ACT – Acceptance & Commitment Therapy

Rehab fails: What goes wrong in pain rehabilitation (1)


Well obviously I’m not going to cover everything that goes wrong – and certainly not in one post! But inspired by some conversations I’ve had recently, I thought I’d discuss some of the common #fails we do in rehabilitation. Things that might explain why people with pain are thought to be “unmotivated” or “noncompliant” – because if the rehab doesn’t ‘work’ of course it’s the person with pain who’s at fault, right? So for today, here goes.

Starting at the wrong intensity

One of the main things that happens when someone’s in pain is to reduce overall activity level. Pain has been called “activity intolerance” and it’s common for people to stop doing. So naturally when a clinician is developing an activity or exercise programme, the aim is often to simply increase how much movement a person does in a day. So far, so good. Muscles and cardiovascular systems improve when we use them.

But guess what? There’s a person inside that body! And people have minds. Minds with opinions about everything and in particular, anything to do with doing. There’s often a “should” about how much movement or activity to do. This rule might be based on “pain is a sign of tissue damage” so anything that increases pain clearly “should not be done”. There may equally be a “should” about how much exercise this person used to do, or wants to do, and often mental comments about “what kind of a person does this amount of exercise.”

I’ve heard good clinicians say that their patients “have unrealistic goals” – this is probably because the person’s mind has an opinion about what he or she “should” be able to do!

What can good therapists do about this? Well, firstly to ignore the person who inhabits the body is plain wrong. Secondly, flashy gadgets like coloured tapes or special elastics or foam thingies probably won’t do much for the person’s opinionated mind except to temporarily distract — oooh! shiny!!

Something I might do would be to ask the person what level they think they can begin at – beginning where the person is at, and moving at his or her pace is a solid foundation for developing a relationship where experimenting with movement becomes about the person and his or her relationship with their body. I think one of the aims of movement rehabilitation is to help the person develop trust in their own body and how it moves, so enhancing playfulness and experimentation can be a good start.

I might ask the person “what shows up when we begin doing this set of movements/exercises”? By “showing up” I’m talking about thoughts, images, sensations in the body that pop into a person’s mind (minds are soooo opinionated!). We might need to guide the person to notice quick thoughts or images, to put words to emotions and feelings, and to get in touch with fleeting sensations in the body.

Some of the things I’ve heard people say include: “only weak losers would call this exercise”, “I used to be able to lift 40kg sacks of cement and now all I can move is this pathetic 5kg dumbbell”, “he wants me to do what?! I hate boring exercises”, “but what am I going to feel like tomorrow?”

What do we do with these thoughts?

First: make room for them to be present. Don’t quickly deny them “Oh of course you’re not weak”, “5kg isn’t pathetic”, “exercise is great fun”, “you’ll be fine, you can do this”. Saying these sorts of things dismisses the validity of the person’s fears and won’t win you any friends.

Second: empathic reflection. Indicate that you’ve heard what the person has said, validate that this is their experience, their thoughts. Something like “it’s a long way from what you used to lift, and that’s hard”, “it’s tough beginning to build up again”, “you’re worried that this is going to be unrewarding”, “you’ve had pain flare-ups before, and it’s hard to deal with”.

Third: Ask the person where they’d like to begin, put them in control of the intensity. Then ask them “how do you think that’s going to pan out” – in other words, will their option get them to where they want to be? What’s good about it? What’s not so good about it? from their perspective not yours! The idea is to establish how workable the person’s starting point might be. It might be perfectly fine, even if it’s not your choice!

Fourth: Affirm that the choice is the person’s – and that this is an experiment that will be reviewed at the next session. You might say something like “So you’d like to try doing 5 minutes of walking instead of the treadmill that I suggested, because you think this shouldn’t flare your pain up as much. What’s your choice now that we’ve talked about the good and not so good? We can review it next time.”

Fifth: Review how it went at the next session! Note down the rationale the person had for the level of intensity they chose, and then review how well that intensity worked from this perspective. For example “you wanted to do 5 minutes of walking because it wouldn’t flare you pain up as much, what did you notice? What showed up? How well did it work?” Notice all the open-ended questions, the reminder that the person thought this intensity wouldn’t flare their pain as much, and the focus on workability. Because at the beginning of a movement or exercise programme, what you’re looking for is adherence, sticking to the level of intensity chosen. Habits take time to make, and often adhering to a programme is because the opinionated mind is having a go at the person, interfering with their willingness to stick with it. If we avoid that roadblock, we have at least one point on the board.

Your opinionated mind might now be telling you that “oh they’ll never make progress at that pace”, “they’ll do themselves an injury if they lift that much”, “this is just pandering to their lack of motivation”

Be careful! At this point you could reflect on what’s showing up for you. Are you worried their outcomes will reflect badly on you? Do you only have a few sessions with the person and need them to get somewhere or you’ll have failed? Make room for those uncomfortable feelings. Let them be present and listen to what your opinionated mind is telling you. Maybe remind yourself that outcomes don’t depend on you – they depend on the person sticking to the programme, and a programme that doesn’t start because the person’s mind tells them it’s not worth it is a #rehabfail Remember also that you’re aiming for the person to gain confidence in their body, learn to listen to what happens when they try something out – the repeated progress reviews you do with the person are the actual active ingredients in therapy, they’re the bits that help the person to reflect on what works, and what doesn’t. That’s gold.

ps The technique I’ve described above is – gasp! – a psychological approach, based on ACT and motivational interviewing. You won’t find a specific study examining this approach in journals (at least not in a cursory search like I did!), but it’s an application of well-studied approaches into a movement or exercise context. It’s the same approach I use in contextually-relevant occupational therapy. Reading Bailey et al, 2020, affirms to me that we have a way to go to define and measure adherence, so I feel justified in using these strategies!

Bailey, D. L., Holden, M. A., Foster, N. E., Quicke, J. G., Haywood, K. L., & Bishop, A. (2020, Mar). Defining adherence to therapeutic exercise for musculoskeletal pain: a systematic review. Br J Sports Med, 54(6), 326-331. https://doi.org/10.1136/bjsports-2017-098742

Eynon, M., Foad, J., Downey, J., Bowmer, Y., & Mills, H. (2019). Assessing the psychosocial factors associated with adherence to exercise referral schemes: A systematic review. Scandinavian Journal of Medicine & Science in Sports, 29(5), 638-650. https://doi.org/10.1111/sms.13403

Levi, Y., Gottlieb, U., Shavit, R., & Springer, S. (2021). A matter of choice: Should students self-select exercise for their nonspecific chronic low back pain? A controlled study. Journal of American College Health, 1-7. https://doi.org/10.1080/07448481.2021.1960845

Experiential avoidance – and persistent pain


Most of us will recognise that when we experience a pain, we firstly notice where it is, and the sensory qualities of it. We automatically make judgements about that pain – some of this judgement is about whether we recognise this pain (have we had it before?), some is about whether it’s important enough to interrupt what we’re doing (should I drop this hot cup of coffee, or can I hold onto it long enough to place the cup carefully on the bench), and some is about how we feel emotionally (yes, swearing is common when we smack our thumb with a hammer!).

