acceptance

Dealing with distress


From time to time anyone who works with people trying to help them make changes in their lives will encounter someone who is overwhelmed, distressed and generally not willing to (or able to) take even a tiny step forward. It’s hard for us as therapists because, after all, we want to help people – but hey! This person in front of us just isn’t up to it!

I think many of us who weren’t trained in psychology can find it really hard to know what to do, and like all humans, we deal with feeling helpless by hoping to avoid it.

Some of us will tell people what to do – this is the way most of us were trained, so it’s what we do when under threat. We might couch this advice in fancy words, but essentially we try to get the person to make a change on the basis of our expertise and superior position. After all, the person came to us for help, right?

Some of us will feel stuck ourselves. Perhaps we’ll give up, or blame the person we’re sitting in front of. They’re not motivated/willing/ready so we stop trying and back off.

In both of these situations, the person’s actual needs at the time can be inadvertently ignored. They’re distressed and we either ignore and advise, or back off – when perhaps what they’re really wanting is someone to be present with them and offer them time to work together on the next best step they can take.

Here’s one way I’ve used to help people who are stuck, distressed and not certain.

  1. Be fully present and let them express what’s going on. This means listening, perhaps asking “can you tell me more about that?” or “it’s tough but are you willing to talk me through what’s going on for you right now?” or “what’s your theory on why you are feeling what you’re feeling?”
  2. Listen with an open and enquiring mind and heart. That means absorbing what they’re saying without trying to respond to it. At the most, you can reflect what you hear, perhaps saying things like “I think I understand that you’re feeling [sad, afraid, overwhelmed], do I have this right?”, or “From what you’re saying, you’re not sure [what’s going on with your rehab] and this is incredibly hard”, “if I’ve heard what you’re saying… is that what you mean?”
  3. Breathe and be mindful of your own response before charging on with the session. It’s OK to tear up if someone is saying something that would make you feel sad. It’s OK to feel aghast that this terrible thing is happening. It’s OK to notice your own body tighten up, your breathing change, not to know what to say. Just notice this in yourself BEFORE you respond. If you do feel something, respond naturally – normalise the experience described by the person as being something anyone in their shoes would feel, and reflect your own response to it. You can say things like “Oh that sounds like such a tough situation” or “I feel a bit tearful myself when I listen to what you’ve been through”, or “I really don’t know how to respond to what you’ve said, I’m lost for words, it’s really hard”.  The purpose behind doing this is to acknowledge that we’re human too, and get affected by what we hear. To be transparent and real so that the person is aware of your own readiness to “show up” and be fully present alongside them.  If you need a moment to catch your breath after they’ve told you something emotionally charged, say so.
  4. When you do respond, summarise what you’ve heard and ask them if that’s what they intended to mean. In motivational interviewing terms this can be called “giving a bouquet” – collecting together a summary of what the person has said, then offering it back to them to check you’ve understood (and it also shows them you’ve been listening).
  5. Before doing anything else, ask them “where does this leave you?” or “what do you think you should do right now?” or “what’s the next step for you now?” People have ideas about what to do next, most times, and we work more effectively with those ideas than if we try to bolt on some piece of advice without recognising their thoughts.

A couple of nice tools to use at this point are the choice point  , and the matrix by Dr Kevin Polk.

The hardest part of responding this way is often our own response. Because we feel uncomfortable, and we’re aware of timeframes, expectations, and because we probably don’t enjoy people crying or being angry in our sessions, we often don’t want to take the few moments needed to be present with someone who is in the middle of it all. Being present is about being there and not trying to change the situation, or rush away from it, or fix the problem – it’s about being willing to bear witness and honour the vulnerability that person has shown us. What a privilege!

It can be emotionally tough after a day of seeing people who are feeling distressed. I think this is where using mindfulness as I’ve described above can be really worthwhile. Noticing what our body is doing when someone is distressed can help us notice the work we do (and help explain why some of us don’t want to talk to anyone at the end of a hard day!). The odd thing is, that when we honour someone by being present and not trying to change their situation at the time, we often find the person is ready to move on and engage in therapy far more quickly than if we’d tried to “make” it happen. At least, that’s my experience!

A good clinician once told me “never be afraid of allowing someone to have a crisis, because after a crisis, shift happens”. I’ve found that to be true.

