional therapy (and deservedly so, IMHO) it’s tempting to leap aboard the modality train and go take a course, isn’t it?

Although I’ve picked on CFT today, it could just as easily have been any of the New! Awesome! Better! therapies that hit the clinical headlines on a frequent basis. The temptation to go “Look! Shiny!” and learn about the latest thing isn’t confined to teenagers following some social media trend. Yup, even sober-sides nearly 60-year-olds like me still want to go on learning, getting better at what I do, keeping up with what’s popular…

And yet I worry just a tad when I see the number of therapies that have kicked off with a hiss and a roar but later don’t seem nearly as promising as they did when they started. Why is that? What am I worrying about?

New ideas can often get picked up without critique, as if a new idea comes fully birthed and complete. The slow decades of development, the theory that underpins an approach, and the careful ways researchers couch their conclusions can be completely ignored in the rush to show that ‘I’m up-to-date’ – and that’s a problem. Why? Because while a hallmark of an expert is in describing complex concepts in a very simple way, when we learn a new therapy we are most certainly not expert. So we’re likely to pick up on superficial and relatively black and white ideas, but fail to be aware of how these ideas are scaffolded by theory (Paas & van Merrienboer, 2020).

The difference between a technician and a professional is, I believe, in how deeply a professional will understand the theory. Theoretical knowledge teaches principles, and principles allow us to be versatile as we apply theory to different settings (Kirk, 2022). It takes time to move from superficial to deep understanding, something we expect during undergraduate learning as we develop epistemic cognition (the process of acquiring, understanding, employing and adapting knowledge to specific contexts) – and mostly, we will have had highly structured learning experiences during our training that will have made this process almost invisible to us as we learned them (Yeung, et al., 2021).

I think this makes postgraduate ‘lifelong learning’ tend towards reinforcing known assumptions – clinicians search for habitus (a set of dispositions that ‘incline’ people towards particular practices) because these fit with ‘things the way they are.’ Yeung and colleagues argue that it’s important to develop epistemic reflexivity, or ‘making strange’ the assumptions that go to make up clinical practice, so we can begin to recognise how these assumptions influence clinical reasoning. This process, however, might not be included in our professional training because it can lead to awkward questions – ones like ‘why’ and ‘what if’ and ones without satisfactory answers. Oh darn.

We can blame limited attention to epistemic reflexivity for the superficial way in which Explain Pain has been adopted. Explain Pain is a great way to begin learning about pain mechanisms, and when delivered in the way that the authors hoped it would, offers people with pain a way in to engaging in therapy that might not look much like what they’d thought they’d get. BUT too many people get the book shoved under their noses as ‘therapy’ in the mistaken hope that (a) the person’s pain will magically reduce simply because they know pain is ‘an output of the brain’; and (b) it works as a stand-alone treatment. It does not, except perhaps for fellow nerds like me.

You see, if your world view of therapy is that people are blank slates on which new information is thought to fix things, or that your job is to ‘correct’ abnormalities, and that you are the Holder of Truth, then a therapeutic innovation like Explain Pain can get picked up and bolted on to everyday practice as if it’s just another modality or technique. All the theory underpinning how and why information and learning might be useful (whether this is from a cognitive behavioural approach, or an educational one) gets lost. And the effectiveness either diluted, or at times, negated.

With CFT, built as it is on psychological principles (operant, classical conditioning, cognitive therapy, experiential learning) and delivered by confident therapists who understand movement and aren’t afraid of pain, the results are great. There is something inherently safe in being in a clinical setting with a confident clinician, exploring previously avoided movements in new and gently graded ways.

What CFT is not, however, is a recipe for correcting wrong beliefs, for pushing people into movements they’re afraid of and before they’re ready, by clinicians who themselves are uncertain, and who are looking for ‘movement dysfunctions’ or ‘deficits.’ It’s not intended to be bolted on to ‘usual practice’ which, as we can readily see from the diverse beliefs and practice about back pain in therapists in the ‘usual care’ arm of just about any RCT we care to review, is pretty messy.

To learn a new approach means making existing practice ‘strange.’ It means feeling awkward. Assumptions about ‘the problem’ and what we should do about it can get questioned. It means starting as a novice – therapy takes longer at first because we have to think harder. Our slick competence gets rattled as we can’t just reach for the things we usually (and automatically) reach for.

I’ve learned three forms of therapy that deviate a long way from my original occupational therapy practice. CBT meant I needed to learn cognitive theory, behavioural theory, how to elicit thoughts and beliefs, and link these to actions the person did. The hardest part of CBT was delaying my problem identification until I’d collected enough information to develop a formulation. Then I learned Motivational Interviewing, with its focus on values and eliciting personal reasons for change. Being willing to employ small sets of phrases and summarising then putting the question back to the person for their decision was hard after having spent so long thinking that I knew best. Finally I started learning ACT, and plunged into the complex world of understanding relational frame theory, the power of a behavioural and experiential way of learning that circumvents words (which are my natural home).

In each case, I’ve had to question the assumptions I’d developed as I delved into the theory underlying these approaches. I’ve really had to challenge myself to relate each new concept to what I already thought of as ‘truth.’ The origins of even starting to poke into ‘psychological’ approaches were embedded in my initial biopsychosocial learning that was inherent in my occupational therapy training – and I was lucky enough to have learned these ideas when they were relatively new and just being introduced by Engel. But I have had to question this perspective as well – and the way I view Engel and his work is quite different today from the way I first understood it.

Parting shot: Being attracted to a new and groovy practice is part of being a human. We’re nothing if we’re not curious (see this post from a few months ago). Let’s keep in mind, though, the need for ongoing critical analysis. Ask questions like: What are we trying to do here? What is the purpose of this approach? What are the theories underpinning this approach? What strategies or means are being carried out to achieve the results? What are the assumptions of this approach? Who benefits from these assumptions? Who is most directly affected by this? Are there alternative perspectives? What else might need to change for this to work? How would we know it had worked? – click here for one of the easily accessed critical thinking worksheets, this one from National Geographic.

Kirk, A. (2023). How physiotherapy students approach learning and their clinical reasoning capability (Doctoral dissertation, University of Otago).

Paas, F., & van Merriënboer, J. J. (2020). Cognitive-load theory: Methods to manage working memory load in the learning of complex tasks. Current Directions in Psychological Science, 29(4), 394-398.

Tremblay, M. L., Leppink, J., Leclerc, G., Rethans, J. J., & Dolmans, D. H. (2019). Simulation‐based education for novices: complex learning tasks promote reflective practice. Medical Education, 53(4), 380-389.

Yeung, E., Gibson, B., Kuper, A., Shaw, J., & Nixon, S. (2019). Making strange’: exploring the development of students’ capacity in epistemic reflexivity. Journal of Humanities in Rehabilitation, 1-15.

Pain Concepts for Practice: Occupational therapists

Enrolments open again for this online course with THREE live Zoom discussions!

This course is specifically developed for occupational therapists and gives you:

• an overview of the THREE groups of pain mechanisms and a way through the neurobiology maze
• what pain mechanisms mean when working with people experiencing pain
• the weird and uncertain influence of pain on daily life
• pain behaviours and how these can get in the way of doing what matters to a person
• pain assessments and what they mean
• sensory approaches for people living with pain
• graded desensitising and graded exposure – how they are not the same, and why we might use them
• occupational therapy’s unique contribution to pain rehabilitation and management (psst, it’s not what we do, it’s where we do it!)

