Resilience/Health

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

Ways to avoid “othering”


After my last post on “othering” I thought I should write something about what we know reduces the distancing that othering produces. To refresh your memory, othering is what happens when we identify positive characteristics about ourselves and simultaneously identify the absence of these positives in another person. Othering is a common part of any interaction but it seems to become less helpful as views become more polarised.

Lehti, Fjellman-Wiklund, Stalnacke and colleagues (2016) describe “walking down ‘Via Dolorosa'” as the “way of pain and suffering… from primary healthcare to [a] specialty rehabilitation clinic.” This depiction also captured the way gender and sociocultural context influenced that journey: chronic pain is a ‘low status’ illness (especially compared with high status diseases like cancer, heart disease, orthopaedic problems), while those patients with higher education and similarities to treating clinicians were viewed as “easier to interact with”. This study provides an insight into the norms expected as part of “being a proper patient – ready for change”.

Norms are a part of culture, assumptions about what “is done” in a particular context. Just as health professionals learn to “be professionals”, people seeking help for their health are also expected to behave in certain ways. Othering is, as I’ve indicated above, a normal or common part of interactions – some authors suggest we need an “other” in order to for our self to “know itself and define its boundaries” (Krumer-Nevo, 2012). At the same time, once the “other” is identified in less positive terms than “self”, it’s far easier to distance oneself from the other person.

One step towards reducing the distancing between “us” as health professionals and “them” seeking help is to create moments of “belongingness”. What this means is using overt means to help people feel welcome. In New Zealand, this may mean ensuring signs are written in both Maori and English. For people with pain, it may mean explicitly indicating to people with pain that it’s OK to stand up and move around during an initial assessment.

Another way is to raise the idea of the person living with pain as an expert. “Expert?” I hear you say…Yes, expert in “what it is like to be this person living with this pain in this context”. For us to demonstrate our understanding that the person living with pain is the expert on his or her experience, we need to provide safe and welcoming opportunities for the person to tell us what it is like. Narrative medicine, if you like.

Tonini and Chesi (2018) used Charon and Remen’s definition of narrative medicine “a way of dealing with the disease through narration, aimed at understanding the complexity of the patient that will no longer be seen as a set of objective data but as a unique individual with needs” in a study of the stories given by people living with migraine. The stories were of people with a chaotic narrative where migraine was a mystery, full of disorientation and few solutions, moving through to restitution where knowledge and efffective treatment allowed the person to progress. Other narratives were “stable” leading to improvement in understanding and management, and regression, where people gave up and remained disoriented.

How might this help us reduce our sense of “othering”? In one way, learning to hear what people have to say should be fairly simple for health professionals. We’re trained to listen carefully. But what we’re often focusing on is some sort of diagnosis: “what is going on here, what’s going wrong, what’s the pathology?” Hearing another’s narrative is a different process: this involves empathising with, understanding the journey from feeling unwell to seeking help, beginning to acknowledge the similarities between this person and ourselves. How might we respond to illness if we were faced with the same circumstances? the same prior history? the same choices?

Lajos Brons, philosopher (Brons, 2015), argues that charity, or the “reasonableness argument” could help us to deal with othering. Reasonableness is an assumption that the other person has rational, coherent, and true reasons for doing and saying what they do – even if, at first, we may not discern the underlying reasons. By invoking a charitable interpretation on another’s actions, we are in turn asked to question our own preconceptions, our assumptions about the reasons the person did what they did.

Imagine that kind of humanity being brought into our judgements of people who are apparently “lacking motivation”, or “seeking secondary gain”, or “noncompliant”?



Brons, Lajos. (2015). Othering: An analysis. Transcience, 6(1), p. 69 – 90

Krumer-Nevo, M. (2012). Researching against othering. Qualitative inquiry and the politics of advocacy, 7.

Lehti, A., Fjellman-Wiklund, A., Stalnacke, B.-M., Hammarstrom, A., & Wiklund, M. (2017). Walking down ‘Via Dolorosa’ from primary health care to the specialty pain clinic-Patient and professional perceptions of inequity in rehabilitation of chronic pain. Scandinavian Journal of Caring Sciences, 31(1), 45-53.