I’d love to know your thoughts on this post – I don’t have loads of references for it, but a couple that come to mind are:

Beach, Mary Catherine, Roter, Debra, Korthuis, P. Todd, Epstein, Ronald M., Sharp, Victoria, Ratanawongsa, Neda, . . . Saha, Somnath. (2013). A Multicenter Study of Physician Mindfulness and Health Care Quality. The Annals of Family Medicine, 11(5), 421-428. doi: 10.1370/afm.1507

Goubert, Liesbet, Craig, K., Vervoort, Tine, Morley, S., Sullivan, M., Williams, A., . . . Crombez, G. (2005). Facing others in pain: The effects of empathy. Pain, 118(3), 285-288. doi: dx.doi.org/10.1016/j.pain.2005.10.025

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Being flexible – and how language can make you inflexible


One of the reasons humans seem to dominate our natural world is our flexibility. We don’t have the best eyesight, hearing, strength, speed, stamina or indeed any single attribute that means we’re King (or Queen) of the Jungle, but what we do have is the ability to adapt our environment to maximise the benefits to ourselves. Being flexible means we can find many different ways to achieve a certain goal. It means we don’t get stuck using the same solution when that solution doesn’t work. We try lots of different ways to achieve what we want.

Or are we?

There are plenty of times when I’ve had to firmly remind myself “the definition of insanity is to try doing the same thing again and again, hoping for a different result” I have no idea where that quote came from, but it seems applicable!

Rules

Thankfully, humans don’t have to experience adverse events directly to learn from them. We can learn from what other people tell us. Sometimes what others tell us is helpful – “watch out, walking on a sprain is gonna hurt!” Other times, when what someone tells us is true – but not applicable in our context – we can learn something that isn’t helpful. “Watch out, walking on anything painful is bad”. We can over-generalise or develop an arbitrary rule that is inflexible.

Now this happens all the time. We learn to avoid things that could potentially harm us on the basis of words – parents, teachers, friends, officials all tell us not to do things that could harm us so we avoid dangers without actually having to face them. When we learn this, the function or relationship between events and the way we relate to them gets influenced by what we’re told rather than the actual event itself. So, for example, we learn that when someone tells us off for doing something dumb, we re-experience what it feels like to be ashamed. We don’t want to experience shame, so we avoid situations that look like (function in the same way as) whatever it was we might have done to be told off.

Experiential avoidance and symbolic generalisations

Because we use language to depict these situations and because language can bring back all those associations between the event, object, emotions and experiences, we quickly learn to generalise these relationships – in RFT (relational frame theory) terms, we develop symbolic generalisations. What this means is that even though the actual object, event, emotion etc is not present, just describing something like those things can elicit the same response. And when we don’t like that experience we use every means possible to avoid experiencing it – so we avoid, try to forget, try not to think about it, keep busy, avoid talking about it, pretend it’s not there.

Through avoiding, we develop a whole lot of new associations – “doing this to avoid that” begins to relate “this” to whatever we’re avoiding. So, for example, keeping busy to avoid feeling sad can become a trigger for sad feelings. Sitting stiffly and avoiding bending can become a trigger for worrying about the potential for pain if we do bend.  So, doing things that help us avoid a  negative association can build into a whole set of behaviours that initially help us avoid but ultimately elicit the very things we were hoping not to experience. We become inflexible as the rules we use develop into constraints across a larger range of stimuli/experiences than we originally intended.

Deliberately trying to avoid an experience is tricky, there can be a whole lot of unintended consequences – and no more so than when the negative experience we’re trying to avoid is pain.

Rule-governed behaviour

The thing is, once we develop a rule we begin to follow the rules rather than trying it out ourselves. We place less emphasis on our own experience. Let’s use an example from pain. A person feels uncomfortable bending over while carrying a laundry basket. A kind therapist suggests that bending over isn’t safe, so the person should use “safe handling” techniques. While the therapist is present, the person uses the so-called safe techniques but all the while thinks “if I bend over incorrectly, it must be unsafe because these are “safe handling” techniques”. The person develops a rule. Now when the person begins to move something she uses the “safe handling” techniques but finds it really difficult at times because she has to lift children into the back of the car so they can get into the car seat. She feels worried that she’s not using the “safe handling” techniques rather than feeling what actually happens when she lifts the child.  She instead avoids lifting the child into the car and asks for help. Another person comes along, scoops the child up, plonks him into the car seat and the job’s done.