The live Zoom sessions are scheduled for:

10 June 10.00 – 12.00 NZ time

8 July 10.00 – 12.00 NZ time

5 August 10.00 – 12.00 NZ time

Along with the learning materials, you also join the Occupational Therapy Community where you can talk with other occupational therapists working with people experiencing pain.

And every now and then I run FREE online meetings where we can talk about subjects near and dear to our practice!

Click the link to register: click

Learning ACT (acceptance and commitment therapy)

Around 2001 I read what I believe is the first randomised controlled trial of ACT for people living with chronic pain (McCracken, 1998). I quickly dived into this ‘new’ therapy – it appealed to me because it resonated with my own experiences with psychological therapies for depression, and in the way I had learned to live alongside my own pain. For those who don’t know, I developed chronic pain around the age of 22ish (dates are hard to remember!) and after seeing a pain specialist was given those fateful words ‘I’m sorry, there’s nothing we can do from a medical perspective.’

Why did ACT resonate so well? Because I’d tried to do the things that CBT offered. All the ‘maladaptive thoughts’ (stinkin’ thinkin’), the reframing (no, life doesn’t suck completely, it just sucks here, and here…), the behavioural activation (just keep on doing, even though it’s not rewarding) – all the things I was supposed to do to ‘fix’ my depression and my pain, but actually made me focus more on my thoughts, and more on the reality of being a single mother with two small children working full-time, studying part-time, and yes, feeling overwhelmed and at times pretty desperate.

ACT was different. ACT focused on noticing first. Noticing what was here and now. And when I was being present in the moment I could see my children as wonderful, quirky, loving kids (who also made a horrendous mess that I could never keep on top of!). I could see the colours in the flowers and trees in the nearby Botanic Gardens. I could notice my left earlobe (it doesn’t get sore – neither does my belly button!).

Learning ACT was not easy. ACT is a slippery therapy for anyone who wants a step-by-step protocol. There are common parts to ACT as an approach, like creating a sense of ‘these things don’t work – but it’s not for want of trying, it’s because humans don’t work this way’ (because the harder we struggle to control a thought or a feeling, the more it sticks to us), like being present and noticing, choosing actions that align with what matters: these were relatively familiar to me because of my occupational therapy background. Occupational therapists often start by asking people about what they want and need to do, then begin by setting actions that help the person do those things, but ACT can start anywhere on that darned hexaflex.

How might I go about learning ACT today? Because I know me, I would begin by looking at the end. What’s the end goal with ACT? It’s about being able to continue doing what matters (making our lives count in the ways we want them to), despite what life throws at us. I take this to mean that although the form or outer expression of what matters to us might change over our lives, the intent or values underpinning those actions is retained. And sometimes the values might change a little as we focus on one for a time, and others step back.

The thing is, changing how we do things is hard! I’ve often said to people with pain that I can teach the skills of pacing, for example, in an hour. What’s difficult is dealing with what our minds say, the reactions from other people, our own feelings about making changes and dealing with these other reactions, and the inner sense of wrongness that can come up – like ‘what kind of a person stops half-way through a task just to go take a break?’ And this is why ‘education’ for pain has to go beyond telling someone what to do.

As a total nerd, I like to know the theory or the organising structure supporting a therapy. ACT is based on solid science and I don’t just mean relational frame theory! ACT is a cognitive behavioural therapy, with the major distinction between ACT and CBT being how language is viewed. This means knowing about behaviour change from a Skinnerian perspective. It really does help to understand classical and operant conditioning. It moves us away from working hard to avoid things we don’t like, and towards things that are rewarding to us. The influence of moving in the direction of things we want has a different flavour from avoiding things we don’t want.

For example, if I work hard to avoid feeling my pain, I'll notice my pain whenever I do anything. This makes pain so much more present to me! If, instead, I want to enjoy the delights of what my body can do because I love to move to music, there are so many ways I can do this! I can tap my toes and my fingers in time to the music. I can hum along. I can chair dance. I can sit and internally dance to it. I can stand up and do a wiggle. I can even get up and dance! I can walk in time to the music, I can choose the tempo of the music I move to... the world opens up to me. 

I do ACT as I understand it. I try to use ‘doing’ as the vehicle for working through the various processes because how we do anything is how we do everything. I try not to just talk about ACT. ACT is a doing therapy where, by paying attention to what happens in the moment and bypassing the commentary our minds make (and the stories we hold onto about who we are), the effects of what we do become the guidance we need.

For example, if I feel better in my body by doing chunks of activity then doing a stretch or a walk or a dance or a body scan, my mind can leap in and tell me I'm being lazy, ineffective, sloppy, and never get anything done. Following the guidance of my mind would lead me away from relishing the lightness and reduced pain I get from chunking my day into bits. If I'm willing to notice how my mind likes to nag AND to notice how wonderful my body feels, guess which one is a better guide? Especially if what really matters to me is how I can be calm at the end of the day when I spend time with my partner! By noticing how my body is, and letting my mind do its thing without buying into the content, I'm much more likely to keep doing the pacing. 

There are many courses teaching ACT, and loads of freely accessible material on ACT throughout the interwebs. That’s due in large part to the ethos of ACT and those researching and using ACT-aligned approaches. Unlike CBT which can be tightly regulated, particularly in the USA, ACT is far more generous and open. Anyone can use ACT, it’s intended to view people as people, not bundles of psychopathology. I like this, especially in pain where so many people have already been given unhelpful names and treated with disdain and stigma. It won’t breach your scope of practice because it is about humans being practical about how our minds work, and what trips us up when we hit a life snag. Life snags are everywhere, and being human is, well, who we are!

The challenge for therapists not familiar with psychological approaches is to learn ACT from the perspective of your profession. If you’re a physiotherapist, ACT is done differently from when ACT is used by an occupational therapist or a social worker or a psychologist. We might deal with the same stuff, but our entry point to ACT is often different from a psychologist. I like to begin with actions aligned with values and watch what happens as people begin to do the things. It’s once people begin doing that our minds, beliefs about who we are, our desire not to feel uncomfortable, our memories and expectations all begin to wreak havoc on being guided by what actually happens in real time.

This is why I’m preparing my own online ACT course for therapists who work with people living with pain. The solid foundations of ACT will be there – but we’ll begin by doing the doing. ACT is a different way of being with people, and the best person to experiment with is —– yep, yourself. Keep watching for ACT for pain therapists, coming soon!

BTW this study by Lai et al., (2023) shows 33 ACT RCTs (bearing in mind my reservations about RCTs), with 2293 participants, showing (as usual) small to medium effect sizes for physical function and pain intensity at follow-up; and on depression, anxiety and improved quality of life. Interestingly, people with difficult-to-treat pains like chronic headache and fibromyalgia showed greater benefit than those wioth nonspecific or mixed pain, and again as usual, results were smaller over time. ACT is helpful – so let’s do it!