In our response to acute pain, we often want to avoid or escape whatever we think gave us the pain – unless, of course, it’s something we choose to do even though it hurts. You know, things like lifting really heavy weights, running distances, taking rugby tackles, eating chilli! But in most cases where the pain is unexpected we’re inclined to want to make it stop, get away from the thing that probably caused it, and take a few minutes (or longer) to not do the things that make it worse. So we avoid walking on a newly sprained ankle and we don’t keep poking and prodding at a cut or a bruise.

Avoiding is quite common and even helpful when we experience the initial onset of a pain.

So why do we talk about “fear avoidance” as if it’s a bad thing?

Well, it’s because avoiding beyond a useful period of time often leads to ongoing problems. Some of these problems are possibly over-stated: things like “deconditioning” are probably not as much of a problem as we once thought (see Andrews, Strong & Meredith, 2021; Tagliaferri, Armbrecht, Miller, Owen et al, 2020). While other forms of avoidance may never even be considered.

What do I mean?

For a moment, think of a “weekend warrior”. The kind of person who heroically plays sport on a Saturday, trains once or twice during the week, and otherwise works hard and plays hard. Let’s think of this person as a male, perhaps in his late 30’s, thinks of himself as a hard worker and a family man. When he sprains his wrist after a particularly hard tackle in a weekend rugby game, he’s the kind who shrugs it off, and just keeps going. After a few weeks and his wrist doesn’t get much better, he heads off to see his local physio.

We wouldn’t usually think of him as an “avoider”. He’s not pain-avoidant, but sometimes because he doesn’t stop to take care of his wrist sprain, he ends up with a more troublesome injury. He might even develop a “boom and bust” pattern of activity: on a day he’s feeling good he’ll push through, but then his wrist starts playing up and he needs to take a day or two off.

I’m going to call it like I see it: this bloke is avoiding. What he’s avoiding is the experience of being vulnerable, of seeking help, of being advised to stop pushing himself for a day or so.

You see, experiential avoidance is what we do to avoid feelings (emotions) and actions that we don’t like or don’t want.

We see experiential avoidance most often described in pain research in the group of people who don’t resume their usual daily activities in part because they’re afraid of their pain. Or they’re afraid of what their pain might mean, or the effect of their pain on other things they need or want to do. For example, Angelina (see here) might be worried about the effect of pain on her sleep. And we’re reasonably OK with offering these people some information about what might be going on in their tissues, and that the relationship between pain and what’s going on in the tissues might not be as straightforward as it is when we hit our thumb with a hammer.

What we might be less aware of, and perhaps struggle to deal with is when a person appears to be doing the right things, like they’re remaining active and staying at work, but might be overdoing it. What might this person be avoiding? Perhaps, as I’ve suggested in the example above, it’s about avoiding feeling vulnerable, feeling like he’ll be told to slow down for a bit. Slowing down might be a sign, at least to our weekend warrior, that he’s not as young as he used to be. Perhaps he’s afraid of stopping because that means his busy mind can start to plague him with unhelpful thoughts about things he’s worrying about.

Experiential avoidance, like avoidance when a painful injury first happens, isn’t always a negative. When it’s used as the key strategy for life, indiscriminately and with an eye only to short-term benefits and not long-term consequences, then it’s not so good.

You see I hope we can help people to develop psychological flexibility: the ability to choose a response to any given situation that maintains moving towards what matters even if this means doing what feels odd or even a backwards step.

I also think we might benefit from developing psychological flexibility ourselves as clinicians. If we continue using the same old, same old strategy even if the results aren’t what we hoped for, we’re not helping anyone.

Andrews NE, Strong J, Meredith PJ. (2012). Activity pacing, avoidance, endurance, and associations with
patient functioning in chronic pain: a systematic review and meta-analysis. Archives of Physical Medicine & Rehabilitation. 93(11): 2109–21.e7, https://doi.org/10.1016/j.apmr.2012.05.029 PMID: 22728699

Tagliaferri, S., Armbrecht, G., Miller, C., Owen, P., Mundell, N., Felsenberg, D., Thomasius, F., & Belavy, D. (2020). Testing the deconditioning hypothesis of low back pain: A study in 1182 older women, European Journal of Sport Science, 20:1, 17-23, DOI: 10.1080/17461391.2019.1606942

Making first contact: What to do with all that information! Part 5


People come to see us because they have a problem. So the formulation approach I’m taking today begins from “the problem” and works back and forward. It’s called a “network” model, and is something many of us do without knowing that’s what we’re doing. The network model can also be called a functional analysis where we’re looking at what happens, and what a person does, and the ongoing consequences or loops that occur over time.

Angelina comes to see you because her neck is very sore. She’s not sure why it’s sore, or what happened to start it off, but she thinks it could be after working for a week at a new workstation where she had to look to the right to read documents, and straight ahead to work on the main monitor. It’s been there for over six months, and she’s come to see you now because she has a week of annual leave and some time to spend on herself. She’s played with changing her pillows because her neck is more uncomfortable in the morning, and it gets painful towards the end of the day just before she heads to sleep. She’s having trouble turning her head to reverse down her driveway, and looking up is almost her least favourite thing. Her sleep is OK once she’s got off to sleep, but initially it takes her a while to fall asleep because she can’t get comfortable. Her partner is getting frustrated with her because she doesn’t want to kiss him because that means she has to look up, and she doesn’t sit on the couch with him any more because he likes to rest his arm around her shoulders – and that increases her pain. She’s irritable and finds herself getting snappy at him. Angelina is in her mid-50’s, otherwise well, but has always lived with various aches and pains, most of which she ignores until they go away. She has had a painful shoulder and lateral elbow pain that lasted for over a year, but has gradually settled down – she didn’t do anything special to manage those after having only a small response to a steroid injection into her shoulder.

Angelina’s main concern is to establish whether her neck pain is anything to worry about, or whether it’s just more of the same, like her shoulder and elbow pain. Her other focus is on getting a comfortable position to go off to sleep because she thinks this is adding to her problem.

OK, so we have a lot of information about Angelina, and we can organise this information in many different ways. Given her main concern is her prognosis and then her sleep, we need to make sure the way we organise the information offers a possible explanation – a hypothesis.

Take a look at the network diagram below to see how I’ve sketched the information out – you’ll note that at this point I’m not trying to develop a diagnosis, I’m focusing on the problem as she sees it.

The matrix I’ve used here comes from Hofmann, Hayes & Lorscheid (2021) Learning Process-based Therapy, published by Context Press, New Harbinger.

