Catastrophising – and controversy

There are few constructs more widely known in pain psychology than catastrophising. Defined as “an exaggerated negative mental set brought to bear during actual or anticipated pain experience” (Sullivan et al., 2001), catastrophising is associated with poor outcomes including greater pain intensity, distress and disability in almost every situation where pain is experienced (Sullivan & Tripp, 2024). Cognitive biases associated with catastrophising include interpretive bias, attentional bias and attentional fixation – in other words negatively interpreting situations, attending to the negative in a situation, and being unable to stop attending to what is troubling.

The term originally came from mental illness and the work of Ellis and Beck, where catastrophising was used to describe a focus on the worst possible outcome in a situation, or tending to overestimate the probability of a negative event. In pain research it was adopted by Sullivan and colleagues and thought to be ‘an exaggerated threat appraisal.’ In other words, making a mountain out of a molehill.

There are some troubling aspects to this term, and in the way it has been used with people living with pain. While it is strongly associated with negative outcomes, it’s important to dig a little more deeply into what is being measured and how. It’s also important to know how people living with pain experience this term, and to understand the way it has been used and abused to describe people with pain. My post this week and next will cover some of this!

About four years ago, much of the world experienced a collective moment of what we could now consider to be catastrophising. Remember then? It was at the start of the Covid-19 pandemic when nobody knew how the disease was transmitted, thousands of people were dying, and the global response was shutdown. Remember the toilet paper shortage? We might laugh now, but at the time we were really afraid. Anticipating the worst and planning for it, is a common human response to the unknown, even if some of us do this more than others.

For people with pain, particularly weird pain like complex regional pain syndrome or a bout of particularly nasty low back pain that doesn’t respond to the usual strategies, it doesn’t seem too far-fetched to worry like fury and to not be placated by reassurance. Especially if that reassurance is along the lines of ‘trust me, there’s nothing to worry about.’ Even more especially if that person has seen what has happened to others with similar problems. And then does an internet search and finds social media posts on the evils of lifting with a rounded back! We have to ask if pain-related distress is a realistic concern based on past experiences, patronising clinical responses (or worse, fear-evoking ones), and a sense of personal inadequacy to deal with weird pain. After all, if clinicians don’t know what to do, how would I, as an individual, know what it all means?

Turning to measurement now, and the main pen and paper measures used for this construct. A paper by Crombez and colleagues (2020) investigated item content validity, important psychometric property of measures for catastrophising. Most of us would know about construct validity (does it measure what we think it measures?), predictive validity (does it predict something important in the real world?), divergent and convergent validity (does this measure align with other similar measures, and differ appropriately with other measures that it shouldn’t relate to?)… Item content validity looks at the individual items within a measure, and asks participants to identify which construct that item looks like it taps into. Crombez and colleagues undertook this with several measures of pain catastrophising, using discriminant content validity method. They identified six constructs associated with the term pain catastrophising (including pain catastrophising); they then sought definitions for these using Oxford Dictionary definitions to avoid any theoretical bias. All measures that had been used to assess pain catastrophising were identified and the items extracted. In addition to the pain catastrophising items, they selected items that could be appropriate for the other five constructs, and included these in the list. Participants were then asked two questions for each item: 1) Did the item assess [insert construct]? yes or no; and 2) how confident participants were about their judgement (on a 0 – 10 scale anchored by 0% confidence and 100% confidence). The definition of pain catastrophising used in this study was ‘‘to view or present pain or pain-related problems as considerably worse than they actually are.’’

Cutting to the chase (but please do read the paper! It’s very thorough), using Bayesian hierarchical models, they analysed the items and responses. What they found is pretty challenging to read. Of the six instruments all considered to measure catastrophising, the CSQ (Coping strategies questionnaire, Rosenstiel & Keefe, 1983) and the AEQ (Avoidance Endurance Questionnaire, Hasenbring, Hallner & Rusu, 2009) was thought the most credible for measuring pain catastrophising, while the PCL (Pain cognition list, Vlaeyen et al., 1990) was not thought to measure the construct. Interestingly, the PCS (Pain catastrophising scale, Sullivan, Bishop & Pivik, 1995) was at the lower end of the rating, so participants didn’t think it measured what they thought of as catastrophising.

