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

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

“… 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.

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

“N-of-1” research – A clinically relevant research strategy!

I’ve been banging on about single case experimental research designs (SCED) ever since I studied with Prof Neville Blampied at University of Canterbury. Prof Blampied (now retired) was enthusiastic about this approach because it allows clinicians to scientifically test whether an intervention has an effect in an individual – but he took it further with a very cool graphical analysis that allows multiple cases to be studied and plotted using the modified Brinley Plot (Blampied, 2017), and I’ll be discussing it later in this series. Suffice to say, I love this approach to research because it allows clinicians to study what happens especially when the group of participants might be quite unique so RCTs can’t readily be conducted. For example, people living with CRPS!

Krasny-Pacini & Evans (2018) make the case that SCED are useful when:

1. Evaluating the efficacy of a current intervention for one particular patient in daily clinical practice to provide the best treatment based on evidence rather than clinical impressions;
2. Conducting research in a clinical rehabilitation setting (outside a research team) with a single or few patients;
3. Piloting a novel intervention, or application/modification of a known intervention to an atypical case or other condition/type of patients that the intervention was originally designed for;
4. Investigating which part of an intervention package is effective;

5. working with rare conditions or unusual target of intervention, for which there would never be enough patients for a group study;

6. Impossibility to obtain a homogenous sample of patients for a group study;
7. Time limitation (e.g. a study needing to be completed within 8 months, e.g. for a master degree research. . .) or limited funding not allowing recruitment of a group.

So let’s think of how we might go about doing a single case experiment in the clinic.

First step, we need to think hard about what we want to measure. It’s not likely you’ll find an already-developed measure that is tailored to both the person and the treatment you want to use. There are key characteristics for this measure that you’ll need to consider (these come from the SCRIBE guidelines – see Tate, et al., 2016). You’ll want to look for target behaviours “relevant to the behaviour in question and that best match the intervention as well as accurate in their measurement”; “specific, observable and replicable”; “inter-observe agreement on the target behaviour is needed”.

You’ll also want to think of the burden on the person completing the measures, because mostly these will be carried out intensively over a day/week or even a therapy session.

Some examples, drawn from the Krasny-Pacini & Evans (2018) paper include:

• the number of steps a person does in a day
• time it takes to get dressed
• VAS for pain
• self-rated confidence and satisfaction with an activity
• Goal attainment scale (patient-specific goals rated on a scale between -2 and +2) – this link takes you to a manual for using GAS [click]
• the time a person heads to bed, and the time they wake up and get out of bed

You can choose when to do the measurements, but because one of our aims is to generalise the learning, I think it’s useful to ask the person to complete these daily.

You’ll also need to include a control measure – these are measures that aren’t expected to change as a result of your therapy but are affected by the problem and help to demonstrate that progress is about the therapy and not just natural progression or regression to the mean, or attention etc. For example, if you’re looking at helping someone develop a regular bedtime and wakeup time, you might want to measure the time they have breakfast, or the number of steps they do in a day.

Generalisation measures are really important in rehabilitation because, after all, we hope that what we do in our therapy will have an effect on daily life outside of therapy! These measures should assess the intervention’s effect on ‘untrained’ tasks, for example we could measure self-rated confidence and satisfaction on driving or walking if we’ve been focusing on activity management (pacing). We’d hope that by using pacing and planning, the person would feel more confident to drive places because they have more energy and less pain. It’s not as necessary to take generalisation measures as often as the target behaviour, but that can be an option, alternatively you could measure pre and post – and of course, follow-up.

Procedural data are measures that show when a person implements the intervention, and these show the relationship between the intervention and the target we hope to influence. So, if we’ve used something like a mindfulness exercise before bed, we hope the intevention might reduce worry and the person will wake feeling refreshed, so we’d monitor (a) that they’ve done the mindfulness that night; (b) that they feel less worried in the morning; and (c) that they wake feeling refreshed. All of these can be measured using a simple yes/no (for the mindfulness), and a 0 – 10 numeric rating scale with appropriate anchors (for less worry, and feeling refreshed).

