The added stress of chronic pain on life


For a minute, I’d like you to grab an ice-cube. If you don’t have one handy, try this at home or when you’re having your next gin and tonic. Hold onto that ice-cube. Keep holding onto it. Put a cloth underneath if it’s going to melt, but keep holding it. Now do your grocery shopping list. Or balance your accounts. While holding the ice-cube.*

Now add some exercises. Exercises you don’t care for, but feel like you have to do “because they’ll help you get better”.

Keep holding onto the ice-cube. Oh, it’s melted?! Fine – go grab another. Hand too cold to pick on up? Never mind, go find one and just do it. And keep doing the grocery shopping list. And the exercises.

Add in a night of not sleeping. Make that a week of not sleeping.

Add in having a new medication to take every day at night at the same time. The medication makes your mouth dry, constipates you, and you can’t wake up because it makes you feel sluggish.

Keep holding the ice-cube.

Phone your employer to say you’ll be in, but a therapist is going to visit you at work to see what you can do. Hold onto the ice-cube. The employer says OK but when are you coming back to work full time? I need you, or I’ll have to get someone else in.

Grab another ice-cube, keep holding it. Hand getting numb and sore? OK, therapy will help that! Here’s some mindfulness to do. And breathe…. and don’t forget the exercises. And that other appointment with a case manager to sign your rehabilitation plan. And do the groceries while you’re there. Keep holding that ice-cube.

And don’t be like that! Don’t get snippy with the kids, just pull yourself together! Hold onto the ice-cube. Lie awake worrying about work and how you’ll balance the accounts. Forget to take the medications, feel terrible – all sweaty and nauseous. Turn up to the employer with the therapist in tow. Hold on to the ice-cube.

The therapist says you can’t do this, or that, and you need to break your work up into chunks like this, and here’s a gadget that might help. Your employer rolls his eyes at you behind the back of the therapist. Keep holding that ice-cube.

Case manager phones saying she’s very sorry, but the paperwork for your weekly compensation hasn’t been filled out properly, you’ll have to go to the doctor to get another certificate, talk to your employer and have you done your exercises yet? Do you need to see a psychologist? Hold onto the ice-cube.

Your partner, who has been magnificent up until now, loses the plot when he gets home today. Hold onto the ice-cube, don’t let it drop. Feel that pain. Breathe. Do exercises. Take meds. Worry about job. Worry about relationship – partner comes to bed but turns the other way. Realise you missed getting a warrant of fitness for the car, think about putting that on the list for tomorrow.

…and someone said people on compensation for pain are just “non-copers”

Cry.

If you’re a therapist, remember what you ask a person to do is only one thing in a vast, unfamiliar and confusing sea of things to do. All the while holding on to an ice-cube that’s burning into your hand….

*Try this at home so you can experience what it might be like to have pain that’s present, intense, and gets in the way of life. BTW it’s not a treatment for chronic pain!!

Help me solve this puzzle


The IASP definition of pain is:

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

Six key notes and etymology:

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

This definition allows for “pain is always a personal experience” and that “pain and nociception are different phenomena” – supporting the idea that the association between what goes on in the tissues and our individual experience of pain is both complex, and currently unmeasurable.

So therefore, why do we have this line in the IASP diagnostic criteria for complex regional pain syndrome: “The patient has continuing pain which is disproportionate to any inciting event” – but wait, there’s more! Kosek et al, (2021) indicate that clinical criteria for nociplastic pain include “…a history of pain hypersensitivity in the region of pain” and “Evoked pain hypersensitivity phenomena can be elicited clinically in the region of pain.”
I’m puzzled.

Pain that is “disproportionate” suggests there is “proportionate” pain… AND at the same time the definition of pain says pain is “always a personal experience that is influenced to varying degrees by biological, psychological, and social factors.” So if I experience pain in the presence of an inciting event, and report it as “OUCH” on the ouchie scale, who can tell me whether my pain is “proportionate” or “disproportionate”?

The nociplastic criteria are similarly confusing: pain hypersensitivity in the region of pain – really painful pain where I’m already experiencing pain? Or do they mean allodynia or hyperalgesia? Or…poke me where I’m sore already and the examiner can tell whether I’m more sore than I ought to be?

Underlying these diagnostic criteria lives a sneaky little beast I call “assumed normalism.” That despite all the work over the decades, some clinicians and researchers really do believe there is a reasonable relationship between nociceptive stimulation and the degree of ouch I might feel. I’m not sure about this…

I wonder if assumed normalism relies on experimental data where people volunteer to undertake nociception tests. These are things like quantitative sensory testing where individuals report the moment they experience heat, cold, pressure, and vibration (pain threshold), and when they want the experimenter to stop doing that thing NOW (pain tolerance).

Let’s think about that situation for a moment. An experimental set-up or lab. Volunteers who know what they’re going to be asked to do. Who know they can say “STOP” when they want to. Who know that no lasting harm is going to occur (ethics, don’t you know). And who volunteers for these kinds of experiments? Nuzzo (2021) pointed out that females are well-known not to volunteer for experiments where there is “an expectation of painful, unpleasant, or risky procedures” and cites research from as far back as 1976! (Rosnow & Rosenthal, 1976) – and earlier (Howe, 1960).

But more than this, Horowitz (2009) states “…QST is a subjective psychophysical test entirely dependent upon patient motivation, alertness, and concentration. Patients can willingly perform poorly, and even when not doing so, there are large intra- and interindividual variations.”

How have clinical diagnostic criteria included definitions that seem too have slid by scrutiny?

Why does it matter?

As soon as we begin thinking of “normal” “objective” “proportional” or “disproportional” in leaps human judgement. Bias. The opportunity to dismiss a person’s experience – on the basis of what we can observe, or what the person can demonstrate. We can only infer that someone else is experiencing pain on the basis of their behaviour – what a person says, does, in the presence of pain, in a particular context. And bias exists when it comes to interpreting behaviour.

