Coping strategies

Musing on “the social” in pain rehabilitation

What do we think about when we consider “the social” as a factor in pain rehabilitation? Do we think of socioeconomic status? Maybe employment status? Perhaps societal attitudes towards pain and recovery? Do we ask if the person has someone they trust in their life? Maybe we even discuss how a relationship is going, whether the person sees their friends and family?

Have we forgotten that possibly the most potent influences on pain behaviour are the people around the person we’re seeing?

It will be no surprise to anyone reading my work over the past 10 or more years (yes, really! it HAS been that long!) that I love reading older pain theorists, researchers and historic approaches to pain. We can learn so much from the pioneers in this area – people like Waddell, Loeser, Main, and Fordyce. While some of the details of theoretical advances may have been superseded, the ideas they promoted remain as potent as ever.

Fordyce, in particular, attracts my interest. Bill Fordyce was a clinical psychologist who pioneered behavioural approaches to reducing disability for people living with persistent pain. Rather than offering repeated surgeries or medications, Fordyce looked to how what we do (behaviour) is reinforced by people and situations around us. From his work, we learned about activity pacing (decoupling the relationship between activity and pain by adopting a quota-based approach to activity), time contingent medication (using medications according to a time schedule rather than “as needed”), and we learned a great deal about how other people’s responses to an individual’s behaviour could inadvertently increase or reduce the frequency of that behaviour.

Why is this important? Well, aside from the way pain behaviours develop from childhood (crying? Mama will cuddle you. Want something? Cry – and Mama will cuddle you), responses from a person’s partner will likely influence both verbal complaints and physical movements (pain behaviours) such as grimacing, bracing and guarding, and in surprising ways. In fact, in an electronic diary study where people with chronic low back pain and their partners (who had no pain) were asked to record responses five times a day for 14 days, researchers found that when a spouse observed their partner’s pain behaviour at one time, they’d be more likely to be critical or hostile towards that person at a later time. If the spouses believed that the person with pain was “trying to influence their feelings” at the first observation, their responses were more likely to be critical or hostile – and it was the attributions made by partners that mediated between pain behaviours and the subsequent criticism leveled at the person (Burns, Gerhart, Post, Smith, Porter, Buvanendran, et al., 2018).

The so what question is sure to come up for some people. Why do we care? It’s not like we can do anything about this, is it? Well… you know me – writing about this stuff isn’t just for fun! The first thing to know is that if something is influencing a person’s behaviour and especially their disability, rehabilitation professionals should be aware of it. Relationship “stuff” is part and parcel of rehabilitation because it’s part of the person’s context. Secondly, it’s not about judging whether this is good, bad or indifferent – it’s about recognising an influence on the person and considering how we might support that person to respond in a way that enhances their recovery. Finally, we need to recognise how behavioural expressions and responses to them influence us. An earlier study by the same researcher (Burns, Higdon, Mullen, Lansky and Wei, 1999) found that expressions of anger and depression by the person influenced the therapeutic alliance with the health professional and this was perceived both by the person and his or her therapist.

Should we, can we do anything to help?

First, to the “should.” Whether we like it or not, these influences are occurring – so they are having an effect anyway, and both on us and the person we’re working with. We are also constantly influencing our patients because we’re inherently social animals. It’s just that we’re probably oblivious to our influence, and consequently are likely to react rather than respond. While I don’t advocate clinicians who haven’t undertaken specific training in relationship work to begin “therapy”, there are some basic things we can and I think, should, do. We should because we’re already influencing anyway – so let’s do something helpful.

The second is, can we do anything to help? Well, yes – because as I’ve said above, we’re influencing anyway. Everything we say and do will likely influence the person we’re seeing and possibly their partner and family.

The first thing we can do is let the person we’re working with know that what they say and do influences the people around them. This might be a revelation to some! We can let them know that this communication is not deliberate, and neither is the interpretation by the partner. It’s part of being human and social.

The next thing we do is offer some information to the person and their partner. Preferably written or video – something that the person can share with their partner. This information should be about the nature of persistent pain (in particular), and that a person’s pain behaviour is unintentional. In other words, that what a person does is explicitly not intended to make the partner “feel bad for them” (ie garner sympathy – in fact, quite often it’s the opposite of what the person really wants!); that they’re not intentionally wanting to avoid doing something; and finally, that they’re not intending to “give in to the pain too easily”.