If you’re starting to think what you could measure – try one of these yourself! Start by deciding what you’d like to change, for example, feeling less worried. Decide on the intervention, for example using a mindfulness activity at night. Add in a measure of ‘feeling refreshed’. Keep a notepad by your bed and each night, record whether you did the mindfulness activity, then in the morning record your level of worry 0 = not at all worried, 10 = extremely worried; and record your feeling of refreshment 0 = not at all refreshed, 10 = incredibly refreshed.

If you want to, you can set up a Google Docs form, and graph your results for each day. At the end of each day you could include a note about how stressful your day has been as another measurement to add to the mix.

For patients, using text messaging is really helpful – if you have a clinic SMS service, you could use this to send the text messages to your client and they can text back. Many of the SMS services can automatically record a client’s response, and this makes it easy to monitor their progress (and yours if you want to try it out!).

There are some other designs you can use – and remember I mentioned you’d usually want to record a baseline where you don’t use the intervention. As a start, do this for at least a week/seven days, but you’re looking to establish any patterns so that when you do the intervention you can distinguish between random variations across a week and change that occurs in response to your therapy.

Have a go – and let me know how it works for you!

Blampied, N. M. (2017). Analyzing Therapeutic Change Using Modified Brinley Plots: History, Construction, and Interpretation. Behavior Therapy, 48(1), 115-127. https://doi.org/https://doi.org/10.1016/j.beth.2016.09.002

Krasny-Pacini, A., & Evans, J. (2018). Single-case experimental designs to assess intervention effectiveness in rehabilitation: A practical guide. Annals of Physical & Rehabilitation Medicine, 61(3), 164-179. https://doi.org/10.1016/j.rehab.2017.12.002

Tate, R. L., Perdices, M., Rosenkoetter, U., McDonald, S., Togher, L., Shadish, W., Horner, R., Kratochwill, T., Barlow, D. H., Kazdin, A., Sampson, M., Shamseer, L., & Vohra, S. (2016). The Single-Case Reporting Guideline In BEhavioural Interventions (SCRIBE) 2016: Explanation and elaboration. Archives of Scientific Psychology, 4(1), 10-31. https://doi.org/10.1037/arc0000027

New year, new you! 10 Steps to Change Your Life!

Are you setting goals for this year? Did you decide to get fit? Eat healthier? Spend more time with your family? Be more mindful? Read on for my famous 10 steps to change your life!

Bah, humbug!

Reflect for a moment on what you’ve just read. Head to Google and do a search using the terms “New Year” and see what you come up with. My search page showed, amongst all the horrific news of car smashes and events for the holiday season, topics like “New Year Bootcamp: Get rid of your debt”, “cook something new every week”, “read more books”, “create a cleaning schedule you’ll stick to”…

Ever wonder why we do this? Every single year?

First, we buy into the idea that our life right now isn’t good enough. There are improvements we can [read ‘should’] make.

Then we decide what “good” looks like. Better finances, healthier diet, less time on devices, cleaner and tidier house…whatever.

We then read all the things we should do – apparently, improving body, mind and soul is good for… the soul.

The popular “experts” then tell us to use a planner, tick off daily fitness goals, and tackle small actions frequently.

Betcha like anything most of us will fail. Even if we begin with the best of intentions.

This year, I’m not doing “goals” – I’ve bought into the over-use of SMART goals for too long, and I’m rejecting them. Why? Because life begins to look like a whole bunch of tick boxes, things to do, keeping the “eye on the prize” at the end. But when is “the end”? Is it a set of “yes! I’ve done it” achievements? Little celebrations? Or do we feel coerced into setting yet another goal? Can goals prevent us from being present to the intrinsic nature of daily life? I think so, at least sometimes. A goal focus can take us away from appreciating what we have right now, while also detracting from the process of going through each day. We can lose the joy of running, for example, if we’re only looking to the finish line. We can forget the pleasure of fishing in beautiful natural surroundings if we’re only looking to hook a fish!