As a person living with pain, should I aim to “look well” and be judged as “not suffering enough for pain to be a problem”, or “look poorly and be judged as “not using coping strategies, wanting attention”…

Because, unless all the qualitative studies I’ve read are really erroneous, bias and stigmatising from clinicians and insurers is a thing. From adolescents (Wakefield, 2021), people tapering opioids (Benintendi et al., 2021), gender (yeah, I mean women, Zhang et al., 2021) – oh the list is long….

So, perhaps we could consider an alternative way to describing these kinds of pains: I personally prefer “severe” but maybe there are other words?

Benintendi, A., Kosakowski, S., Lagisetty, P., Larochelle, M., Bohnert, A. S., & Bazzi, A. R. (2021). “I felt like I had a scarlet letter”: Recurring experiences of structural stigma surrounding opioid tapers among patients with chronic, non-cancer pain. Drug and alcohol dependence, 222, 108664.

Howe, E. S. (1960). Quantitative motivational differences between volunteers and nonvolunteers for a psychological experiment. Journal of Applied Psychology, 44(2), 115–120. https://doi.org/10.1037/ h0045002

Kosek, E., Clauw, D., Nijs, J., Baron, R., Gilron, I., Harris, R. E., Mico, J.-A., Rice, A. S. C., & Sterling, M. (2021). Chronic nociplastic pain affecting the musculoskeletal system: clinical criteria and grading system. Pain, 162(11), 2629-2634. https://doi.org/10.1097/j.pain.0000000000002324

Nuzzo, J. (2021). Volunteer Bias and Female Participation in Exercise and Sports Science Research. Quest, 73(1), 82-101. https://doi.org/10.1080/00336297.2021.1875248

Rosnow, R. L., & Rosenthal, R. (1976). The volunteer subject revisited. Australian Journal of Psychology, 28(2), 97–108. https://doi.org/10.1080/00049537608255268

Wakefield, E. O., Puhl, R. M., Litt, M. D., & Zempsky, W. T. (2021). “If It Ever Really Hurts, I Try Not to Let Them Know:” The Use of Concealment as a Coping Strategy Among Adolescents With Chronic Pain. Frontiers in Psychology, 12, 1840.

Zhang, M., Zhang, Y., Li, Z., Hu, L., & Kong, Y. (2021). Sexism-related stigma affects pain perception. Neural plasticity, 2021.

The demise of practical pain management


Cast your mind back to the last time you decided to create a new habit. It might have been to eat more healthy food, to do daily mindfulness, to go for a walk each day. Something you chose, something you decided when, where and how you did it, something that you thought would be a great addition to your routine.

How did it go? How long did it take to become a habit you didn’t need to deliberately think about? How did you organise the rest of your life to create room for this new habit? What did other people say about you doing this?

While we all know a reasonable amount about motivation for change – importance and confidence being the two major drivers – and as clinicians most of us are in the business of helping people to make changes that we hope will become habitual, have you ever stopped to think about what we ask people with pain to do?

It’s not just “do some exercise”, it’s often “and some mindfulness”, and “you could probably eat more healthily”, and “organise your activities so you can pace them out” – and “take these medications at this and this time”, “attend these appointments”, “think about things differently”… the list continues.

Now, for a moment, cast your mind back to the last few research papers you read, maybe even a textbook of pain management, the most recent course you went on, the latest CPD.

Was there anything at all on how people with pain integrate all of these things into their life?

Lewis et al., (2019) reviewed inpatient pain management programmes over 5 decades. They found 104 studies spanning from 1970’s to 2010’s. Unsurprisingly the content, format and clinicians involved in these programmes has changed – but you might be surprised at some other changes… Lewis and colleagues found that physiotherapy (primarily exercise) remained at similar levels over time, but programmes gradually became less operant conditioning-based (ie behavioural reinforcement with a focus on changing behaviour) to become more cognitive behavioural (working with thoughts and beliefs, often without necessarily including real world behaviour change), with reduced emphasis on reducing medications and less family involvement. While the same numbers of physiotherapists, doctors and psychologists remain, nurses and occupational therapists are decreasingly involved.

What’s the problem with this? Isn’t this what the research tells us is “evidence-based”?

Let’s think for a moment about effect sizes in chronic pain. They’re small across all modalities when we look at outcomes across a group. There are some gaps in our understanding of what, and how, pain management programmes “work”. We know that movement is a good thing – but effect sizes are small. We don’t know how many people maintain their exercise programmes even six months after discharge. We also don’t know how well movements taught in a clinic transfer into daily life contexts, especially where fear and avoidance are being targeted. We don’t know who, if anyone, carries on using mindfulness, cognitive strategies such as thought reframing or reality testing, and we don’t know many people leave a programme thinking they’ve been told their pain is “in their head” (though, to be fair, this is something we’ve had problems with for at least the 30 years I’ve been doing this work!).

So while assessment might be more “holistic” and outcomes more likely to be about quality of life and disability, the minutiae of how people with persistent pain integrate and synthesise what they learn in pain management programmes into their own life contexts is invisible. It’s not even part of many pain management programmes.

We could turn to the qualitative literature for some insights. Mathias et al., (2014) interviewed people two weeks after completing a programme. Munday et al., (2021) selected people toward the end of a three week programme. Farr et al., (2021) talked to people up to 24 months after a programme – but in the context of a peer-led support group (which, by the way, I think are marvellous!), Penney et al., (2019) interviewed veterans to identify outcomes, barriers and facilitators to ongoing pain management – but don’t indicate how long after a programme their participants were interviewed. So we don’t know what pain management strategies “stick” and remain in use, integrated into daily life.

So many questions come up for me! Do pain questionnaires measure what matters to people? Can a 0 – 10 response on an item of the Pain Self Efficacy Questionnaire (Nicholas, 2007) represent how someone draws on, and uses, coping strategies to do what matters? Does a response on the 0 – 10 Pain Disability Index (Tait, Chibnall & Krause, 1990) adequately capture how a person does their daily life? If we help people “do exercise” but they don’t continue with these exercises once they resume their own life – what is the point? Why are family members not included any more? How does this fit with New Zealand’s Te Whare Tapa Whā model of health?