The next part of the study was intriguing: using the statistical analysis, the authors developed models comparing the score for ‘pain catastrophising’ to those for the five other constructs. This tells us how well each item was judged to fit the constructs under investigation. If the items from a measure fit the common understanding of ‘pain catastrophising’ we’d expect more people to agree with this, and with confidence. Hopefully the most commonly-used measure would be most closely associated with the construct as understood by these participants. But… you guessed it, none of the six instruments distinctively assessed pain catastrophising – most had content that participants judged to better fit the constructs ‘worrying about pain’ or ‘pain-related distress.’ Oooops.

What does this mean? Well firstly it’s going to rock a few boats because the PCS and pain catastrophising has been so extensively associated with poor outcomes. In fact, the authors stated in a recent paper (Crombez, Scott & De Paepe, 2024) “The message was clear, but not well received. The manuscript was rejected by many journals in the field. Admittedly, no study is perfect, but many comments of the reviewers were in line with the idea that “pain catastrophizing” has become “entrenched,” and resistant to change.” Note to researchers everywhere: if what you find doesn’t fit with the received view, it’s not going to get into print.

Then we need to do some serious thinking: if the measures used to assess pain catastrophising don’t measure what we think they do, what do we do with the accumulated findings based on their use? No, don’t toss that research on the scrapheap, the findings are what they are, and validly and reliably show that when people endorse the items in the PCS, the outcomes they report are not as positive as those who report lower levels of endorsement. What we need to question is what it is we are measuring. If not ‘catastrophising’ – then what? And why does it matter?

I do like the suggestion by Crombez and colleagues (Crombez et al., 2020; Crombez et al., 2024) that the term be removed and replaced by ‘pain related worry.’ Sullivan & Tripp think this trivialises the impact of catastrophising. Worry is somewhat ‘less’ – and they argue that if pain-related worry was the construct being measured, then surely studies examining worry and pain catastrophising would be similar (Sullivan & Tripp, 2024). However, pain-related worry is a little different from general worry, and I wonder if the items used to investigate pain-related worry represent what people who are worrying about pain actually think and do. The second point Sullivan and Tripp make is that by changing the term, the research that’s accumulated becomes somewhat suspect. I don’t agree: it stands as it is. We refine and reformulate concepts and models as we accumulate new information, and at least part of this process involves redefining what we call things.

The most compelling argument for changing the constructs name is that we simply do not have a gold standard way to measure ‘how bad’ the threat of pain is in people. There is no ‘predictor’ for the impact of pain on a person. Pain is subjective and my life experience and future hopes and dreams are similarly subjective. How can someone judge whether my worry about the impact of something on my life is ‘exaggerated’? Given the very real effects of pain on individuals’ lives including work life, relationships, sleep, mood, doing important things, AND paired with the often unhelpful information given to people by health professionals for many people the worry is absolutely on point. Unhelpful, but that’s a totally different topic.

Next week: the perspectives of people with pain….

Crombez, G., De Paepe, A. L., Veirman, E., Eccleston, C., Verleysen, G., & Van Ryckeghem, D. M. L. (2020). Let’s talk about pain catastrophizing measures: an item content analysis. PeerJ, 8, e8643. https://doi.org/10.7717/peerj.8643

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

Rosenstiel AK, Keefe FJ. 1983. The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain 17(1):33–44 DOI 10.1016/0304-3959(83)90125-2.

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

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

Vlaeyen JWS, Geurts SM, Kole-Snijders AMJ, Schuerman JA, Groenman NH, Van Eek H. (1990). What do chronic pain patients think of their pain? Towards a pain cognition questionnaire. British Journal of Clinical Psychology 29(4):383–394 DOI 10.1111/j.2044-8260.1990.tb00901.x.

Self monitoring – focusing on pain too much? or an essential part of living with pain?

