Coping Skills

Self-care


No, not the Instagram “self-care” of floofy slippers and a glass of wine, or an excuse to indulge in chocolate. No, I’m talking about the gritty self-care that all of us humans need to do, only some of us need to it more regularly or we’ll experience Consequences.

Self-care for people living with pain is no luxury, and it does (occasionally) mean walking away from something enjoyable, setting boundaries on demands for time and energy, AND it means many other things too.

I’ll talk about my own self-care needs because I can’t talk authentically about anyone else. Most of you will know I live with fibromyalgia, and that I’m pretty happy with my lifestyle and dealing with pain. Mostly it’s just a nuisance that I live alongside, and make room for. Sometimes it’s a PITA, and over the last year it’s been more of that and less of the “just a nuisance”.

My fibromyalgia involves widespread body pain (currently neck/shoulder but randomly goes to other places – maybe for a holiday? Who would know!). I also experience fatigue. In fact, the pain is nothing to bother me because I know it’s not a sign I’ve harmed myself – it’s the fatigue that is a killer. Probably the most difficult thing to deal with.

So when I went to a conference, and had a few late nights it didn’t surprise me to feel exhausted. I’m lucky in that I can take a couple of days off for some downtime, and I slept and now I’m pretty much back to normal. Except that it’s a short week with Easter coming up, and I have a whole day out because of a procedure – and I’m teaching Thursday night while also having some other deadlines coming up.

Lurching from frantically catching up to crashing is called “boom and bust” in our persistent pain language. According to conventional pain management wisdom (based on books like Manage Your Pain by Prof Michael Nicholas) pacing is The Way to Go. And there’s some merit in the idea of being consistent in what to expect from yourself, building up from a baseline to what works for you in your life context, to reduce the number of times you have to apologise for not being able to do something because you’ve either flared or you’re fatigued.

The problem with pacing is that we still have little agreement on what we mean by the word (is it gradually increasing activity levels? is it stopping before we flare up? is it planning each moment of the day, breaking each task into 10 – 20 minutes with a break in between? is it about using time instead of pain/fatigue as the guide for what you do?). There’s even less evidence to support pacing as a strategy – few randomised trials of pacing and studies have shown associations between pacing and avoidance. Yet it remains one of the more popular and widely-endorsed strategies for living well with persistent pain.

Coming back to self-care, one of the issues for me is to understand how I get into the situation where my fatigue and pain begins to interfere with my plans. Is it my planning that’s awry? Should I say no more often? Should I ask for help more often? Am I bad for pushing myself? Am I over-reaching myself, spreading myself too thin?

And even as I ask these questions of myself, I feel my mind judging me. After all, I should know better! I’ve been living with pain most of my life. I teach people about pain. I’ve worked clinically. Seriously I ought not to do this to myself. I should be perfect!!

Well, as anyone who knows me is perfectly aware: I am not perfect. And I mess up. I did last week when I completely forgot an appointment with someone because my mind was fried.

Here’s the thing though. This amount of self-analysis, of questioning, of planning, of organising around something that I never asked for, is what anyone with persistent pain goes through. And the often-glib “go exercise” or “just pace” or “let’s ignore pain and pretend it’s not a thing” often fails to touch the constant demands that living with a chronic/ongoing health problem poses. The negative and critical mind is prone to sniping at the “who” I am, while onlookers, clinicians in particular, might not even be aware of just how brutal and energy-sapping this process is. Every. Single. Day.

