Resilience/Health

5 Things I Learned from Lock-down


As New Zealand emerges from the most severe lock-down levels to greater freedom (but still not back to life as usual) I’ve been reflecting on what I’ve learned – no, not a new language, new baking skills, or sudden competence in using R (see here for a great tutorial), but things about myself. Odd though it may seem, I’m leaving lock-down with a sense of wistfulness. You see, the time from the end of March to end of April has been a lovely time for me.

I’m lucky, I have a good job, my work hasn’t changed much (well, a bit), my family are safe, I live close to the beach and a park, and the weather has been kind. It’s autumn in Christchurch, and it’s been mainly fine. The bird life has been flourishing. The foot traffic past my house has been families – Mum, Dad, kids on bikes and in pushchairs. Apart from the occasional drop-kick lighting fireworks or playing the Zombie Apocalypse Siren, and hammering from 7.00am to 11.30pm, our neighbourhood has been peaceful. And yet I know so many people in New Zealand and around the globe who are really struggling. Strange times indeed. So what have I learned?

  1. Solitude is not the same as loneliness. Solitude is being alone and being OK with it. Loneliness is being alone when you don’t want to be. Being with my own thoughts, listening to the murmuring of sounds around me, letting my mind wander then gently bringing it back to focus is a pleasure, almost an indulgence. Having headspace to let what passes through my mind just pass by, without music or talking or anything interrupting my musing is a pleasure. Better still: being with someone who also appreciates being together in silence. I’ve learned to love solitude.
  2. Some kids will remember this time with gratitude. I’ve watched whole families walking together, making huts from driftwood, spotting the teddies in the windows, making low-tech memories of time being together. I have a fairy door (and a fairy) at my gate, and watching the little kids search for the fairy (who flies from tree to tree each day!) is such a joy. I’ve seen Mums and Dads out cycling with their kids then heading home to do the DIY together. What a treasure! I’ve learned (again) that families need time being families.
  3. Some things stay the same – especially if you live with pain. Even though my days have been peaceful, my pain has not. With changes to my routine, the weather, sleep, and world events playing on my mind, my life with fibromyalgia still needs managing. I’ve had aches in places I don’t usually have aches, and the things I do to live alongside my pain still need doing. For me these things are: making sure I carry on with mindfulness (I savour those moments when I can be with my thoughts but not part of them), go for my walk for headspace and body movement, keep my sleep/wake routine reasonably consistent, and eat normally (hah! there’s chocolate and alcohol and crisps. I may have slipped up a little there…). I’ve learned that pain management is really life management.
  4. Comparing myself with others is a waste of time. Yes, there are people out there learning new things, self-improving all over the place, doing their on-line socialising (and CPD), being creative and producing a lot. Good for them! I admire their achievements, and I’ve even contributed to a few of those online Zoom talks. Meanwhile, I thought I’d have been truly productive in the studio making loads of silver jewelry (those of you who don’t know – that’s my ‘hobby’ that seems to have taken over my photography, painting, sewing and everything else!). I’ve created a few pieces – but when I caught myself feeling pressured to come up with a “COVID19 Collection” I realised that this pressure wasn’t me. It was my mind being competitive and wanting to prove something to others. The need to belong can lead me to also want to be acknowledged as Something Special. Better than. As good as. Because, of course, underneath that is “I’m not good enough as I am”. So I decided to let that rope go. I don’t have to compete. There isn’t a prize for She Who Produces The Most because in the end, life is a process not a goal. I’ve learned (again) that comparisons are one way my mind beats up on me, and my mind doesn’t know everything.
  5. Resilient people are adaptable people. Resilience is a word many people in Christchurch, NZ, are well and truly over. Since 2010, and the 10,000 earthquakes since, plus the Port Hills fire, and the terror attack on Al Noor Mosque, people in Christchurch have been challenged more than many in our wee country. Resilience doesn’t mean we’re unchanged. Resilience means we change with circumstances and we develop new ways of being, ways of expressing who we are and what matters to us. I sometimes think people believe resilience means “Oh you’ve bounced back and life goes on as it was” but for me the events since 2010 have had a profound effect on my life. I can’t walk through my city without seeing earthquake-wrought changes. I see bumper stickers saying “they are us” and “kia kaha“. I walk past the memorial wall Oi Manawa when I head in to work. The new streetscapes, city buildings, ongoing roadworks and repairs – all part of the way my city has changed. That underground subversive element in Christchurch has touched so much of our lives. Resilient people have found ways to express who they are despite the enormous impact of events over the past 10 years. I’ve learned that holding on to what I value while finding new ways to express these has given me freedom and growth – but I’ve had to let go of the form, the habitual, the routines that used to frame them. It’s painful. It’s tiring. It’s real and raw and hard work.

How does all this fit into a blog about pain? If pain doesn’t challenge clinicians and people experiencing it, I’ve wasted the last 30-odd years of my clinical career, not to mention my hours of social media involvement!

Change, as a clinician, can be tough – letting go of the form of what we offer (because … science) while holding on to why we ever started working as clinicians requires flexibility.

And solitude – to reflect on what it is we really want. We do it for families, those closest to our hearts (our own families, and others), so people can be who they really are.

Comparing ourselves with others leads to a popularity contest, and the self-management approach to pain is most definitely not a popular meme. I am not part of the Instagram/Twitter/TikTok/whatever meme culture. I don’t do short, snappy sound bites. There are, as far as I can see, no short-cuts or quick fixes for learning to live well with pain. There are only connections between people who care, who are willing to be vulnerable, who will let go of some things in order to take on new things in the pursuit of what matters.

This is what I’ve learned from Lock-down.

Coronavirus (COVID19), catastrophising – and caution


I don’t often leap aboard a popular topic and blog about it, but I’m making an exception right now because, although COVID19 is new – catastrophising is not.

There are a number of people who really do not like the term “catastrophising”. There are comments that this is a pejorative term, used to deny the validity of a person’s experience. That it means the person is exaggerating or being melodramatic or in some way not believable.

But as I read the many, many headlines about COVID19, including the international toilet paper frenzy, reading about Vitamin C or “anti-inflammatory foods” to combat it, I even saw a serious post about using hands-on therapy to “shift the toxins”…. And I wonder whether we can take a good hard look at ourselves and our response to this virus.