So, as a start to this year, I’m sitting still. I’m noticing my Monday morning routine as I slurp my coffee and sit at my computer to write my blog. I’m making a choice to be present with my thoughts and ponderings. I’m looking back at the blog posts I’ve made since 2007 – all 1262 of them! – and feeling proud of my accomplishment. I’m revisiting my “why” or the values that underpin my writing. I’m acknowledging that I’ve chosen to put my voice out there, whether others read what I write or not (FWIW readership is low compared with the heady days of 2008 and 2009!). These choices aren’t in a weird pseudo-spiritual mindful sort of way, just a nod to my habits and the underlying reasons for doing what I do.

I’ve been pondering the drive clinicians have to set goals with patients, and to record achievements. As if these exist outside of the person’s context and all the other influences on what a person can and does do. There are even posts declaiming patients for not “doing the work” even after the explanations and rationales are presented, as if the only factor involved in doing something is whether it has a good enough reason for it to be done. This attitude is especially pertinent when a person lives with persistent pain, and is embroiled in a compensation system with expectations for recovery.

I suppose I’m looking for more attention to be paid to strengths people demonstrate as they live with persistent pain. More awareness of the complexity of living with what persistent pain entails (see this post for more). And for us as clinicians to be more content with what is, despite limitations and uncertainty, ambiguity, frustration and limited ‘power’ to make changes happen.

Contentment is at the heart of “fulfillment in life” (Cordaro, et al., 2016). It’s an emotion with connotations of peace, life satisfaction, and, again according to Cordaro and colleagues, “a perception of completeness in the present moment.” In English, contentment invokes a sense of “having enough” and a sense of acceptance whether the situation is desirable or undesirable (Cordaro, et al, 2016, p.224). Contentment, in contrast to happiness, is considered a low arousal state: that is, when we feel content we experience reduced heart rate, skin conductance and is associated with serotonergic activity, while happiness in contrast activates higher arousal states including dopaminergic responses (Dustin et al., 2019). The table below gives some interesting comparisons between the “reward” and the “contentment” states in humans – take it with a grain of salt, but it makes for useful pondering.

When we think about helping people with persistent pain, how often do we consider contentment as a long-term outcome? To be content that, despite all the hard work the person and their healthcare team and their family and colleagues, this person has achieved what they can. Do we even have this conversation with the person? Giving them the right to call it quits with constantly striving for more.

How can we develop contentment for ourselves and for the people we work with? Should we guide people towards activities that foster contentment? These will likely be the leisure activities that take time, that involve giving without a focus on receiving, that calm people, that invoke nurturing (plants, animals, people), and probably those that involve moderate intensity movement practices (Wild & Woodward, 2019). I hope we’ll draw on occupational therapy research and practice, because these activities will likely be long-term practices for daily life contentment, and daily life is our occupational therapy focus.

For ourselves, I suspect fostering contentment will be more difficult. Our jobs, often, depend on finding out what is wrong and setting goals for a future state, not ideal for those wanting to be OK with what is. We often work in highly stressful and demanding contexts with numerous insults to our moral ideals and values. We debate ideas and approaches to our work with vigour. We make judgements about our own performance and that of others. We often find our expectations aren’t fulfilled and that we can’t do what we think/know would be better.

I’ll leave you with a series of statements about contentment compared with other states that can be related to contentment (Cordaro et al., 2016, p.229). It helps clarify, perhaps, what we might do for ourselves in this new year. Happy 2023 everyone!

Cordaro, D. T., Brackett, M., Glass, L., & Anderson, C. L. (2016). Contentment: Perceived Completeness across Cultures and Traditions. Review of General Psychology, 20(3), 221-235. https://doi.org/10.1037/gpr0000082

Dustin, D. L., Zajchowski, C. A. B., & Schwab, K. A. (2019). The biochemistry behind human behavior: Implications for leisure sciences and services. Leisure Sciences, 41(6), 542-549. https://doi.org/10.1080/01490400.2019.1597793

Lustig, R. (2017). The hacking of the American mind: The science behind the corporate takeover of our bodies and brains. New York, NY: Avery.