I do not have a glib answer to how best to live well with pain, and as you can tell I’m still learning even 35 years down the track! I do know I’m determined, and that drawing on values and being flexible about how I do what matters in my life has meant I’ve stayed working (even in a demanding job), kept on playing (creative pursuits are like oil on dry skin), learned to keep my eyes on the prize and not sweat the small stuff…

This post is a plea to health professionals working with people who are in the early stages of living with persisting pain: don’t add things to a person’s life without thinking about the constant juggle the person will need to do often for the rest of their life. Don’t make up another list of exercises, or make suggestions about another technique to add in to their already busy daily life without asking yourself “Could I do this every day? In the presence of ongoing pain?” Ask yourself, too, whether you’re implying that this person is “doing it wrong.” Think hard about all the things each person needs and wants to do in their life – if you’re going to suggest adding yet another thing into their day, consider what this person might need to abandon to fit it in, think about when and where and how this person can do what you’re suggesting.

When we’re clinicians, we can be prone to suggesting that people with pain “aren’t motivated.” I reject this – motivation isn’t a trait, or a quantity we’re given or not given. Motivation is about importance, and confidence. And for so many people with pain, confidence is very very low. Saying no to things requires confidence. And sometimes saying no is the hardest thing.

Self-care. It’s a life-long commitment to being vigilant about the choices I make every day, because the consequences of not caring for myself can be tough to swallow. And yet it’s also OK to mess up and to be with that flare or fatigue, and remember what matters in life.

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

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!

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

Flare-ups and how to handle them


If you live with persistent pain of any kind, you’ll know what a flare-up is. Periods of time when pain is exacerbated and sustained at a higher than average level over at least a few days, often longer. Flare-ups always settle down – but oh my, it can feel like they’re going on forever!

Handling a flare-up is not quite the same as handling everyday pain. Everyday pain, for those of us who manage it independently of healthcare professionals, usually needs a generally steady routine, not too many surprises. A regimen of movement, relaxation, fun, mindfulness, plodding on and managing stress. A little boring, if you will. Most people will add or subtract some medication (if there is some to help) and vary the activity level depending on the demands of the day.

But when a flare-up happens, some people can find themselves side-swiped and confidence can plummet, while the usual everyday coping can feel like it’s not quite cutting it. For some people, it can be a complete surprise to find that on one day everything feels “normal” yet the next can be a flare-up.

What health professionals do during a flare-up is important, because how we respond and our attitude towards flare-ups can build confidence, or knock it even further.

Identify your early warning signs

Even though a flare-up can feel like it’s come from out of the blue, mostly there are early warning signs that perhaps haven’t quite been recognised (or have been ignored because something else is more important than pain intensity). It can be a period of feeling really good (so that the normal coping strategies don’t feel quite as relevant, and are just a bit easier to forget to do). It can be fatigue, or feeling a little overloaded. It can be a rotten night’s sleep, or a really busy day without the normal recovery time.

An early warning sign can be being more achey than normal, a little stiff and less keen to move. For some it can be feeling a little irritable, or a little down.

There may be parts of the body that don’t typically get sore – but during a flare-up, they begin to join in the action. The quality of the pain may be different: burning, deeper, achier.

Noting these “flare-up early warning signs” in a diary can be a great way to develop an alert system to remind us to focus on keeping on with the strategies that we’ve found useful – like a reminder not to suddenly stop what’s working!

Rescue Remedy

No – I don’t mean the drops you can get! Please no!! The rescue remedy I advocate is to develop a set of strategies, a plan, that is written down ahead of when it’s needed. During a flare-up, thinking straight can be difficult, so pre-planning can reduce the effort at the time.

I always begin by developed a “Can Cope” card. This is a business-card sized card with four or five simple steps that can be used immediately and may even abort a flare-up before it begins. The first instruction is always “Breathe out!” followed by using a calming word like “relax” or “I’m fine” or “chill out”. Three to five out breaths can help to interrupt stressful thinking, enough to move on to the next step that I pretty much always include: notice. Noticing in this instance is a few minutes of body scanning to notice just what is happening in the body in the here and now. A body scan allows an opportunity to recognise where any additional tension is held, to notice and stop rushing if that’s part of the problem, to simply be for a moment or two.