Lai, L., Liu, Y., McCracken, L. M., Li, Y., & Ren, Z. (2023). The efficacy of acceptance and commitment therapy for chronic pain: A three-level meta-analysis and a trial sequential analysis of randomized controlled trials. Behav Res Ther, 165, 104308. https://doi.org/10.1016/j.brat.2023.104308

McCracken, L. M. (1998). Learning to live with the pain: acceptance of pain predicts adjustment in persons with chronic pain. Pain, 74(1), 21-27. https://doi.org/10.1016/s0304-3959(97)00146-2

Why I’m not fazed by unremarkable results in therapy trials

Remember the old ‘pareto principle’? 80% of the results come from 20% of the input, or as Wikipedia informs me, “the principle of factor sparsity”

I think we’ve got there with musculoskeletal pain, especially low back pain.

The other ‘law’ that might apply is that of diminishing returns.

We’ve learned a great deal about low back pain over my clinical career. We’ve essentially learned what not do to. In the name of progress, thousands of people have put their pain (their bodies) on the line. And progress has not exactly been great right? We’ve learned that paracetamol (acetaminophen) does diddly squat for acute low back pain, and this doesn’t change as pain hangs around (Williams, et al., 2014). We’ve also found out that doing surgery for most back pain isn’t a great thing (except for radicular pain where surgery is better for leg pain than back pain itself) (Chou et al., 2009). We’ve found out that all forms of exercise are great – loads and loads of studies showing this – BUT effect sizes (in other words, how effective it is) are small to modest for both pain and disability. And the most recent study of cognitive functional therapy, while absolutely wonderful and pragmatic and all, is not much different from what has been advocated for at least 30 years while I’ve been in practice (Kent et al., 2023).

Now before Defenders of the Faith accuse me of complete nihilism when it comes to therapy for back pain, let’s do some deconstruction. CFT is an approach where well-trained physiotherapists learn how to carry out guided discovery and graded movements to help people with low back pain explore and gradually expand their movement repertoire. The training is a good 90 hours, apparently, and therapists say they come out of it with greater confidence to: listen, ask open-ended questions, probe for concerns, generate helpful interpretations, then begin to help the person test out movements they may have been less than enthusiastic to do for quite some time. The excellent things about this approach, and the research O’Sullivan and colleagues have done, is that they’ve replicated the ‘method’ (guided discovery, graded movement, really good listening) in different countries, with different researchers, different therapists (though mainly physiotherapists), and in people with different durations of pain.

The outcomes are pretty good. I like that participants were monitored for 52 weeks, so there’s hope the gains they made are durable. I like that they measured patient-specific function rather than ‘standardised’ outcomes. I like that psychosocial factors such as pain self-efficacy, and pain catastrophising and fear-avoidance beliefs were monitored and all show pleasing changes over time.

BUT let’s temper the enthusiasm with some realism, OK? And please, I’m agnostic about what is being done, I care about people. Here’s the thing – pain reduced by around 2 on a 0 – 10 NRS to a mean of 4/10; people felt they could do more by about 15 points on the RMDQ; pain catastrophising reduced by 4 points on the PCS. In other words, although these are statistically significant and better than ‘usual care’ (whatever that means), people with low back pain continue to have ongoing pain at 4/10 on this (stupid) numeric rating scale.

Cutting to the chase, good therapeutic relationship (the ingredients of which are built on empathic and reflective listening, collaboration, warmth, trustworthiness, a sense of competence – see Kinney et al., 2020 for a systematic review of therapeutic alliance in physiotherapists), and therapist confidence when helping someone do a hard thing is critical. Combine this with gentle graded movements to nudge into those areas of mistrust in the body and you have a winning combination. And guess what? It has been core within pain management programmes following a cognitive behavioural approach for most of my 30 years in practice.

The thing is, being confident when you know you are asking people to do the very things that are hard for them to do is not something we learn easily. Most clinicians don’t like seeing people distressed, tearful, angry, frustrated or scared. In a climate where pain has been seen as ‘the enemy’ and eliminating or reducing pain has been the focus, therapists have been just as worried about pain as the people they hope to help.

What do these small reductions in pain intensity and disability despite decades of research tell me?
I have a kind of optimistic view of it all. If the ‘what’ we do (ie movement forms) isn’t super crucial, but the ‘how’ we do it is, then shouldn’t we focus a whole lot more on two important legs of the infamous evidence-based healthcare triad? That is, if movement is a good thing, then that’s our ‘evidence from research’. The other two legs are – clinician’s experience and skills, and the person’s own values and preferences.

If we agree that movement is a good thing, and avoiding is not, then the form of movement a person does isn’t nearly as important as the clinician being able to convey that they are listening and care about the person and that they are safe.

And finally, the person can decide what kind of movement practice suits them! Finally we get to the person in the person-centred care model!

As a person who does not like boring, I demand variety in my movement repertoire. I want to be able to explore movements that interest me, that are demanding but not just focus on my body – I’m happy to push hard to do things that intrigue me, like climbing up a hill to take photographs from the tops, or to dance a complex set to music that sets my heart on fire, or to paddle serenely along the length of a lake with the still water like glass. I want to relish the strength of my body as I lift bags of compost and fertiliser and I rake leaves and dig weeds and prune my damned wisteria yet again.

Because, you see, humans don’t mind doing hard things if it’s worth it, and with the support of a caring person who shows that they’ll be there, waving the flag, as they go for it. And really, that’s what I hold onto when it comes to movement and pain. Be the trustworthy clinician. Be humble about the results. Don’t oversell and hype what isn’t terribly technical but IS hard to do.

If all we learn from the RESTORE trial is that when therapists get confident to listen well, and guide discovery in movement, people begin their own journey to wellbeing, then I’m perfectly happy. Let’s just not trademark this practice. It should be fundamental to practice.

ps for the avoidance of doubt, I’m NOT suggesting that CFT is being ‘trademarked’ – I’m warning against anyone who is thinking of branding or trademarking these strategies (it’s happened before with ways to use good communication in musculoskeletal pain).

Chou, Roger; Baisden, James; Carragee, Eugene J.; Resnick, Daniel K. ; Shaffer, William O.; Loeser, John D. . Surgery for Low Back Pain: A Review of the Evidence for an American Pain Society Clinical Practice Guideline. Spine 34(10):p 1094-1109, May 1, 2009. | DOI: 10.1097/BRS.0b013e3181a105fc

Kent, P., Haines, T., O’Sullivan, P., Smith, A., Campbell, A., Schutze, R., Attwell, S., Caneiro, J. P., Laird, R., O’Sullivan, K., McGregor, A., Hartvigsen, J., Lee, D. A., Vickery, A., Hancock, M., & team, R. t. (2023). Cognitive functional therapy with or without movement sensor biofeedback versus usual care for chronic, disabling low back pain (RESTORE): a randomised, controlled, three-arm, parallel group, phase 3, clinical trial. Lancet. https://doi.org/10.1016/S0140-6736(23)00441-5

Kinney, M., Seider, J., Beaty, A. F., Coughlin, K., Dyal, M., & Clewley, D. (2020). The impact of therapeutic alliance in physical therapy for chronic musculoskeletal pain: A systematic review of the literature. Physiother Theory Pract, 36(8), 886-898. https://doi.org/10.1080/09593985.2018.1516015

Williams CM, Maher CG, Latimer J, et al. Efficacy of paracetamol for acute low-back pain: a double-blind, randomised controlled trial. Lancet 2014; 384: 1586–1596.

“… someone needs to find the cause of my pain, then fix it.” What to do with sticky beliefs

I think most clinicians, and certainly a lot of people living with pain, want to know ‘what’s going on’ – with the hope that, once identified, ‘something’ can be done. Tricky stuff to navigate both as a person living with pain, and as a clinician – because for so many chronic pains, a diagnosis does very little.