The problem/s?

The health profession that entirely focuses on helping people do what matters in their life (occupational therapists use occupation or daily doing as both therapy and outcome) has had trouble describing our contribution. We don’t, as a profession, fit well into a medical model of health. We focus almost exclusively on the “Function” and “Participation” parts of the ICF – and we focus on daily life contexts. Researching our contribution using RCTs is difficult because we offer unique solutions that help this person and their whanau in their own context, and no-one’s daily life looks the same as another’s. We are about meaning, expressing individuality and self concept through the way we do our lives. This doesn’t lend itself to a clinic-based practice, or a hospital, or a standardised treatment, or treatment algorithms. Our contribution has been eroded over time. Very few pain management programmes incorporate occupational therapy – most are physiotherapy + psychology. This is especially noticeable in NZs ACC community pain management programmes.

Pain management is often based on the assumption that if a person is told what to do, perhaps gets to do it in a clinic with a therapist, this is sufficient. And for some people, especially those who view themselves in the same way as therapists (ie, individual responsibility), and people with the psychological flexibility and internal resources to just do it, they may do quite well. BUT consider the people we know who don’t. People from different cultures, lower socio-economic living, neurodiverse, those with competing values, lack of confidence, lack of personal agency – these are the people who don’t do as well in all of our healthcare, and especially those programmes relying on “self-management”.

Programmes also assume that what is done in a clinic can readily transfer to daily life. Clinics are contained, often purpose-built, usually regulated, and have a therapist handy. People are there for the one purpose. Daily life, on the other hand, is highly variable, holds multiple competing demands, other people question what you’re doing and why, is quite chaotic and messy. And there is no therapist. How does a person decide what to do, when, how, and why?

Remember your challenges with developing one new habit. How you had to stake a claim in your own life to create space for this new activity. How you sometimes forgot. How a change in one part of your life undermined you doing this new thing. How this was only one change. Only one. And what do we ask people with pain to do? And we don’t even bother to find out what is still being done 12 months down the track.

Practical pain management is about helping someone work out how to organise their week so they can add in this new exercise programme that might help, alongside having time and energy to be a good Mum, pick the kids up from school, sort the washing, do the groceries, oh and the car needs a new warrant, and I need a new prescription for my meds.

It’s about working out the best time of day to do some mindfulness – when will it do the most good? when can I fit it in? how do I deal with my partner wanting to get out and start the day while I’m meditating?

It’s about communicating to my boss, my colleagues and my customers that I need to get up and walk around – and maybe say no to some new projects at the moment. Perhaps I need to be more assertive about my own needs. Perhaps I’m worried I’ll lose my job because I need to make these changes….

In the rush to streamline pain management to the bare bones, I wonder if we have forgotten who it is all about. He tangata, he tangata, he tangata – it is people, it is people, it is people. Let’s remember that coping strategies and exercise and all the psychological approaches need to be continued for months, and even years. And this means helping people work out what our suggestions look like in their own life. Let’s not omit the profession that puts people and what their daily life looks like as its reason for being.

Tait, R. C., Chibnall, J. T., & Krause, S. (1990). The pain disability index: psychometric properties. Pain, 40(2), 171-182.

Farr, M., Brant, H., Patel, R., Linton, M. J., Ambler, N., Vyas, S., Wedge, H., Watkins, S., & Horwood, J. (2021, Dec 11). Experiences of Patient-Led Chronic Pain Peer Support Groups After Pain Management Programs: A Qualitative Study. Pain Medicine, 22(12), 2884-2895. https://doi.org/10.1093/pm/pnab189

Lewis, G. N., Bean, D., & Mowat, R. (2019, Sep). How Have Chronic Pain Management Programs Progressed? A Mapping Review. Pain Practice, 19(7), 767-784. https://doi.org/10.1111/papr.12805

Mathias, B., Parry-Jones, B., & Huws, J. C. (2014). Individual experiences of an acceptance-based pain management programme: An interpretative phenomenological analysis. Psychology & Health, 29(3), 279-296. https://doi.org/10.1080/08870446.2013.845667

Nicholas, M. K. (2007, Feb). The pain self-efficacy questionnaire: Taking pain into account. European Journal of Pain, 11(2), 153-163. https://doi.org/http://dx.doi.org/10.1016/j.ejpain.2005.12.008

Penney, L. S., & Haro, E. (2019). Qualitative evaluation of an interdisciplinary chronic pain intervention: outcomes and barriers and facilitators to ongoing pain management. Journal of Pain Research, 12, 865-878. https://doi.org/10.2147/JPR.S185652

The complex world of identifying nociplastic pains


Towards the end of 2017, IASP put forward a new mechanistic classification: nociplastic pain. The definition is: “Pain that arises from altered nociception despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors or evidence for disease or lesion of the somatosensory system causing the pain.

Note: Patients can have a combination of nociceptive and nociplastic pain”.

This was great news! Prior to this, the term “central sensitisation” was used and abused to describe processes involved in ongoing pain that wasn’t inflammatory or neuropathic. Problem with that term is that it’s apparent in nociceptive mechanisms, as well as both inflammatory and neuropathic…. When the way people used the term was more akin to “well, the pain hasn’t settled down, so ‘something weird’ is going on and it must be in the central nervous system so we’ll adopt this term seeing as Clifford Woolf described it in the spinal cord” (Woolf, 1996, 2007).

In other words, any pain that seemed to radiate, hang around, and no respond to treatment was “centrally sensitised”. Perhaps so. Perhaps not. Suffice to say, people got confused because most of the typical central sensitisation from nociceptive/inflammatory processes subsides over time, but these “centrally sensitised” pains did not.

I, for one, am glad there’s a group in which weird pains that don’t appear to involve typical nociceptive, inflammatory or neuropathic mechanisms can be put.