I then like to include a few actions like get up and stretch, or go grab a drink of water, something that allows for some whole body movement – maybe a walk around the block. And finally, I end the Can Cope Card with a reminder that these flare-ups do end!

Working out why it happened

It’s tempting to try and find out what went wrong and why a flare-up happened, but it’s not uncommon to be unable to put a finger on it. So many variables are likely to influence! As I mentioned at the start of this blog, it can be a night of rotten sleep, a busy day, maybe a change in routine, feeling overloaded, maybe even having had a period of feeling really good.

If flare-ups don’t trouble the person very much, analysing how and why it happened may be counter-productive. It’s common for us to think firstly about movements or activities that are out of the ordinary, or perhaps more demanding than normal. These are the easiest flare-ups to identify. They can even be predicted, so can be built in to the weekly planning.

Other contributors can be much more difficult to identify – especially those involving emotional factors, stress, or enjoyable activities. For me, sitting for long periods, as in a conference, or travelling to a conference can be a flare-up initiator. Holidays not so much, but it’s not uncommon for me to feel sore in the days before heading away on holiday – all that rushing around, getting things ready!

Often it can be a cumulative series of seemingly irrelevant decisions. A whole cascade of tiny changes to routine that eventually tips the balance over – maybe working late a few nights in a week, combined with not as much time for exercising, and little more stress at work and not doing mindfulness or taking time out. On their own, they don’t seem much – but they erode the reserves needed to deal with pain on a daily basis.

If pain flare-ups like this do bother the person (or you!), it’s worth taking some time to track activities and mood, fatigue, sleep, and habits for a while. Simply tracking can be enough of a reminder to keep the habits going! But analysing what happens to energy, pain, mood can mean better capability for preparing and noticing in advance. That way, while a flare-up can be on the cards, gradually the person can get better at predicting what things set it off, and can make an active choice about whether it’s worth doing.

Health professionals

If we aim to prevent flare-ups, we’re on a hiding to nowhere. While there’s not a lot of research about on flare-ups, what research there is shows that flare-ups are common – 51% of people interviewed by telephone, all of whom had chronic low back pain, reported flare-ups (Suri, Saunders & Von Korff, 2012). It may be a matter of language: flare-ups can be called “breakthrough pain” (although this applies to cancer pain, when pain ‘breaks through’ the opioid dose, and shouldn’t be applied to noncancer pain); flare-ups can be called relapses or exacerbations or fluctuations. Whatever they’re called, there just doesn’t seem to be much in the research literature although qualitative studies do seem to show flare-ups as important.

If flare-ups are common, what are we doing as health professionals, to help people with pain learn to roll with the fluctuations? I think this depends a great deal on our own fears about pain. If we feel uncomfortable about pain, worry that our patients are “doing harm”, or feel concerned that they may get distressed because of pain, we may inadvertently convey this to them. We may try to dig deep into what may be causing the flare-up, we may ask the person to stop doing things, or alter their programme to prevent the flare-ups from “getting worse”. Or we may simply avoid discussing them at all. None of these approaches seem helpful to me.

I think (yep, opinion time!) that we need to convey our confidence that this person has the skills, capability and confidence to manage this themselves. I think it’s useful not to rush in to try to “fix” the problem, or to help the person out too quickly. This doesn’t convey the message that we are confident they can manage! It doesn’t mean ignoring the person, but it does mean we might want to think about asking the person what they can do to get through. And we can let people know how good it is that they’ve come in to see us even though it’s a high pain day. We can remind people of the skills they have and think of asking them which options they’d like to use. This might sound contradictory after I’ve just said not to rush in to “fix”, but to me the difference is that in one we’re supplying the answers and doing to, but in the latter we’re reminding people and giving the choice back to them.

I also think it’s worth avoiding analysing all the possible contributors, at least initially. Why? Because our temptation will probably be to focus on movements or activity changes that “caused” the flare-up, but it’s probable that many tiny decisions, multiple factors are the real issue. And if we focus on physical factors, we’re conveying yet again that pain is a problem of “the physical” – which may not be the case.