Firstly, getting accurate information about COVID19 has been difficult. There are some authoritative sources “out there” but they’re not necessarily the most sexy sites to visit. Not many memes coming out of our Ministry of Health in New Zealand! Much of the information we read on a daily basis is in the general news media, giving a “personal story” slant on “what COVID19 means”. Some really good information coming from our politicians in NZ – but also some scaremongering from the political opposition.

Does this sound familiar? Where does the good, accurate and evidence-based information about persistent pain come from? And in the absence of readily accessible and “memeific” information, where do people go to learn about pain?

Secondly, it’s not the virus itself that’s causing the majority of trouble for people – except for the small percentage for whom the virus is deadly, mainly because of comorbidity, and health vulnerability. People who are older, already have immune compromise, and who are not able to access good healthcare are most at risk. The rest of us are experiencing the fallout of containment measures, economic insecurity, and lack of toilet paper. Sorry, couldn’t resist that last one. Seriously, most of us are being affected by the cancellation of meetings, by the need to self-isolate, by travel restrictions, by people having less money to spend because suddenly their jobs are less secure – watching my savings melt day by day…

Sounds quite similar to the experiences of people with persistent pain: often it’s not the pain itself that’s so awful, but the effects of losing contact with people you love, of having to take medications to reduce pain that leave you feeling dreadful, of not being able to play sports or do work – the loss of income security, access to healthcare, connection with people who matter. These are amongst the most debilitating aspects of living with persistent pain, let along the pain…

If you’ve found it hard to think of anything else but COVID19. If you’ve had trouble taking your mind off how you’re going to get by if patients can’t come to see you because they’re worried about giving you COVID19, or of catching it from you – that’s rumination, or brooding on it.

If you’ve caught yourself heading to the supermarket to get some extra pantry staples “just in case”. If you’ve found yourself checking in to see what your local health authorities are recommending. If you’ve been wondering if you should shut your business down for a while – and then been wondering what you’re going to do for a income if you do that. If you’ve looked up your bank balance and wondered what you’re going to do if your kids are off school for the next month, while you’re meant to be at work and there’s no-one to look after them…. you’re magnifying, or estimating that the demands of this situation might well exceed your current resources to deal with it.

If it all feels a bit overwhelming and you’re not really sure what to do next. If you’re feeling pretty stuck and getting a bit panicky. If this feels just way too much to handle – that’s hopelessness, or feeling really overloaded.

And each of these three clusters of cognitions, emotions and behaviours are part of the catastrophising construct.

Do they feel normal to you? Do you think you’re exaggerating? Do you think your reaction is over the top? No? Well you’d be (generally) quite right (except maybe the toilet paper hoarding… that’s just weird). Thinking the worst is normal in the face of uncertainty. Some commentators and researchers believe it’s one way we learn to convey our need for social support (Bailey, McWilliams & Dick, 2012; Lackner & Gurtman, 2004; Thorn, Keefe & Anderson, 2004).

At the same time, I want to take a pragmatic and contextual look at catastrophising.

From a pragmatic perspective, right now it’s completely appropriate to be a bit discombobulated by COVID19. And many of us have a lot of things to consider over the next few days/weeks as the situation changes on a daily and even hourly basis. The things we’re doing right now to plan for the worst are largely useful. That’s the point of being able to catastrophise – in the right context, in a rapidly evolving health and economic crisis, being able to consider the various futures and put plans in place to deal with them is probably a good thing. That’s the action part of the catastrophising construct.

The difficulty NOT checking your news media feed, and feeling a bit overwhelmed by it all seems to be a fairly reasonable response to an unreasonable situation. Logic, right?

So, from a pragmatic perspective right now, in the face of uncertainty, most of us are doing exactly what has got humans out of trouble many times in our history.

Now, what if we shift the context to 24 months in the future. COVID19 has now been largely contained, a vaccine is available, the virus hasn’t evolved, and while the economy is slowed, it is gradually picking up. What if, at that time, we have a friend who is still nervously scanning the headlines for the latest information on the virus? What if that friend is still stockpiling pasta and toilet paper and hand cleanser? What if that friend is still feeling like there’s not much they can do except hunker down and hide?

Now, my guess is that many of us would think this is being a bit extreme. Maybe even a bit OTT. Especially given that there’s likely to have been a LOT of media coverage of the COVID19 vaccine, and most economic activity will be returning. We might begin suggesting (gently) to the person doing the stockpiling that maybe it’s not necessary to keep on doing so. We’d think it’s a good idea to give them the new information about COVID19. We’d probably suggest that although they’re freaking out, maybe it’s time to reconsider the threat.

Context matters – catastrophising can be useful right now. In 24 months: not so much. New information will likely help us take a more realistic look at what’s going on with COVID19. It’s not that individual people won’t be personally affected if they get sick, but probably the crisis that’s happening right now will be over.

What about the validity of the person’s emotional response to their feared situation? Would we be dismissive? I hope not – because anyone who is still freaking out about COVID19 in 24 months time is still in distress! But we might be more willing to share the good news about recovery with them, so they don’t continue feeling overwhelmed and distressed. We’d not be likely to let them carry on thinking the worst, and we certainly wouldn’t be telling them their response is perfectly valid and appropriate for the threat.

What of the person experiencing pain and thinking the worst, feeling pretty awful and hopeless? Would we support them to stay in that highly distressed state? Would we say “there, there, you’re really feeling bad, aren’t you, here’s a tissue” – and walk away? Would we hesitate to suggest that perhaps they’re magnifying the problem and that they might have some other options?
Think about it. Catastrophising is a well-validated and studied construct. Hundreds of studies have shown that catastrophising is associated with poorer outcomes in so many situations – childbirth, knee replacements, hip replacements, multi-trauma orthopaedics, discomfort during internal atrial cardioversion, length of hospital stay after knee replacement, use of medications – on and on and on.

Catastrophising gets a bad rap. And woe betide anyone who TELLS someone “you’re catastrophising” because you seriously deserve a slap. Sheesh! But take a moment to consider the adverse impact on the person of thinking the worst… sleepless nights, endlessly checking their body, feeling overwhelmed and overloaded, having trouble thinking of anything else, perhaps anxious and depressed… this is not a recipe for recovery.