Rules are helpful, they save us time and harm. They’ve accelerated our rate of learning. BUT they come at the expense of flexibility. There are times when it’s useful not to use “safe handling” techniques – ever tried crawling under your house with a bag of tools? Or get a screaming toddler into the back seat of a two-door car?

Rules also begin to influence the associations we make between events – before the kind therapist advised the person that she should use “safe handling” techniques, the person never thought about how she got the children into the back seat of the car. Now she does. And every time she lifts something off the ground she also thinks about her back. And when she carries her groceries. And bends over to make the bed. And maybe even as she reaches overhead to get something from a cupboard. Or lifts the ironing board and opens it out.

How stuck is that? And how often have we as clinicians inadvertently generated rules that teach our clients to avoid a movement or experience?

Next week: pliance and tracking and what these mean…

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

Getting stuck with language


In my last post I talked about the ways in which humans learn to relate abstract concepts and experiences together (symbolic relations). I pointed out that we learn to take another person’s point of view as part of developing empathy, and that by interacting with our world we become aware of our place (here) and someone or something else’s place (there). We also learn “me” and “you” (not me), along with near and far, now and then and myriad other abstract concepts that our language can allow us to understand. I suggested that the flexibility of symbolic relations and the relational framing we develop as a result of this skill can be both a help and a hindrance.

Yes, we can remember that a pot can be used to cook, but we also can’t unlearn that relationship. And in being unable to unlearn a relationship we can find it difficult to consider alternative relationships between that pot and whatever else we could do with it. The pot will always be recognised as “something to cook with” although it might also become associated with a receptacle for water, a paperweight, a hat, and even a weapon – but when we’re first asked “what do you use a pot for?” we’ll almost always come up with “cooking”.

In relational frame theory, we develop the ability to empathise or adopt the view of another person based on perspective taking and contextual cues. Contextual cues help us learn the concepts of “I” and “you”  by moving from “here” to “there” to take the place of the other person. If a pen is here, and paper is there, when I go to the paper, it becomes “here” and the pen is “there”. In technical terms this is called deictic framing and this is how kids learn that some concepts only make sense from a given point of view – and here and there are two of those concepts.

How does this relate to pain?

Well, to enjoy being with others, you need to have sufficient deictic framing skills to “stand in another person’s moccasins”, to empathise with their feelings and to be willing to feel those feelings (Villatte, Villatte & Hayes, 2016, p. 32). The thing is, we don’t always want to feel what another person is feeling, especially if we’re angry with them, or they’re feeling sad or some other negative emotional state. We learn to put our ability to empathise on hold to avoid experiencing those feelings. We do this with our own emotions and experiences we’d rather not have. And it’s an adaptive thing – we don’t want to be completely immersed in another person’s experience all the time because it’s difficult to know what our own feelings are vs those of another. We also don’t want to experience all the negative things around us – we learn from them, true, but we don’t really want to feel them all the time. So we develop a skill called “experiential avoidance”. That is, we learn not avoid experiences we’d rather not have.

Experiential avoidance is a cool skill, it’s definitely helpful – it is a process that we use to avoid personal injury, unpleasant people, or situations we don’t feel comfortable in. BUT there’s a catch. Because we relate concepts to one another, we associate words with experiences and memories as well. This is also useful – we can recall the lovely feeling of summer even in the middle of a grey old winter! But at the same time, our most potent learning is often associated with unpleasant experiences, and so for me the sound of a rumbling truck can bring back all the memories of my house being jolted and struck by an earthquake. And because that experience is associated with feeling out of control, helpless, worried and unsettled, those emotions come back along with the memory of the earthquakes. All brought about by hearing a truck rumbling past! And talking about the earthquakes, for some people, is enough to bring back all those same memories.

No wonder, then, for some of the people we work with, just seeing someone walking by is enough to generate the memories, emotions and concerns they experience when they try to walk on a painful foot.