Another thing we can share with the person and their partner is that because pain is personal and internal, openly communicating about what’s going on is important. None of us are good at mind-reading! The responsibility for obtaining help has to be with the person living with pain, not the person who is observing. This might mean the person with pain needs to think about what they want their partner to do. Often it’s nothing – no fuss, no molly-coddling (been dying to use that word for a while!). But if the person does want something, it’s really good to be specific and clear: “I can’t lift this, can you give me a hand”. This doesn’t mean taking over, BTW!

Where possible, I think it would be great to ask partners and family to be involved in rehabilitation. I wonder at insurers who don’t allow partners or family/whanau to be involved in rehabilitation. I think it’s detrimental – because increasingly, we know that the social context of daily life is such an important influence on disability. Asking partners to be part of rehabilitation might be a bit easier under “lockdown” conditions in many countries at the moment, but even without these conditions, perhaps recording selected parts of sessions, even having a meeting (virtual or face-to-face) might allow partners to be part of their loved one’s rehabilitation journey.

Burns, J. W., Gerhart, J., Post, K. M., Smith, D. A., Porter, L. S., Buvanendran, A., . . . Keefe, F. J. (2018). Spouse Criticism/Hostility Toward Partners With Chronic Pain: The Role of Spouse Attributions for Patient Control Over Pain Behaviors. J Pain, 19(11), 1308-1317. doi: 10.1016/j.jpain.2018.05.007

Burns, J. W., Higdon, L. J., Mullen, J. T., Lansky, D., & Wei, J. M. (1999). Relationships among patient hostility, anger expression, depression, and the working alliance in a work hardening program. Annals of Behavioral Medicine, 21(1), 77-82.

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.

Bias: Is pain all the same?

The topic of how we define pain, and how humans respond to pain has come up for me as I mull over the IASP definition of pain. The current (new) definition is this:

An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.

Six key notes:

  • Pain is always a personal experience that is influenced to varying degrees by biological, psychological, and social factors.
  • Pain and nociception are different phenomena. Pain cannot be inferred solely from activity in sensory neurons.
  • Through their life experiences, individuals learn the concept of pain.
  • A person’s report of an experience as pain should be respected.
  • Although pain usually serves an adaptive role, it may have adverse effects on function and social and psychological well-being.
  • Verbal description is only one of several behaviors to express pain; inability to communicate does not negate the possibility that a human or a nonhuman animal experiences pain.

Now, for me the definition works fine – definitions describe and establish boundaries around what is being defined. Definitions don’t have to include all the uses of the term but instead just have to be distinct and clear, to “express the essential nature of something” as Merriam-Webster puts it.

Alongside this definition are notes about the function of pain – in other words, the notes (but not the definition) attempt to indicate why we experience pain. ‘An adaptive role‘ – in other words, pain serves a purpose in most cases and it may have adverse effects.

The question that leaps out to me now is what is the adaptive purpose of pain? This is the question that vexes many commentators who really don’t like the idea of what one author has called “maldynia“. Maldynia is thought to be “bad pain” that is severe, disabling and long-lived. I’m not fond of the word, but I do think there are pains that are not “adaptive” and these are amongst the ones that puzzle us the most in clinical practice. Things like phantom limb pain, nonspecific low back pain, complex regional pain syndrome and dear old fibromyalgia.

Back to the adaptive purpose of pain. Right now I have a cracked area on my heel. It’s quite a deep crack and it hurts every time I put my foot down. The way I’m using that information (the ‘ouch’) is to notice that yep, the crack is deep and there is tissue damage. And I am doing something about it by looking for urea-based cream and covering it while I work in the garden. I’ve (1) noticed tissue damage; (2) recognised that I need to do something about it; and (3) from experience, know that it will settle down and no longer be painful once the tissues have healed. I’ll also take care in the future to treat my heels so they remain soft as a baby’s bottom.

The metaphor of pain as an alert and action prompt serves quite well for me at the moment. And in most cases this is how we experience pain. Another example: I burned my thumb and finger on a soldering iron recently – you bet that hurt! I let go of the soldering iron PDQ, soaked my thumb and finger in cold water, then covered them until they had healed. The pain I experienced settled down after a day or so (unless I held a hot coffee cup!), and the new skin was a little tender for a couple of weeks. Again – pain served a purpose to alert me to stop doing dumb stuff, to protect the area, and to learn not to grab hold of the wrong end of the soldering iron! The metaphor of pain as an alert, call to action and learning experience again worked pretty well.

Now over the last few years I’ve had shoulder pain, imaging showed a bit of an enlarged bursa, a tiny fragment of calcification. This pain hasn’t settled down, even after I had cortisone injection AND did all the movement stuff including strength (yes – I did strength stuff!). Where oh where is the purpose or function of pain in this instance? Pain is not serving me well – I’ve been alerted, I’ve acted on that alert, nothing has changed and the metaphor breaks down.