Call it what you will – over-estimating the threat of something, and under-estimating your resources can act as a galvaniser for preparation and action in the short term and in the context of uncertainty. When there are ways to move forward, and the threat is maybe not so great as you thought, and maybe you can do something to help yourself – then it’s probably time for us to show strong compassion. That’s compassion that cares enough to have difficult conversations, that helps another person consider their response in light of new information, and is willing to be there to help the person re-evaluate their next best steps.

Keep safe. Keep your social distance. Wash your hands. Don’t go out if you’re sick. Be sensible with the toilet paper.

Bailey, S. J., McWilliams, L. A., & Dick, B. D. (2012). Expanding the social communication model of pain: are adult attachment characteristics associated with observers’ pain-related evaluations? Rehabil Psychol, 57(1), 27-34. doi: 10.1037/a0026237

Lackner, Jeffrey M., & Gurtman, Michael B. (2004). Pain catastrophizing and interpersonal problems: a circumplex analysis of the communal coping model. Pain, 110(3), 597-604. doi: 10.1016/j.pain.2004.04.011

Thorn, Beverly E., Keefe, Francis J., & Anderson, Timothy. (2004). The communal coping model and interpersonal context: Problems or process? Pain, 110(3), 505-507.

Why are there not more occupational therapists in pain rehabilitation?


A question I’ve asked myself many times! As a small profession with a long history (as long as physiotherapy, TBH), it does seem odd that there are many, many pain rehabilitation services where never an occupational therapist has darkened the door.

Some of the reasons lie within the profession: in general, occupational therapists are busy being clinicians and have little time for research. In New Zealand, few occupational therapists pursue higher degrees, and many avoid statistical analyses, experimental design, randomised controlled studies. In fact, some occupational therapists have argued that the tailored approach used by therapists means randomised controlled trials are impossible – our interventions too complex, too individualised.

And it is difficult to describe occupational therapy in the kind of broad terms used to describe physiotherapy (movement), psychology (mind, emotions, behaviour), medicine or nursing. Occupational therapists often deal with the everyday. Things like organising a day or a week, getting a good night’s sleep, returning to work, managing household activities. Not sexy things with technical names!

So… what does a good occupational therapist offer in pain rehabilitation? These are only some of the things I’ve contributed over the years:

  • graded exposure in daily life contexts like the shopping mall, supermarket, walking at the beach, fishing, catching a bus, driving
  • self regulation using biofeedback, hypnosis, progressive muscle relaxation in daily life contexts like getting off to sleep, at work in between clients, while doing the grocery shopping, while driving
  • effective communication with partners, children, employers, co-workers, health professionals in daily life contexts
  • guided discovery of factors that increase and reduce pain in daily life contexts like the end of a working day, over the weekend, at the rugby, in the pub, on your own, in a crowd, at home
  • information on proposed neurobiological mechanisms as they influence pain and doing/participating in daily life contexts, things like attention capture, distraction, memory, emotions, stress, excitement
  • values clarification about what is important to a person’s sense of who they are in their daily life
  • progressive meaningful movement in daily life contexts
  • goal setting, planning, managing and progressing overall activity levels in daily life
  • positive, pleasurable activities to boost mood, reduce anxiety and live a life more like the person wants

What characterises all that I offer? It’s context. One of the major challenges in all our pain rehabilitation is that people feel safe when in safe surroundings, with people who elicit feelings of safety. When things are predictable – like in a clinic setting – and when clinicians are present, people feel OK to do things they simply can’t do (or won’t do) elsewhere.

Life is complex. Contexts are highly variable, often chaotic, multiple demands on attention, priorities, values – and when a skill is developed in a controlled environment, like a clinic or office, it’s nothing like the real world. This, folks, is the unique contribution of a good occupational therapist.

Someone posted an image once, on the one side was physical therapy. On the other was psychology. And the question was posed: who bridges the gap between these two professions? I say definitively that this is the occupational therapy space. We are knowledge translators. We are the bridge between clinic and daily life. It is our domain, the entire specialty area of this profession. And it has been since the professions’ inception, way back in the early 1900s.

There are occupational therapists who let us down. These are the therapists who focus exclusively on occupational participation without factoring in that we are also a rehabilitation profession. These occupational therapists provide equipment to people who are sore: the new bed, the shower stool and rails, the kitchen stool and trolley, the bed and chair raisers. Now there may be good reason for installing these gadgets – in the short term. They might keep someone safe in their environment so they can do what’s important. AT the same time they can, and do, reinforce the idea that this person cannot do, and certainly cannot change. While installing these things can mean a person is able to do – the person also learns to avoid doing these movements. This is such an important concept in pain rehabilitation – because progressively working towards being able to manage normal activities without aids is what we’re aiming for! An occupational therapist installing these things without reviewing and supporting the person to no longer need these things is just like a physiotherapist offering a person a back brace or splint and never reviewing whether it’s needed.

Why is it difficult to acknowledge occupational therapy’s contributions? Partly our rejection of a biomedical model based on diagnosing disease. Occupational therapists are about the person’s illness experience, our model is wholistic, biopsychosocial, integrative. It’s hard to articulate our contributions without using a lot of words! Or making it seem so dumbed down that people view the exterior actions (cleaning teeth, having a shower) without recognising the myriad contributing factors that influence whether this action is carried out successfully.

Occupational therapists have relied on qualitative research to examine the lived experience of people dealing with persistent pain. Rather than pointing to randomised controlled trials of broad concepts like “exercise”, we’ve tended to describe the individual and unique experiences of people as they regain their sense of self. Not something easily measured like range of movement or cardiovascular fitness, or even simple measures of disability and self efficacy. Peek behind these descriptions you’ll find synthesised strategies that integrate values, committed actions, sense of self, cognitive defusion, behavioural approaches – messy things that aren’t readily translated into simple cause and effect experiments. Multifactorial approaches that recognise that life is a contextual experience.

I contend that one of the major failings in pain rehabilitation is helping people reclaim their sense of self again. Self concept is ignored in favour of changing a person from a couch spud to a gym attender. Even psychologists can forget that when instilling new strategies, the person in front of them has to learn to integrate these new things into their world – and that means adjusting their sense of who they are. That’s the hidden work people living with persistent pain have to do, rarely supported. And yet it’s the thing people most want to resolve when they’re dealing with this experience. Who am I? Can I be me again? If I can’t be the old me, can I at least get something of what was important to me back again?