Problem is: how do we know what fits into this group? We can be pretty certain when it comes to neuropathic pain, because the definition is very clear (though not so clear in the clinic) – “Pain caused by a lesion or disease of the somatosensory nervous system.” The notes go on to say that “neuropathic pain is a description, not a diagnosis” and I’d say the same about nociplastic pains (which is why I use the plural…). I also step out to say that I don’t think ALL nociplastic pains will be found to have the same biological mechanisms, especially given how widely variable neuropathic pains are.

Nevertheless, we need some way to decide which pains are in, and which are out of this group.

This table comes from Kosek et al., (2021) and summarises the findings from a consensus process within an expert group. They make the point that acute pain isn’t helpfully included in this group, and instead it should be used for pains that persist for 3 months or longer. They also point out that regional pain is included while discrete pain is typically not because of the central sensitisation processes involved (note: this is the correct use of the term! Confused? CS is a neurophysiological phenomenon, associated with more than nociplastic pain).

Looking at the above criteria, possible nociplastic pain is present if the person has criteria 1, and criteria 4. Probable nociplastic is present if the person has all the above.

There are some notes, of course: regional means the musculoskeletal pain is deep, regional or in several places or even widespread (not localised to one place), and each condition eg frozen shoulder and OA knee needs to be assessed separately. If there is an identifiable nociceptive source (or neuropathic source) then the pain needs to be more widespread than “usual” for that pathology. Finally, because nociplastic pain unlike neuropathic pain, has no definitive test currently, there is no “definite nociplastic” category – but once there is, this will be added.

What does this mean for us as clinicians?

Firstly it ought to stop people being thought as faking, malingering or otherwise not being believed. That should be a given but unsurprisingly because of legal and health systems and our own frustration at not being able to “fix” people, people with pain get that impression more often than they should. It also ought to stop psychopathologising people who have this kind of pain: we can’t distinguish between people with nociplastic pain and the DSM5 “Somatic Disorder” – so let’s just not add another unhelpful mental health label to what is already a stigmatised situation.

Then it ought to stop clinicians using treatments that simply don’t help – such as opioids for fibromyalgia. It might help clinicians pause before prescribing movement therapies at a level that is too intense for the person, because this only revs the nervous system up even more making the whole process unpleasant. Beginning at the level the person can manage and gradually increasing is crucial to success. And it ought to stop clinicians from administering “explanations” or “education” and expecting that alone to reduce pain. Because while cortical processes are part and parcel of every pain there is, it’s in this group of pains that some people think “top down” by thinking yourself out of pain is a thing. FWIW pain reduction is lovely and part of treatment, but shouldn’t ever be the only outcome (Ballantyne, 2015), and many times in this group of pains, may not even be an outcome.

Finally, it should stimulate helpful discussion about what “whole person” approaches to managing these pains looks like. The authors say “patients with nociplastic pain are likely to respond better to centrally than peripherally targeted therapies” and this does not mean talk therapy alone, or exercise alone, or indeed medications such as gabapentin or nortriptyline alone. To me, it means individualised, tailored, and integrated strategies to moving, managing daily life, restoring sleep, enjoying an intimate relationship, managing mood and memory, and these might best be offered by pain coaches rather than siloed “therapies” of physical, psychological or whatever other stripe there is.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of Chronic Pain — The Wrong Metric? New England Journal of Medicine, 373(22), 2098-2099. https://doi.org/10.1056/NEJMp1507136

Kosek, E., Clauw, D., Nijs, J., Baron, R., Gilron, I., Harris, R. E., Mico, J.-A., Rice, A. S. C., & Sterling, M. (2021). Chronic nociplastic pain affecting the musculoskeletal system: clinical criteria and grading system. Pain, 162(11), 2629-2634. https://doi.org/10.1097/j.pain.0000000000002324

Woolf, C. J. (1996). Windup and central sensitization are not equivalent. Pain, 66(2), 105-108.

Woolf, C. J. (2007). Central sensitization: uncovering the relation between pain and plasticity. The Journal of the American Society of Anesthesiologists, 106(4), 864-867.

Women, partner violence and pain


As the potential for greater repression of women’s autonomy grows (Afghanistan, United States, Mexico), along with racist and misogynist statements from business leaders (DGL CEO Simon Henry) it’s timely to look at pain in women. We already know that more women than men present with persistent pain (Blyth, n.d.), while women who are seen for their pain are more often misdiagnosed, offered psychiatric medication or psychological intervention only and have their experiences dismissed as “hysterical, fabricated, or nonexistent” (Samulowitz, et al., 2018). My daughter, when attending Emergency Department was offered a paracetamol and told “there’s no cure for being a woman” when seeking help for an ovarian cyst. Period pain is considered “normal” (Drabble et al., 2021). Pain in women is not a sexy topic.

Intimate partner violence is common among women. 27% of women who have had a partner report violence perpetrated against them. 24% of young women aged between 15 – 19 years report violence. Low-income countries reporting higher levels of intimate partner violence, and while data was not available for the past two years of covid-19 disruption, it’s expected that higher levels of violence are probable (Sardinha et al., 2022).

What about the intersection between partner violence and persistent pain? (BTW violence is defined as emotional, physical, or sexual harm experienced in a current or former intimate relationship and includes stalking, psychological aggression such as coercion, as well as physical and sexual violence).

Persistent pain is one of the most commonly reported health consequences of intimate partner violence (Walker, 2022), and women are more likely to be the recipients of partner abuse than men. Yet – open conversations about violence and persistent pain in women, recognising the signs and symptoms of partner violence in people seeking help for persistent pain, and adequate approaches to treatment are rare. Women may not disclose their situation for fear of being stigmatised, labelled unfairly, or having their pain – and their situation – trivialised.

Walker and colleagues (2022) carried out a systematic review of studies exploring the types of pain women experienced in association with partner violence, the severity of that pain, and the impact of pain on the person. They found that while pelvic pain was common amongst women who had been sexually abused, women also reported chest pain, back pain, neck pain, arthritis, and stiffness in joint or muscles, more frequent headaches, and more back pain – furthermore, women who had experienced partner violence reports higher pain severity, with 75% of women indicating moderate to severe pain, and the longer a women had been in an abusive relationship, the more likely they were to report higher intensity pain.