But let’s take a look at the notes from IASP again – “Although pain usually serves an adaptive role” – usually. Usually. So there are times when pain does not serve an adaptive role. I think my shoulder pain, my groin pain, and my neck and back pain (yep, good old fibromyalgia) does not serve a function. I can’t think of any utility in having a grumpy body that really gripes about doing everyday movements like getting dressed, standing up from a chair, turning to look our the rear window of my car while I reverse down the driveway or aches in different parts of my body on different days then moves somewhere else at random.

A hidden assumption of the pain definition notes is that the “adaptive role” is reserved for those with a normally functioning nervous system, and where pain is associated with nociceptive activity, or inflammation. What if a nerve itself is damaged? What if the spinal cord is diseased or traumatised? What if there are changes to the way the nervous system processes information (we have that in every other sensory process, and in every other body system)? The experience of pain remains the same – still the same old aching, burning, gnawing, stinging sensations and the “ew”, “I don’t want this”, frustrating, totally unpleasant sensory and emotional experience as defined. The adaptive function, however? Not present.

The thing is, while I focus on persistent pain, most pain by far is not ongoing. I expect my heel crack to heal and the pain to go, and my now-slightly scarred finger and thumb are fine now.

Yes, the epidemiology of persistent pain shows that the prevalence of pain that goes on for more than three months is between 13–50% of adults in the UK. Of those who live with chronic pain, 10.4–14.3% were found to have moderate-to-severe disabling chronic pain (Fayaz, Croft, Langford, Donaldson & Jones, 2016). Similar findings for New Zealand – 16% of NZers live with pain lasting three months or more.

But given I think most of us will hurt ourselves at least once this year (especially with the lockdowns and stress of COVID19 and the economy and elections…), this means that more often than not, our experiences of pain are the acute kind. The ones that do alert us to notice what’s happening in our body, to take some kind of action, and to learn something useful from this experience.

So, while the metaphor of an alarm, alert, “danger signal” or “bear” or “beast” doesn’t hold up for all of our pain experiences, on the whole, it works. And the purpose of metaphor is “a way of conceiving of one thing in terms of another, and its primary function is understanding” (Lakoff and Johnson, 2003). Ultimately, we use metaphors like these to generate a sense of purpose for an experience that is commonplace, and the most common pain we have is a short-term, temporary one. Let’s not let my bias towards persistent pain lead me astray.

Fayaz A., Croft P., Langford R., Donaldson J., Jones G. Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies. BMJ Open. 2016;6

Lakoff G, Johnson M. Metaphors we live by. Chicago: University of Chicago Press, 2003:36.

Merskey H., Bogduk N., editors. IASP task force on taxonomy, Part III: Pain Terms, A Current List with Definitions and Notes on Usage. IASP Press; Seattle, WA: 1994. pp. 209–214.

Why learning about pain can help – an old study worth revisiting

If you’ve read my blog over the years you’ll see that I love a bit of history. Learning from older studies, and older opinions, can help us position our current thoughts in a larger context. Older studies can also highlight concepts that haven’t grabbed the attention nearly as much as more recent studies but still have value.

Today’s post is about a studied published in 2004. It’s one I’ve often used to illustrate how influential our expectations or beliefs are when it comes to pain intensity and pain aversiveness/unpleasantness.

Take 31 healthy undergraduate students (50% were women in this case). Split them into two groups, and offer them a small incentive (a large bar of chocolate and a soft drink – OK I’m in!). Hold a set of objects to the back of their necks and ask them to rate the experience on a set of visual analogue scales ((1) very soft–very hard; (2) not prickling–very prickling; (3) not noticeable–very noticeable; (4) not painful–very painful; (5) not rough– very rough; (6) not damaging–very damaging; (7) not pleasant–very pleasant; (8) very cold–very hot; (9) very simple–very complex.). The objects were:

a feather, a small mirror, a rough brush, a paper handkerchief, a metal bar, a piece of hard plastic, a piece of sand paper, and a gel. The metal bar (aluminium, length 17.5 cm, diameter 3 cm) was cooled down to -25 degrees Celcius. This temperature was chosen because it’s not damaging when held briefly against the skin.

Each person was then individually exposed to the item, and asked to complete the ratings. The only difference between the groups was that participants were told just before the metal bar was applied, “this is very hot” or “this is very cold”.

The findings supported the hypothesis: when people thought the stimulus was hot they rated it as more painful AND more damaging than when they thought it was cold.