What I’d like to see are more occupational therapists being confident about what our profession offers, being willing to step up and be the resource we know is needed. We don’t need to be defensive about this – but we do need to be sure about the validity and relevance of why our contribution is so important. I think the results from research showing how short-lived positive results of pain rehabilitation really are speak for themselves. Maybe the missing link is knowledge translation into daily life contexts?

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.

Having The Conversation…


Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle”
( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.

Uncertainty: perennial controversies in pain understanding


As I write this post today, yet again there are new theories being proposed for that most common of experiences: pain. Not only theoretical controversies, but even the definition of pain is being debated – is pain an “aversive” experience? An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury. Some researchers have recently “found” a new nociceptive fibre (though they persist in calling it a “pain fibre” – once again perpetuating the idea that pain is one and the same with nociception).

One of the conversations is whether pain is a sensation, or an emotion, or something else. When I went to University and studied psychology, sensation was defined as “information transmitted by sensory receptors” – in other words, activity in the sensory receptors prior to perception is classified as sensation. Emotions are also defined in psychology, and depending on the theory being followed might be defined as “a complex reaction pattern, involving experiential, behavioral, and physiological elements.” Perception involves recognising and interpreting sensory information, and invokes the idea of awareness as an essential feature. (This is a good place to begin searching for definition – click)

The term aversive indicates “a physiological or emotional response indicating dislike for a stimulus. It is usually accompanied by withdrawal from or avoidance of the objectionable stimulus.” So pain, unlike most sensory experiences also contains an intrinsic element of distaste and avoidance – even people who pursue painful rituals like body suspension will acknowledge that the experience of being pierced is not pleasant but do it to achieve something else, often a feeling of achievement, accomplishment, meeting a challenge. Doesn’t sound too different from people who enjoy running a marathon, or lifting heavy weights.

The new proposed definition also includes the phrase “caused by, or resembling that caused by actual or potential tissue damage” – because we learn to associate the experience we call pain (or whatever word we use in our first language) with what happens when we graze our skin, get pricked by a needle, or knock our shin. For potential tissue damage, think of those staring contests we used to do as kids: who will blink first? Or consider how long we can sit before we’ll move to relieve the numbness-then-ouch on our buttocks! I prefer the term “associate” than “caused by” because we don’t always perceive pain at the time of tissue damage (think about the bruises we find in the morning after a sports game – but we don’t recall exactly how we got them).

So, for what it’s worth, pain isn’t simply a sensation (the experience is always aversive, and invokes an emotion alongside the sensory characteristics) and it’s not simply an emotionit’s a perception, an interpretation of sensory input via nociceptors in the context of current goals (and consequently, attentional focus), social meaning and values, and past experiences (both personal and vicarious). These latter aspects are really important because it’s not uncommon to fail to perceive “ouch” during an important sports game when the attention is elsewhere, and some beautiful experiments have shown that our perception of a potentially painful experience is influenced by what we’re told about the stimulus (Arntz & Claassens, 2004).

The controversies over a definition of pain matter because after the original definition of pain was agreed upon, it was finally possible for researchers, clinicians and commentators to distinguish between the experience and its sensory apparatus. This is important because it enables a focus beyond what goes on in the tissues, to the person’s experience. Prior to defining pain in this way, if a person claimed to have pain but there was no nociceptive activity, he or she was considered lying or mentally unwell. Traces of this attitude continue to this day, sadly.

Focusing on the person’s experience has allowed treatment to shift beyond “issues in the tissues” to help the person deal with what has happened. Even in the absence of current tissue damage and pain, people can continue to be fearful of potential tissue damage and potential pain. Should anyone question this, I usually point out the extraordinary lifestyle changes made by people who have had angina. These people may not be currently experiencing any chest pain at all – but yet protect themselves from the potential of chest pain because “it might happen again.”

A shift away from addressing sensory stimuli towards helping a person who is experiencing pain involves moving away from a biological-only model of disease. We usually call this a biomedical model where what goes on in the body is considered separately from the person who is the subject of “disease”. Of course, this is a straw man argument because biomedical models have been extending to include the person for at least 30 years. Most medical practitioners would want to address the “why has this person fallen and fractured their neck of femur” alongside “fixing the neck of femur fracture with a plate and pin.” But, it troubles me greatly when I hear people say “but what about the bio?” when it comes to incorporating a broad, multifactorial understanding of people experiencing pain into pain rehabilitation. A multifactorial model (call it biopsychosocial if you will) has never negated the biological contributing factors – but has instead placed those factors into relative importance with psychological and social contributions. And psychological and social factors seem to have more to contribute to our experience of pain and resultant disability than, in particular, what happens to a tendon or disc.

And this leads me to the perennial problem of what do we do if pain doesn’t settle, despite our best efforts. This problem is a real and ongoing challenge for both the person experiencing pain, and his or her health. I think it’s a question many health professionals shy away from. Are we afraid we’ve let the person down? Let ourselves down? Failed somehow? What is it like for the person with pain – constantly wondering if this next treatment will do the trick? Or the next? Or whether they’ve failed? Or is it something sinister? There’s no doubt that pain is aversive and it can invade so much of life – but if so much of our experience of pain is related to how we interpret it, what if we were able to re-interpret this experience as less sinister, less distressing?

Health professionals are powerful attitude shapers. Could we use this influence to help people be a little less afraid of pain, and maybe a little more confident that although pain is inherently aversive, humans are infinitely creative and resourceful and can make peace with pain’s presence?

“‘Specialized cutaneous Schwann cells initiate pain sensation”. Abdo H, Calvo-Enrique L, Martinez Lopez J, Song J, Zhang MD, Usoskin D, El Manira A, Adameyko I, Hjerling-Leffler J, Ernfors P.
Science. doi:10.1126/science.aax6452

Arntz A, Claassens L. The meaning of pain influences its experienced intensity. Pain. 2004;109: 20–25. pmid:15082122

Always look on the bright side of life!


Anyone who is older than, say, 40 years old, should be whistling right now…

For some time now I’ve been interested in how people who cope well with pain go about their daily lives. What makes this group of people different from the ones we more often see? While I know from my own research that there’s a process to get to where living life outweighs putting all the emphasis on finding a cure (note: this doesn’t mean giving up on a cure, it just means it’s a different priority), there is some research showing that how we view a situation (either as a challenge – or not) plays a role in how well we deal with it (Lazarus & Folkman, 1984).