What I’ve done is summarised the processes that I think might be relevant to Angelina’s presentation, and drawn the relationships between various aspects that she’s described. You might organise this information differently – and I’d usually do this in collaboration with the person.

If you look closely at the networks, you’ll see several loops that likely will continue if something doesn’t change. One to spot is this set below:

You can see that she’s worrying about her sleep, doesn’t get comfortable as she goes off to sleep, feels fed up, has changed her pillow (in line with her self-concept of someone who is a practical person), and the whole network will likely remain winding itself up unless “something” comes to disrupt this pattern.

This set of relationships raises some factors we need to consider when we’re thinking of interventions. As someone who sees herself as a practical person who doesn’t seek healthcare often, and has had previous bouts of pain that settled without specific treatment (though she sought it for her shoulder), we could interpret this as meaning she doesn’t panic about her situation too much – but we could also wonder if, because she’s seeking help now, she’s seeing her problem as different from previous pain problems and maybe this one is worrying her more than she’s ready to acknowledge. Just to the right of the loop I’ve shown above, you’ll see a box where she says “I’ll deal with it if it doesn’t get in the way of my family and relationship”. This is important – it’s an expression of how she sees herself, an important value, and her motivation for seeking help is also framed in terms of maintaining her loving relationship. For this reason, I’d be looking for interventions that either won’t intrude on her family life and routines, or I’ll be looking for ways to frame whatever treatment suggestions I make in terms of how this will support her relationship.

By drawing a network diagram showing potential processes that might be influencing Angelina’s presentation, I’m answering my question “why is she presenting in this way at this time, and what might be maintaining her predicament” – she really wants a prognosis so she can establish a strategy to maintain her relationship with her family, keeps her “practical person” view of herself alive, and in a way that she can still fulfill her desire (and others’ expectations) to be fully productive at work.

I could analyse (or organise) Angelina’s information in lots of different ways. This is just one – and in some ways, the particular model I use to assemble her information is less important than ensuring Angelina is an equal partner in sketching out these relationships. I could have drawn the Tim Sharpe CBT model or used an ACT-based model and looked for patterns of psychological flexibility. I could have used Vlaeyen’s fear-avoidance model – and I’m sure there are plenty of others that might have been useful.
Irrespective of the model, what needs to be evident is using the information the person offers us, modifying the way we approach therapy as a result, and collaborating with the person to decide treatment priorities. This means we as clinicians need to be nimble, responsive, adaptive, and stop using treatment protocols! Any approach that suggests offering the same approach irrespective of the unique things influencing a person’s presentation is doomed to do a half-arsed job. These protocols might work for some, but they won’t work for all, and they may fail to address the real reason the person came to see us in the first place.

Making first contact: What to do with all that information! Part 4


In the previous few posts on what to do with all that assessment information I’ve talked about generating a formulation to guide treatment, and a little about how teams might work together to generate one. This post is a little different because I want to situation the discussion around the ultimate aim of therapy.

I usually work with people who have long-standing pain that hasn’t changed much and doesn’t seem to be disappearing. I’m not a nihilist, but I do wonder if clinicians are trying too hard to “change pain” when the body doesn’t seem to respond all that much to whatever we offer when it comes to musculoskeletal pain! Perhaps all we do is offer support to the person as their body gets on with the job of settling down…?

Anyway, my focus is to help people respond flexibly to what life has thrown at them – because while pain poses one of the greatest problems for people, often it’s not the pain as such but what we do to avoid or control pain – or, for that matter, what we do to avoid or control the results of avoiding or controlling pain. Confused? Let me unpack it a little with an example.

About the time I started this blog wayyyyy back in 2007 I had a concussion and developed post-concussion syndrome. I found it incredibly difficult to concentrate, find words, remember things, switch my attention from one thing to the next, and to deal with sensory overload. I was advised to rest and let my brain recover in its own time – all good. BUT I never expected that recovery to take almost two years! so I returned to part-time work after two weeks. In my head I was balancing my fatigue/headache/difficulty concentrating against my need to return to work, keep my employer happy, and do things that mattered.

If I flip that motivation on its head, I wanted to control both my symptoms and my fear/guilt of failing and perhaps losing my job/fear of sitting still and doing nothing/fear of feeling useless. After all, I was the vocational rehabilitation therapist for the service I worked in!

By trying to control my fear of not doing, I created a whole bunch of trouble for myself – I failed at controlling my symptoms – they grew out of hand and I eventually had to take some time off work, got quite depressed, and achieved exactly what I’d hope to avoid – needing to stay at home doing nothing!

When we think of ACT (Acceptance and Commitment Therapy) for living with pain, we often think of the person working hard to control or avoid pain and our focus is on helping them to be willing to make room for pain and begin doing things – and yet I’ve met a great many people who have got caught up in a vicious cycle of over-doing and under-doing, or who “get on with it” with gritted teeth and sheer determination! So one thing we can be looking for in our “first contact” is to identify how workable are the ways the person is approaching this time in their life, a time when they’re dealing with pain and life restrictions, stress, balancing priorities, working, family and so on.

ACT provides a series of six processes that together offer a way to be flexible about how we handle what life throws at us, and help us do what matters in our life. In an ACT formulation, we’re looking for unhelpful patterns that constrain how flexibly we can do what matters. Some of the patterns we might see could be:

  1. Unwillingness to stop and create space for pain so the person gets stuck acting as if there is no pain, trying to do everything the same way as normal but either getting fatigued and stressed and just hanging on in there, or doing short bursts of “normal” and crashing periodically.
  2. Getting stuck with rigid beliefs about what’s going on like thinking the pain must be able to be fixed and quickly, or that the pain is the most horrible disaster ever and everything about life must be shelved until it’s fixed.
  3. Comparing what he or she can currently do against a previous level of performance and being frustrated and angry because this doesn’t fit with how they see themselves, and especially thinking that this is the way it’s going to be forever…
  4. Losing sight of important things like being with family, or seeing friends because of feeling irritable, sad, thinking they don’t want to see them like this, not being able to do the things they used to do, waiting for the pain to reduce, or looking for the fix.
  5. Anticipating calamity or remembering disasters either about “the last time I tried doing this” or “because I saw this happen to [name]” and then feeling utterly stuck.
  6. Casting about being erratic or just not sticking to a plan, getting off track maybe because results don’t happen, or maybe because it’s something new and feels unfamiliar, or perhaps because someone else suggested another option…

There are always other ways people respond to pain, not just the patterns I’ve listed here, but these are some common ones I’ve seen. In ACT we’re looking for unworkable patterns that don’t lead the person towards being the kind of person they want to be, doing the things that bring meaning in their life.

When I’m jotting these things down, I’m looking to identify the core things the person isn’t willing to experience: thoughts, emotions, memories, situations. I want to understand what the person does to avoid them – like things the person has stopped doing or deliberately avoids, the ways the person avoids or controls emotions associated with that thing (like drinking more alcohol, zoning out, lashing out), and what I observe during our initial assessment like skipping over topics that feel uncomfortable.