What do we make of this? The simple interpretation is that people interpret what happens to them in light of what they think is going on. That meaning influences the experience of pain. And that this interpretation occurs rapidly and without conscious awareness. The authors argued that attentional focus, anxiety and interpretation all influence the experience – however, in this instance, attention to the stimulus was greater in the case of the “cold” stimulus than the hot. Anxiety might influence attention to a stimulus, and “hot” might be more anxiety-provoking than “cold”, enhancing attentional awareness – or not. So the final consideration from this study is that if interpretation is essential in perceptual processing, tissue-damage related meaning might itself influence how pain is perceived.

The authors conclude by saying that their findings “support the hypothesis that higher order psychological processes influence the experience of pain” and go on to say they are “also of clinical importance, as they suggest that correction of dysfunctional interpretations of pain might help to reduce the burden the experience of pain poses on many people.”

Since this paper was published we have seen a proliferation of educational approaches to help people experiencing pain interpret this in a different way. I’m loathe to describe a person’s interpretation as “dysfunctional” because it is their experience – and at the same time I’m also aware that many unhelpful terms are used to describe what might be going on inside a person’s body. Some examples include “wear and tear” for osteoarthritis, “an unstable pelvis”, “your back has gone out”, “your spine is out of alignment” – the list goes on.

Here’s the thing: we can absolutely acknowledge a person’s distress at what they understand is going on, and what it feels like to them. We should, I think, always be compassionate and validate the distress we see in a person. That is real and their experience.

Here’s another thing: when the distress is based on inaccurate or unhelpful information, then I think it’s unethical to leave a person thinking this – even if we’ve offered validation and compassion. Would we leave a person to believe they had cancer when they didn’t? And yet some people would argue that to offer an alternative explanation somehow invalidates the person’s experience. We can both validate the distress a person is feeling AND offer a more workable or useful alternative.

At this point in my blog I want to be absolutely crystal clear – I do not know all the mechanisms involved in pain. Nobody does. And none of our explanations are terribly “True” with a capital T, because we actually don’t know. We do have some workable explanations to dispute or replace some unhelpful or unworkable explanations – eg that what we can see on imaging doesn’t equate with pain; that “issues in the tissues” are poorly correlated to pain; that “wear and tear” is often interpreted by people as “I’m wearing out” when it might be more useful to describe osteoarthritic changes as “age-related changes”. We definitely know that the brain is involved in our pain experience, and we know that various so-called psychological processes influence how much of a nociceptive stimulus is processed. What we don’t know is how – and that’s OK. To a great extent the “how is pain ‘produced'” question remains unanswered. But to leave people with an impression that “if I bend without using my core, I’ll do serious damage”, or “this could leave me in a wheelchair if I’m not very careful” in the name of validating a person’s experience is, I think, the very worst example of paternalism.

Do I espouse any particular way of helping someone make sense of their experience? Yes, glad you asked. My preference is to take the person through their own experiences, to help them “join the dots” of the various factors that might be influencing their pain. If, and when, it’s appropriate I might add in some things we know about pain such as increased anxiety likely increases pain and attention to pain – and this is why, in the middle of the night when there’s not much going on, and a person isn’t sleeping, they might notice their pain really going nuts. I accept that pain is present, and how or why isn’t nearly as important as exploring what this person notices about their own pain. And sometimes that might include some gate control theory, some neuromatrix, some descending inhibition information, and so on. In the service of my clinical reasoning about why this person is presenting in this way at this time, and what might be maintaining this person’s predicament.

TL:DR – what a person thinks is going on has a powerful influence on both pain intensity and unpleasantness (oh and beliefs about harm). This matters because some explanations given to people (and some of the rubbish found on the internet) are not helpful at all.

Arntz, A., & Claassens, L. (2004). The meaning of pain influences its experienced intensity. Pain, 109(1-2), 20-25. doi:10.1016/j.pain.2003.12.030

Looking beyond the immediate

When I graduated as an occupational therapist, I was told that my profession was “problem-solving” and “motivation”. At the time (early 1980’s) Lela Llorens‘ problem solving process was the fundamental approach taught during our training. This approach is straightforward: identify the problem, identify solutions, select a solution, implement the solution, and review. I’m not sure if this approach is still taught but it’s stayed with me (and those memories of painstakingly completing the problem solving process documentation…).

There’s one small step that I think is either not fully articulated, or maybe gets lost in the iterative process of identifying solutions, implementing them and reviewing: and that’s the process of identifying contributors to the problem. Let me take you through a case study as an example.