I was just a tiny bit surprised when I looked at the results of my self-management strategy survey: self monitoring was smack bang in the middle of the list! Take a look yourself –

Self monitoring is not something we discuss much in pain management circles. It’s like ‘Oooh if you keep noticing your pain you’re fixating on it and that’s bad!’ and yet I suspect it forms part of the background interoceptive awareness that most of us do whether we live with pain or not.

Let’s take a deeper look at it.

The ‘definition’ I used was ‘noticing your pain intensity, thoughts, activities and varying your expectations so you can do what really matters’ – in other words, being aware of how you’re feeling (noticing) and making deliberate decisions about where to spend your energy/time.

Interoception is a fundamental process in body awareness and homeostasis. Quigley and colleagues (2021) describe a function of interoception as ‘signaling about the body’s energy status, which then drives the behaviours needed to renew energy resources’ (Quigley, et al., 2021). Philosophical questions about assumed functions aside, the term is used to refer to ‘the overall process of how the nervous system (central and automatic) sense, interprets, and integrates signals originating from within the body, providing a moment-by-moment mapping of the body’s internal landscape across conscious and unconscious levels’ (Berntson & Khalsa, 2021). In other words, this system (process?) gives us information on what is happening in the body that we then respond to either with involuntary/below conscious awareness responses, or voluntary/consciously aware behaviour. By knowing about the internal body state we can be guided to rest, eat, be active, be afraid, be curious, explore or withdraw and hide.

We would think, then, that because this system/process aids our survival, we’d be pretty tuned to what’s going on and act accordingly. BUT if you’ve ever found yourself watching an engrossing movie, or been out with friends, knowing you need to pee but just not going – you know that feeling the feels doesn’t always mean doing the doing! And for people who have particular jobs (the Beefeaters, bakers, pilots, models….) where the urge to deal with body sensations must be suppressed because [reasons], the ability to over-ride body sensations and focus on the task is critical. In fact, kids in school need to learn when it’s OK to pee, eat or wriggle – and it’s those kids who have a hard time developing social skills (ADHD, ASD etc) that often raise the ire of teachers.

So, we learn what our normal ‘body states’ are and develop strategies to periodically over-ride the initial urge to do something in response in order to live in a social world.

For people living with something like widespread body pain (aka fibromyalgia) one of the challenges is that our bodies are ‘over-sensitive’ – so sitting for me is not my favourite thing, at least, not without wriggling a lot. In one sense, my interoception is a little over-jigged, while part of me wonders whether in learning how not to ‘over-react‘ I’ve maybe learned to be a bit insensitive. Di Lernia et al (2016) conducted a systematic review that found that people with chronic pain might have low accuracy for things like noticing their heart rate, and the labeling of those interoceptive experiences might not be terribly accurate. The challenge is studying these processes without confounding the findings with after-the-fact beliefs or justifications (see below).

But interoception is also about hunger and satiety – and we’re moving into Christmas, so there are all those cues to eat and drink foods we wouldn’t normally have and in quantities we wouldn’t normally eat. Tied in with this is memory (ever felt hungry around dinner time even thought you ate a large lunch?) and emotions. One theorist argues that emotions are ‘interoceptive sense data that are categorised in a specific situation using an emotion concept’ (Quigley et al., 2021; Seth, 2013). In other words, we experience our ‘self’ as an organism with a ‘this is how my body feels’ in various contexts based on integrated predictions from past experiences that in turn help us decide what to do and how we feel. In part, our thoughts might emerge out of these interoceptive senses almost as cognitive justifications or explanations after the fact.

Where does all this lead us when it comes to self-management? Well, one thing we all might benefit from remembering is that interoception, like all our sensory and perceptual apparatus, likely varies across individuals. Some of us are probably more sensitive and aware of how ‘we’ feel, while others might be less so. The effect of pain that persists might influence the attention a person places on both that area of the body – and perhaps other areas of the body too (internal or external). Maybe by attending mindfully to how ‘we’ feel (internally and externally), people with pain can be less likely to over-focus or ignore sensory experiences. Some researchers are stimulating C-fibres at a particular frequency and pressure, to help reduce pain (Di Lernia et al., 2020), arguing that by amplifying the interoception a person’s system receives, they can develop a less reactive (ie reduced pain) response.