I want to understand the cost or “unworkability” from the person’s perspective: what’s the impact of responding in these ways. I need to understand what’s going on in the person’s context – their family life, employment situation, influence of case manager or insurance/compensation, friendships. And I want to look at the factors that might be adding to the person’s inflexible responses, and these are myriad and often include what we do as clinicians – like being told to stop doing a favourite hobby “because it might be damaging” (how many people with low back pain have been told to stop running, stop fishing, stop dancing, stop lifting, to sit in a certain way, walk in a certain way, lift in a certain way, stop slouching, walk faster, slower…?). And of course I want to understand a person’s strengths: have they had an experience like this before? Do they have strong values? Have they succeeded in some area in life? What brings them joy and takes them into the zone? How have they modified the way they do things so they can do what matters?

I like to do this in collaboration with the person (how else could I do it?!) and to look at the good and not so good of everything they’ve done along with the context. Because one thing that always resonates with me is that people do what they do because it’s worked in the past. Always. At least once.

For more on ACT, you can’t go past the Association for Contextual Behavioural Science – https://contextualscience.org/

And Chapter 2 from Lance McCracken’s book Mindfulness and Acceptance in Behavioral Medicine, 2011, Context Press, New Harbinger:

Vowles, K.E, & Thompson, M. (2011). Acceptance and Commitment Therapy for Chronic Pain, pp31 – 60.

Making first contact: what to do with all that information! part 1


Last post I wrote I said I’d continue with a process for structuring and synthesising the information we gather from the initial contact we make with the person. This process is integral to clinical reasoning, and somewhat surprisingly, there’s not a great deal of research to give us guidance on the best way to do this – and it’s even more challenging for those of us working in an interprofessional team setting, where different professions, personalities and assumptions are part of it.

If we work backwards from the end point, we might get some clues about what to do. Our end point is to help this person do what matters in their life. All our efforts are pitched towards this end. Because people are unique, what matters to them in their context is likely to be unique, and because pain and disability are multifactorial, there will be many paths to help that person get to where they want to be. Algorithms are designed to make the task of clinical reasoning a lot simpler, but there are some enormous assumptions associated with using an algorithmic approach: that we know the important factors associated with change; that we can address those factors successfully; that each person has the same set of factors evident in their presentation… and frankly, I don’t think I’ve seen strong evidence of any of these when it comes to pain.

Clinical reasoning is about a series of cause and effect assumptions. We have limited certainty about much of pain and the relationships between factors we think influence pain and disability. We’ve also been holding on to some outdated and inaccurate assumptions about the way grouped data applies to the one person in front of us. Prof Steven Hayes points out that as early as the 1940’s (perhaps earlier) we knew that there was no such thing as “the average man” (or woman!). This emerged in human factors/ergonomic design, where using the average/median of all the anthropomorphic measures we have does not help us design a workstation or control panel that will work for all people. Instead, we have to design to suit the minimum and maximum clearances and reach, and add adjustability so that everyone can make their workstation work for them. The assumptions used in early application of anthropometrics were that everyone is essentially similar: it’s ergodic theory (https://en.wikipedia.org/wiki/Ergodic_theory). Ergodic theory holds two assumptions that don’t work well for people: all the events in ergodic theory must be stationary, and all elements in the mathematical model must obey they same rules.

When we work with people, we know their presentation is a series of responses that continue to move over time. Their presentation is dynamic, changing all the time but exhibiting similarities in terms of processes. And we also know that different factors influencing a person’s presentation don’t always follow the same patterns. There are things like legislation, unexpected events like trauma or earthquakes, biases and stigma – and these don’t affect everyone equally.

One solution is to acknowledge this and instead look to the particular, applying to this person at this time – idiographic, or as Hayes calls it “idionomic.” A network diagram, showing the dynamic hypothesised relationships between contributing factors can help us generate ways to influence change. And the diagram should “make sense”, or explain, what’s going on to all the team members including the person with pain.

I’ve used a cognitive behavioural formulation model for many years now (see here and here – and use the search bar for “case formulation” for a list of the posts I’ve made over the years). The assumptions in this approach are that directly influencing the thoughts a person has about their pain will have flow-on effects on pain, emotions, actions and physiological arousal. And to a certain extent this is true – plus, there are some things we cannot readily change, such as family responses or previous trauma. But the flexibility of a formulation approach is that we can include anything that’s relevant including strategies the person has used in response to those things that can’t be changed.

The biggest assumption that I make is that pain on its own isn’t the main problem. It’s how we respond to pain, what we think is going on, how we react to the things we do in response to pain (or things we don’t do but think we should), and how the people around us influence us, that help determine how much pain bothers us. There is plenty of research showing that people willingly do painful things if they do so for important reasons. Some everyday examples include ritual tattoos, endurance sports, boxing and martial arts, eating very spicy chilli. Of course, these aren’t examples of persistent pain – and yet, people with persistent pain started with acute pain. There are some highly influential factors that are present from the outset and these do have an impact on how we respond to pain, especially as time goes on.

The second assumption I make is that everyone is able to learn how to do things differently, and in doing these, we can develop a different relationship with pain and become less distressed and disabled by our experience. This doesn’t mean (a) that we should just give up and be resigned to a life of pain and not seek treatment to reduce pain; or (b) that we should just ignore pain and grit teeth and bear it. It also doesn’t mean that we will feel happy about pain, or that life goes on as normal. But it does mean that we can make some room for pain to be present, and move towards doing what matters rather than having pain become some invisible barrier to a life worth living.

Exactly what we include, and how the relationships between each factor play out is the topic for next weeks’ blog – stay in touch!

Making the first contact


How do we begin working with someone who is asking for help with their persistent pain? In this post I’ll describe some of the considerations I have when I begin, because as Benedetti points out, the “meet the therapist moment” is one of the most potent times in the therapeutic ritual (Benedetti, 2011). It’s the time when the person’s expectations and the clinician’s empathy and competence meet, and the “meaning response” blooms.

My two clinical questions are:

  1. Why is this person presenting in this way at this time, and what’s maintaining their predicament?
  2. And what is this person’s main concern?

But before I ask these questions, I want to take a moment to think about the person and what might be going on in his or her mind.

Benedetti points out that expectancies are an important part of a response to treatment – whether that treatment has any active action, or not. Expectancies are about what a person brings to a therapeutic encounter: there are two, one is stimulus expectancies (anticipations of external events – eg that the next painful experience will be less), and the other is response expectancies (predictions of your own nonvolitional response – eg that after doing this thing, I expect to experience less pain) (Kirsch, 1985).

People who come to see a clinician, especially a clinician from a little-known profession (occupational therapy!) will hold expectancies about what that person will do, but these will likely be weaker than the expectancies a person might hold about seeing a well-known profession. The strength of an expectancy is different from the direction of an expectancy – for example, a negative experience with a physiotherapist might lead to a strongly negative expectancy about future treatments, while not having had an experience with an occupational therapist might lead to a weakly positive expectancy about what’s about to happen.