Having a label has some benefits, for sure: it acts as a short-hand when talking about what’s going on with others; it can validate that the mysterious problems a person has been having are ‘real’ (though I could say more about that!); it can help people find others with similar problems; and there’s always hope that by giving the problem a name it might lead to effective treatment. In the case of pains involving neuropathic or nociplastic mechanisms however, effective therapies are few, far between, and not terribly effective.

From a clinician’s perspective one of the most challenging situations is knowing what to do when someone is really convinced that there is a ‘something’ to be found, because many know how little diagnoses actually help. After all, each person with ‘lateral elbow pain’ might have pain in their lateral elbow, but how it affects them differs wildly depending on what they want to, and need to do in daily life.

For the person with pain who knows their own body and knows what their ‘normal’ feels like, finding the cause seems utterly logical and the necessary requirement before being able to get better.

Clinicians have used many ways to ‘explain pain’ or otherwise give people a handle on what might be going on. Almost all of our strategies aim to help people feel OK to move even with pain and emphasise that when pain persists, it’s less about harm and ‘alarm signals’ and more about problems in the nociceptive system. The rationale for these explanations is to encourage people to engage with therapy and begin rehab.

Problem is that for the person living with pain this can feel dismissive. Like their worries about what might be going on are trivialised, and they’re being kept in the dark almost as a show of power (or to confirm how useless medicine is).

From an ACT perspective, we have a few options, beginning by first looking at the function of getting a diagnosis. I pointed out some of the benefits of diagnoses in the second paragraph above. These show how diagnoses can function in people’s lives. When a person doesn’t have a diagnosis, the converse can apply: people can feel invalidated, that their pain is mysterious (and usually means something scary), that there is no answer and they’re on their own trying to deal with it, that the people around them may never know what it’s like to deal with it, and that this might be their life forever. I can see why the search for a label continues.

The good thing is, clinicians can help someone with those feelings even without giving a diagnosis. And clinicians will likely still have to help people in the same way even with a diagnosis.

As clinicians we have ways to work with people at this stage in their life with pain. My go-to is to ask the person to tell me the good things about continuing to look for a diagnosis from their perspective. I listen very carefully because this matters, this tells me about what the person is yearning for (even if I need to go below the words and explore the meaning behind them). For example, if a person says “I keep looking because I’m sure it will lead to the right treatment” or “I feel the doctors don’t take me seriously because they can’t find anything” or “I know [insert name] who had the same things going on and eventually they found what’s wrong but too late”, I hear a yearning for ‘life to return to normal’, ‘I want respect and affirmation’, ‘I’m scared this might go on and on and I’ll be stuck like this for life.’ I check my interpretations out with the person as I summarise the ‘good things’ about looking for a diagnosis.

Then I ask the person to tell me the not-so-good-things about looking for a diagnosis. Sometimes I’ll prompt them with examples they’ve already told me: like the hope then despair of going through investigations; the financial and life burden of continuing to look; the endless waiting and waiting for results; the dismissive attitude if nothing is found… The list can be very long indeed. And heartbreakingly sad. The search may have been going on for years. Again, I’ll summarise, and ask the person how this affects them as people. I have such compassion for people who have gone through this for so long. The yearning for making sense is strong in all of us!

By summarising both the good and the not-so-good of looking for a definitive diagnosis, and asking the person what sense they make of it all, the aim is to take a long look at how this search is functioning in the person’s life. For some people it hasn’t stopped them from doing what matters, and the search is almost like a scavenger hunt. Life has carried on. They do the important things for them, and that’s fine. For others, taking a stocktake like this has significant impact. Remember, doing this is not in the service of what I want as a clinician. This exercise aims to find out how the search is working for the person and what matters to them.

Once I’ve gone through this process, I begin looking at whether the person is ready for an alternative approach. Of course, this is only considered if they identify that the costs of continuing to search for a diagnosis are too high, and they recognise that it’s been having a negative impact on them. If it is time to switch things up, I can use the fingertrap example , I might talk about how natural and normal it is to want to make sense of things (we’re in this together, we’re all human and want a sense of coherence), I could draw on the digging a hole metaphor or ‘drop the rope’ metaphor. The aim is to help people recognise that stopping the search is a valid way of responding to this need for coherence.

Truth is, though, I don’t usually use these metaphors but instead ask the person ‘if your pain wasn’t as much of a problem for you, what would you be doing?’ and collaborate with the person to understand the values underneath that desire. Working with positive directions (appetitive motivation rather than aversive motivation) helps people pick up on what makes their life worthwhile.

All and any of the processes in the hexaflex can be used to help someone who has got stuck in the pursuit of finding a diagnosis. What matters for us as clinicians is: (1) to be mindful of how this search is functioning (don’t mess with something that isn’t getting in the way of living a meaningful life, but just as importantly, don’t buy into the search for coherence without considering how this may be interfering with helping the person do what matters to them); (2) to explore this process with compassion, knowing that we all do this – and that it has at times led us to develop unhelpful explanations and diagnostic labels, use metaphors that don’t hold much meaning to the person, and leave the person feeling like we don’t take their concerns seriously and don’t care.

Want resources for this? My go-to books are: A liberated mind – https://contextualscience.org/publications/a_liberated_mind_how_to_pivot_toward_what_matters

Learning ACT – https://www.newharbinger.com/9781626259492/learning-act/

Westrup, D., & Wright, M. J. (2017). Learning ACT for Group Treatment: An Acceptance and Commitment Therapy Skills Training Manual for Therapists. Context Press.

Radical relief – https://www.optp.com/Radical-Relief-A-Guide-to-Overcome-Chronic-Pain

There are so many ACT research papers available – with nearly 1000 RCTs, many conducted with people living with chronic pain, ACT is one of the most well-researched therapies across diverse populations of any therapy. The processes of ACT have been validated in people with chronic pain, and you can take confidence both as a person with pain, and clinicians, that ACT has shown highly effective and longlasting effects. Clinicians from any therapeutic background can learn ACT and use it without stepping over ‘scope of practice’ issues. I’ve been using ACT as an occupational therapist for around 19, maybe 20 years. I’d love for more clinicians to learn ACT and bring this into their clinical practice because it’s liberating for us too.

‘Women’s pain’ – not just ‘women’s pain’

Women really do get a rough deal when it comes to pain. We live with the myth that because women experience pain in childbirth and (often) with periods of course women can ‘deal with it.’

Until recently women and female animals haven’t been included in pain research, and guess what? Women and female animals don’t have the same biological system for processing nociception.

Men are told ‘don’t be a girl’ about their pain.

Women are told they ‘look too good’ to be experiencing pain.

Women don’t get taken seriously when they ask for help with their pain – and get given more psychological labels and help instead of appropriate investigations and effective analgesia.

I’ve just reviewed a whole heap of research papers looking at the differences between men and women, boys and girls and pain. It doesn’t make for happy reading, and even though I was fully aware of the disparity I have been thunderstruck at how pervasive pain in women is dismissed.

Let’s look at some facts for women in New Zealand.

https://minhealthnz.shinyapps.io/nz-health-survey-2021-22-annual-data-explorer/_w_37711963/#!/explore-indicators

This survey asks the question: Do you have chronic pain that is present almost every day, but the intensity of the pain may vary, and has lasted, or is expected to last, more than six months. This includes chronic pain that is reduced by treatment?