Wild, K., & Woodward, A. (2019). Why are cyclists the happiest commuters? Health, pleasure and the e-bike. Journal of Transport & Health, 14. https://doi.org/10.1016/j.jth.2019.05.008

On making things easier…Occupational therapists and ‘compensatory’ approaches

If there is one part of occupational therapy practice that gets more of my middle-aged grumpiness than any other, it’s occupational therapists using compensatory approaches for managing pain. And like anything, it’s complicated and nuanced. So here’s my attempt to work my way through the quagmire.

Compensatory approaches consist of a whole range of interventions that aim to “make up for” a deficit in a person’s occupational performance (see Nicholson & Hayward (2022) for a discussion of compensatory approaches in “functional neurological disorder”). The rationale for compensatory approaches is that by employing these strategies, a person is able to do what they need and want to do in daily life: the raison d’etre for occupational therapy (WFOT, 2012). End of story, right? If the person wants to be able to use the toilet independently, then a piece of equipment (a rail, a toilet seat, a long-handled wiper, easily removed and replaced clothing) makes sense, surely?

Short answer is no, not always. And long answer is – well, it depends.

First of all, let’s take a quick look at compensatory approaches used with people experiencing pain. Remember that people seeing occupational therapists may have acute post-surgical pain (eg post arthroplasty pain) or they may have long-term pain from conditions like osteoarthritis, rheumatoid arthritis, multiple sclerosis etc. In an acute hospital setting, it makes sense for someone to be helped to leave the hospital ward by providing them with a safe way to manage important daily life tasks such as using a toilet, shower/bath, getting dressed, making a meal. The intention behind using a compensatory approach is to give short-term strategies to foster independence, or to provide strategies to “make up for” functional deficits the person may never overcome.

The strategies can include adaptive equipment – I’ve mentioned the ubiquitous raised toilet seat and rails, but there are also chair raisers, bathboards, commodes, kitchen trolleys and so on. Strategies can also include “ergonomic”* approaches intended to reduce biomechanical demands, and often applied in the workplace such as adjustable office chairs, wrist rests, monitor height adjustment, sit/stand desks, lighting etc. Occupational therapists might discuss task simplification, where people are encouraged to consider whether a task needs to be done, needs to be done in a particular way, needs to be done right now, or needs to be done by that person. Activity pacing could be added to the list: choosing when and how to carry out various daily life tasks over the course of a day, a week, a month. So far, so good.

The problems arising from this approach lie in its long-term use, or use in a rehabilitation context. Let me unpack why.

In rehabilitation, our aims are to support a person to go through a process of change (relating to their health and the impact of a disease or disorder) that aims to enhance health outcomes including quality of life (Jehanne Dubouloz, et al., 2010). The person’s capabilities are in a state of flux during this process, and our intentions are (usually) to improve the person’s ability to do daily life tasks. Early rehabilitation might occur in a hospital setting, but generally the expectation is that the person will end up doing their daily life in their own context. In many cases, people don’t get admitted to a hospital, but receive all their rehabilitation as an outpatient, or in their own home.

In persistent pain management and rehabilitation, there are often two phases: 1) the secondary prevention phase, where the focus is on reducing or ameliorating the impact of pain on daily life and often focusing on reducing pain, increasing function, reducing healthcare use, reducing distress and enhancing quality of life. 2) the tertiary prevention phase, where the focus is less on reducing pain (although this is still part of the picture) and much more on helping the person do what matters in daily life in the presence of pain, increasing function, reducing healthcare use, reducing distress and enhancing quality of life. Good examples of occupational therapy for persistent pain are in the literature, although like most interventions, the results are equivocal (eg Nielsen, et al., 2021). The main distinction between these two phases lies in how much attention is paid to pain reduction or elimination. Perhaps this is where so many of our conversations about pain management and rehabilitation come unstuck, because the point at which we (the person and his or her clinician) discuss the likelihood of pain persisting despite all of our best efforts is pretty opaque. We simply don’t know, and we have very little to guide us, and furthermore, both clinicians and people living with pain are loath to talk about what is a highly challenging topic. More about that some other time!