Along with expectancies, the person will likely be anxious about what’s to come. The possibility of something that might help (or not), meeting a new clinician, and living with pain are all stressors – and anxiety erodes a person’s ability to absorb lots of information, while biasing them towards remembering threatening words (Reidy & Richards, 1997).

So there’s a lot going on in the person’s mind when they attend that first session.

There’s also often a large power imbalance (Joseph-Williams, Edwards & Elwyn, 2014). This emerges from the fact that often clinicians hold a lot more information about the person we’re seeing than they do about us. Especially after we’ve asked a bunch of questions, often quite intimate in nature. For a person seeking help, this imbalance can make it hard to ask questions, to direct the conversation, to hold a sense of independence throughout the encounter.

So having set the scene for you, I’m sure you can agree that how we go about collecting information from a person is incredibly important – especially so that relationship can begin to build.

Introductions

In the introduction, I seek to give the person some information about who I am – not just as a clinician, and the kind of treatments I use, but also about who I am. I’ve drawn inspiration from tikanga Māori here, where the cultural tradition entails letting the person know where I come from and who I’m connected to. I like to let people know my childhood roots are in Turanganui a kiwa, or Gisborne. That the mountain my heart connects with is Mount Hikurangi – the first mountain in NZ to see the sun. The river I connect with is the Taruheru, flowing into the sea in Gisborne. I also let people know my whanau connections – the Lennox’s, and the Thompson’s, are my whanau (extended family), and I’m a 5th generation New Zealander. I now live in Otautahi/Christchurch. This introduction only takes a few minutes, and your culture might not value this form of introduction. For me in Aotearoa/New Zealand, it’s one way I can show respect and follow a tradition that means the person I work with knows something more about me than just my name.

I also include my profession – what I do. I’m an occupational therapist, my job is to help people do what matters in their life contexts.

I like to then let the person know that they’re brave and courageous for seeking help – it’s not easy to say you can’t do this on your own. It takes courage to tell someone that.

Questions

Then I open with a broad question about what has led this person to come to see me. I might add in something about “tell me about your pain and what you’ve done so far for it.” I’ll often ask what their theory is about their pain, what they think is going on.

Then I ask “What is your main concern today?”

Throughout this process I’m reflecting what I’ve heard, to ensure I’ve understood what the person has experienced. I’m NOT giving reinterpretations, I’m NOT giving out new information, I’m just listening.

I often spend time asking about four areas of life: relationships, fun, work, and health. Or I might ask the person to take me through a typical day, from the time they wake up.

I like to find out not just what the person has done to help themselves, but also what they’ve learned from these experiences. The messages they’ve received over time, and the things they’ve tried but perhaps didn’t like or that didn’t help.

Questionnaires

I was a big fan of questionnaires filled out ahead of time, and I am still a fan but don’t use them as much. This is mainly because so many people have filled out endless questionnaires and nobody has sat down with them to talk about what they mean! So I’m a little more selective and focus much more on listening first then choosing something that will offer me and the person some insight into what might be going on. For example, I might choose the PASS20 (McCracken & Dhingra, 2002) because it helps me figure out where to begin with reducing pain-related anxiety. It’s a good measure to use each week to track changes over time, and I’m beginning to delve into repeated measures of progress rather than a pre-post-follow-up approach that’s typical.

Observation

Covid has meant it’s not as easy to carry out observational assessments, but I’m always watching how the person sits, moves, walks, and body language. What I’m not doing is interpreting these observations without talking to the person about them! Too many clinicians make judgements about the person based on maybe one or two observations, out of context of the person’s life and environment, and without checking in with the person to work out what might be contributing to what they see. Let’s not do that – the person might be completely oblivious that they’re guarding their sore hand, or they keep shifting in the chair, or that a habitual movement like taking a jacket off might be easier to do than being asked to perform some weird movement at the command of the clinician!

Pulling it all together

Just as we wouldn’t expect to be marched in for surgery straight after our first consultation with an orthopaedic surgeon, I don’t believe it’s OK to offer something to a person on their first visit just because we feel internal pressure to do so. Having said this, I will often suggest to the person that they spend a bit of time doing some brief “noticing without judging” exercises. We’ll give it a go at this first appointment, so they’re not being expected to go do it without knowing how. The reason I start with brief noticing experiments is that it’s something we could all do more often, it gives the person a new skill (usually) to develop, and it’s often an introduction to being fully present without judging. Being fully present without judging is hard to do when you’re sore because the mind likes to anticipate how bad it’s going to be (“you’ll need to take it very quietly or you’ll pay for it”) or remember previous pains (“last time you just sat around your pain went nuts, you don’t want to risk that now do you?”).

Notes/Documentation

I write conversational notes directly to the person, going through what we’ve talked about and pulling together all the information I’ve gathered in this first meeting. I find it helps me to make sense of what’s going on, it allows me some time to reflect on what I’ve observed and heard, and I can assemble it in a case formulation that the person and I can explore if/when we meet again.

Assessment is never over. Every time I meet with a person I’ll be learning more about what’s going on. I don’t feel pressured to “find it all out” at that first session just because there are goals that must be developed. In fact, one goal I leave in for everyone is “develop goals” (well, I don’t use goal language – it’s more about directions and actions that take you there). Because seriously, how can anyone meet someone and immediately develop goals – that’s disrespectful to the person who may not have had time to think about what matters the most, and it’s disrespectful to the complexity of goal setting as a process anyway.

Theme and variations

I’ve written one approach I use for learning about the person I’m trying to help. There are others – a time line, drawing a life map, mind-mapping, walking and talking, making a coffee – all of these and more can be used to explore the same information.

Let’s not call it “the subjective” – let’s call it what it is, our first “getting to know you” meeting.

Kirsch, I. (1985). Response expectancy as a determinant of experience and behavior. American Psychologist, 40(11), 1189–1202.

Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. Bmj, 348.

McCracken, L. M., & Dhingra, L. (2002). A short version of the Pain Anxiety Symptoms Scale (PASS-20): preliminary development and validity. Pain Research & Management, 7(1), 45-50.

Reidy, J., & Richards, A. (1997). Anxiety and memory: A recall bias for threatening words in high anxiety. Behaviour Research and Therapy, 35(6), 531-542.

Radical? Radical!


Welcome to 2021! An interesting start to the year for my US friends, more of the same for my UK and European friends, and life in NZ and Australia goes on with an added dash of uncertainty because of the new! improved! more contagious Covid19!