Interestingly, disability from persistent pain wasn’t measured often – only two studies from 12 included in the final review – but women with persistent pain from partner violence reported higher pain-related disability. They also reported worse impact on their mental health – more PTSD, anxiety and depression, with depression being one of the key mediator between a history of partner violence and ongoing pain.

The authors of this study (Walker et al., 2022) point out that it’s likely that women who have sustained partner violence and experience persistent pain are “not being adequately identified and responded to in clinical settings” – and that the fear of not being believed and the stigma of being on the receiving end of partner violence likely limits how many women openly discuss their situation.

Isn’t it time to get women’s pain prioritised? To get political about systems and processes that fail women? Isn’t it time to shift the narrative around women’s menstrual pain? To acknowledge that women are not mini men?

Finally, when we consider pain rehabilitation, we need to not only recognise that women have different priorities and goals for their lives than men, we also need to understand that doing rehabilitation is more complex for women than men – women report more difficulty prioritising their own rehabilitation over other responsibilities in their life (Côté & Coutu, 2010). Women may not even be referred for rehabilitation as often as men (Stålnacke et al., 2015). It’s time to prioritise understanding the lived experience of women as they pursue help for their persistent painand then do something different.

Blyth, F. (n.d.). Chronic pain in Australia: A prevalence study. Retrieved May 12, 2019, from http://www.ncbi.nlm.nih.gov/ pubmed/11166468

Daniel Côté & Marie-France Coutu(2010)A critical review of gender issues in understanding prolonged disability related to musculoskeletal pain: how are they relevant to rehabilitation?,Disability and Rehabilitation,32:2,87-102,DOI: 10.3109/09638280903026572

Drabble, S. J., Long, J., Alele, B., & O’Cathain, A. (2021). Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain. British Journal of Pain, 15(3), 345-356.

Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). “Brave Men” and “Emotional Women”: A theory-guided literature review on gender bias in health care and gendered norms towards patients with chronic pain. Pain Research & Management, 2018. https://doi.org/10.1155/2018/6358624

Sardinha, L., Maheu-Giroux, M., Stöckl, H., Meyer, S. R., & García-Moreno, C. (2022). Global, regional, and national prevalence estimates of physical or sexual, or both, intimate partner violence against women in 2018. The Lancet, 399(10327), 803-813.

Stålnacke, B., Haukenes, I., Lehti, A., Wiklund, A., Wiklund, M. et al. (2015)
Is there a gender bias in recommendations for further rehabilitation in primary care of patients
with chronic pain after an interdisciplinary team assessment?.
Journal of Rehabilitation Medicine, 47(4): 365-371
http://dx.doi.org/10.2340/16501977-1936

Walker, N., Beek, K., Chen, H., Shang, J., Stevenson, S., Williams, K., Herzog, H., Ahmed, J., & Cullen, P. (2022). The Experiences of Persistent Pain Among Women With a History of Intimate Partner Violence: A Systematic Review. Trauma Violence Abuse, 23(2), 490-505. https://doi.org/10.1177/1524838020957989

Rehab Fails: What goes wrong in rehab 4


It’s not hard to choose rehab fails, the problem is more about when to stop! I tell a lie, it’s more about how to make changes so these things don’t happen.

Today’s #rehabfail is all about attempting to carve bits of a person off so each profession gets “their” bit to do with what they will. Oh boy, this is a doozy, and it comes to me off the back of seeing the return of the age-old argument about whether pain is “all about the bio” or whether the person gets a look-in. Cuz if it’s all bio then we just treat that bio and be done with it, right? It’s a question that also arises when we begin to ask questions about what the person understands about their pain and disability, when they <gasp!> show that they’re frustrated, demoralised, maybe sad or grieving for what they can’t do….

If I had a dollar for every time I’ve heard someone say “oh but I’m stepping out of scope” – usually in response to a suggestion that they incorporate cognitive behavioural principles in their work, or when someone says it might be a good idea to look into psychosocial factors – I would be wealthy and retired. I cannot believe how often therapists with a primarily physical orientation seem to think that asking someone how they’re feeling about their situation, what they understand might be going on, what they prefer, how they’re sleeping, how they’re getting on with their family… ALL these things is “out of scope!”

Seriously folks. Since when did being a human communicating to another human about how they are in the face of pain and disability turn into a “OOooh but I’m not a psychologist” kind of fear? Who else is going to be able to guide someone to a psychologist unless it’s the insightful clinician who is sensitive to when someone is feeling pretty rotten?

Another part of this chasm between “mind” and “body” is the idea that psychosocial factors are only relevant if or when the person “fails” therapy. Who failed, huh? And where did the idea that psychosocial factors are all negative come from? We all have psychosocial factors in our lives: our temperament, memories, assumptions, relationships, goals, routines, job, choices are all psychosocial, and some of them are even pretty positive!

The siloing of professions particularly in musculoskeletal pain rehabilitation is one of the least helpful things I’ve seen in health. The second is to have a “team on paper” where the “team” members do exactly the same things they do when working as a solo practitioner. Serial monotherapy does nothing for people living with pain. What I mean by this is every doing their therapy concurrently but failing to talk to one another, failing to modify what they do to suit the overall needs of the person, failing to have a common understanding of what one another do, and failing to support one another. How confusing is that for the person getting treatment?