Tonini, M. C., & Chesi, P. (2018). Narrative medicine, an innovative approach to migraine management. Neurological Sciences, 39(Suppl 1), S137-S138.

Othering


When we look at someone else, we first start by identifying the differences between that person and ourselves. It’s only later that we spend some time identifying the similarities between ourselves and that “other”.

There’s a problem in pain management today. It’s this: too few of “us” are “them” – by which I mean, there are too few people who identify as living with persistent pain working with people who are seeking help for their pain.

“Why is this a problem?” you ask… Well, it’s because it’s far too easy for “us” healthcare providers to forget that persistent pain affects people just like us. Yes, I know the stats: lots of people with persistent pain are multiply disadvantaged by socio-economic status, gender, ethnicity, age, multiple morbidities. But – and this is important – persistent pain doesn’t discriminate, but disability and distress might.

Othering was first brought to attention by Simone de Bouvier. de Bouvier was interested in the way women’s voices were hidden and often compared with men’s voices. “Why”, said men. “Are women not like us?” The answer was evident: women are not men. And in establishing that women are “other”, or “not men”, those dominant voices were able to not only elevate their own voices to prominence, but also minimise and trivialise the words of women.

There are, according to Lajos Brons, two main forms of “othering” – crude, where the assumed differences are stated; and sophisticated, where the assumed differences are stated – and seem reasonable. Let me give an example. It seems reasonable that people seeking help for their pain are needing something they don’t have. And the people they seek help from (healthcare professionals) have that something. Sensible, yes?

“What’s the problem?” you ask. Well, it’s because alongside noticing the difference between the person seeking help and “us” who might have some answers, we also begin to distance ourselves from “them”. And in doing so, we begin to dehumanise or consider that person to be different and somewhat less than us.

I don’t want to accuse readers of stigmatising people who live with pain, so let’s take a moment to unpack what I’m trying to say.

When we talk about someone who is experiencing pain and having trouble with it, we begin by trying to work out what’s going on. In the very best circumstances, we create a “third space” where we can meet one another on an equal footing – both focusing on “what’s going on here”, and neither one assuming a superior position, because while “we” the healthcare professional, might have lots of knowledge about the various factors that could be contributing to this person’s situation, “we” actually know absolutely nothing of this person’s reality, their experience. Meanwhile, the person seeking our help is the expert on what life is like with their pain, their worries, their strengths, their supports, their vulnerabilities. So we meet in the middle, and collaborate, to try to work out how we can develop something new.

Sadly, that space can be muddied by a whole lot of things. We might bring our assumptions about the “other” – that they’re afraid, they need information, they want whatever solution we provide. The person might bring their fear of being misunderstood, their memories of the last time someone “tried” to help, perhaps their idea of what we want to know. We may end up talking past one another.

Let’s see what we can assume about the person in front of us. We might think they just need to know their pain is “an output of the brain” and that “hurt doesn’t equal harm”. We might spend some time educating that person about neurobiology. We might think they need exercise. They need to lose weight. They need do more mindfulness. They need to go back to work. And so our plans for “them” are set in motion. None of these things are bad or wrong – except when we think of the person needing these things before we’ve taken the time to hear what they really want.

What does the person want? Probably like many people, they’d like someone to listen to their perspective. Then they’d like to have some daily practical problems solved: perhaps knowing that they’re not harming themselves. Then maybe some sleep management. And perhaps some time out from people telling them what to do. And maybe some explanations – but only once we’ve taken the time to listen.

“Othering” is one way health professionals maintain a professional distance. By knowing that “we” already do these things, we can feel good about what we offer “them”. But I’d like to ask: how many of us have daily, weekly, monthly goals? How many of us have set them with the SMART acronym? And how many of us have our days timetabled to make sure we do all the things expected of us? What if we have an off day? Is it OK or do we have to explain ourselves? And how many of us also live with persistent pain? I think more of us live with pain than we’re honest about…

I’ve heard “us” talk about “them” and it’s not pretty. “They” need to be more goal-focused, more persistent, more relaxed, more revved up. “They” are ‘non-copers’ anyway. “They” have always needed help for everyday life. “They” have disorganised, chaotic lives.