Luke is in his mid-20’s with widespread pain. He’s off work, and his diagnosis is “fibromyalgia”. It started when he hurt his back working on cars (he’s a true petrol-head!) about a year ago, and now his pain dominates his life as he finds his pain has permeated his body. He doesn’t know what’s wrong with him, and thinks that his pain is because someone didn’t “fix” him when he first hurt his back.

The main thing he wants to be able to do is get back to driving and working on cars. It’s all he’s ever wanted to do, apart from play computer games, and he’s most happy at the moment when he’s watching motor racing on the net, preferably with a can of some high-sugar, high caffeine drink and a bit of weed. He otherwise doesn’t smoke tobacco, drinks on occasion, but he’s isolated and feels at a loose end.

The referral to an occupational therapist read “Luke wants to get back driving, will you assess, and provide appropriate intervention?” Implied, but not explicitly stated in the referral is that if Luke can return to driving, it will help him in his job search. Luke isn’t terribly interested in returning to work right now, because his focus is on what’s wrong with him and driving for fun.

The occupational therapist saw Luke, and assessed his ability to sit in the car, reverse the car, and drive over normal highway conditions. She thought he needed a seat insert so he was more ergonomically positioned, and she also thought that he could do with a better chair in the lounge because he usually sat slouched on the sofa playing his video games.

So she found him a suitable cushion and ergonomic backrest for his car, and he was also provided with chair raisers to lift his sofa up, and some cushions behind him so he was in a more upright position.

Luke was happy with the changes, though secretly a bit worried that his mates would think he was soft if he had a special seat cushion, and that old people used chair raisers, so he wasn’t at all keen on them in his lounge. But he took them anyway.

Job done.

Oh really? Yes, the occupational therapist addressed his seating and yes, he can now drive a bit more comfortably and even play his video games and watch TV, but did she really identify the problems?

You see, she identified the problem as “Luke can’t drive the car”, and she even dug a little deeper and identified that “Luke can’t drive the car or play his video games because he’s in pain.”

And that much is true – he was sore, told her he was sore, and pointed out that the position he used in the car and on the sofa was the same.

The problem is that – that wasn’t the problem.

There were a few more questions the therapist could have asked if her focus went beyond the immediate “problem” and she unpacked the next question which might have been “why is pain such a problem for Luke, and why is it getting in the way of Luke’s driving?” She might have added another question too – “why is Luke presenting in this way at this time, and what is maintaining his situation?”

Luke is a fictitious character, but “Luke’s” are everywhere. People who present with problems of occupational performance, but the problems contributing to those problems are the real issue. And yet, I’ve seen so many occupational therapy reports recommending “solutions” for similar problems that solve very little and probably compound the problem.

Where did our fictitious occupational therapist go wrong? Well, included in the problem solving process (and the variants developed since then) is a section called “assessment”. What exactly should be assessed in this part? Of course the assessment components will differ depending on the model of “what’s going on” held by the occupational therapist. When a simplistic biomechanical model of pain is being used, all the understanding of Luke’s values and beliefs, all the importance he places on being able to drive, the environment (his car seating, his sofa) – so much of what’s commonly included in an occupational therapy assessment might have very little to do with the problems Luke is having in daily occupation.

Leaping in to solve the problem of being able to drive focuses our minds on that as the key problem – but what if we looked at it as a symptom, or an expression of, other problems? This means, as occupational therapists, we might need to do a couple of things: firstly, we might need to assess more widely than “driving” or even “sitting” as the occupational performance problem. While referrers use this kind of approach to ask us to help, it doesn’t do much for our professional clinical reasoning. It tends to anchor us on “The Problem” as defined by someone else.

Even being person-centred, and asking Luke what he needs and wants to do may mislead us if we forget to look at the wider impact of pain on daily doing. If, as occupational therapists, we’re ignorant of the bigger picture of what’s going on when someone is disabled and distressed by their pain. If we forget that there are underlying processes we are well-equipped to deal with. If we forget the wider body of research into pain as an experience.

Perhaps occupational therapists could take some time to think about our contribution to the pain management team. I’ve been banging on about our knowledge translation skills, our awareness of context and how much daily life context differs from a gym or a clinic or an office. I’m not seeing that knowledge being demonstrated by occupational therapists in practice. What I’m seeing are stop-gap solutions that skim the surface of how pain impacts a person’s daily doing.