The theory goes something like this: resilience people view pain as a challenge and believe that they have the resources to cope with it, and as a result they experience less disability and distress.

There has been a reasonable interest in resilience in coping with persistent pain since Karoly and Ruehlman (2006) found that a small but reasonable-sized group of people report moderate to severe levels of pain intensity, but don’t report high levels of interference or emotional burden. It’s thought that instead of avoiding movements or activities that are painful, this group of people may feel fear – but go on to “confront” or at least willingly experience pain as part of their recovery. What hasn’t been as well-understood is whether resilience is associated with perceiving pain as a challenge, and therefore people are more likely to do things that may hurt, or whether people believe they can face the demands of experiencing pain (ie they have self efficacy for managing pain) and this is the path by which they get on with life.

This study was carried out in mainland China, and is for this reason alone, is an interesting study (most of our understanding about pain comes from the US, Canada, Australia and the UK). China also faces an enormous burden from people being disabled by chronic pain, so this is a good step forward to understanding what might support living well with pain in this highly populated country.

The study is by Shuanghong Chen and Todd Jackson, and published last year in the journal Rehabilitation Psychology. The authors recruited 307 Chinese adults with chronic back pain (189 women, 118 men), and asked them to complete a batch of questionnaires: Connor-Davidson Resilience Scale (Chinese); Pain Appraisal Inventory (Short-form) Challenge; Pain Self-Efficacy Questionnaire; The catastrophising subscale of the Coping Strategies Questionnaire, the Chronic Pain Grade; The Multidimensional Pain Inventory-Screening (Affective Distress) subscale; and the Center for Epidemiologic Studies Depression Scale. Participants were recruited from large residential settings close to the university and two local hospitals, and participants needed to be at least 18 years old with back pain of at least 3 months duration. All the questionnaires were translated into Mandarin using back-translation. This was a cross-sectional design, so all the measures were taken at one time, and analysis performed across the group. It’s not possible, therefore, to determine causal relations, and all the calculations were carried out using structural equation modeling, therefore correlational relationships only.

What did they find out?

High resilience levels were related to elevations in primary appraisals of pain as a challenge, and in turn, higher resilience and challenge appraisal scores were each related to higher scores on the secondary appraisal measure of pain self-efficacy beliefs. Those with high scores on resilience and pain self-efficacy tended to score lower on the secondary appraisal measure of pain catastrophising. When analysing the path it was found that challenge appraisals didn’t reach significance with catastrophising or pain-related disability (such as scores on Chronic Pain Grade, Affective Distress, or Depression). Higher scores on resilience and pain self-efficacy as well as reductions in pain catastrophising were associated with lower overall dysfunction scores (Chronic Pain Grade, Affective Distress, and Depression).

Interestingly, the authors tested to see whether pain self-efficacy and pain catastrophising had a bidirectional relationship with one another – they found that yes, this did have a good fit with the data but the resilience-catastrophising path was strong than the path in the original model, while the bidirectional self-efficacy-catastrophising path was slightly less strongly associated compare with the other model.

What does all this mean for us?

Well it seems that while we attend to negative features of a person’s presentation, from this study it looks like the relationship between positive aspects (such as not thinking of pain as an incredibly negative thing (catastrophising) and believing that yes I do have resources sufficient to cope with pain) is more predictive of outcomes than simply looking at catastrophising alone. However – pain self-efficacy and pain catastrophising and poorer coping have been found significant, while general resilience (appraising pain itself as a challenge, or not) and appraising pain itself as a challenge is less strongly associated. What this suggests is that increasing a person’s beliefs that they have the capability to cope (ie self-efficacy) despite pain needs to be a priority in pain rehabilitation.

To me this is an important finding. When we as therapists attribute change in function to either less pain, or to our efforts (or the treatments, eg injections, pills, special exercises, super-duper techniques that we use), we fail to foster or support self-efficacy. Self-efficacy is a slippery concept: the measure indicates confidence to engage in activities despite pain. If our treatments focus on reducing pain intensity and don’t support the person being able to do things despite their pain, we’re likely not helping them become more confident, especially in the future.

This doesn’t mean we should tell people to “suck it up, Buttercup”. It does mean we should help people identify the strategies they have (or can develop) to be able to continue with activity in the face of pain fluctuations. Of course this means we need to be comfortable with the idea that it’s OK to do things despite pain! If we still hold a sneaky suspicion that it’s not OK to be sore and do things, we’re likely to inadvertently (or perhaps overtly) encourage people to ease up, back off, or generally stop when they’re sore. Asking people how sore they are at each treatment is likely not to increase confidence that it’s OK to move. Commiserating over how painful it is and how tough it is may be unhelpful!

What can we do instead?

I think we can draw a lot from motivational interviewing. No, not the stages of change, but the part where we acknowledge that despite it being difficult, the person did something that moved them towards a more positive choice. What this might look like is “Hey you had a tough week, but it’s fantastic that you made it here today so we can look at what you carried on with”. It might include “While it’s been a flare-up week for you, you were still aware of your goals and had a go”. Or “Look at how you stayed the course despite the bumps in the road”.

Sticking with the idea that actions, or habits count more than results can be useful, because we’re helping people build long-term lifestyle changes that will sustain them over time. Yes, results are really cool and we want to see them (so don’t stop recording wins!), but at the same time, it’s vital we celebrate the daily choices a person makes to keep going and doing.

I think we can also help build self-efficacy by drawing on pain heroes. People who have maintained a good lifestyle despite their pain. Celebrating those who are grinding through, even though they have tough times. Perhaps other people in the clinic who are also managing pain. From self-efficacy research we know that vicarious learning (watching how others perform in the same situation) is one of the ways we boost our confidence to succeed. Group-work may be a useful approach for encouraging people to know they’re not alone, they can make progress, and that they’re doing OK.

So…. looking on the bright side of life doesn’t mean ignoring challenges, but it does mean viewing them as challenges rather than insurmountable obstacles. Our approach to pain – is it something to get rid of, or is it something to learn from and something we can manage – may give people encouragement to persist, or it may undermine coping. What’s your view?


Chen, S., & Jackson, T. (2018). Pain Beliefs Mediate Relations Between General Resilience and Dysfunction From Chronic Back Pain. Rehabilitation Psychology, 63(4), 604–611.