I’ve often said that if someone hasn’t had a flare-up while we’ve been working together, then I haven’t done my job. Flare-ups are part of living with persistent pain, and learning to roll with them is a skill I think everyone who lives with persistent pain can develop. Even though I know it’s difficult. But as people with persistent pain know, we are tough!

Suri, P , Saunders, & Von Korff, M., (2012). Prevalence and Characteristics of Flare-ups of Chronic Nonspecific Back Pain in Primary Care: A Telephone Survey. Clinical Journal of Pain, 28(7), 573-580.

The know-do gap: does social media help change things?


This post is prompted by a Facebook post from Connor Gleadhill asking “in what way is SoMe contributing to knowledge translation (KT)? I’m interested in the experience of those tagged and if anyone is aware if it has been rigorously tested. As far as I’m aware it hasn’t. Is it simply a confirmation bias arena? We are humans after all, and we curate our experience on SoMe.”

Oh such a great question and one reason I still hang out on social media!

I’ve been blogging since 2007, two years before the famous Body in Mind (who have just announced they won’t post any more content). Over that time I’ve risen to the top of the blogs, then plummeted down to my current level. Yet I still have a passion for doing this (usually) weekly post.

One reason I post is in answer to Connor Gleadhill’s question: one method for translating knowledge from journals into clinical practice is through online content. Content that’s accessible (not behind a paywall). Content that offers an opinion. Content that (hopefully) translates a-contextual information into a context more familiar to clinicians.

Is there evidence that knowledge translation occurs in this space or is it all a vast echo chamber where we listen to ourselves and pretend that everyone who is anyone agrees?

Well, in the pursuit of understanding this phenomenon, I’ve been researching the research looking at the effectiveness of one form of social media: the community of practice. A community of practice is a concept developed by Wenger yet one that has (probably) existed since humans took up tools and started learning from each other. It’s a place where “groups of people … share a concern or a passion for something they do and learn how to do it better as they interact regularly.” Senior or recognised “expert” members of the group provide experiential knowledge to guide junior or “apprentice” members as they learn how to … the “how to” depends on the group. In my case, it’s a group devoted to learning how to apply a multifactorial model of pain into diverse areas of clinical practice.

The group I’m part of is unusual in that it has emerged organically, not having been established artificially for the purpose of studying it. I’ve written a paper on the findings from a study of this group, to be submitted shortly. So when I talk about “effectiveness” I have to refer to artificial studies where communities of practice have been examined. One integrative review by Rolls, Hansen, Jackson and Elliott (2016) found 77 studies consisting of 44 qualitative papers, 20 mixed methods studies, and 8 literature reviews. The range of social media used was wide and included Listservs (remember them?), Twitter, “general social media” (not sure what that really means!), discussion forums, Web 2.0, virtual communities of practice, wiki, and Facebook. The clinicians involved included medical practitioners, multidisciplinary specialty group, health care professional “in general”, midwifes, nurses, and allied health professionals. The study found that:

…social media use is mediated by an individual’s positive attitude toward and accessibility of the media, which is reinforced by credible peers. The most common reason to establish a virtual community was to create a forum where relevant specialty knowledge could be shared and professional issues discussed (n=17). Most members demonstrated low posting behaviors but more frequent reading or accessing behaviors. The most common Web-based activity was request for and supply of specialty-specific clinical information. This knowledge sharing is facilitated by a Web-based culture of collectivism, reciprocity, and a respectful noncompetitive environment. Findings suggest that health care professionals view virtual communities as valuable knowledge portals for sourcing clinically relevant and quality information that enables them to make more informed practice decisions.