By comparison, Asthma (diagnosed and treated) – 11.4%; Diabetes – 5.2%; Chronic Pain – 22.6%

BUT there is NO national priority for chronic pain, and more women than men report it.

Want more? What’s the major area of pain for women in Aotearoa? According to the Global Burden of Disease, the most significant contributor to years lived with disability for women in New Zealand is – no, not endometriosis, not menstrual pain, but low back pain, followed by migraine. We hear a lot about endometriosis, but rather less about the overall problem of pain for women.

https://vizhub.healthdata.org/gbd-compare/

In reviewing international data I came across this study looking at 11,000 patient records, and evaluating the differences in reported pain intensity between men and women receiving care for the same diagnoses (Ruau et al., 2012).

This was gobsmacking to me. We KNOW that women are more likely to develop chronic pain (many of the studies show a 2:1 prevalence for women with chronic pain – see Fitzcharles et al., 2021) – but are clinicians aware that women report higher pain intensity, lower pain threshold and lower pain tolerance than men in acute pain? For an excellent review of sex differences in neurobiology, take a look at this paper by Presto and colleagues (2022).

But wait, sadly there’s more.

When women seek help for their pain, from childhood their pain is minimised and managed less assertively than men. Here are some examples from my recent wandering through the literature.

Girls are thought to be experiencing less pain than boys…

Earp et al., (2019) replicated a previous study showing that when clinicians were asked to watch a video and rate how much pain a child was experiencing when having a fingerprick blood test. The child’s gender was considered ‘ambiguous’ (so not easily identified as either a boy or a girl) but the participants were told either a boy’s name or a girl’s name, and asked to rate the pain. There were a whole bunch of other questions asked, but I’ll cut to the chase. No, Virginia, your pain is not as bad as Larry’s, and the gender of the observer was irrelevant. The authors said: “if the belief that boys tend to display less pain than girls is what is driving the relevant inferential process—that is, that this particular “boy” must really be in pain—then controlling for that belief should make the between-subjects difference in pain sensation ratings diminish or disappear. Indeed, this is what we find.”

Naamany and colleagues (2019) found that women attending the emergency department with acute renal colic (nasty pain for sure) reported higher pain intensity BUT men were given analgesics more frequently including opioids and more drugs overall than women.

Men reporting cardiovascular-related chest pain were 2.5 times more likely to be referred to a cardiologist than women….(Liaudat et al., 2018).

AND I wasn’t aware that one in three women quit doing daily activities because of menstrual symptoms, but 50% of them never mention this to family/friends or seek healthcare (Schoep et al., 2019).

Folks, it doesn’t get any better and actually gets a whole lot worse when we’re talking about chronic pain…

Samulowitz and colleagues (2018) carried out an exhaustive review of gender disparity in pain literature. It’s well worth a read (but keep the tissues handy, and watch your blood pressure if you are of ‘gentle disposition’). Essentially the findings show that women are actually biologically more sensitive to nociception, are more willing to report pain and apparently it’s more socially acceptable for women to be experiencing pain. BUT women are assigned ‘psychological’ rather than somatic causes for their pain, struggle for legitimacy, have their appearance scrutinized (‘you look too well to be in pain’), are prescribed less and when given analgesia are given less effective pain relief, fewer opioids but more antidepressants (though that could be because women are 2:1 more likely to have nociplastic pains), and give more mental health referrals instead of active rehabilitation. Even the recommendations for rehabilitation differ depending on gender (Wiklund et al., 2016).

Frankly, it’s outrageous.

It sucks to find that women’s pain continues to be trivialised, and women get given poorer treatment. We must change this because, duh, it’s a fundamental human right to be given access to pain management. It’s also a fundamental right to be treated with the same respect and diligence irrespective of your sex or gender. The flow-on effects of ineffective, inappropriate and inadequate pain management on women are profound.

Begin by getting loud about this. Look at your own assumptions. Be willing to question your treatment if you’re a woman. Be willing to review your practice, both men and women.

Earp, B. D., Monrad, J. T., LaFrance, M., Bargh, J. A., Cohen, L. L., & Richeson, J. A. (2019). Featured Article: Gender Bias in Pediatric Pain Assessment. Journal of Pediatric Psychology, 44(4), 403-414. https://doi.org/10.1093/jpepsy/jsy104

Fitzcharles, M.-A., Cohen, S. P., Clauw, D. J., Littlejohn, G., Usui, C., & Häuser, W. (2021). Nociplastic pain: towards an understanding of prevalent pain conditions. The Lancet, 397(10289), 2098-2110. https://doi.org/10.1016/s0140-6736(21)00392-5

Clerc Liaudat, C., Vaucher, P., De Francesco, T., Jaunin-Stalder, N., Herzig, L., Verdon, F., Favrat, B., Locatelli, I., & Clair, C. (2018). Sex/gender bias in the management of chest pain in ambulatory care. Womens Health (Lond), 14, 1745506518805641. https://doi.org/10.1177/1745506518805641

Naamany, E., Reis, D., Zuker-Herman, R., Drescher, M., Glezerman, M., & Shiber, S. (2019). Is There Gender Discrimination in Acute Renal Colic Pain Management? A Retrospective Analysis in an Emergency Department Setting. Pain Management Nursing, 20(6), 633-638. https://doi.org/https://doi.org/10.1016/j.pmn.2019.03.004

Presto, P., Mazzitelli, M., Junell, R., Griffin, Z., & Neugebauer, V. (2022). Sex differences in pain along the neuraxis. Neuropharmacology, 210, 109030. https://doi.org/10.1016/j.neuropharm.2022.109030

Ruau, D., Liu, L. Y., Clark, J. D., Angst, M. S., & Butte, A. J. (2012). Sex differences in reported pain across 11,000 patients captured in electronic medical records. Journal of Pain, 13(3), 228-234. https://doi.org/10.1016/j.jpain.2011.11.002

Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. Pain Research and Management, 2018. https://doi.org/https://doi.org/10.1155/2018/6358624

Schoep, M. E., Nieboer, T. E., van der Zanden, M., Braat, D. D. M., & Nap, A. W. (2019). The impact of menstrual symptoms on everyday life: a survey among 42,879 women. American Journal of Obstetrics & Gynecology, 220(6), 569 e561-569 e567. https://doi.org/10.1016/j.ajog.2019.02.048

Wiklund, M., Fjellman-Wiklund, A., Stalnacke, B. M., Hammarstrom, A., & Lehti, A. (2016). Access to rehabilitation: patient perceptions of inequalities in access to specialty pain rehabilitation from a gender and intersectional perspective. Glob Health Action, 9, 31542. https://doi.org/10.3402/gha.v9.31542

When life happens….

Most of my writing comes from mulling over recent events as played out either in social media or research findings. Today’s post is a little different. It’s no secret that I live with persistent pain, fibromyalgia to be exact. I’ve found that being open about my diagnosis, and that all the strategies I advise to others are also strategies I employ, and that none of them are ‘the secret.’

I posted recently about a struggle I have dealing with reviewer’s comments on papers I submit for publication. Now peer review is a thing, I think it’s a good thing though somewhat exploitative (I’m also a reviewer – we do it for free, we do it as part of our academic ‘service to the research community’ but we do it for large publication companies that receive articles for free from researchers who utterly rely on getting published for their grant applications, careers…). My struggle isn’t with unfair or unkind reviewers because to be fair I’ve had really good reviewer comments.