Karoly, P., & Ruehlman, L. S. (2006). Psychological “resilience” and its correlates in chronic pain: Findings from a national community sample. Pain, 123, 90–97. http://dx.doi.org/10.1016/j.pain.2006.02.014

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.

Why reducing pain intensity doesn’t always mean a better outcome


There have recently been some studies published on meta-analyses of “pain education”. I’ve made my stance clear on what I think of “pain education” particularly as a stand-alone intervention here and here and why I think we need to look beyond pain intensity reduction as The Outcome of Choice. In this brief post I want to look at some of the variables that influence both pain behaviour and pain intensity.

We all know that pain is subjective: this means it can’t be directly shared with anyone, and no-one is able to determine just how sore any other person is (that includes people who believe they can spot faking or malingering. Stop it! You can’t, not for pain). What this also means, though, is that for us as clinicians to understand what it is like for another person to be experiencing pain, we must infer on the basis of what they do (ie behaviours).

Mostly with adults, we infer the severity of pain on the basis of the dreaded visual analogue scale or the numeric rating scale – “what is your pain on a 0 – 10 scale where 0 = no pain at all and 10 = most extreme pain you can imagine.” In people who either don’t speak our language, or who can’t respond with words, we rely on inferences drawn from their “body language” or nonverbal behaviour.

Many pain behaviours begin as useful evolutionary responses to threat: physiological arousal, reflex withdrawal, verbal groans and gasps. These serve to help us withdraw from the stimulus, help us escape the threat (or freeze or fight it), and signals that we need help (and avoid this threat) because we’re social animals. At the same time, behaviours are subject to behavioural reinforcement as well as cognitive biases, memories and so on. An example: If someone goes to the Emergency Department and reports their pain is 3/10, they’re unlikely to receive heavy-duty analgesia. You can bet that if they attend ED on another occasion, they’ll remember this and report their pain to be a little higher. Now often this isn’t a conscious decision, it’s something we learn over time and throughout our lives, so we may be oblivious to how we alter our verbal and nonverbal behaviour as a response to events in the environment and our own interpretations of what’s going on.

Pain is also rarely a static, consistent experience. Pain typically varies over the course of time. It can be episodic and pulsing and rhythmic, or it may come in waves, it might fluctuate unpredictably: in part this variability is a product of the stimulus, but also physiological processes such as habituation, attentional demands can mean we’re more or less “tuned in” to being aware of pain, and our emotional state is also part of the picture.

Finally (or not, depending on my whim!), our response to pain depends on our interpretation of its meaning and significance. When we’re tired and feeling down, and the pain seems mysterious and very threatening because we have things to do and no-one can tell us what the diagnosis is we’re more likely to increase our awareness and our behaviour associated with that experience. Maybe we’ll report it as 9/10 because it seems to intrude on life, the universe and our very existence as we know it. Maybe we’ll be really afraid and don’t think we can cope with it even though we usually do, so we’ll report it as 12/10. Maybe we’re not experiencing pain right now but we think that if we do something wrong we’ll get the pain back (think of angina here), so we just don’t do things “in case”. And maybe we’ve been told not to do things because it might be harmful, so we don’t do those things, our pain is around its usual level but we feel constrained and report it as 7/10 because we’re fed up with it all.

We know that part of the challenge of pain is that it’s incompletely understood (I use the word “it” as a placeholder for the rather more wordy “our experience of pain”). We do have pretty good means of reducing pain, but the problem is that these leave us incapable of doing very much because the most effective approach is simply to lose consciousness. But life doesn’t permit us to do that for long without adverse consequences! And for many people, even the best analgesia is only likely to reduce pain by about 30%, if at all.

When someone has learned to reinterpret their pain as not terribly threatening, still annoying and frustrating and demoralising, but not indicating that the body/self is about to come to serious harm, it’s possible to look well but feel awful inside. In other words, the pain intensity and quality doesn’t change an awful lot, but because it’s no longer associated with existential threat to self, it’s possible to put on makeup, groom well, interact happily, and look “normal”. How do I know this? Well – that’s what I do every day.

So using pain intensity as a guide to how well a person has recovered or adjusted to their pain is not an especially reliable guide as to how much pain is bothering them. The relationship between pain intensity and what we can and cannot do is uncertain and complex. And behaviour change is not easy. Doing things differently involves a whole cascade of changes that need to be implemented, not the least of which is learning how to regulate physiological arousal, reconceptualising the pain experience as something that can be lived with, redirecting attention towards things that matter to us, developing motor control and strength when this has changed – but possibly the most complex and ignored involves responding to, or altering our response to other people’s behaviours.

This means navigating other’s expectations from us (some people are afraid that when a person begins doing things again they’re going to make their pain worse and fail, others are expecting return to “normal” without factoring in that pain IS a significant challenge to deal with), and their behavioural responses to what we do. Many of the people I work with who live with pain talk about losing friendships, not being able to keep up with others, being misunderstood, being ignored or punished with angry reactions because they’re not the same person they were before their encounter with weird prolonged pain. And these are only the responses at an individual and small group level! What about the perverse disincentives to return to usual activities, like losing compensation prematurely, or having to return to a job that is not the job you left and you feel unprepared for or overskilled and unappreciated? Legislation that is written for “normal” recovery from illness or injury but doesn’t include persistent pain. Processes that mean you have to prove disability repeatedly just to retain access to services or income.

So, even if clinicians find that their treatment reduces pain, it may not lead to the outcomes clinicians want to see: a happy, active and engaged person. Sometimes it can lead to ongoing life restrictions (think angina again). Sometimes it can lead to erratic activity patterns. Sometimes those other factors influence how the person goes about life and not in a good way.

Echoing something written repeatedly over the decades in pain research literature, I want to quote from Ballantyne and Sullivan (2015). This article challenges clinicians to rethink pain reduction as the primary outcome measure for persistent pain in the face of increasing opioid use (now reducing but often without subtlety or support) because of the very issues I’ve outlined above. They state the following:

Suffering may be related as much to the meaning of pain as to its intensity. Persistent helplessness and hopelessness may be the root causes of suffering for patients with chronic pain yet be reflected in a report of high pain intensity.

And conclude their article with this:

When pain is chronic, its intensity isn’t a simple measure of something that can be easily fixed. Multiple measures of the complex causes and consequences of pain are needed to elucidate a person’s pain and inform multimodal treatment. But no quantitative summary of these measures will adequately capture the burden or the meaning of chronic pain for a particular patient. For this purpose, nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient’s experiences and offer empathy, encouragement, mentorship, and hope.