What I can say is that there are many anecdotes and a few reasonable studies showing that by learning to attend to (notice) the body and titrating activity levels accordingly people can allocate their energy to where they want to. It’s a kind of ‘pacing’ (but this is a vexed term, and more on this another time!) – and means that instead of pushing really hard to maintain the one level of activity, people can maintain a more flexible level of doing by acknowledging that sometimes we are simply tired, and need a break. In this instance please note I’m not talking about the ‘rehabilitation’ phase of therapy where increasing the amount a person can consistently manage is often the focus – what I’m talking about is the lifelong approach to managing activity, energy, emotions and daily doing that happens after rehabilitation is done and dusted.

You see, the thing is that people living with pain have lives. Lives aren’t the same from day to day, year after year. People do catch colds, grieve, celebrate, get enthused about something then decide it’s not going to be a long-term part of their world. We are always developing and evolving – noticing how we feel and our energy/emotions/thoughts can help us make decisions about what to prioritise in a day or a week. Focusing on pain to the exclusion of noticing anything else in life is probably not going to help you live life. Failing to notice what your pain is up to is equally likely not to help you live life. The former is ‘hypervigilance’ while the latter is a lot like ‘gritted determination.’ For me coming up to Christmas, I’m taking some time to notice my fatigue is a bit more than I’d like (and some random achey bits doing their thing too) so I’m not going to go leaping into Christmas shopping at the mall. I’m planning on a quiet internet shop so I don’t have to and I can instead spend my energy on making my home feel lovely and inviting. Flexibly persisting means being more like water than a wall.

Berntson, G. G., & Khalsa, S. S. (2021). Neural Circuits of Interoception. Trends Neurosci, 44(1), 17-28. https://doi.org/10.1016/j.tins.2020.09.011

Di Lernia, D., Lacerenza, M., Ainley, V., & Riva, G. (2020). Altered Interoceptive Perception and the Effects of Interoceptive Analgesia in Musculoskeletal, Primary, and Neuropathic Chronic Pain Conditions. J Pers Med, 10(4). https://doi.org/10.3390/jpm10040201

Di Lernia, D., Serino, S., & Riva, G. (2016). Pain in the body. Altered interoception in chronic pain conditions: A systematic review. Neurosci Biobehav Rev, 71, 328-341. https://doi.org/10.1016/j.neubiorev.2016.09.015

Quigley, K. S., Kanoski, S., Grill, W. M., Barrett, L. F., & Tsakiris, M. (2021). Functions of Interoception: From Energy Regulation to Experience of the Self. Trends Neurosci, 44(1), 29-38. https://doi.org/10.1016/j.tins.2020.09.008

Seth, A. K. (2013). Interoceptive inference, emotion, and the embodied self. Trends in Cognitive Sciences, 17(11), 565-573. https://doi.org/10.1016/j.tics.2013.09.007

“S/he’s just not taking the message on board” – A word to clinicians

I’ve heard it many times, probably said it myself some years back. You’ve presented an idea to the person, but they just don’t seem to be ‘getting it.’ What to do, what to do?

The context of this kind of problem is often when someone’s pain isn’t settling down, or when some kind of self-management strategy is being recommended. To the clinician, the message is probably quite logical: “Here’s some information about pain that I am telling you about” and the unspoken assumption is that the person ought to listen carefully, maybe ask some questions, but essentially accept what’s on offer. If it’s not information, it could be a strategy like using exercise or pacing or mindfulness or compassion… It’s The Solution to A Problem that the person has.

Now why would someone not accept what they’re told? After all, the health professional is the one with all the knowledge and the person asked for help, didn’t they?

Or not.

Let’s take a moment to step back and think about clinical interactions.

We know that two people in the interaction have agendas: the person comes with an idea of what they’re wanting, while the clinician is usually expert in certain areas they commonly work in. Both parties assume they know what the ‘transaction’ will look like, and the session may even follow the assumed transactional path. The problem is that the person may not get what they were looking for (they were never asked, and they never said), while the clinician stays doing what they think ought to be done. And then wonder why the person ‘hasn’t taken the message on board.’