If occupational therapists recognised what our profession can offer a team, we might look at how someone like Luke could benefit from our in-depth assessment of what he thinks is going on, of how he communicates when he’s seeing other health professionals, of how he’s coping with his pain and how these strategies are taking him away from what matters in his life. We’d look at not just his occupational performance, but also those pain-specific factors well-established in research: his beliefs, his attitudes, his emotional responses, his social context, his habits and routines, his way of processing what he learns from others. We’d begin to look at him as a whole person. We might even look at how he’s integrating into his daily life all the things other clinicians in the team are offering.

Occupational therapy is a profession with so much to offer AND we need to develop our confidence and knowledge about what we do and about pain. We need to step outside of the narrow focus on “finding solutions and implementing them” and extend our assessments to identify the problems contributing to occupational performance difficulties.

Becoming resilient

Rehabilitation professions are about helping people recover from illness to return to what matters in life. Sometimes as I read the myriad social media posts on ways to help people with pain, I wonder what kind of life rehabilitation professionals live themselves. Does our focus on what’s done during rehabilitation represent the way people live in everyday life?

I suspect that because rehabilitation has emerged from a medical model, much of our expectations and the framework for our work has remained in a “fix-it” or “there you go, good as new” mindset. A kind of short-term, out the door and back home lens, exacerbated by hospital adminstrators and policy developers needs to get people to leave hospital so as not to clog the beds.

Rehabilitation is often provided for people recovering from accidental injury, at least in NZ. These services consist of lots of physiotherapy – mainly exercise prescription; vocational rehabilitation – mainly time-frame expectations for the number of hours a person should be working, with adjustments made to tasks and some equipment; psychology – possibly cognitive behavioural approaches, but no specialist rehabilitation psychology yet in NZ.

The main problems with rehabilitation for persistent pain is that while provision for people receiving compensation is available (very little for those not receiving ACC), it’s often located away from where people live their lives. Even in the workplace, much vocational rehabilitation is undertaken by clinicians who are focused on helping the person return to this job only, not respond to future developments.

I think rehabilitation professionals could take a few leaves out of an approach promoted by Steven Hayes, Professor of Psychology at University of Nevada. In a recent paper he and Stefan Hofmann and Joseph Ciarrochi wrote, he proposes an “extended evolutionary meta-model” (EEMM) could provide unity to a process-based approach to therapy (Hayes, Hofmann & Ciarrochi, 2020). Much of the paper addresses concerns about the DSM V and its abysmal record of identifying underlying aetiologies for common mental health problems – and I would argue that similar concerns apply to problems inherent in attempting to treat pain. The aetiology of a pain problem probably has little in the way of influencing how a person responds to the experience.

What appeals about the EEMM is that it builds towards recognising that “defined processes of change are biopsychosocial functions of the
person in context, as distinguished from the procedures, interventions, or environmental changes that engage such functions.”

When the human genome was first mapped, I remember the enthusiasm had for finally, finally, we’d find “the genes for…” [name your disease].

Sad to say, behaviour isn’t as straightforward as that – as Hayes and colleages point out “behavior results from a diverse set of evolving dimensions and levels that include not only genes, but also many other processes. As a result, behavioral phenotypes that clearly involve genes are not necessarily genetic in a process of change sense.” Actually, many chronic diseases aren’t nearly as straightforward as we’d hoped (think type II diabetes, for example).

So what does an EEMM approach do for rehabilitation? I think we can begin to frame rehabilitation according to the foundations of evolution: to evolve, organisms need to have variability (otherwise the whole species dies out). To be resilient, and respond to what life throws at us, humans also need to have a wide repertoire of responses. This is one part of rehabilitation – to help people develop new response repertoires that fit their new circumstances. How well do we enable people to develop a broad repertoire of ways to do things?

Rehabilitation processes work to help people choose the most useful response for what’s needed in function: selection. Selection is a key part of evolution, because it allows the organism to choose a response from their repertoire to suit the circumstances. Translating to humans, given a context, people can choose a response that enables them to do what matters in their life. For example, knowing a range of ways to move an object from A to B means humans have learned to build the pyramids, and to construct Faberge jewelry. In rehabilitation, do we enable people to develop a range of responses, and do we help them work through a process of choosing well for a given context and purpose? Is a clinic the best place to learn how to choose well? Do our rehabilitation approaches incorporate motivational factors to engage people, so they can work out what’s important for their own life and values?

Retention is another process of evolution – people need to learn a range of responses, choose appropriately and know those responses well enough for them to be used when needed. Rehearsal, practice, habits and routines are the way humans have developed patterns that enable more brain space to be dedicated to choosing the best way to achieve a goal. Being able to effortlessly vary a response because it’s well-practiced is how elite sports athletes, professional dancers, musicians and performers do what they do despite the very different places they may need to do it. I think we possibly begin to do this, but often omit the patterning, the habitual practice in many different contexts that is needed to really retain variety.