Rolls, Kaye, Hansen, Margaret, Jackson, Debra, & Elliott, Doug. (2016). How Health Care Professionals Use Social Media to Create Virtual Communities: An Integrative Review. Journal of Medical Internet Research, 18(6), e166. doi: 10.2196/jmir.5312

Heidi Allen and colleagues (2013), from Body in Mind, found that by releasing papers on social media, there was an increase in dissemination of those papers. Chan and colleagues (2018) also identified that there was much “scholarly engagement” through online interactions. There are detailed analyses of the social construction of knowledge online (Gunawardena, Flor, Gomez & Sanchez, 2016), studies of how acceptable social media knowledge translation is amongst health researchers and clinicians (Tunnecliff, Illic, Morgan, Keating, Gaida, Clearihan et al 2015), and examination of patient’s use of social media (Antheunis, Tates & Nieboer, 2013).

Social media can “democratise” information. Because social media is readily accessible across so many forms and devices, and because there is greater opportunity to interact with authors, and the numbers of people seeking health info, social media allows more information flow than journal articles or conferences. There’s always a risk in that: loud voices, those with marketing smarts, those with a punchy delivery and especially those with a controversial message will attract more attention than, for example, my long form writing on complex topics.

Reader beware must also be the motto. Info dumping a load of references tangential to the actual topic, along with little, if any, critical analysis of that material, can lead to what appears to be authoritative content, but may perpetuate unhelpful and outdated ideas.

I continue blogging because it helps me sort my ideas out. I find it helps me “construct” and assemble what I know into something I can then apply. It helps me sift through the overwhelming wealth of research pouring out of Universities and research groups everywhere around the world. As I look at the over 1100 posts I’ve written, I can see the issues I’ve pondered, and the stance I take on issues such as communication, respect, thinking before adopting a new treatment, clinical reasoning, collaboration. Many of these are attitudes towards people who live with pain.

The things I most appreciate about social media are that I have a network of people with whom I can nerd out. People who do “get it”. People who may not agree with me but who are willing to entertain alternative views. People who push me to learn about areas I wouldn’t normally. People who live with pain who inspire me. People for whom I have great compassion because of their personal stories. I have a sense of community. A real assemblage of people I can turn to when I have questions.

In answer to the question “Does social media contribute to knowledge translation?” I would say it is as effective as the readers and contributors make it, possibly more effective than attending a conference (the best part is always the social isn’t it?!), certainly more useful for generating clinical discussion than a publication locked up in a journal, and as long as conversations remain respectful and discuss ideas and not personalities, it’s an effective way for clinicians to construct knowledge for their practice setting. I’m still going to blog even if my average reader numbers in the last week were a measly 100 people.

Allen, Heidi G, Stanton, Tasha R, Di Pietro, Flavia, & Moseley, G Lorimer. (2013). Social media release increases dissemination of original articles in the clinical pain sciences. PloS one, 8(7), e68914.

Antheunis, Marjolijn L., Tates, Kiek, & Nieboer, Theodoor E. (2013). Patients’ and health professionals’ use of social media in health care: Motives, barriers and expectations. Patient Education and Counseling, 92(3), 426-431.

Chan, Teresa, Trueger, N Seth, Roland, Damian, & Thoma, Brent. (2018). Evidence-based medicine in the era of social media: Scholarly engagement through participation and online interaction. Canadian Journal of Emergency Medicine, 20(1), 3-8.

Gunawardena, Charlotte N, Flor, Nick V, Gómez, David, & Sánchez, Damien. (2016). Analyzing social construction of knowledge online by employing interaction analysis, learning analytics, and social network analysis. Quarterly Review of Distance Education, 17(3), 35.

Tunnecliff, Jacqueline, Ilic, Dragan, Morgan, Prue, Keating, Jennifer, Gaida, James E, Clearihan, Lynette, . . . Mohanty, Patitapaban. (2015). The acceptability among health researchers and clinicians of social media to translate research evidence to clinical practice: mixed-methods survey and interview study. Journal of medical Internet research, 17(5).