I wonder what would happen if “we” spent some time checking in on our assumptions about “them”? Would we find ourselves mirrored in the people we try to help? I think we would – and it might help us to remember that we’re guides, coaches, and cheering squads, but we’re no better, no worse, and just as human as “them”. Oh, and some of “us” might even be one of “them” living with pain every day….

Brons, Lajos. (2015). Othering: An analysis. Transcience, 6(1), p. 69 – 90.

de Beauvoir, S. (1949): Le deuxi`eme sexe, Paris: Gallimard, 1976.

Expectations – and communicating


There are times when I look at the research on persistent pain and treatment, and I begin to wonder why I’m still so positive about this field! After all, it seems that although a biopsychosocial or multidimensional framework for pain has been around since the 1970’s, I’m still encountering reasonably recently-graduated clinicians who sincerely believe that whatever treatment they’ve learned is the Bee’s Knees, and Will Truly Fix All Pain. And people who firmly believe that All Pain Is X. Or Y. Or Z. And surely we should do what they say (pay the fee, get the certificate, perhaps even levels 3, 4 and 5!) and the people we see will get completely cured.

Maybe I’m just being a Grinch because it’s coming into Christmas.

Perhaps, too, we’ve all forgotten that treatments for persistent pain don’t happen in a vacuum. The people we work with have first had to recognise that their problem is something they think should be treated. Then they’ve chosen to see someone – and maybe chosen to see us, or been referred to us by someone else. These two steps in treatment response alone make an incredible difference to outcomes.

Imagine if I’m someone who thinks my lumbago is normal, something everyone gets, and don’t see it as something unusual. I might choose not to seek treatment until I’m about to embark on a long trip. I choose to see an osteopath because I think they’re more gentle than a physio (who will only give me exercises), or a chiropractor (who will hurt me!), and I don’t like needles so I avoid acupuncture. I don’t think my problem is serious enough to go see a medical practitioner and besides I think my GP will just send me to the physio.

Now imagine instead that I’m a young woman who loves to dance. I’ve had little niggles in my back before, but last night I got on the dance floor and partied like it’s 1999 (oh, that’s right, we’ve been there, done that!). Anyway I partied the night away until I slipped on some beer on the floor, landed on my butt and now my back is really bothering me. I head to my GP feeling pretty hung over and like I cannot walk because my back is SO sore.

Two reasonably common stories.

Now let’s take a look at a study looking at expectations from people seeking help for chronic pain (persistent pain). Wiering, de Boer, Krol , Wieberneit-Tolman and Delnoij (2018) examined the results of data collected from people with persistent pain. Over 2000 people took part in this study, mainly between the ages of 55 – 64. Most were women, most had been living with pain for a long time (on average 14.9 years). Most (50.7%) obtained treatment intended to reduce or stabilise (27%) their pain, and for many people the pain did stabilise (26%), or reduced to a degree (29.4% + 34% to a lesser degree). BUT, and here’s the thing: 41.8% expected a better result, while 33.3% got a better result than they thought they would.


The killer point is that although nearly 70% of people achieved or did better than they expected, and nearly 40% of patients didn’t expect very much, 30% of people were unsatisfied.

Curiously, there was little relationship between how the clinician communicated and the accuracy of the person’s expectations. It didn’t matter whether the clinicians used shared decision-making, patients felt their outcomes should be better than they were.

BUT importantly, attentive listening, having time available for the person, whether the patient trusted the clinician, and whether the patient thought the clinician had done all he or she could were important predictors of satisfaction.

What points do the authors make about communication and expectations? Well, one is that although communication is important only certain aspects of communication really rated with patients: clinicians thought “instrumental” communication was important. This is things like seeking information, asking questions of the person, asking for consent. Instead what actually helped was “affective” communication: responding to the person’s emotional subtext. Things like taking time to listen, building trust, giving people the idea that the clinician is doing all that he or she can.


There’s a caveat though, and I’ll quote directly “Low scores on the important communication aspects were related to expectations that were too high, while high scores were related to too low expectations. Apparently the perfect level of communication is somewhere in the middle. The relationship between low patient expectations and good affective communication may be a sign that it worries patients if health care providers show too much empathy and therefore come across as concerned.” (p. 6)

What can we do with this information? Well I think we can begin by recognising that helping people establish what’s important to them – what is the outcome they most value – is something often not tabled by us. We think we’re communicating clearly, but maybe not. We should also personalise treatments – help people realise that we’re not just delivering some sort of template or algorithm, but that we’re concerned about their unique needs, wants and lifestyles. We should also be warned that people seeking help from us have very high hopes that we’ll be able to achieve a lot. And of course, if we read the research, we should recognise that in general we don’t have a great track record in persistent pain. Let’s not over-promise!