Because of our tendency to avoid experiences that don’t feel good, we naturally try to avoid coming into contact with those stimuli that evoke those negative feelings etc. For some people this can mean avoiding watching images on TV – I remember avoiding watching the tsunami in Japan that happened just after the quakes here in Christchurch. To me the emotions were too raw, I felt too overwhelmed by my own situation to feel I could empathise with those people in Japan.  In some of our clients, just talking about their own painful body can be overwhelming, bringing back unpleasant emotions, memories and thoughts. And indeed for some people, just seeing others doing the things they believe will hurt if they did them is enough to provoke both a negative emotional response AND an flare-up of their pain.

So. Experiential avoidance can help us avoid feeling overwhelmed…but it also stops us experiencing what is happening right now. And I think you can see how it can stop us learning, and it can limit the range of things we’re happy to do – not because there’s any threat right here and now, but because we remember what has happened, and we make predictions of what might happen in the future. The things that might happen – might not happen too! And the things that have happened have already occurred… but our brains are good at joining the dots and being a bit over-protective.

What this means for us as clinicians (and for us as people, too), is that we might need to be gentle but firm, and help people be present here and now. And gradually show people how to be OK with experiencing things that remind us of unpleasant events in the pursuit of something far more useful – flexible responses in a world that is always changing.

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

Words are never enough – but does that stop us?


Pain may be said to follow pleasure as its shadow; but the misfortune is that in this particular case, the substance belongs to the shadow, the emptiness to its cause. CHARLES CALEB COLTON, Lacon

I can bear any pain as long as it has meaning. HARUKI MURAKAMI, 1Q84

But pain … seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?  LOIS MCMASTER BUJOLD, Barrayer

Language is not just words, but what those words symbolise. We use movements of lips, tongue and throat to produce symbols we relate to other things. We then use the relationships we learn through symbols to frame or structure our experiences – language is a “form of cooperation that builds on the social nature of humans groups and enhances a culture of eusociality in which humans thrive” (Villatte, Villatte & Hayes, 2016. p. 28). What this means is that humans learn to connect concepts together through language which represents concepts only because of a shared social understanding – and in sharing this understanding we feel connected.

Why am I talking about language? Well, relational frame theory is a theory of human behaviour that helps us understand how language can exert an influence on us through the way we understand symbolic relations.We learn symbolic relationships by interacting with our world – children learn concepts of  “I – you” (that you and I are different, but that I can take your perspective by imagining I was in your place); “here-there” (that here is where I am, but there is another place – and I can move to that place); “now – then” (what is happening now will become then soon) by handling objects, ultimately understanding that the concepts only make sense within the context of “here”, or “I”, or “now”.   To be empathic, we need to learn to take the perspective of another, see and feel things from another person’s point of view, and be willing to experience those feelings (Villatte, Villattee & Hayes, p.32).

To be empathic to another’s pain, we need to take the perspective of another, to be willing to experience “what it might feel like” from the other person’s shoes.

Why are symbolic relations important?

In Christchurch, as many people know, over the past five years we have been through over 10,000 earthquakes of more than 3 on the Richter Scale. The thought of having an earthquake, to someone raised in NZ, is a distinct possibility. We have small ones all the time. Then in September 2010 we had the first big earthquake. It happened in the middle of the night (early morning), when all was dark, and it was violent! Later that day we had many aftershocks, and I can remember my heart pounding and feeling anxious in the aftermath. What has happened since, though, is that I’ve learned to associate the word “earthquake” with a whole lot of concepts – a rumbling noise from a truck driving past, the deep rumble of earthworks, EQC (our national insurer), road cones, detours, heritage buildings being knocked down, having no water or power. I keep a look out for exits, I brace at the rumble of a truck, one of the topics of conversation is “how is your house” and I remember the fatigue of constant aftershocks in the middle of the night.

Learning the associations (symbolic relations) between the experience at the time of an earthquake and all these other things such as words, movements, actions and emotions means that as a person living in Christchurch, the word “earthquake” and the sight of road cones and the rumble of a truck have all gained additional meaning or salience to me.

Simply by remembering a particular day (for us it was September 22, 2011), or by looking at a road cone, or diggers operating in a trench in a road, I have emotional, cognitive, motivational and perceptual responses. This is the power of a symbol, once learned.