I’ve had a few weeks away from my usual Monday morning writing routine, but I return to the blog today with a lovely book I’ve reviewed. There’s no secret about my personal preference for ACT both for living and flourishing in daily life, and for those of us living with persistent pain. Today’s book review is about Radical Relief: A guide to overcome chronic pain, written by Joe Tatta, physiotherapist. From the outset, I’ll acknowledge that I was sent a free promotional copy of this book – but I would have bought it anyway, I promise!

There are a few books I recommend for clinicians working with people living with pain. The first is a textbook called Pain: A textbook for health professionals which is one of the most accessible and clinically useful books for clinicians wanting to enhance their understanding beyond what they learned in undergrad training.

Another is an old CBT-based book written by Turk and Winter called The Pain Survival Guide which runs through the main conventional approaches to managing pain. It’s written for people with pain, and while there are certain parts I’m not certain are really well-supported by research, it offers the standard strategies that have been included in multi- and inter-professional pain management for years.

And now, Radical Relief arrives on the scene, and I think it will be another of those references I will use over and again. Radical Relief is written for people living with pain. It offers a “radical” way to returning to life, drawing on well-established, well-researched strategies for pain management from an Acceptance and Commitment Therapy perspective. For those who are not familiar with ACT, one of the major premises is that often our problem-solving mind gets in the way of us living a values-aligned life, particularly when we’re confronted with a situation or experience we can’t change.

Now I’m going to take a moment to comment on pain changing. Pain changes all the time. The intensity can go up and down. The quality might be intrusive – or fade into the background. It might be there all the time, or intermittently, or unexpectedly. There are so many factors that influence our experience of pain that it wouldn’t be at all surprising to find that most clinicians find that their patients experience at least some relief during or after treatment. And sometimes we clinicians like to take credit for that – and often we want to focus on getting a report from the patient that yes, pain has reduced. Sometimes we’ll almost do anything we can to find a way to “reduce the pain.” Part of the definition of pain (see here for the full definition and notes) includes the word “unpleasant” – “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”, so I think it’s safe to assume most of us don’t want to experience pain. And yet we know that for many people, reducing pain intensity is not possible. That’s a fact that some clinicians don’t want to recognise. How we as clinicians handle our inability to alter pain intensity is a test of our willingness to read and acknowledge scientific literature.

OK, back to the book. ACT is based on the idea that underpinning successfully navigating life is a concept called psychological flexibility. This concept consists of six processes that appear to underpin how we can be psychologically flexible in the face of an unpredictable and challenging world. Joe Tatta, in this book, articulates these processes as they can be employed by people living with pain. How to be open, willing, aware and do what matters to you in the presence of pain, and all that this experience brings with it.

I won’t review how ACT might help – there’s plenty of information available on the web, including my blog, for those who aren’t familiar with it. I will, though, say that the way Joe writes is clear, succinct and empty of jargon. He writes as if he’s speaking directly to the reader. The sentences are short and full of questions to ask yourself. The chapters are also short and offer activities to try. Joe identifies that some of the activities might feel odd – they’re not “typical” of many self-help suggestions, because Joe invites readers to experiment, to try, to see what happens, to be open to what happens. This is refreshing!

Some features of this book that I particularly like are the room to write your own thoughts and responses down. The certificate at the end of the book is delightful. And the illustrations – gorgeous!

I think if I was a person who came across this book I’d be intrigued by it. I think I’d find it easy to read, and I’d be willing to try at least some of the ways Joe suggests. If I worked through this with a clinician, I think I’d find it even more useful. It’s not easy to step outside of yourself and recognise your mind’s sticky thoughts and attitudes. It’s hard to make changes on your own. So it’s not the way the book is written that means I’d suggest using it with the support of a coach or clinician, it’s simply the nature of motivation to change in the face of pain.

Now ACT has been found to be no more (and no less) effective than CBT (or indeed any other treatment approach we have: surgery, medications, exercise) for persistent pain. This doesn’t mean ACT “doesn’t work” – it just means that, like any of our approaches to persistent pain management, it’s not a case of one size fits all, or one therapy will be the magic bullet. I’ve advocated for a while that precisely because we have no over-arching “successful” treatment, this offers clinicians and people with pain an opportunity to find out the unique combination of strategies that are helpful for this person at this time and in this context. ACT, although it includes the term “acceptance” does not mean “resignation” – I prefer the term “willingness” to experience pain (rather than doing everything possible to suppress or avoid pain) in the pursuit of what matters. ACT’s functional contextualist philosophy means we need to ask “how well is this working?” about everything we do – because the ultimate measure of success is about whether the approach is helping us do what matters in a particular context. I think that’s pretty radical myself. And, like this book, while we won’t always have a “perfect” outcome, we can MOVE.

M= Make room for unpleasant sensations (and thoughts!)

O= Open up and observe non-judgementally

V= Values guide life, not pain

E= Engage in activities in line with your values

Thanks for the opportunity to review your book Joe, I appreciated it very much.

Springboard: Beginning to live life again


Springboard is a six week, 120 min once a week programme for people with pain. I developed this programme in the context of New Zealand’s Accident Compensation Corporation (ACC) community-based pain management services.

So, why use a group approach and what’s inside Springboard?

Pain can be such an isolating experience, and for many people, not only do friends and family not “get it” but neither do some of their health professionals! Living with pain, even for “just” a few months can lead to loneliness because most people don’t know what it is like to experience pain that doesn’t go away. Simply coming to a group where everyone else is in the same boat offers people a chance to be authentic about what it’s like. Connection with other people is so important – remember humans are a social species.

The second reason I love groups for this kind of work is that we get to share much more information and learning from one another than can be achieved in a one-to-one setting. As each person talks about their experience, others can relate “I’m the same”, or compare “I’m not like that”. Participants can share their wins and losses. They can contribute to help solve one and other’s problems. They can challenge one another in a way that health professionals who haven’t lived with pain can’t emulate.

If we look at Bandura’s social learning theory we can see that direct experience is the most powerful influence on self efficacy, and the second most powerful influence is vicarious learning. Being able to see how others approach the challenges of every day with pain gives participants a powerful learning tool.

What’s inside Springboard?

Springboard is based on ACT (Acceptance and Commitment Therapy) and also draws on motivational interviewing as a therapeutic stance. Rather than focusing on changing pain, the focus in Springboard is on learning ways to live life again, even in the presence of pain. In other words, Springboard is about beginning to be yourself again.

One of the most profound losses when a person experiences pain that doesn’t follow the “typical” trajectory is a loss of previously implicit assumptions. The body becomes more significant with pain – movements are attended to, daily activities are bounded by far more awareness than normal, assumptions about what a person can expect from him or herself are challenged. In turn, this awareness brings a loss of sense of “self”. Self concept is an idea about “what I can expect to do, be competent at, and what others believe I can do” – and when pain is present, these expectations are violated.

Springboard aims to help people take stock of their lives, decide what matters, and begin to move towards valued actions in the presence of pain. Opening up more of life than just attempting to get rid of pain and “go back to normal”.