Finally, evolutionary processes are about context. When the context changes, the most adaptive beings survive because they have a range of behavioural options to choose from, they know how to choose them, and the options are well-learned – and the choices they’ve made suit the new context. In rehabilitation, how well do we vary contextual demands? How often do we help people engage in what matters in their life in the person’s real world? Do we go walking across a range of different flooring surfaces, like the slippery shopping mall, the sandy beach, the rocky river-bank, the rugby field, the park? Do we mix it up with pace – fast and slow? Do we consider time of day? Do we think about the presence of sensory stimuli? Or the absence of sensory stimuli? Do we include contexts where there are lots of people – or very few, but they’re all focused on the one person? Do we think about the size, shape, fragility, wriggliness or preciousness of an object we’re hoping the person will lift?

To really help people flourish and respond to the future demands they’ll face, rehabilitation professionals might want to consider the EEMM, and begin to adopt a process-based approach to what we do. While some of the physical rehabilitation principles we use might not change, I think we could be far more creative and responsive to the processes involved in learning to adapt to altered circumstances. Maybe psychosocial flexibility is as important as muscle strength and control?

Hayes, S. C., Hofmann, S. G., & Ciarrochi, J. (2020). A process-based approach to psychological diagnosis and treatment:The conceptual and treatment utility of an extended evolutionary meta model. Clinical Psychology Review, 82. doi:10.1016/j.cpr.2020.101908

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!

Is exercise the new snake oil? or just a dirty word?

If you haven’t heard about the health benefits of exercise in the last 10 years or longer, then you’ve probably been a hermit! Exercise can do all these wonderful things – help you lose weight, reduce heart disease, moderate insulin and blood glucose levels, improve your mental health, and yes! reduce pain and disability when you’re sore. (check this list out)

The claims sound suspiciously similar to the claims made by old snake oil merchants – or the amazing White Cross Electric Vibrator!

Well perhaps there’s a little more research supporting claims for exercise… but are those claims being inflated just a little? When it comes to pain, particularly persistent pain, perhaps so…

But before I launch into some of the problems with exercise research, I have another problem with “exercise” – and that’s the word itself.

According to Wikipedia (and no, it’s not an academic reference!!) “Exercise is any bodily activity that enhances or maintains physical fitness and overall health and wellness.” Winter and Fowler (2009) in an interesting paper looking at definitions of exercise, found that “exercise” and “physical activity” are essentially the same and differ only in terms of motivation/intent, finally arriving at this definition: “A potential disruption to homeostasis by muscle activity that is either exclusively or in combination, concentric, isometric or eccentric.” Whew! Glad we’ve got this sorted.

But given the sticky nature of our minds, and that very few of us are inclined to spend hours debating the technical details, the word “exercise” has picked up quite a few other meanings. For me it conjures up images of sweaty, lycra-clad blokes grunting in front of enormous mirrors while they heave on lumps of metal to the pumping rhythm of loud music (and the eyes that follow my every move). It also raises the spectre of school sports where I was inevitably the last person chosen for any sports team, the last to come in after every run, the person who got hit in the face by the ball, who got her thumb smacked by the hockey stick the week before my piano exams…

I’m not alone in my distaste for “exercise”. Qualitative researchers have often investigated how people with pain view exercise: “I get the comments that “It is not dangerous” and that “you are not going to be worse.” I do not believe it is dangerous … but actually it happens that I become worse after .… I know that the pain will increase. And they … talk to me about pain that is not like my pain.” (Karlsson, Gerdle, Takala, Andersson & Larsson, 2018)

Boutevillain, Dupeyron, Rouch, Riuchard & Coudeyre (2017) in another qualitative study, found that people with low back pain firstly identified that pain intensity interfered “any minimal physical activity, standing still in one spot, is torture” (line 1683); “if my back hurts, I don’t do any activity that’s for sure, I am not going to the garden and do some digging, that is out of the question! I have two children, if I am in pain and they want to play, my back hurts and I can’t play with them. My back hurts I can’t do it. It’s not that I don’t want to it is just that I cannot. I am unable to” (line 29). In turn, motivation for exercise was reduced “I don’t have any desire to exercise. A lack of motivation, even apprehension” (line 390); “there needs to be this spark to get motivated, and I just don’t have it” (line 1335). Along with the lack of perceived benefits for some: “Sometimes I try to exercise and then I’m in pain, looking back had I known it would hurt I would probably not have done it” (line 2037) “It can be harmful, I give you an example: I have a colleague with low back problems, similar to mine, and she loves to take step classes, but each time she exercises too much, she is in pain but continues. I think she should stop, it is quite dangerous for her” (line 378).