My trouble is associated with two peculiarities of mine. I get horribly, horribly anxious when I read reviewer comments, and largely I’ve learned to deal with that. I understand that the aim is to get the best version of what I’ve written out there into print, and as I’ve said, reviewers have generally been fair. Uninformed in some cases (no, Classical grounded theory is NOT the same as Strauss & Corbin, or Charmaz! CGT holds different philosophical assumptions, and in qualitative research, philosophy of science matters), but readily rebutted. Nevertheless I feel highly anxious and worry that I won’t be able to address the reviewer’s concerns adequately. That old imposter syndrome is alive and well in this woman!

The second peculiarity is one I’ve only just got a handle on, though the effects have been with me forever. You see, about 12 months ago I was diagnosed ADHD.

Yes. At 58 years old, I got a new diagnosis that helps explain some of the things that I’ve had trouble with my whole life.

Time for a quick segue. Diagnoses are an odd phenomenon, particularly when it comes to intangible concepts like emotions and cognitions. Unlike acquired diseases, there don’t seem to be readily identified biomarkers – because, of course, unless it’s viewable it’s not real (yeah, right). In other words, we have to rely on what a person says and does to determine whether they have the right to a certain label. And labels in ‘mental health’ are notoriously unreliable, shift with changing political and societal norms (how long ago was homosexuality removed from being thought a mental illness? 1973…). People like Steven Hayes have argued that the entire notion of diagnostic criteria in DSMV is flawed (Hayes, Sanford & Feeney, 2015). Diagnoses for most mental health problems have not led to effective treatments that target the purported mechanisms involved (Hayes, et al., 2022). What diagnoses may do is allow social permission to receive certain considerations. For example, someone with an accident-related pain problem in New Zealand will be able to access free therapy from a multidisciplinary team, while someone with a non-accident-related pain problem such as hand osteoarthritis, or migraine, will have to rely on the scant publicly funded chronic pain services. Diagnoses matter, as anyone in NZ who has been told their pain is ‘not injury-related’ will tell you.

ADHD is not, let’s be quite clear, only reserved for children (particularly boys) with a tendency to leap around a classroom making noise and generally being disruptive. ADHD is a neurotype experienced by around 2.5 – 5% of adults (Young, et al., 2020) and typically considered under-diagnosed in girls and women precisely because of the stereotypical understanding of ADHD. It’s at least partly heritable (some estimates are about 70 – 80%, with 12 independent genomic loci that increase susceptibility to ADHD), generally responds well to stimulant medication (though this does in NO WAY ameliorate all the problems associated with ADHD), and can be found in people from all walks of life and all levels of intelligence.

ADHD describes lifelong patterns of difficulty regulating attention, emotions, and behaviour. There are three major groups of problem: inattention, hyperactivity, and impulsivity (Australian evidence-based clinical practice guideline, 2022). Different people experience different problems associated with ADHD. Mine include atrocious organisational skills, but great responsiveness in high pressure situations; a terrible short-term memory but great visual recall; lousy object constancy (if I can’t see it, it just doesn’t exist); overwhelm in busy sensory environments but exceptional capacity for laser-focused attention on what interests me – to the exclusion of remembering to eat, drink or pee.

People with ADHD often feel out of kilter with others in the world. We might get told we’re weird, or lack social skills, or we ‘have potential’ if only we’d learn how to harness it. Women in particular are often treated for depression and anxiety without anyone asking how it is we’ve developed these issues. We’re great on social club quiz evenings because we have immense recall for utter trivia, but we routinely have to return to the house four or more times to pick up our phone, lock the doors, fetch our glasses and our handbag.

How does it affect me and my writing?

Well, ADHD means I’m fascinated by novelty. Dopamine is the ‘molecule of more’ – and drives me to dive down rabbit holes to find stuff out. Once I’ve found something out, I like to cement my knowledge by writing or talking about it. It makes me a good teacher though sometimes I info-dump way more than anyone else wants to know! Being novelty-driven also means I write fast, as I speak, and once I’ve written something – it’s done. That novelty buzz evaporates and it’s like a switch in my mind flicks off and boom! I’m on to the next thing.

When I get reviewer comments on my work, a big part of me thinks “oh but didn’t you get it? I’ve written it, can’t you see?” because I’ve forgotten about the background information I hold that the reader probably doesn’t also hold. Another big part of me thinks “but I organised this to tell a story this way, now I don’t know how to change that” because I find holding on to multiple points really difficult, and structuring a cogent response to reviewers means not only remembering what I wanted to say, but also what the reviewers found – and my response to their comments. That’s a lot of cognitive shuffling, to say the least, especially when one of the problems my ADHD brings is holding onto information in memory then selecting the right response at the right time.

Once I start thinking about these multiple perspectives and which bit is most important I begin to get anxious. My anxiety is about choosing a response that says what I want to say and aligns with the reviewers ideas. What if I get it wrong? What if I can’t sift through the various points and decide what needs to change? All the overload hits my poor mind, and I freeze.

Part of this is because I was diagnosed later in life and I’ve experienced a lot, and I mean a LOT, of negative feedback about focusing on the wrong things. Doing it wrong. Being wrong. Working really hard on something that ultimately didn’t count for much where it matters. And academic life is full of negative, even brutal, feedback. I mean, we debate ideas with vigour! A good part of me thrives on intellectual debate in the moment. In the quiet of a late night… not so much. It’s overwhelming.

Another part is that ADHD means I see relationships between things that might not occur to others. It’s a big quirk of ADHD – as a group of individuals, we’re often ‘the creatives’, seeing connections and solving unique problems in ways that aren’t logical. That’s because our minds see connections quickly, and linear logic is not often our friend because… well it’s boring and linear. Free association is where my mind lives! Hunches, intuition, improvising, mix’n’match… Precisely because of this, when a new piece of information hits, it disrupts what I’ve already assembled, and for me it’s not just about altering this one part, that single change ripples throughout the whole network of associations I’ve made. Where oh where do I start?

As an older woman learning that yes, I do in fact have an explanation for the difficulties I’ve faced throughout my whole life, has meant an enormous shift in my own self-compassion. When I consider what I’ve achieved despite my ADHD, as a single parent with two ADHD children (undiagnosed until 2 years ago), while working full time, studying part-time, and generally maintaining a good long-term relationship and long-term employment, I’m a little astonished. And at the same time… afraid that really, I am ‘not achieving my potential’, ‘could try harder’, ‘has the capability if she’d only be more consistent.’

Why reveal this in a blog about pain self management?

A couple of reasons. Firstly, it’s my blog, so I can write what I want!! And writing a blog for as long as I have demonstrates that yes, I can certainly be consistent in some circumstances. The context of my consistency matters, because it’s something that I can use to support my neurotype, my ADHD traits.

Secondly, because while I’m now diagnosed and treated and experiencing the incredible benefits of a successful therapy (what? my mind can be quiet? I can focus? I can make choices instead of reacting? OMG it’s awesome!), I still need to deal with both my quirky executive function AND the experiences of a lifetime of dealing with it and the responses from the world around me. Nearly 59 years of consistently stuffing things up, double-booking myself, forgetting details, getting overwhelmed and stuck, not being able to sort my way through a complex situation, being criticised for exactly the sorts of things my brain does well. Things like seeing connections between things that appear to be left-field, but make perfect sense to me AND could be just the sorts of innovations we need to progress pain management beyond the recipes and algorithms that fail to understand that people are individuals.