And once learned, that association will never be unlearned – I will always remember that trucks rumbling by sound a lot like the start of an earthquake, and I will probably always have a quick little bracing response that I may not even notice (but hitch me up to biofeedback and I’ll be skin conductance will be increased).

What does this have to do with pain?

In the same way that I learned about earthquakes being associated with a whole bunch of things that hadn’t been connected before September 2010, from the time we are born we develop associations between our experiences of pain and other things including language.

For the most part we learn that pain is associated with something not so good happening to our body. We learn that it’s something we don’t really want to experience, and so we try to avoid it (mainly). We learn words that are associated with that experience – “ouch!”, “hurt”, “painful”, “ache”. We also develop emotional, cognitive, motivational and perceptual responses to this experience. We learn that certain movements bring pain on, while others alleviate it; we learn that some people respond with sympathy to our words or movements while others don’t respond.

The thing about symbolic relations is that “the simplest act of remembering by using names and symbols … means that anytime, anywhere, we can remember past painful or difficult events based on a few cues…the past can become present through symbolic relations” (Villatte, Villatte & Hayes, 2016, p. 33). While nonhuman animals can become fearful in situations that are similar to those they’ve felt threatened in, humans can experience the same emotions and responses even when a word is spoken – like earthquake for me brings on a heightened awareness of how vulnerable I am when the ground shakes.

What this learned association means is that for all humans, there are many cues that will elicit the same response as the actual event. And given the ubiquity of pain and the words we use to describe pain – and the associations we develop since we’ve been children – it’s no wonder that changing some of the more unhelpful associations and responses we have to the experience is a challenge.

Over the next few weeks I’ll be posting about relational frame theory and how this theory can help us understand why words can be used to help – and harm – and how to implement useful verbal strategies in sessions to help our clients see their pain from a different frame.

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

Ambiguity and uncertainty


Humans vary in how comfortable we are with uncertainty or ambiguity: Tolerance of ambiguity is a construct discussed in cognitive and experimental research literature, and refers to the willingness to prefer black and white situations, where “there is an aversive reaction to ambiguous situations because the lack of information makes it difficult to assess risk and correctly make a decision. These situations are perceived as a threat and source of discomfort. Reactions to the perceived threat are stress, avoidance, delay, suppression, or denial” (Furnham & Marks, 2013, p. 718).  Tolerance to uncertainty is often discussed in relation to response to stress and emotions associated with being in an ambiguous situation, or it may refer to a future-oriented trait where an individual is responding to an ambiguous situation in the present. Suffice to say, for some individuals the need to be certain and clear means they find it very difficult to be in situations where multiple outcomes are possible and where information is messy. As a result, they find ways to counter the unease, ranging from avoiding making a decision to authoritatively dictating what “should” be done (or not done).

How does this affect us in a clinical setting? Well, both parties in this setting can have varying degrees of comfort with ambiguity.

Our clients may find it difficult to deal with not knowing their diagnosis, the cause of their painful experience, the time-frame of its resolution, and managing the myriad uncertainties that occur when routines are disrupted by the unexpected. For example, workers from the UK were interviewed about their unemployment as a result of low back pain. Uncertainty (both physical and financial) was given as one of the major themes from interviews of their experience of unemployment (Patel, Greasley, Watson, 2007).  Annika Lillrank, in a study from 2003, found that resolving diagnostic uncertainty was a critical point in the trajectory of those living with low back pain (Lillrank, 2003).

But it’s not just clients who find it hard to deal with uncertainty – clinicians do too. Slade, Molloy and Keating (2011) found that physiotherapists believe patients want a clear diagnosis but feel challenged when they’re faced with diagnostic uncertainty. What then happens is a temptation to be critical of the patients if they fail to improve, to seek support from other more senior colleagues, and end up feeling unprepared by their training to deal with this common situation. The response to uncertainty, at least in this study, was for clinicians to “educate” care-seekers about their injury/diagnosis despite diagnostic uncertainty (my italics), and a strong desire to see rapid improvements, and tend to attribute lack of progress to the client when either the client doesn’t want “education” or fails to improve (Slade, Molloy & Keating, 2003).