Emphasis is entirely mine. And heartfelt.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of chronic pain—the wrong metric? New England Journal of Medicine, 373(22), 2098-2099.

Reconciling uncertainty and the drive to diagnose


Recently it was suggested to me that even though I’m an occupational therapist, I might “diagnose”. Not so much diagnose disease, but “determine if a patient is depressed, anxious, catastrophising, fear avoidant etc?” The author goes on to say “isn’t that diagnosis too?” The comment was made in the context of a lengthy Twitter discussion about so-called “non-specific” low back pain. Over the course of I think about five weeks now, a large number of highly educated, erudite and passionate clinicians have argued the toss about whether it’s possible to identify the “cause” of nonspecific low back pain. On the odd occasion I’ve put my oar in to mention psychosocial aspects and that people seek help for many reasons, one of which may be pain intensity, but mostly people ask for help because either the pain is interfering with being able to do things, or because the person interprets their pain as an indication, perhaps, of something nasty.

I mention this context, because over the many tweets, I was struck by the degree of certainty demanded by various commentators on both sides of the discussion. “Where’s the gold standard?”; “What’s the evidence”; “Yes”; “No” – and in many respects, diagnosis is a practice based on degrees of certainty. You either have a disease – or you don’t. You have the signs and symptoms – or you don’t. Unless, of course, it’s the creeping edge of “pre-diagnosis” like my “pre-diabetes”.

In October I wrote about clinical enquiry, which is described by Engebretsen and colleagues (2015) as a complicated process (sure is!) of 4 overlapping, intertwined phases: (a) data collection – of self reported sensations, observations, otherwise known as “something is wrong and needs explaining”; (b) data interpreting “what might this mean?” by synthesising the data and working to recognise possible answers, or understanding; (c) weighing up alternative interpretations by judging; and (d) deciding what to do next, “what is the right thing to do”, or deliberation.

For, irrespective of our certainty about the precision of any particular test or ultimately a diagnosis, all of our work involves two people who must collaborate to follow the process outlined by Engebretsen and colleagues. That is, the person seeking help notices “something is wrong and needs explaining”, he or she communicates selected information to a knowledgeable person (a clinician) and that clinician will typically seek more information, and assemble this in some way (synthesise). In my case I like to do this assemblage in collaboration with the person so we can weigh up or judge various interpretations of that data. I bring some knowledge from my training and ongoing learning, while the person brings his or her intimate knowledge of what it is like to be experiencing that “something is wrong.” There are times when we are both in the dark and we need to collect some more information: for while the person knows what it is like to be in this predicament, there are likely factors not yet incorporated (or noticed) into the picture. For example, guided discovery or Socratic questioning usually involves exploring something the person is aware of but hadn’t considered relevant, or hadn’t joined the dots. I don’t think it takes rocket science to see just how messy and complex this communication and information synthesising process can be – it only takes a person to fail to provide a piece of information (because they don’t think it’s relevant) for the analysis to go awry.

I like the depiction of the diagnostic process described in Britannica.com because throughout the process, the diagnosis is held lightly. It’s provisional. The process of diagnosing is seen as a series of hypotheses that are tested as the treatment progresses. In other words, despite beginning treatment, clinicians are constantly testing the adequacy and accuracy of their clinical reasoning, being ready to change tack should the outcome not quite stack up.

As a clinician and commentator who focuses on the relationship between people with pain and the clinicians they see, it strikes me yet again that the process of diagnosis is often one of relative uncertainty. While it’s pretty easy to determine that a bone is fractured, when pain is the presenting problem and because imaging cannot show pain (and when there are few other clear-cut signs), the clinical reasoning process is far more uncertain.

As I would expect, I’m not the first person to ponder the certainty and uncertainty dilemma in diagnosis. Some of my favourite authors, Kersti Malterud and colleagues (and especially Anne-Marie Jutel!) wrote an editorial for the British Journal of General Practice in which they argue that uncertainty, far from being “the new Achilles heel of general practice (Jones, 2016), instead is absolutely typical of the complexity involved in general practice diagnostic work. They go on to say “The nature of clinical knowledge rests on interpretation and judgment of bits and pieces of information which will always be partial and situated. In this commentary, we argue that the quality of diagnosis in general practice is compromised by believing that uncertainty can, and should, be eliminated.” (p. 244).

In their editorial, Malterud and colleagues point out that the person’s story is essential for diagnosis – and that people have all sorts of reasons for not disclosing everything a clinician might want to know. One of those reasons may well be the clinician’s capability for demonstrating willingness to listen. They also argue that models of disease are social and therefore dynamic (ie what we consider to be disease shifts – pre-diabetes is a good example). People who don’t fit the received model of “what a symptom should be” may not be heard (think of women with heart disease may not present in the same way as men), while those with “medically unexplained” problems just do not fit a disease model.

They make the point that clinicians need to recognise that clinical testing “does not eliminate uncertainty, rather the opposite as it introduces false positive and negative results.” For my money, diagnostic testing should only be used if, as a result of that diagnosis, clinical management will change – and just to add another dollop of my opinion, I’d rather avoid testing if not only does clinical management not change, but outcomes are no different!

I think the call for certainty emerges from what Malterud and co describe as “The rationalist tradition” which “seeks to provide a world of apparent security where certainty is readily achievable.” The problems of both low back pain and many types of mental illness demonstrate very clearly that knowledge allowing us to be certain only covers a tiny amount of the territory of ill health. There is more unknown and uncertain than certain.

I’ll end with this quote from Malterud and co’s paper “Clinical practice must therefore develop and rely on epistemological rules beyond prediction and accuracy, acknowledging uncertainty as an important feature of knowledge and decision making. Nowotny (2016) suggests the notion ‘cunning of uncertainty’ as a strategy where we get to know uncertainty and acquire the skills to live with it.” In occupational therapy practice, uncertainty is always present in our problem-solving process – and consequently I don’t “diagnose”. I never know the effect of a tendency to “think the worst” or “worry” or “avoid because I’m scared” – the constructs it was suggested that I “diagnose”. Firstly because while I might recognise a pattern or tendency – I don’t know when, where, how or why the person may do that thing. And context, purpose, motivation and response all matter when it comes to people and what they do. And secondly, diagnosing suggests that we have a clear and specific approach to treat – and in most of my clinical work, certainty around outcome is definitely not a thing. We never really know if our suggestions are “right” because most of the impact of what we suggest is on the person within his or her own life. In my practice the outcomes ultimately determine how well I’ve worked with someone. Perhaps NSLBP is another of these human predicaments where being certain is less advantageous than embracing uncertainty and an unfolding narrative in someone’s life.