I think using personalised outcome measures like the Patient Specific Functional Scale or the Canadian Occupational Performance Measure, or Goal Attainment Scaling could help us be more focused on what people want from their treatment. While pain reduction is the ideal – it’s not the only outcome! What point is there to have no pain if you’re still afraid to do things you want to do?

Wiering, B., de Boer, D., Krol, M., Wieberneit-Tolman, H., & Delnoij, D. (2018). Entertaining accurate treatment expectations while suffering from chronic pain: an exploration of treatment expectations and the relationship with patient- provider communication. BMC Health Serv Res, 18(1), 706. doi:10.1186/s12913-018-3497-8

What it means to be a therapist


I wrote the following response to a discussion held recently on a Facebook group Exploring Pain Science – about the term “catastrophising”. It’s a term that elicits great anger and frustration from people living with persistent pain, and I see the term used poorly by clinicians as a judgement about another’s experience. There’s certainly plenty of research showing relationships between high levels of “thinking the worst” about pain, and poorer outcomes – but HOW we as clinicians respond to someone in distress may be more of a problem than the act of a person describing their fears and worries about the future. This is what I wrote:

I’ve been pondering – I think I see people as doing the absolute best they can to make the best decisions they can based on what they know at the time. And “knowing” means all the messy uncertainty, lack of logic, emotion and coercion from others! So whatever a person is doing to manage is the best they can do. All I can do is offer some options that I’ve seen other people use, maybe provide some more information, maybe even more accurate information, support people to be guided by what they see as important (usually values), and be there for them as they make their own minds up about what to do next. I’m a cheerleader, encyclopaedia, visualiser (lay out the options in a way that makes sense), perhaps a guide but only in so far as helping people notice things they hadn’t before.

To me, if someone is thinking the worst, it could be that they don’t have all the information about their resilience that they need, it might be misinformation about what’s happening in their body, it could be conclusions that over-estimate the threat and under-estimate resilience. It might also be difficulty pulling the mind away from sticky thoughts that stop clear thinking, or as one researcher called it “misdirected problem solving” – a way for the mind to remind the person that there’s an unresolved situation. It might also be feelings of helplessness, feeling like there is no point in trying anything new because nothing works anyway, a sense of not having enough energy to keep trying…

Those aren’t necessarily inaccurate thoughts, but they’re certainly not helpful thoughts, especially at 3.00am! So temporarily at least it seems helpful to bear witness to that person’s distress, to make room to be present, not to judge or dismiss but to allow those worst fears to be recognised. Sometimes bringing the worst fears out into the light shows that they can be managed better than expected, sometimes they fade into nothing, and sometimes they allow someone else to be there and support when the person’s run out of puff.

While I can understand how the language of uninvolved clinicians hurts because so often they fail to acknowledge the real distress of the person, I can still recognise that many of the contents of thoughts and beliefs won’t happen, – those scenarios are there wanting recognition, but they may not happen. If they do there will be things to do then – but mostly, when I catastrophise, I use it as energy to recognise how lacking I feel. And that’s not a nice place to be, but it’s simultaneously true (I lack) and untrue (others have what I need).

There’s a process I use for myself called creative catastrophising. I write down my worst fears, get them out on paper, make them visible. Sometimes that’s all I need to do. Other times I begin planning “what if X disaster happened, what would I do” – and when I’m in the right frame of mind, I can figure out a way to get by. I can’t tell anyone else to do that – but it’s a strategy that’s stood me in good stead as I’ve gone through the ups and downs of my life. It’s one way I cope.

Clinicians, if you can bear witness to another’s distress, without wanting to change, fix, judge or DO anything apart from being fully present, you’ll be doing the very best thing you can. The time for doing something “to help” is just around the corner – whatever you do, do NOT tell the person “you’re catastrophising” because this immediately means you’ve moved from being with to judging.