You see, the diagnosis of ADHD gives me a label, and access to more knowledge about people with ADHD as a group. What it doesn’t do is give anyone a good idea of the unique way ADHD plays out in me.

And BTW, people with ADHD are disproportionately more likely to experienced chronic pain, so if you’re a clinician trying to help someone with chronic pain, and that person has ADHD – there’s a good reason they didn’t do their home exercise programme, or apply their pacing strategies. These both require effective executive functioning. And if that person you’re trying to help is a woman who is also ADHD and attempting to run a household (all that planning, organising, maintaining – the cognitive labour of keeping a household running) – heaven help you! That woman could do with some compassion, simplification and support, rather than judgement and shaming. She’s already had enough of that. True story.

ADHD Guideline Development Group. Australian evidence-based clinical practice guideline for Attention Deficit Hyperactivity. Melbourne: Australian ADHD Professionals Association; 2022.

Hayes, S. C., Ciarrochi, J., Hofmann, S. G., Chin, F., & Sahdra, B. (2022). Evolving an idionomic approach to processes of change: Towards a unified personalized science of human improvement. Behaviour Research and Therapy, 156, 104155. https://doi.org/10.1016/j.brat.2022.104155

Hayes, S. C., Sanford, B. T., & Feeney, T. K. (2015). Using the functional and contextual approach of modern evolution science to direct thinking about psychopathology. the Behavior Therapist, 38(7), 222-227.

Young, S., Adamo, N., Asgeirsdottir, B. B., Branney, P., Beckett, M., Colley, W., Cubbin, S., Deeley, Q., Farrag, E., Gudjonsson, G., Hill, P., Hollingdale, J., Kilic, O., Lloyd, T., Mason, P., Paliokosta, E., Perecherla, S., Sedgwick, J., Skirrow, C., . . . Woodhouse, E. (2020). Females with ADHD: An expert consensus statement taking a lifespan approach providing guidance for the identification and treatment of attention-deficit/ hyperactivity disorder in girls and women. BMC psychiatry, 20(1), 404. https://doi.org/10.1186/s12888-020-02707-9

On not being an arse

Humans are judgemental beings. All of us are. It’s part of having a big brain and wanting to know who’s ‘in’ and who’s ‘out’. Judgements help us make decisions, they’re surprisingly resistant to change, and they can inadvertently trap us into doing things we would never countenance were we able to stand back from what our minds want us to know (and feel).

My post today is prompted by a couple of conversations recently. One was with a clinician, new to a pain team, who found that experienced members of that team thought actions taken by a person with pain were a sign of ‘catastrophising’ and ‘failing to accept’ and worse – ‘not engaging in the programme.’ He’d thought the very same actions were an indication of someone trying very hard to improve their situation, of being motivated to learn and experiment, of being a self-advocate.

The other conversation was with someone who had not been referred for investigations for a new pain she had developed, on the basis that ‘hurt doesn’t equal harm’ and because she already had a chronic pain problem. She went through many years of distress and disability because her new pain was not investigated – but once it was, she got a diagnosis and the treatment that reduced that pain and relieved her distress. Sadly the psychological distress of not having her concerns addressed lives on.

How can we get it so wrong? How is it that good clinicians with the best of intentions (my assumption) make judgements about a person, their pain, and what they do about it and paint the person with pain in such negative ways?

Perhaps clinicians can be excused for holding negative attitudes towards people with chronic pain because the prevailing belief in our clinical communities is that ‘we, the professionals, know what’s right.’ We know this because we have the randomised controlled trials that show us Truth about What Works and What Does Not. I write these in capitals because while health professionals embrace evidence-based health care, I’m not sure we’re all that au fait with the original model of EBHC and its three-part definition: “a systematic approach to clinical problem solving which allows the integration of the best available research evidence with clinical expertise and patient values (Sackett, et al., 1996).” Note those last two points: clinical expertise and patient values.

We’re also not very good at being critical about research. Well, I take that back, we pull research apart when the results don’t equate with our experience or preferences, and gulp down whole the research that does… but what we don’t do nearly as well is to be critical of implicit issues with research paradigms. What I mean by this is we don’t ask ourselves whether the assumptions used in statistical analyses hold true (I’ve discussed ergodicity before); whether the participants recruited to studies are anything like the people we see (research participants are selected to reflect a ‘pure’ construct for testing, so people with multiple comorbidities, who might have difficulty with language or who might not even engage with healthcare and those who are not from high income countries aren’t represented); whether the treatment/s studied in research look anything like what is actually delivered in daily clinical practice, even how long the follow-ups are and what happens once a person is not part of a research project.

Limited critical analysis means results from research reach practice quite quickly (even though the nuances reported by the researchers in those papers often do not) and what’s worse, help to reinforce a hierarchy separating the person seeking help and us as clinicians. After all, us clinicians spend years learning all this stuff so it should count for something, shouldn’t it?

Well… not as much as we’d like it to, perhaps.

Because if clinicians judge a person based on erroneous beliefs about the superiority of what we know in theory (because quantitative research represents only a ‘failure to reject the null hypothesis‘ not definitive support for a theoretical prediction) we’re not inclined to be curious about what the person brings into our communication. Walt Whitman apparently said “Be curious, not judgemental” – and curiosity allows clinicians to suspend judgement in order to explore, to dive more deeply into detail and context, and ultimately, to be more compassionate. Don’t believe me? Take a look at this paper by Shields, et al., (2013).

“Physicians who used more certainty language engaged in less thorough assessment of pain (β = -0.48, p < .05). Conversely, physicians who engaged in more exploring and validating of patient concerns (β = 0.27, p < .05) had higher ratings on anxiety/concerned voice tone (β = 0.25, p <.01) and engaged in more thorough assessment of pain. Together, these three factors accounted for 38% of the variance in pain assessment. Physicians who convey certainty in discussions with patients suffering from pain may be more likely to close prematurely their assessment of pain. We found that expressions of physician concern and responsiveness (curiosity) were associated with superior pain assessment.”

We could replace ‘physician’ with any other healthcare professional, and my bet is we’d find the same thing.

Why does this matter?

Well, after being part of a number of “experts by experience” conversations over the years, the message coming through loud and clear is that clinicians who judge people negatively and fail to respond to what it is the person intends or needs, but instead dismiss their concerns as ‘catastrophising’ or ‘maladaptive thinking’ or even ‘not motivated to engage’ leave people with pain in distress. The psychological impact of feeling that your concerns are not important, of being dismissed, of not being heard is long-lasting. One person I’ve spoken to described her anxiety about seeking help from a clinician after a single time where her concerns weren’t acknowledged.

We might not intend to do it. We may think we’re doing the right thing – and possibly we are doing the right thing but doing it in a ham-fisted and damaging way.