For occupational therapists, offering compensatory equipment during the secondary prevention phase might be where we come unstuck. While they help the person do what matters to them, if they are not reviewed and gradually removed, they can foster remaining stuck with that technique or strategy with all its inherent limitations.

What are those limitations? Well, take the example of a raised toilet seat – great when it’s available for use in a person’s home, but pretty darned useless when that person is out doing the grocery shopping, visiting another family member, going to a restaurant or the cinema. Toilet seat raisers are not the easiest thing to carry around! Similarly with a cushion to make sitting easier: fabulous for reducing discomfort, but then you have to carry the thing around wherever you go!

My point is that when a person’s capabilities are changing, so must our solutions. Occupational therapists need to be responsive to changes in a person’s function, and change compensatory strategies accordingly. When this doesn’t occur, we risk working at odds with the rehabilitative approach used by other team members.

Am I saying don’t use compensatory approaches? Not at all! I’ll be very happy to use task simplification or a shower stool if I return home following hip or knee arthroplasty. And if my cognitive capabilities are limited as they were when I had post-concussion syndrome, I’m very happy to incorporate activity management, fatigue management and compensatory ‘aide memoirs’ (my ever-handy lists and diary!) as part of my life – until I don’t need them any more. Thankfully I had great therapists who helped fade or withdraw the range of compensatory supports I used as my recovery progressed.

Soon I’ll be writing about a framework occupational therapists (and other rehabilitation and pain management clinicians) can use to review their therapeutic approaches. In the meantime, it’s crucial for occupational therapists to take the time to understand the factors contributing to a person’s difficulty doing daily life. If those factors are able to be changed, and if the context is not constrained by “we must get this person out of hospital”, then perhaps we need to stop and think carefully about when, where and whether a compensatory approach is useful.

*I use the term “ergonomic” in quotes because technically, ergonomic approaches are not just about office equipment, but is actually a larger and almost philosophical practice of ensuring that work fits the person/humans doing the tasks. It sprang from work undertaken during the Second World War when it was found that dashboards on aeroplanes, and the machines that fabricated parts for them, did not work for most people. Essentially, it is a systems-based approach to ensuring human capabilities and limitations are considered during the design of workplaces to minimise errors, maximise productivity, reduce cognitive load, and enhance performance.

Jehanne Dubouloz, C., King, J., Ashe, B., Paterson, B., Chevrier, J., & Moldoveanu, M. (2010). The process of transformation in rehabilitation: what does it look like?. International Journal of Therapy and Rehabilitation, 17(11), 604-615.

Nicholson, C., Hayward, K. (2022). Occupational Therapy: Focus on Function. In: LaFaver, K., Maurer, C.W., Nicholson, T.R., Perez, D.L. (eds) Functional Movement Disorder. Current Clinical Neurology. Humana, Cham. https://doi.org/10.1007/978-3-030-86495-8_24

Nielsen, S. S., Christensen, J. R., Søndergaard, J., Mogensen, V. O., Enemark Larsen, A., Skou, S. T., & Simonÿ, C. (2021). Feasibility assessment of an occupational therapy lifestyle intervention added to multidisciplinary chronic pain treatment at a Danish pain centre: a qualitative evaluation from the perspectives of patients and clinicians. International Journal of Qualitative Studies on Health and Well-being, 16(1), 1949900.

World Federation of Occupational Therapists. Statement of occupational therapy. 2012. http://www.wfot.org/about-occupational-therapy.

Frustration in the clinic

I’m prompted to write this post because it’s something I see in social media so often – a clinician gets frustrated. Things don’t work. The person getting treatment doesn’t respond in the way that was expected. The person doesn’t look like what the clinician usually sees. The evidence doesn’t fit with practice. All the things! So I thought today I’d write about emotions and thoughts that might turn up – and what might underlie those feelings. (For people living with pain – we also have frustration in the clinic. Things don’t work out. The therapist isn’t what we expected. I’ll write more about this soon!)