In a clinical interaction there are power differences between the professional and the person, and typically the clinician is ‘in charge’. Therefore it’s up to the clinician to do the work to create a space where the person can ask for what they want. It’s also up to the clinician to do the work to check how their messages are landing.

It’s the person’s job to be as informed as possible before seeing the clinician, and to be honest about what they think about what’s being offered. They’re the experts in their own life, how their body feels, how they feel, what matters to them and whether a strategy ‘fits’ into their world.

So when I hear someone say a person ‘isn’t taking a message on board’ I want to know more.

• Was ‘the message’ addressing what the person really wanted help with?
• Was ‘the message’ tailored to suit the person’s values, priorities and language?
• Was the person ready for ‘the message’? (think stages of change here)
• What did other people around the person say/do with ‘the message’? (they may have disagreed with it, or been unsupportive)
• Was ‘the message’ suitable for different life contexts that we all live in?
• What else is the person having to do alongside ‘the message’? (especially in a rehabilitation setting where there are other clinicians doing their thing too)

If I’m the clinician, my job is to find out what the person wants from me, what their main concern is, how I can help them, their theory about why they’re having the problem. My next job (after listening carefully) is to find out what the person has already tried. There is no point in trying to do the same thing again and again and expecting a different result (you know what that defines, don’t you?!). I also want to find out what the person thinks might help. And in going through the things they’ve tried before, and what they think might help, I’m learning about the good and not-so-good of each option. I’m finding out WHY those things might not have worked. Why they didn’t ‘take the messages on board.‘

My next step is to work through my clinical reasoning and at the same time have my radar going to think about how my suggestions might land. I often pick up on a thing they’ve suggested, but I might tweak it a little, I may add some challenge or reduce the challenge. I may suggest an alternative – and give my explanation for why I’m making this suggestion. I always ask people to treat it as an experiment. Why? Because none of us know how the suggestion may play out for this unique person and their pain problem.

When the person returns, or before, find out what they noticed. And if they didn’t ‘take the message on board’ take some time to learn what was a greater priority. If something more important got in the way, this tells us something about what matters to the person. Then we can create a suggestion together that taps into the values this person holds.

A quick example? Someone was told to ‘use pacing’ at work. To take short breaks around every 25 minutes or so to either do some breathing, some stretching or change position. When the person came back, they said it didn’t work. They couldn’t do pacing this way. Why? Because they’re in a customer service role in a very busy workplace. Stopping to take a break was not OK for several reasons: if customers are waiting, they always come first. If they took a break, the rest of the team got antsy. If they’re off doing stretching customers look at them funny. And it’s really hard to remember to take a break that frequently, especially in a busy workplace. We looked at other ways to get through the day (distraction, the value she holds for being attentive to her customers, and brief movement snacks she could do in her planned meal breaks), and introduced some

Another example? A Māori woman was told she needed to take time out for herself, and to go do 20 minutes of mindfulness each day. As a busy Mum with several children, she also worked full time. In te Ao Māori, whanau (family) always come first. While taking 20 minutes out for yourself may not feel like much – if it gets in the way of really important values, we probably need to either look at why mindfulness might help her with her caring for whanau, or shift to something else that she can do with them.

These approaches come from my understanding of both motivational interviewing, and Acceptance and Commitment Therapy (ACT) – and my profound respect for the way people living with pain need to adjust their lives. As clinicians, we need to respect the lifestyles and values of the people we hope to help and try not to disrupt them any more than needed. Beginning with what people come up with themselves is not a bad place to start.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How confident are clinicians to deliver pain self-management?

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

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

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

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

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

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

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

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

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

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

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

Do clinicians know how to help people develop pain self management?

In recent posts I’ve been discussing pain self management and why it’s not only necessary, but inevitable for people living with pain. Today I turn my gaze to health professionals, and the skills needed to support developing self management – because it’s not the same as ‘telling’, or ‘educating’, or even ‘advising’.