• First listen, be curious and understand why a person has done what they’ve done. People don’t get up in the morning to do dumb things. There’s always some underlying reason a person does what they do.
• Then reflect in a compassionate and empathetic way – show the person you’ve heard them. Let them know what it is you’ve understood – let them correct you if you’ve got it wrong and remember that taking the time to do this saves time.
• Ask them how well their approach is working for them. Aim to understand the benefits from their perspective. Normalise their approach – humans do what humans do, try to solve a problem using the tools at their disposal, just the same way we do as clinicians. Ask about the short-term effects, and the long-term impact. Ask about the good and not-so-good of their approach. BE CURIOUS!
• Involve the person in your decision-making. Be honest about your reasoning and be real about the level of uncertainty that exists in our knowledge about pain. This person is an individual, not a number in an RCT, this person probably doesn’t even look like a participant in an RTC.
• Be specific with your reassurance. Don’t dismiss someone’s concern about a new pain: find out what it is they’re concerned about and ensure you clearly address that concern. Don’t be patronising – be authentic and real.

There is so much harm we clinicians inadvertently do because we’re not flexible, we don’t take time to really hear how a person gets to where they are in their journey with pain, and we really need to be more critical about our own assumptions.

Sackett, D. L., Rosenberg, W. M., Gray, J. M., Haynes, R. B., & Richardson, W. S. (1996). Evidence based medicine: what it is and what it isn’t. Bmj, 312(7023), 71-72.

Shields, C. G., Finley, M. A., Elias, C. M., Coker, C. J., Griggs, J. J., Fiscella, K., & Epstein, R. M. (2013). Pain assessment: the roles of physician certainty and curiosity. Health Communication, 28(7), 740-746. https://doi.org/10.1080/10410236.2012.715380

What do people want from pain management?

The short answer is often “take my pain away” – and we’d be foolish to ignore the impact of pain intensity on distress and disability. At the same time there’s more than enough research showing that if treatment only emphasises pain intensity (1) it may not be achievable for many, especially if we take into account the small effect sizes on pain intensity from exercise, medications and psychological therapies; and (2) even if pain is reduced, it may not translate into improvements in daily life.

The slightly more complex answer lies behind the desire to “take my pain away.” We need to be less superficial in our responses to this simple answer – and take a hard look at what people believe pain represents to them, and what they want to be able to do if pain is reduced.

A paper in the current issue of Pain piqued my interest as the authors explored what people with ongoing pain chose as treatments when given the choice. The paper itself is a systematic review of research papers using discrete choice experiments to determine preferences of people with pain when deciding on treatment.

Discrete choice experiments assume that treatments can be described by their important features, such as where therapy is administered, how often, the target outcome, adverse effects and so on. The approach also assumes that people make choices based on their personal weighting or the value they place on those features. As the experiment progresses, participants are asked to weight each attribute and choose their preferences as they gradually narrow the number of choices. (This open access paper outlines DCE in health in a little more detail – click, or you can take a look at this YouTube video summarising DCE – click).

Now there are some issues I have about this approach, because it also assumes that people make logical choices, that they have freedom to choose independently of other influences (like medico-legal requirements or cultural factors), and it also assumes that people make decisions in the same way that economic modeling finds – and I’m not so sure of that! Having said this, the methodology does shed some light on what people might value provided these assumptions hold true.

Following a systematic search of the databases, the authors identified 51 studies with a total of 4065 participants included, and were published between 2004 and 2021. Most of the studies looked at low back pain and/or osteoarthritis (high prevalence = lots of participants = easy to access). When analysing the attributes participants were asked to choose from, the authors identified the following (not all listed):

• Capacity to realise daily life activities – walking, domestic activities, social activities, activities of daily living, difficulties doing daily tasks etc
• Risk of adverse events – side effects, cardiovascular events, upper gastrointestinal problems etc
• Effectiveness on pain reduction – maximum pain intensity, improvement in pain, pain intensity, reduction in pain etc
• Out of pocket costs – direct payment, premium reduction, cost etc
• Treatment frequency – schedule, frequency, time
• Onset of treatment efficacy – waiting time for effect, time before able to exercise
• Design – individual, group, supervised
• Travel time
• Relapse risk
• Duration of effectiveness

What did they find?

Unsurprisingly, they identified that reduced pain was highly desired, and again, unsurprisingly, they found that the risk of adverse events was pretty darned important. What might be surprising is the capacity to realise daily life activities was the third most frequently rated attribute! In other words, while pain reduction and not having harmful effects was important, the capacity to do what matters is absolutely crucial!

Something I found rather interesting, though, is located deep in the manuscript: neither psychological interventions nor manual therapy have been investigated with this methodology. Now that is odd. And something that sorely needs to be examined because, at least in New Zealand, ‘psychology’ for pain is (almost) obligatory for pain programmes, at least those provided under the auspices of our national compensation organisation. What this means is, we don’t know whether people would choose psychological approaches over other forms of treatment for pain… and isn’t it time we did?

The authors point out that IMMPACT (Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials) recommends six core outcomes when evaluating the effectiveness of treatments for chronic pain. These are pain, physical function, emotional functioning, participant ratings of global improvement and satisfaction with treatment, adverse events, and participant disposition. Interestingly, there’s no specific mention of enhanced capacity to do daily life – it’s assumed, I suppose, that improved physical and emotional functioning translate to improved daily life, but they’re not a direct equivalent (it’s an assumption, right?). Given the differences found between what people do in a treatment setting, vs what they do do in their own life contexts, maybe this is something we should pay far more attention to.

I also note that the attributes don’t include in the need to adopt lifelong changes in routines, choices, activities, participation. Things like exercise, for example, along with medications, often need to be carried out over long periods of time – years, even. And research doesn’t manage to follow people over long periods because it’s very expensive and people drop out. And yet – this is exactly what people with pain must do.

Sensitively, the authors also point out that people at different life ages and stages may make different choices. If I’m nearing the end of my life, I might be more willing to ‘take the risk’ of an adverse event over the need to make long-lasting changes to my daily routine – the quick fix beckons! Concurrently, I’m curious that something clinicians consistently complain about: the desire people have for ‘quick fixes’ or immediate results ranked relatively low on the frequency table – at 1/3 of the ranking frequency. It’s the hope that treatment will enable people to do what matters in their life that seems so important! Who would have guessed…

Now my question is: do currently popular treatments (at least in New Zealand) like exercise and ‘psychological therapies’ have a useful impact on what people with pain rate so highly? Do they actually translate into enhanced capacity to engage in what matters to individuals? If they do – how is this measured? Does a ‘disability’ measure capture what’s important? Does a ‘quality of life’ measure do that well? When I value being able to do some things that really matter to me, but don’t matter to my partner or my next-door-neighbour, are we measuring these individual differences? And in what contexts? I might be happy to compromise on my ability to walk quickly over rough ground in the weekend, but what about my willingness to compromise on my walking at work? How about my ability to sit? What if I’m OK sitting with a soft cushion under my butt at home, but can’t carry that thing around with me to work or the movies or the restaurant or church?

Daily life activities are THE area of expertise of occupational therapists. If being able to do daily life is what people want, why oh why are so few occupational therapists included in pain programmes – even a tertiary level provider here in my home city? Come on, let’s get real about what occupational therapists know about! (end of rant!).

Zhu, M., Dong, D., Lo, H. H., Wong, S. Y., Mo, P. K., & Sit, R. W. (2022). Patient preferences in the treatment of chronic musculoskeletal pain: a systematic review of discrete choice experiments. Pain. 164(4). 675-689. https://doi.org/10.1097/j.pain.0000000000002775