Emotions are a complex reaction pattern, involving experiential, behavioral and physiological elements (https://dictionary.apa.org/emotion). From a cognitive behavioural perspective, an event happens, we appraise it (judge it), and we experience an emotion – then we do something as a response. It’s much more complex than this, and each part interacts with the others – so we end up with a big diagram looking something like this: (from – https://www.researchgate.net/figure/Cognitive-behavioral-therapy-model-of-depression_fig1_338695579).

Instead of “depressive”, just put in “beliefs/expectations about who I am and what I can expect from myself”. This is a pretty generic model in CBT, and is well-established even if there are plenty of arguments about accuracy and adequacy!

Clinicians generally want to help. Yes, some are in it for fame or fortune (choose something else, kthx), but on the whole people enter a clinical profession because they think they can do some good, and people will “get better.” Our communities hold long-standing expectations about what seeing a health professional should entail: read Benedetti’s “The Patient’s Brain” for a much more detailed description of the historical and evolutionary basis for a therapeutic encounter.

Why does this matter? Because it sets the scene for how we think a therapeutic encounter should go.

Rules and assumptions about what “ought” to, or “should” happen often underlie emotions.

We’re happy when all the things line up and the patient does what we expect of patients while the clinician does things that work. When things don’t go to plan (ie our expectations are violated) that’s when we get some feelings, and they can be pretty big.

What do we expect from patients?

Despite moves towards person-centred care where patients are seen as people and clinicians offer options rather than dictate orders, our societies still hold expectations about the roles a patient and a clinician should play.

Patients are expected to seek help when they’re sick. They’re expected to be truthful about their symptoms, and tell clinicians everything that is relevant about their condition – AND about any other aspect of their health, even if it’s not immediately relevant to their current problem. Symptoms experienced by patients are expected to be what the clinician expects, and the disease a patient has should fit within “typical” parameters (usually based on males). Patients are also expected to follow instructions, not do things that go against instructions, and of course, to get better. Patients are meant to be grateful for their treatment, even if it’s disruptive, has unpleasant side effects, or isn’t 100% effective. Patients should do their best all the time.

As a corollary, clinicians have a huge number of expectations they take on (and are given!). Some of us have these explicitly handed to us during our training, while others find they’re an implicit set of assumptions that we adopt, perhaps in the guise of “being professional.”

What do we expect from clinicians?

Clinicians expect to be in control in the clinical encounter. We’re expected to know what to ask about, and from this, what to test for. We’re expected to have the answers, and be right. We’re also expected to be calm, caring and focused – even when our personal lives are topsy-turvy. We’re meant to know what the patient wants, and how to give that to them. We’re also expected to be up-to-date, do no harm, change our practice according to evidence (even when that evidence is contradictory, or just emerging), and to stay interested in our work even if we’ve been doing it for years.

We’re expected to know our scope of practice, but practice using a broad “whole person” framework even if we were never trained to do this. We think we should be compassionate and caring, even if we were selected for training on the basis of our academic prowess and not on emotional literacy. We must take on responsibility for outcomes, even though we’re not there to “make sure” the patient “does what they’re told” in their own time. We assume when we tell someone to do something, they’ll drop everything in their life to do it – because their health should matter most, and even when other things in their life matter more.

Clinicians can be expected to practice independently from the moment they qualify, and are either “right” or “wrong” and never shades of in between. Clinicians expect that if something goes wrong, and the person doesn’t get better, it’s either the person’s fault (they didn’t do what they should have done), or the clinician has done something wrong and made a wrong diagnosis, or chosen the wrong treatment (or the treatment was right but the intensity was wrong…. so just do it again). And clinicians shouldn’t ask for emotional help because that means they’re “too emotionally invested” or “not distanced enough.”