Firstly, let’s check out what people with pain want in self management. Lim and colleagues (2019) conducted a systematic review examining studies identifying ‘health information needs’ of people with low back pain. I put that title in quotes because my initial response is “Is health information what people want?” or is this about what clinicians think people want? Anyhow from 41 studies (mostly qualitative) they found that people had a “…desire for a diagnosis, potentially contributing to expectations for and overuse of imaging. People with low back pain expressed a strong desire for clear, consistent and personalised information on prognosis, treatment options and self-management strategies, related to healthcare and occupational issues.” All well and good – until you poke a little more deeply and find that ‘Most participants wanted to learn specific exercises that they could perform to manage their LBP’ – and that was about all these authors extracted about self management from all these studies. The context of these studies were typically primary care or physiotherapy/musculoskeletal clinician settings, lending credibility to my thoughts that the contexts in which people expect treatment to ‘fix’ the problem may not be the most appropriate for developing self management skills.

Kongsted, Ris, Kjaer and Hartvigsen (2021) discuss ten points clinicians need to consider when supporting people to develop self management strategies, and place their approach within the model developed by Richard and Shea (2011). This model consists of three concentric circles of ‘self-care’ or healthy lifestyle behaviours, ‘self-management’ or managing the actual or potential impact of disease, ‘symptom management’ or actions to reduce symptoms, and healthcare advice, diagnosis and treatment. They embed their recommendations to clinicians within a cycle of planning, delivery and evaluation, with the core constructs being person-centredness, problem solving, and adjusting goals after evaluating the impact. Nice stuff. They include some helpful messaging about current clinical practice and how these can be turned into self management support – things like ensuring outcomes are ascribed to the person’s own actions rather than clinician’s hands or special exercises. Read the whole article as it’s very practical.

The critical elements in pain self management, in my ever so humble opinion, are that they need to fit into a person’s daily life and become second nature. There need to be many different ways to do the things a person needs (many strategies!), and the person needs to be able to select the appropriate strategy/ies to meet their own goals and priorities in that context. (For more on this, read about the Extended Evolutionary Meta-Model in an earlier post of mine – I argue we need to teach flexibility, resilience and meta-cognition as part of supported self management).

Now clinicians don’t, as a general rule, get a lot of training in how to be person-centred, to trust in the values and decisions people themselves make, to let go of the things they learned in school (and still learn in CPD). In short, learning how to coach or facilitate rather than tell. We graduate with a pretty clear professional identity, knowing that we’re recipients and disseminators of special knowledge not granted everyone and as a result, pretty keen to strut our stuff to anyone who hangs around long enough! The thing is, though, that our ‘special knowledge’ is typically full of assumptions and values that may not get questioned.

Kerns et al (2022) detail ‘psychologically’ guided core competencies for self management based on the IASP interprofessional curriculum for pain clinicians. Again I put ‘psychologically’ in quotes because while they can certainly be considered psychological, doing so can make these skills seem more complex than they need to be. They are, instead, a shift in attitude towards the person living with pain.

The four main areas are:

1. Pain is multidimensional and because of this, people and their experience of pain need to be respected with reassurance and empathy. Using active listening and motivational interviewing, clinicians are asked to promote the outcome of reducing pain interference rather than just pain intensity. Overall, clinicians are asked to support self-efficacy and optimism.

2. Pain assessment is more than biomedical and includes strengths, vulnerability, barriers and facilitators to engaging in things that matter (they call them goals, but I hate that term, and especially the SMART acronym!), while also evaluating what increases and reduces pain and pain interference.

3. Pain management is about person-centred self management where the person and the clinician develop a shared plan for achieving what matters (including subgoals, timelines), and use a decision-balance approach to evaluating the good/not-so-good in both short and long-term of any treatment/therapy options. General good health practices, disease management where that’s needed, and the use of medications should also be included.

4. The clinical and social context are incorporated so that relationships between the person and their clinical team are core. Issues like previous trauma, mental health problems, and other health problems are included – and care is coordinated and integrated (yeah, right). Looking at community resources, social determinants of health, racism and sexism and ableism and all the isms need to be looked at, along with family.

All really good stuff. Again, what’s missing to me is the process of developing flexibility and context sensitivity, along with embedding these practices in the routines, habits and life contexts of the person, not just now – but for the future.