Now I am not suggesting that psychologists should become physiotherapists, or occupational therapists become pharmacists, or even a full transprofessional approach (though this is something our NZ health ministry is aiming for over time). I am simply suggesting these things:

  1. Know that whole people are seeking help, not a knee or a belly pain or a back. Pains are experienced by people.
  2. Be human and listen to (and ask about) human things like: how is your job going? what’s your sleep like at the moment? what do you think is going on with your pain, what is your theory? how are you feeling in yourself at the moment? Open-ended questions about human experiences and habits – and follow up with more open-ended questions, and lots of reflective statements. Do this from day one. For everyone.
  3. Take some time to sit in with someone from a different profession. Make friends with them. Go have a coffee with them. See how they work with someone in common. Let them know this isn’t so you can be them, but so you can help your patients/clients understand a bit more about what seeing them might look like.
  4. Read about “whole person rehabilitation.” Matt Erb and Arlene Schmid’s book is awesome (and not just because I wrote a chapter in it! So did a heap of people! – click.)
  5. Dip your toe into understanding your patient’s life. Ask questions that help you understand how they’ve made the decisions they have. Nobody gets up in the morning to do dumb things that might hurt them: there are logical reasons – to them – for why they do what they do. We just need to get our heads around their reasons to begin to tease out the assumptions they hold (and we hold) that have influenced their choices. Remember we all do this.
  6. Never, ever think that you’re treating a back, or a knee, or a headache or a belly pain. You are always working with a person who is experiencing pain in a part of their body, and that pain has enough meaning for them to decide to ask for help. That’s what we’re actually working with.

Here are some readings discussing how we might build teamwork and whole person rehabilitation:

Bashir, U., & Siddiqui, A. S. (2021). Teamwork in chronic pain management and the way forward in low and middle-income countries. Anaesthesia, Pain & Intensive Care, 25(2). https://doi.org/10.35975/apic.v25i2.1477

Cartmill, C., Soklaridis, S., & David Cassidy, J. (2011, Mar). Transdisciplinary teamwork: the experience of clinicians at a functional restoration program. J Occup Rehabil, 21(1), 1-8. https://doi.org/10.1007/s10926-010-9247-3

Cassell, E. J. (2011). Suffering, whole person care, and the goals of medicine. In T. A. E. Hutchinson (Ed.), Whole person care: A new paradigm for the 21st century (pp. 9-22). Springer. https://doi.org/10.1007/978-1-4419-9440-0

Gordon, D. B., Watt-Watson, J., & Hogans, B. B. (2018). Interprofessional pain education-with, from, and about competent, collaborative practice teams to transform pain care. Pain Reports, 3(3), e663. https://doi.org/10.1097/PR9.0000000000000663

Griffin, H., & Hay-Smith, E. J. C. (2019). Characteristics of a well-functioning chronic pain team: A systematic review. New Zealand Journal of Physiotherapy, 47(1). https://doi.org/https://doi.org/10.15619/NZJP/47.1.02

Maynard, M. T., & Gilson, L. L. (2021). Getting to know you: The importance of familiarity in virtual teams. Organizational Dynamics, 50(1). https://doi.org/10.1016/j.orgdyn.2021.100844

Mallick-Searle, T., Sharma, K., Toal, P., & Gutman, A. (2021). Pain and Function in Chronic Musculoskeletal Pain-Treating the Whole Person. J Multidiscip Healthc, 14, 335-347. https://doi.org/10.2147/JMDH.S288401

Rehab Fails: What goes wrong in pain rehabilitation 3


I’m beginning to think this series could grow into a monster – so many #rehabfails to pick from!

Today’s post is about rehabilitation that doesn’t fit into the person’s life. Or that the person hasn’t been supported to fit the rehabilitation into their life. THEIR life, not ours!

You know what I mean: for six to twelve weeks, this person has been coming along to their treatment sessions, doing the things the therapist suggests. They make progress and it’s time to end the programme. “Good bye patient” the therapist says. And the patient skips off into the sunset, fixed for life.

Yeah right.

Roll that movie right back to the start.

At the first consultation, therapists often ask the person about what they’d like to achieve. Often the person doesn’t really know, after all most people don’t routinely set goals – and particularly if someone is experiencing the disruption of dealing with a painful problem that doesn’t go away like it should. It’s not for nothing that people describe this time as being in “zombie land” and dealing only with “the essentials” (Lennox Thompson, et al, 2019). Nevertheless, therapists ask and people are expected to come up with something that can then form the focus of subsequent therapy. A recent systematic review, however, found that many studies describing goal setting practices fail to implement all the components of effective goal setting – in particular, omitting “formulation of coping plan” and “follow up” (Kang, et al, 2022).

Now these two components are crucial for long-term adherence to rehabilitation, and especially in persisting pain where it’s probable the person will need to follow therapeutic practices for a very long time. The “coping plan” consists of identifying barriers and facilitators to doing the actions that lead to achieving goals, and also involves assessing confidence to do so, along with generating a plan to deal with unexpected situations. “Follow up” involves self-evaluating progress, evaluation, and adjusting the plan to suit. (Kang et al., 2022).

Why are these two components so important?

Well, think of one of your recent patients. Think about the things you (and others in your clinical team) asked that person to do. Are any of these things typical for this person? Are they habits, built into daily routines? Are they familiar? What is this person’s daily routine like? What does their family need to do and what does this person need to do for them? If the person usually works, and is still trying to maintain that on top of their usual home and family activities, how much are you and your colleagues asking the person to do on top of these? When they’re already struggling with the debilitating effects of their pain problem?

See why we might have trouble with adherence? Let alone ensuring that the person feels it’s worthwhile doing what it is we’re asking them to do!

I’ve seen this problem time and time again. Little, if any, consideration of this person’s usual daily life context. Little thought to the burden of trying to manage normal life and what the therapists is asking the person to do. No discussion about what might get in the way of fitting these therapy things into their life – and then I’ve heard clinicians have the audacity to suggest the person isn’t motivated!

So much for person centred rehabilitation. So much for helping the person work out how they might fit these things in, and how they might develop a routine or habit that they can continue once they leave the therapist’s care.

While I’ve looked at goal setting and therapy for persistent pain, what I notice is that even in acute musculoskeletal management, studies have shown that therapists don’t really understand goal setting. Alexanders and colleagues (2021) found that physiotherapists undertaking goal setting for anterior cruciate ligament rehabilitation might employ SMART goals – but didn’t understand the theory behind goal setting, didn’t know that expectations were important, and didn’t use feedback sufficiently. And this is for SMART goals that have already been found wanting (see Swann et al., 2022).