Engebretsen, E., Vøllestad, N. K., Wahl, A. K., Robinson, H. S., & Heggen, K. (2015). Unpacking the process of interpretation in evidence‐based decision making. Journal of Evaluation in Clinical Practice, 21(3), 529-531.

Malterud, K., Guassora, A. D., Reventlow, S., & Jutel, A. (2017). Embracing uncertainty to advance diagnosis in general practice. British Journal of General Practice, 67(659), 244-245. doi:10.3399/bjgp17X690941

Nowotny H. The cunning of uncertainty. Cambridge: Polity Press, 2016

Why do clinicians fear telling people their pain may persist?


There is a big void in our understanding of interactions between clinicians and people who live with persistent pain, and that vacuum is about how people learn that their pain is not going anywhere soon. Recently I searched for qualitative research examining the conversations between clinicians and patients at the moment of diagnosis: that moment when a clinician says “I’m sorry, but you’ve tried all there is to try, and it looks like your pain might not respond”. Or it might be “We’ve found out what your problem is, but we know that right now, there aren’t any very effective treatments”.

Oddly enough – or perhaps not – this is incredibly difficult to find. I wasn’t able to locate any specific studies (though if someone else has found some I’d be very happy to get a list!). The closest I found was a synthesis of qualitative studies by Toye, Seers and Barker (2017) looking at the experiences of healthcare professionals while treating people with persistent pain. In it, the authors identify six themes that seemed apparent after synthesising the included studies:

  • Skepticism in medicine where a person is ill – but diagnosis is difficult. The authors point to the strong culture within medicine in which subjectivity is valued less (they say “shunned”) than objectivity. But of course, pain is always subjective.
  • Clinicians have to “do the work” of reconciling the person they see in front of them and the absence of objective clinical findings – this is difficult when a biomedical model is preferred over a biopsychosocial model. (I could add here that unless that biopsychosocial model is truly integrated as a whole, it could turn into a dichotomous not “bio” then “psychosocial” but that’s another discussion)…
  • Clinicians also have to work in a space where either their clinical knowledge is not relevant, or it’s actively unhelpful, meanwhile trying to help a person who wants and needs certainty and support.
  • Clinicians also have a dual duty: responding to the person who is distressed while also remaining aware that some of what the person wants may not be helpful or good – with some of the concerns being also about the healthcare system, and using investigations that are unnecessary and wasteful.
  • As a result of these multiple demands on clinical balance, clinicians may bear a personal cost in terms of emotional energy, empathy and perhaps as a result find it difficult to want to engage with people for whom they feel the “work” will be hard and unrewarding.
  • Ultimately, clinicians working in this field develop a “craft of pain management” which they believe defies algorithms and categorisations, and instead is an ongoing interplay of call and response.

I can completely understand these challenges. If clinicians “measures of success” are resolution or a problem, or at least effective management of a problem, the difficulty in most instances of persistent neuropathic or nociplastic pain is the limited number of medications, and their relatively poor effectiveness. And other approaches (exercise, coping strategies etc) are equally limited. So – we might need to establish a different measure of success, and that’s hard.

In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people with persistent pain on a social media group to give me their account of how they were given the news about persistent pain. The themes that emerged were:

  • No-one told me my pain would persist.
  • Despite surrounding myself with a broad multidisciplinary team, no-one broached the subject.
  • Pointing to the presence of supposed pathology – “you’ll need surgery”
  • “what we’re doing isn’t helping” – despite best efforts.
  • Being put into a category of people who can’t be helped.
  • No-one showed me how to live with this pain
  • Being told casually as if it were no big deal – this shouldn’t have a big impact on you.
  • I was told there’s no cure, no effective treatment and the idea is to make life tolerable but I will probably never be pain free.
  • The diagnosis of a disease was given – but I wasn’t told it was the reason I hurt.
  • You have chronic pain and there’s not likely to be a cure in your lifetime.

In my interactions with people online, both people with pain and those hoping to treat, I’ve heard a number of opinions: we should never “give up” on pain reduction; we don’t want to “kill hope”; there’s always something we can do …

Here are a few questions:

  • When do we admit we don’t have a 100% success rate for treating persistent pain?
  • Given that people with pain often put their lives on hold until there is a diagnosis and treatment plan (usually aimed at pain reduction and/or cure) – how long does someone need to put their life on hold until we acknowledge that the cost of waiting outweighs the uncertain benefits of pain reduction?
  • Is this a decision we as clinicians should make? If it’s a collaborative decision, do we provide people living with pain an unbiased and neutral view of their options?
  • Fundamentally, do we fear living with pain ourselves, and does this in part fuel our desire to keep treating?
  • What do you think it’s like for a person living with pain to never be told that this is reality? Because people will blame themselves (for not trying hard enough), blame their health professionals (for not looking hard enough), blame the system (for not funding enough) – when actually there is no secret stash of treatments for people who are “good enough” to get them.
  • If someone is told “chances are high this won’t resolve quickly, if at all” does this mean nothing will ever change? Or simply that we’re giving permission to ourselves and the person to find ways to have a meaningful life with pain? What if we conveyed the reality that currently there may not be a way to reduce pain, but this doesn’t mean it will be forever – and in the meantime we can work together to create a life that is fulfilling?

I guess the sad thing for me is that even though we’ve had persistent pain management programmes available in various forms since the 1970’s, with the flush particularly evident in the 1990’s and waning ever since, people are still not given the opportunity to have good support while learning how to live well with pain.

Because until we have at least a 90% success rate with our treatments for persistent pain, I think we need to be humble and admit these approaches are still needed.

Toye, F., Seers, K., & Barker, K. L. (2017). Meta-ethnography to understand healthcare professionals’ experience of treating adults with chronic non-malignant pain. BMJ Open, 7(12), e018411. doi:10.1136/bmjopen-2017-018411