What skills do clinicians need to do this well? The very skills that seem to be given lip-service. The ‘soft’ skills. The communication, negotiation, listening, guided discovery and most importantly, letting go of our own agenda kind of skills that our professional training doesn’t give sufficient weight to (see Horton et al., 2022 for a recent study looking at the work we do emotionally). It really doesn’t matter if you wear a tie (or not), swear (or not), speak ‘professionally’ (or not). What does matter is that you listen, and show that you’re listening. That you develop personal self-regulation skills to manage your own emotions. That you have someone to supervise you so you can off-load and be both challenged and guided by another clinician.

Horton, A., Holman, D., & Hebson, G. (2022). Occupational and Physical Therapists’ Use of Intrapersonal and Interpersonal Emotion Regulation Strategies During Patient Interactions: A Qualitative Study. Am J Occup Ther, 76(5). https://doi.org/10.5014/ajot.2022.048199

Kerns, R. D., Burgess, D. J., Coleman, B. C., Cook, C. E., Farrokhi, S., Fritz, J. M., Goertz, C., Heapy, A., Lisi, A. J., Rhon, D. I., & Vining, R. (2022). Self-Management of Chronic Pain: Psychologically Guided Core Competencies for Providers. Pain Med, 23(11), 1815-1819. https://doi.org/10.1093/pm/pnac083

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

Lim, Y. Z., Chou, L., Au, R. T., Seneviwickrama, K. M. D., Cicuttini, F. M., Briggs, A. M., Sullivan, K., Urquhart, D. M., & Wluka, A. E. (2019). People with low back pain want clear, consistent and personalised information on prognosis, treatment options and self-management strategies: a systematic review. Journal of Physiotherapy, 65(3), 124-135. https://doi.org/10.1016/j.jphys.2019.05.010

Richard AA, Shea K. Delineation of self-care and associated concepts. J Nurs Scholarsh. 2011;43(3):255264. https://doi.org/ 10.1111/j.1547-5069.2011.01404.x.

Shhhhh! The secret we don’t talk about…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Clinical indications for hypnosis

Who might benefit from learning hypnosis – and when might you suggest it?

I’m a person who doesn’t really try changing my own pain intensity very often, and most of the people I’ve worked with in therapy are also in the stage of wanting to learn how to live alongside their pain. However, there are some times when modulating pain intensity can be a really helpful part of even this phase of learning to live well with pain.

I haven’t found any clinical guidelines suggesting when it might be good to introduce hypnosis, so this is my own clinical reasoning. Remember I work with a particular group of people, and I have my unique approach and practice in pain management, so this reasoning may not resonate with you!

Hypnosis, for those who respond well, offers effective pain reduction (up to 40% for some, and on average, around 27 – 30% reduction), but it also offers effects other than reduced pain. Depending on the suggestions made during hypnosis, a person might feel pain as less distressing or intrusive, so that while pain is still intense it doesn’t bother them as much (see Jensen, 2011).

In my experience, hypnosis is great for pain reduction if the pain is likely to be short-term, or if the pain reduction from hypnosis doesn’t need to be long-lasting. The pragmatic reason for these suggestions is that hypnosis does take some effort both to learn, and to sustain. When thinking about reducing distress and the intrusive qualities of pain, I suspect these might be more about attention and interpretation and so I think developing a longer period of practice using hypnosis as a regular part of life is a good approach.

What does this mean?

Well, if someone has neuropathic pain with the nasty electric shock jolts from the blue, and the weird burning, tingling background pain, I like to teach self-hypnosis with an emphasis on feeling distant from the electric shock pains. My aim is to help the person experience less intrusion of these random intermittent pains, so they don’t get as caught up in the physiological arousal/sympathetic nervous system wind-up, and can calm their nervous system down quickly. This helps reduce the time these electric shock pains take up in a person’s day, and helps reduce the background nervous system irritability that in turn, seems to provoke and create the conditions for them to escalate.