The thing is, “normal” has gone – whether pain ultimately resolves or not. Because each person who has gone through this weird experience of pain that doesn’t obey the rules will remember what it was like when they had their pain, and the old certainty and belief that the body will do whatever it’s asked to do will have likely eroded.

So Springboard asks the questions: if pain was less of a problem for you, what would you be doing? What matters to you? How can we work together to get more of that – and in doing so, enrich your life, and the lives of those you care about.

Each session begins with a review of the “missions” all participants undertake in their own contexts. These are values-based actions that participants choose for themselves, and that will build towards being and doing what matters in life. In other words, making life bigger.

As participants review their progress, and share their successes – and challenges – all the other participants contribute ideas to solve the problems, celebrate the successes, encourage setting new actions and learn from one another.

Each of the six sessions has a focus.

  1. What do we know about pain? Sharing information each person has been given, and what sense they make of it. Generally working towards a common understanding of some of the mechanisms, some of the treatments people have tried, and getting perspective on how variable individual responses are to treatment. There is no single magic wand cure.
  2. How can we organise activity levels? AKA the “pacing” or activity management session. We share the various trajectories people have been on – the deactivation process, the boom and bust process, the push through until you gasp approach, the gradual increase approach, and the consistency or quota approach. Rather than telling people which is “the best” we look at the good and the not-so-good about each, using participant’s own examples. That way we can help people weigh up their options for the various contexts in which they live.
  3. Dealing with sticky thoughts and feelings. This is the “ACT” session – discussing cognitive defusion strategies, noticing, willingness, perspective taking, and finding wiggle room. Each session begins with a mindfulness “arrival” moment, so participants are familiar by this time with noticing that the mind likes to dictate. Participants begin to use “Choice point” as a creative way to notice what their mind is telling them, and choose an action to align with what matters to them in that context.
  4. Sleep is always a hot topic! In this session we discuss all manner of sleep strategies, and how/why sleep is such a problem and so important for people with pain. Our solutions are diverse – everyone has something to contribute – and again, we look at the good and not-so-good of each option.
  5. Who’s on your team? In this session, participants explore the many people they’ve interacted with because of their pain, all the people they’ve told their story to. We examine the various contributions these people make, and begin to look at how better to communicate in an authentic, respectful and “straight-up” way. Some participants bring family to this session as we build a list of who is on the team, and help the person with pain be the captain.
  6. Flare-ups, set-backs and pre-planning. The final session is about when things go wrong. Identifying things that disrupt newly-developed skills and habits, whether these are pain flare-ups, pain settling (yet, it’s a thing that can trip people up!), holiday routines, returning to work, new assessments – all the things that life holds! Participants work on drawing up their own pain management plan (written down so it can be pinned on the fridge!), and on a set-back plan or “can cope” card.

The real grunt work of this programme lies in the home-based missions each participant does. It’s in doing new things, taking small steps in a different direction, stopping to notice before acting, defusing and giving a moment of space before choosing what to do – these actions are reviewed at the beginning of every session and really form the core of what Springboard offers.

Over the next six weeks I’m putting the facilitator training for Springboard online. This will make the training available for more people, both in New Zealand and elsewhere. Keep watching out because I’ll make an early bird announcement very soon!

Pain may not be what a person fears most


We all have typical ways of going about our daily routines and solving problems. Mostly these work – until we encounter a situation where they don’t. If we’re flexible enough, we’ll figure out a way to change what we do in that instance, and this will become another strategy to draw on, and might even become another habit that works – until it doesn’t.

In pain rehabilitation, there are certain patterns of activity that have received a lot of research attention. Activity avoidance is one of them, while task persistence is given rather less air time (though it’s emerging as an intriguing area to study (Hasenbring, Andrews & Ebenbichler, 2020)). But perhaps what we’ve looked into less are aspects of adjusting to life with pain that raise uncomfortable thoughts and feelings. These in turn make it more difficult for a person to change how they go about daily life.

Some examples I’ve heard from people I’ve worked with:

  • I need to keep pushing through the day because I’m the boss, and a hands-on manager. If I stop being hands-on, there’s nobody to pick up the slack. Things won’t get done.
  • I’m a mum, and I can’t let my children go off to school without them having had breakfast, and making their lunches, and there’s all the parent-teacher events. I can’t just stop.
  • When I left the lawn half-done, my partner jumped in and did it for me, then got really angry with me and I’m not doing that again!
  • I was a professional athlete. Going to the gym is horrible. I’m a failure – I’m lifting these tiny weights and I used to lift massive ones.
  • I’m going back to work on this graded programme, but I can’t fit my gym programme in, and that’s the only way I’m going to fix my core strength.

These situations are pretty common. The clash between “pain management” and the reality of daily life. Daily life is messy, and there are social factors at play, there’s the unpredictable, the real fear of criticism or loss of a job or someone not taking up the slack while the person makes changes in how he or she does life. It’s far easier to prescribe exercises in a controlled place, to track progress by weights, repetitions and cardiovascular fitness or range of movement.

Doing self management, things like pacing or setting time aside for movement, or spending time in meditation or asking someone to help: these are easy in the short-term, right? But not quite as easy if you think of these things needing to happen for life. In fact, some people with pain begin to feel like this new life isn’t really a life at all! Where’s the spontaneity?

When we begin drawing on Acceptance and Commitment Therapy (ACT) a common error is thinking the “acceptance” part is only about accepting pain, and stopping treatment, ie let’s focus on being willing to experience pain in the pursuit of what’s important. And there’s good evidence supporting the process of doing valued activities as one of the key processes in ACT, as well as being a key outcome (Vowles, Sowden, Hickman & Ashworth, 2019). All the occupational therapists say “preach it!” because, of course, this is what occupational therapy as a profession is based on!

So what else needs to be the focus if we’re using ACT in persistent pain management? As you can see from the client examples I’ve given, there are more effects from pain and self-management strategies than just being willing to experience the ouch. People hold fused beliefs about what kind of a person they are: the reliable worker; the dutiful parent; the responsible boss; the super-athlete; the compliant patient. The strategies people use to cope with persistent pain may impinge on ideas a person holds about themselves.

Furthermore, things clinicians tell people – like “your exercises will reduce your pain”, or “you must learn to fire this muscle to help stabilise”, or “meditation needs to be done this way” – can also become fused ideas. A lot like wearing a splint for years “because the therapist said I must”, or using a particular chair “because the therapist said it was the best for me.”

Any time we begin introducing new ways of doing things, we’re likely to encounter people who will find it hard to see why our perfectly reasonable solution won’t fit them in their circumstances. Consequently we can either try hard to persuade the person to do it (creating pliance), or we can decide the person isn’t cooperative and give up. I think there’s a third way: using ACT we can examine the usefulness or workability of the approach preferred by the person, and we can do the same for the new approach. By looking at the good and not-so-good in each option, we can also begin to explore the fused thoughts and emotions, experiential avoidance (what is it the person is unwilling to experience?), values, sense of self (is it me, or a story about me?) – indeed, all the ACT processes are likely to come into play.