Expectations suck

We all have them. And the ones I’ve listed above, while not always present, often underpin the way we expect clinical encounters to go. Many of them are implicit, so we don’t even realise we hold them – until BAM! Something goes wrong.

When expectations are violated, we feel emotions and some of these can be pretty strong. Many are less strong, just little niggles, little irritations, a bit of cynicism, some disappointment, some frustration. And they go both ways: people seeking help, and people trying to help. Over time, violated expectations feel like your head hitting against a brick wall, or swimming against the tide, or just plain demoralisation or even burnout.

Ways through them

Some of us have professionally-endorsed support systems to help us. Occupational therapists and psychologists have mandatory clinical supervision with someone who is there for you, who supports your development as a clinician, who challenges your assumptions, who pokes and prods at your reactions, who encourages taking a broader view. Individual clinicians in other professions may also pick up on using supervision in this way.

Some of us don’t have that kind of support. So we seek it elsewhere – I suppose, in part, I started writing this blog those years ago to “find my tribe.” Social media is one way we get affirmation, validation and even (sometimes!) great ideas to help us shift our approach.

Some clinicians leave their profession, do something else that’s more lucrative and less emotional effort. Some move out of practice and into academia. Some use “outside work” interests to blow off steam, or give emotional space.

Some of us are a little fused with the assumptions we hold. It’s hard to create a little space around those assumptions, because they’re held so tightly (or they’re so deeply buried). When we do get a tap on the shoulder suggesting our beliefs are out of whack it can feel so terribly humiliating, so inherently WRONG that we shut off, or bite back.

Creating “wiggle room”

Slowing down is a good way to begin creating some space to feel what is showing up when we’re feeling frustration. This could be by taking one or two minutes at the end of a session to be present. Yes, a little mindfulness to notice what is present in the body. To be OK with being aware of emotions, thoughts, and body sensations. NOT TO CHANGE THEM! To simply be with them. (An explanation here: https://www.youtube.com/watch?v=v9NkUomOO_w). This helps in many ways, but it does not (and isn’t intended to) reduce them. It helps you notice that you’re having feelings. It helps you pay attention to your own state of mind. It can create a moment to ask yourself “I wonder why I feel this way?” It can help you be more present with the next person you see because you’re not carrying those feelings into the next encounter.

Reflective practice is another way to create some space to be human, feel things, be curious about why they happen, and check in with your own values. A great resource that’s freely available is Positive Professional practice: a strength-based reflective practice teaching model – it might be a ‘teaching’ model, but clinicians teach All The Time!

Taking small steps, making small changes

The first step towards making a change is knowing that it’s needed. And the second is knowing that it’s possible. The third? Knowing what to do. I hope these suggestions help a little in this seldom-discussed aspect of practice. My own preference is to question WHY do we hold these expectations? WHO made them a thing? WHAT purpose do they serve? WHEN might those expectations be a good thing – and when might they not? WHERE can we nudge just a little to make change? And preferably, as clinicians, I think it’s OUR job to make the adjustments because we’re not ill or sore or seeking help.

Some references:

Dobkin, P. L., Bernardi, N. F., & Bagnis, C. I. (2016). Enhancing Clinicians’ Well-Being and Patient-Centered Care Through Mindfulness. Journal of Continuing Education in Health Professions, 36(1), 11-16. https://doi.org/10.1097/CEH.0000000000000021

Huft, J. (2022). The History and Future of the Sociology of Therapy: a Review and a Research Agenda. The American Sociologist, 53(3), 437-464. https://doi.org/10.1007/s12108-022-09534-3

McGarry, J., Aubeeluck, A., & De Oliveira, D. (2019). Evaluation of an evidence-based model of safeguarding clinical supervision within one healthcare organization in the United Kingdom. International Journal of Evidence-Based Healthcare, 17 Suppl 1, S29-S31. https://doi.org/10.1097/XEB.0000000000000180

Spencer, K. L. (2018). Transforming Patient Compliance Research in an Era of Biomedicalization. Journal of Health and Social Behavior, 59(2), 170-184. https://doi.org/10.1177/0022146518756860