The words and phrases I use will differ depending on the individual, but I suggest things like ‘you might notice a random electric shock feeling but it’s like it’s playing in the distance, maybe happening to someone else, or like in a dream and through mist.’ I add phrases like ‘you might notice a shock and each time you do, your body automatically remembers to breathe out and feel the contact of your feet on the ground, or your body on the chair, and you can quickly return to what really matters, what you were doing…’

Short-term use

If the person experiences period pains, then hypnosis to reduce pain intensity can be very helpful – it’s usually short-term, over a day or two, and hypnosis is easier to use through this time. In these cases, hypnosis that aims to reduce pain intensity and replace it with a more comfortable sensation can be good. For example, I might suggest ‘when you notice that deep gripping pain, you can also notice your lower back contacting the surface of the chair or bed, like a warm supporting hug, allowing that hard hot pain to melt into the gentle warmth of the hug as you feel the support of the chair or bed.’

Daily life use

Physical cues can be great for helping people access their hypnotic experience quickly. One of my favourites is simply holding finger and thumb together in a pinch. I introduce this during a hypnosis session, usually towards the end of the session before returning to everyday life. I invite the person to hold their finger and thumb in a pinch, and breathe in, hold it for a moment, then breathe out and let their finger and thumb relax. As we practice this several times, I suggest that the more firmly they press their finger and thumb together, the more they experience the peace and comfort of their hypnosis session, and the breath out will bring this relaxed experience into the present moment. I leave them with a post-hypnotic suggestion that every time they notice they’re feeling pain, or tension, they will press their finger and thumb together, take a breath in and hold it for a moment, then breathe out and relax and they’ll feel this wonderful sense of calm and comfort.

How can hypnosis be self-management?

Well, because hypnosis is a state, an experience, and not something done TO a person, I believe it’s something each person can learn for themselves. I work hard to teach people how to achieve self-hypnosis so they can implement it whenever and wherever they like. At the same time, I also often use recordings (people get given a recording of the session we did together so they can practice at home), and I personally used a recorded session for myself years ago when having trouble with sleep.

Want to try some hypnosis yourself?

deep-hypnotic-relaxation-with-cueDownload

Grab a phone and record yourself using this free and fairly standard hypnosis script (click). You’ll notice there are four main sections: the Induction, Deepening, Subject, and Awakening.

The induction guides you towards focusing your attention only on your voice, and also adds some ideas about deeply relaxing, still being able to attend to important things, but essentially becoming calm and comfortable.

Deepening brings your attention even more into the ‘trance’ state, or the point where you’re more open to suggestions.

The subject is all about what you want to achieve during this session – perhaps it’s sleep, perhaps it’s an efficient way to restore your energy, maybe it’s having pain not feeling as disruptive. It’s the time you can either rest in the calm of a trance, or add suggestions to help you experience what it is you want.

The awakening is the part where you bring yourself back to everyday life, becoming more aware of what’s going on around you, and yet also bringing back with you the sense of calm and comfort you experienced during your session.

Make sure your environment is quiet. Slow your voice down a bit. Give yourself lots of time between phrases. As you bring yourself back to everyday life, you might want to put some energy into your voice and quicken the pace a bit.

This script should take around 20 minutes to do. Enjoy!

Bicego, A., Rousseaux, F., Faymonville, M. E., Nyssen, A. S., & Vanhaudenhuyse, A. (2022). Neurophysiology of hypnosis in chronic pain: A review of recent literature. American Journal of Clinical Hypnosis, 64(1), 62-80. https://doi.org/10.1080/00029157.2020.1869517

Jensen, M. P. (2011). Hypnosis for Chronic Pain Management: Therapist Guide. https://doi.org/10.1093/med:psych/9780199772377.001.0001

Langlois, P., Perrochon, A., David, R., Rainville, P., Wood, C., Vanhaudenhuyse, A., Pageaux, B., Ounajim, A., Lavalliere, M., Debarnot, U., Luque-Moreno, C., Roulaud, M., Simoneau, M., Goudman, L., Moens, M., Rigoard, P., & Billot, M. (2022). Hypnosis to manage musculoskeletal and neuropathic chronic pain: A systematic review and meta-analysis. Neurosci Biobehav Rev, 135, 104591. https://doi.org/10.1016/j.neubiorev.2022.104591

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

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