What do I suggest?

  1. Start by understanding the person’s current responsibilities in life, and the impact their pain problem is having. Recognise that those impacts will also have an impact on their capability for adding to their daily routine.
  2. With the person, establish the best time of day for them to do whatever it is you think they should do. Work through what might get in the way – and what might support them.
  3. You may need to help them develop some additional skills to deal with what might get in the way of undertaking your activities – maybe skills to communicate with family, or the boss, so they can take 10 minutes out to do the breathing practice you’ve suggested, maybe some work with thoughts to help them be OK with guilt for “not doing things as normal.”
  4. Assess their confidence to engage in this additional task. Use motivational interviewing to boost their confidence (and it probably would help you to consider the importance of what you’re asking them to do in the context of their values and activities).
  5. Check how much you’re asking the person to do – is it achievable in this person’s life? A certain intensity might be theoretically important for physiology, but if the person doesn’t do it because he or she can’t fit it in, it just won’t get done.
  6. Check in with the person in between appointments. If you see them once a week – send a text 3 days in to that week to see how they’re getting on. Or ask the person if they’ll send you a text to let you know. Give feedback, alter your plan, encourage, celebrate.
  7. And once the person is nearly ready for discharge, make sure you have a set-back or relapse prevention plan in place. What should this person do if things begin to go pear-shaped? Do they need to keep going at the same intensity as they have during your therapy? What are their warning signs for things beginning to fall apart? (clue: it’s often not when people are beginning to hurt again, it’s often because the person is feeling good and starts to drop the things that have helped!)

Don’t do #rehabfails

Kang, E., Kim, M. Y., Lipsey, K. L., & Foster, E. R. (2022). Person-Centered Goal Setting: A Systematic Review of Intervention Components and Level of Active Engagement in Rehabilitation Goal-Setting Interventions. Archives of Physical Medicine and Rehabiltation, 103(1), 121-130 e123. https://doi.org/10.1016/j.apmr.2021.06.025

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. https://doi.org/10.1080/09638288.2018.1517195

Lenzen SA, Daniels R, van Bokhoven MA, van der Weijden T, Beurskens A. (2017). Disentangling self-management goal setting and action planning: a scoping review. PloS One,12:e0188822.

Swann, C., Jackman, P. C., Lawrence, A., Hawkins, R. M., Goddard, S. G., Williamson, O., Schweickle, M. J., Vella, S. A., Rosenbaum, S., & Ekkekakis, P. (2022, Jan 31). The (over)use of SMART goals for physical activity promotion: A narrative review and critique. Health Psychology Review, 1-16. https://doi.org/10.1080/17437199.2021.2023608

What goes wrong in pain rehabilitation (2)


One size does not fit all. Cookie cutter treatments fail to take into account the huge variability each person brings into a clinical encounter, particularly when the person is living with persisting pain. Not really earth shattering news, is it?!

Let me unpack this one.

When we’re treating a person with an acute musculoskeletal injury, let’s say a lateral ankle sprain, I’m going to hazard a guess that most of the recovery occurs without our assistance (don’t shoot the messenger – go read Chen et al, 2019). In essence, we’re creating an environment that supports tissues to do what they do well – get on with healing. Because of this, there’s good reason to follow a basic treatment algorithm that will work for most people. That is, unless or until recovery stops for some reason.

It’s here that algorithms begin to lose utility, because the factors that are implicated in delayed recovery are many and varied – and it’s important to narrow down the particular factors involved for this person with their ankle.

So, IMHO, cookie cutter treatments begin to fall apart when recovery is slower than expected because there are a heap of variables involved. And yet what do I see? “Oh it failed but let’s do the same thing again but harder!” or “the person wasn’t doing their exercises” or “it must be psychosocial factors.”

Well, no, actually, perhaps psychosocial factors are involved, but they were there from the outset (just ignored because the tissue-based factors capture our attention). And no, doing the same thing again but harder leads to the same outcome, only more disappointing. And we have no idea whether the person was, or wasn’t doing their exercises – or whether the prescribed exercises were useful, or whether they even make much of a difference anyway! (again, don’t shoot the messenger, go read Wagemans, et al 2022).

But probably the most heartbreaking thing about using “one size fits all” is that this doesn’t take into account this person’s goals, lifestyle, current priorities, other contextual factors like workplace, family and friendship obligations that are integral to being a person, not just a lateral ankle sprain.

I once worked at a chronic pain centre where every person was assessed by three clinicians: a medical practitioner for diagnosis and medication management; a psychosocial clinician to understand life stressors and the person’s understanding of their pain and their current coping strategies; and a person who assessed how he or she was managing with daily life and functional activities. What I couldn’t understand was how almost every patient was given the same management plan: to try some drugs, see a psychologist, and do a home exercise programme. Come to the centre to see each clinician on a different day of the week. Irrespective of the unique presentation, the same recipe was given. The ingredients might have been a little different when the person was seen for treatment, but without fail, the basic elements were exactly the same.

How is this person-centred care? What if this person was a 4 wheeldrive off-roading enthusiast who loved to go fishing? What if this person was a traveling sales rep with a well-developed meditation practice? What if this person had five kids and couldn’t get to the pain centre for the twice weekly appointments? What if this person was hankering after spending some time with other people who were also living with pain so she could hear that she wasn’t alone, and could pick up tips from people who knew what it was like?

Today I still hear of people being given a copy of “Explain Pain”, get to do the “Protectometer” and then told to go see the physio and psychologist. Nothing about the person’s desire to work out the impact pain has on their daily life, nothing about the understanding the person already has about their own pain fluctuations, and nothing that’s tailored to what this person needs and wants to do.

Seriously folks, pain rehabilitation and management is all about tailored, bespoke, clever therapy based on what the person needs and wants to do, what they already know and bring to their own recovery, and it probably needs to include connection with other people who are in the same situation. Why? Because while “other people” might not give the advice the journal articles recommend, they offer advice from their own experience. And mostly, people with persisting pain need affirmation that they’re resilient, capable, knowledgeable and can work a way through this.