A systematic review by Slade, Patel, Underwood and Keating (2014) found that “Individuals were more likely to engage within programs that were fun and had variety than ones that were boring, unchallenging, or onerous because they disrupted daily activities.” They added that “Difficulties with exercise adherence and not seeing benefits of exercise were frequently attributed to lack of time and fit into daily life.” Quotes drawn from the studies included in this review show that lack of confidence, negative experiences at the time, and poor “fit” between the exercises selected and individual preferences influence whether exercise was carried out consistently.

At the same time as these negative views, many participants in qualitative studies report that they use “movement” as a key strategy for their daily management. Whether movement looked like “exercise” as prescribed by PTs or trainers is a little less clear – people use the word “exercise” to mean many different things, hence Karlsson and colleagues (2018) combined the term “physical activity and exercise”.

Now one very important point about exercise, and one that’s rarely mentioned, is how little exercise actually reduces pain – and disability. A systematic review of systematic reviews from the Cochrane collaboration found that most studies included people with mild-to-moderate pain (less than 30/100 on a VAS) but the results showed pain reduction of around 10mm on a 0 – 100mm scale. In terms of physical function, significant improvements were identified but these were small to moderate in size.

And let’s not talk about the quality of those studies! Sadly, methodological problems plague studies into exercise, particularly sample size. Most studies are quite small, which can lead to over-estimating the benefits, while biases associated with randomisation, blinding and attrition rate/drop-outs, adherence and adverse effects.

Before anyone starts getting crabby about this blog post, here are my key points (and why I’ve taken this topic on!):

  1. Over-stating the effects of exercise won’t win you friends. It creates an atmosphere where those who don’t obtain pain reduction can feel pretty badly about it. Let’s be honest that effects on pain reduction and disability are not all that wonderful. There are other reasons to move!
  2. Exercise and physical activity can be done in a myriad of wonderful ways, research studies use what’s measurable and controllable – but chasing a puppy at the beach, dancing the salsa, cycling to work, vacuuming the house, three hours of gardening and walking around the shopping mall are all movement opportunities up for grabs. Don’t resort to boring stuff! Get creative (need help with that? Talk to your occupational therapists!).
  3. The reasons for doing exercise are enormously variable. I move because I love the feeling of my body in rhythm with the music, the wrench of those weeds as they get ripped from my garden, the stretch of my stride as I walk across the park, the ridiculousness of my dog hurtling after a ball… And because I am a total fidget and always have been. Exercise might be “corrective”, to increase cardiovascular fitness, because it’s part of someone’s self-concept, to gain confidence for everyday activities, to beat a record or as part of being a good role model. Whatever the reason, tapping into that is more important than the form of the exercise.
  4. Without some carryover into daily life (unless the exercise is intrinsically pleasurable), exercise is a waste of time. So if you’re not enjoying the 3 sets of 10 you’ve been given (or you’ve prescribed to someone), think about how it might translate into everyday life. It might be time to change the narrative about movement away from repetitive, boring exercises “for the good of your heart/diabetes/back” and towards whatever larger, values-based orientation switches the “on” switch for this person. And if you’re the person – find some movement options that you like. Exercise snacks through the day. Jiggles to the music (boogie down). Gardening. Swimming. Flying a kite. Don’t be limited by what is the current fashion for lycra and sweaty people lifting heavy things with that loud music pumping in the background.

Boutevillain, L., Dupeyron, A., Rouch, C., Richard, E., & Coudeyre, E. (2017). Facilitators and barriers to physical activity in people with chronic low back pain: A qualitative study. PLoS One, 12(7), e0179826. doi: 10.1371/journal.pone.0179826

Edward M. Winter & Neil Fowler (2009) Exercise defined and quantified
according to the Système International d’Unités, Journal of Sports Sciences, 27:5, 447-460, DOI: 10.1080/02640410802658461

Geneen, L. J., Moore, R. A., Clarke, C., Martin, D., Colvin, L. A., & Smith, B. H. (2017). Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews. Cochrane Database Syst Rev, 4, CD011279. doi: 10.1002/14651858.CD011279.pub3

Karlsson, L., Gerdle, B., Takala, E. P., Andersson, G., & Larsson, B. (2018). Experiences and attitudes about physical activity and exercise in patients with chronic pain: a qualitative interview study. J Pain Res, 11, 133-144. doi: 10.2147/JPR.S149826

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.