What we need to do then will depend on your clinical orientation and the person. If the person judges that what they’re currently doing is working for them – our job is done. We can “leave the door open” for them by indicating that there are alternative strategies the person might want to experiment with in the future, but pushing against a person’s own belief that they’re doing fine just isn’t aligned with ACT.

If the person agrees that no, their current approach isn’t working – then we can begin exploring what’s going on. Occupational therapists might begin with daily activities, perhaps identifying what’s important about them, and then experimenting with (or playing with!) different ways of doing them. As an occupational therapist, I’m likely to want to understand is showing up for the person, maybe draw on other important values to help them to begin to use a coping strategy. The cool thing about ACT is that while committed action must be 100% we can adjust the demands of that action to the level of confidence a person has.

For example, if someone really has strongly fused ideas that “everything needs to be done for the children before they go to school”, we might begin by laying out the children’s lunches but asking the children to put them into their bags. Two things might be going on in this case: one might be about loosening the fused idea that “good mothers do everything for their children” while simultaneously helping the person develop skills to communicate effectively with their children – allowing the children to experience what happens if they forget! (Kids have ways of finding food, believe me)

We could be building on the mum’s value of raising independent children, and drawing on her skills of mindfulness and being in the present moment. We’d need to check in with her willingness to do this: is she 100% willing to let her kids go to school without physically putting their lunches into their bags? If she’s not, we might try making the task a little less challenging. This might look like allowing the children not to brush their hair before going to school, or putting the lunches beside the bags but not inside them. Whatever we do we’re gently allowing her to feel the shiver of anxiety that she hasn’t “done everything for the children” while also using another value “I’m raising independent children” to help her follow through.

In terms of where this example might go, if one of the fused thoughts is that “I feel guilty if I don’t do everything for my kids”, this is likely playing out in other parts of this person’s life. By helping her be willing to experience that anxiety in the pursuit of supporting her children to become independent, she’s developing more space between her thoughts and what she decides to do with them. She’s rehearsing a process where she draws on strengths (values, mindfulness, cognitive defusion) to help her commit to doing something that’s not easy. And doing this in one part of her life begins to open the possibilities for doing this in other parts of her life.

Pain rehabilitation and management is often not so much about dealing with the pain and effects of pain on life, but on life and how we live it. Life is more than whether we’re pain-free, fit or happy, it’s about moving onward in the direction of what’s important to us.

Hasenbring, M. I., Andrews, N. E., & Ebenbichler, G. (2020). Overactivity in Chronic Pain, the Role of Pain-related Endurance and Neuromuscular Activity: An Interdisciplinary, Narrative Review. The Clinical Journal of Pain, 36(3), 162-171.

Vowles, K. E., Sowden, G., Hickman, J., & Ashworth, J. (2019). An analysis of within-treatment change trajectories in valued activity in relation to treatment outcomes following interdisciplinary Acceptance and Commitment Therapy for adults with chronic pain. Behav Res Ther, 115, 46-54. doi: 10.1016/j.brat.2018.10.012

That elephant in the room thing


This weekend I was incredibly fortunate to speak at Le Pub Scientifique (the next one is the super intelligent Tasha Stanton!) about one part of our pain conversation that’s absent: how do we have a conversation about when pain persists and doesn’t respond to any treatments?

I still don’t have any research to show how we might broach this topic in a way that respects the person with pain, acknowledges just how poorly our treatments do, and provides a framework for us to collaborate. It’s like this big bogey sitting in our clinics that we pretend isn’t there.

Why do we need to have this conversation?

Well, one reason is that our treatments are pretty poor and by ignoring this reality we’re sitting there with our hands over our ears going “lalalalala” as if by NOT talking about it, it doesn’t happen.

Another is that people living with pain are put through the most awful process of being offered something (hope!), waiting to get that something (waiting, waiting, waiting…life on hold…), getting it (ooh! exciting!), waiting for it to work (waiting, waiting, waiting…life on hold…), then finding it doesn’t help (despair!). Rinse and repeat. The time spent waiting alone is such an incredible waste.

As a result of us not being brave enough to talk about it, people with pain are often thought of as The Problem. They get blamed for not responding. Blamed by family, friends, other health professionals and funding agencies, insurers and case managers, and worst of all: their own minds.

In 2007 I hit my head and sustained a concussion. For 18 months I wasn’t working full time because I’d need to come home and sleep for at least an hour. Even though I knew that my symptoms were real, and that it can take time to recover from concussion, I spent hours worrying that I was “exaggerating”, “taking things too hard”, “not working hard enough”, “not motivated enough.” Believe me, these thoughts do not help anyone, and they delayed my recovery by pushing me towards a depressive episode.

Imagine if you’re a person with pain that doesn’t respond and instead of being given consistent messages about it as I was with my concussion, you’re being told “Treatment X might be a good option”, or “Have you tried Y?” or “Maybe another investigation might help us sort it out?”

How might that erode your sense of self, your confidence in your own experience?

Now I’m not suggesting we say to people “Guess what, your pain is going to go on forever” – that would be horrible, uncaring and unfeeling.

This isn’t the same as pretending that pain isn’t there, gritting teeth and “just getting on with it”. This isn’t about being resigned to a life of suffering.

What I am suggesting is that we help people to become less afraid of their pain, and to begin to start adding life into their life. That by taking pain into account we can begin to build patterns of activity that move us towards what we value – and I doubt that many of us value waiting for the next healthcare appointment. It also doesn’t mean that people can’t at the same time seek pain reduction approaches – I’ve certainly tried a bunch over the years, sadly none of them have changed my pain one iota.

When a person seeks help for their pain, underlying that request is typically something much more pragmatic. It’s about how much pain is interfering with important things the person wants to be able to do. It’s also about what the pain might signify – is it cancer? does it mean I need to change my job? does it mean I’m succumbing to old age or the legacy of being reckless as a young person? Clinicians often forget to ask “if pain was less of a problem for you, what would you be doing?” Clinicians also forget to ask what the person’s main concern is about their pain.

Addressing these concerns will, I think, help us move the conversation away from which set of exercises is better, which gadget might be new and groovy, which dominant voice should be listened to, and whether someone is “right” or “wrong” about an approach to helping people.

So perhaps, as we begin to recognise that our treatments are not very effective (despite the occasional win! Just like the gambler’s occasional win), we can work towards helping people with pain move towards what matters in their lives – with pain as a companion in the back seat, rather than taking over the steering wheel. And perhaps, somewhere along the way, there will be a place to stop to offload this passenger, but knowing that we’ll always carry the memories and thoughts of having had it as part of our lives. Pain has taught me so much! I am stronger than I think, I am good at finding wiggle room, and I am more compassionate towards others who are newer to the journey.