Maybe what we need to do is include people who live with pain in service design (Sandvin Olsson, et al., 2020) – and pain management delivery (Farr, et al., 2021). It seems to work.

Chen, E. , McInnis, K. & Borg-Stein, J. (2019). Ankle Sprains: Evaluation, Rehabilitation, and Prevention. Current Sports Medicine Reports, 18 (6), 217-223. doi: 10.1249/JSR.0000000000000603.

Farr, M., Brant, H., Patel, R., Linton, M. J., Ambler, N., Vyas, S., Wedge, H., Watkins, S., & Horwood, J. (2021, Dec 11). Experiences of Patient-Led Chronic Pain Peer Support Groups After Pain Management Programs: A Qualitative Study. Pain Med, 22(12), 2884-2895. https://doi.org/10.1093/pm/pnab189

Sandvin Olsson, A. B., Strom, A., Haaland-Overby, M., Fredriksen, K., & Stenberg, U. (2020, Aug). How can we describe impact of adult patient participation in health-service development? A scoping review. Patient Educ Couns, 103(8), 1453-1466. https://doi.org/10.1016/j.pec.2020.02.028

Wagemans, J., Bleakley, C., Taeymans, J., Schurz, A. P., Kuppens, K., Baur, H., & Vissers, D. (2022). Exercise-based rehabilitation reduces reinjury following acute lateral ankle sprain: A systematic review update with meta-analysis. PLoS One, 17(2)http://dx.doi.org/10.1371/journal.pone.0262023

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


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

Starting at the wrong intensity

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

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

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

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

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

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

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

What do we do with these thoughts?

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

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

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

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

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

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

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

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

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

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

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

Making sense of pain


It’s been said many times, so many times I can’t locate the originator of the saying “humans are meaning-making machines” – no more so than when a person experiences pain. Whether it’s a stubbed toe, sprained ankle, thundering headache – or, in my case, weird and ongoing widespread body pain AKA fibromyalgia – we would like to make sense of what’s going on. And mostly we tell simple stories about what we were doing, what happened to the body and that’s that.

In the case of weird or persistent pains the challenge becomes harder. The original story might not fit any more, or because of that story, we limit what we do in case we do damage.

Now philosophers and other commentators have taken up the matter of what this experience really is: sensation or perception? Frankly, I don’t think this matters a jot to the people I see who are trying hard to make sense of what their pain means to them. One person I’ve seen recently said “I feel adrift, like a pingpong ball bobbing on the sea” – life is what isn’t making sense any more. And life, dear readers, is not as simple as sensation or perception.

One of the concepts used to understand what constitutes health is the construct “meaning in life.” Meaning in life is associated with resilience, better health outcomes, and very importantly, recovery from Covid and dealing with the stress of how Covid and other world events have played out over the past few years (Arlsan & Allen, 2021; King & Hicks, 2021; Lin, 2021). But where meaning in life has been extensively studied is….chronic pain.

This makes sense to me! Chronic pain is known to disrupt “normal” life for the person experiencing it. Movements that used to be done without thinking are now etched into memory. Sleep isn’t the respite from world cares it was – now it’s endless hours of aching. Assumptions about how quickly a person should recover from injury are smashed. Chronic, persisting, ongoing pain can disrupt life as we know it.

Meaning in life is thought to comprise three facets: coherence, purpose, and mattering. Coherence is about comprehending or “making sense of the past, present and imagined future aspects of life, being able to integrate their life story into a coherent whole (King & Hicks, 2021).” Purpose is “a central, self-organizing life aim that organizes and stimulates goals, manages behaviors, and provides a sense of meaning (McKnight & Kashdan, 2009).” Mattering is about how a person believes their life counts – a sort of transcendence beyond self to a bigger world.

All three of these constructs contribute to an overall belief that life makes sense, and that we are effective agents that contribute over and above our lifetime. You can see how this can erode when living with a meaningless pain like neuropathic pain, or ongoing migraines, or low back pain that just doesn’t settle.

Where does that leave us, if we’re clinicians working with someone experiencing weird pain? I think one of the most important parts of our work is to help people achieve a sense of coherence – that despite pain, it’s possible to still be “me” and that while the future may be different from what was previously imagined, it can still fit into a coherent whole. What this means is helping the person to establish what matters in their life, then figuring out ways for the person to resume those things, whether pain is present or not. This might look like helping the person come up with a story about their pain – a narrative that moves from damage to perhaps recognising that we don’t know why they hurt, but that they know of various factors that influence the severity, frequency and interference of their pain (Hadley & Novitch, 2021).

I also think we need to recognise that people living with pain may also find their purpose is challenged – and some of our work is helping people recognise their purpose in life and find ways to keep moving towards what matters to them. This is the part where we recognise values and life direction – perhaps “occupational drive” or the things that people want and need to do.

Finally, throughout our work with people, we need to remember that mattering matters. That the person we’re working with isn’t “the wonky knee” or “the shoulder” or “the bad back.” Being willing to see the person behind the eyes, the talk, and the pained body. This takes time, and most of all – listening with heart and curiosity.

Arslan, G., & Allen, K. A. (2021, Jan 25). Exploring the association between coronavirus stress, meaning in life, psychological flexibility, and subjective well-being. Psychology, Health and Medicine, 27(1), 1-12. https://doi.org/10.1080/13548506.2021.1876892

Hadley, G., & Novitch, M. B. (2021, Apr 1). CBT and CFT for Chronic Pain. Current Pain and Headache Reports, 25(5), 35. https://doi.org/10.1007/s11916-021-00948-1

King, L. A., & Hicks, J. A. (2021). The science of meaning in life. Annual Review of Psychology, 72, 561-584.

Lin, L. (2021, May). Longitudinal associations of meaning in life and psychosocial adjustment to the COVID-19 outbreak in China. British Journal of Health Psychology, 26(2), 525-534. https://doi.org/10.1111/bjhp.12492