Physiotherapists are not alone in this tendency: There is a large body of literature discussing so-called “medically unexplained diseases” which, naturally, include chronic pain disorders. For example Bekkelund and Salvesen (2006) found that more referrals were made to neurologists when the clinician felt uncertain about a diagnosis of migraine. GP’s, in a study by Rosser (1996) were more likely to refer to specialists in part because they were uncertain – while specialists, dealing as they do with a narrower range of symptoms and body systems, deal with less diagnostic uncertainty. Surprisingly, despite the difference in degree of uncertainty, GP’s order fewer tests and procedures yet often produce identical outcomes!

How do we manage uncertainty and ambiguity?

Some of us will want to apply subtypes, groupings, algorithms – means of controlling the degree of uncertainty and ambiguity in our clinical practice. Some of the findings from various tests (eg palpation or tender point examination) are used as reasons for following a certain clinical rule of thumb. In physiotherapy, medicine and to a certain extent my own field of occupational therapy, there is a tendency to “see nails because all I have is a hammer” in an attempt to fit a client into a certain clinical rule or process. We see endless publications identifying “subtypes” and various ways to cut down the uncertainty within our field, particularly with respect to low back pain where we really are dealing with uncertainty.

Some of these subgroupings may appear effective – I remember the enthusiasm for leg length discrepancies, muscle “imbalance”, and more recently neutral spine and core stability – because for some people these approaches were helpful! Over time, the enthusiasm has waned.

Others of us apply what we could call an eclectic approach – a bit of this, a bit of that, something I like to do, something that I just learned – and yes, even some of these approaches seem to work.

My concern is twofold. (1) What is the clinical reasoning behind adopting either a rule-governed algorithm or subtyping approach or an eclectic approach? Why use X instead of Y? And are we reasoning after the fact to justify our approach? (2) What do we do if it doesn’t work? Where does that leave us? As Slade, Molloy & Keating (2003), do we begin blaming the patient when our hammer fails to find a nail?

I’ve long advocated working to generate multiple hypotheses to explain how and why a person is presenting in this way at this time. It’s a case formulation approach where, collaborating with the person and informed by broad assessment across multiple domains that are known to be associated with pain, a set of possible explanations (hypotheses) are generated. Then we systematically test these either through further clinical assessment, or by virtue of providing an intervention and carefully monitoring the outcome. This approach doesn’t resolve uncertainty – but it does allow for some time to de-bias our clinical reasoning, it involves the client in sorting out what might be going on, it means we have more than one way to approach the problem (the one the client identifies, not just our own!), and it means we have some way of holding all this ambiguous and uncertain information in place so we can see what’s going on. I know case formulations are imperfect, and they don’t solve anything in themselves (see Delle-Vergini & Day (2016) for a recent review of case formulation in forensic practice – not too different from ordinary clinical practice in musculoskeletal management IMHO) . What they do is provide a systematic process to follow that can incorporate uncertainty without needing a clinician to jump to conclusions.

I’d love your thoughts on managing uncertainty as a clinician in your daily practice. How do you deal with it? Is there room for uncertainty and ambiguity? What would happen if we could sit with this uncertainty without jumping in to treat for just a little longer? Could mindfulness be useful? What if you’re someone who experiences a great deal of empathy for people who distressed – can you sit with not knowing while in the presence of someone who is hurting?

 

Bekkelund, S., & Salvesen, R. (2006). Is uncertain diagnosis a more frequent reason for referring migraine patients to neurologist than other headache syndromes? European Journal of Neurology, 13(12), 1370-1373. doi:http://dx.doi.org/10.1111/j.1468-1331.2006.01523.x
Delle-Vergini, V., & Day, A. (2016). Case formulation in forensic practice: Challenges and opportunities. The Journal of Forensic Practice, 18(3), null. doi:doi:10.1108/JFP-01-2016-0005
Furnham, A., & Marks, J. (2013). Tolerance of ambiguity: A review of the recent literature. Psychology, Vol.04No.09, 12. doi:10.4236/psych.2013.49102
Lillrank, A. (2003). Back pain and the resolution of diagnostic uncertainty in illness narratives. Social Science & Medicine, 57(6), 1045-1054. doi:http://dx.doi.org/10.1016/S0277-9536%2802%2900479-3
Patel, S., Greasley, K., Watson, P. J. (2007). Barriers to rehabilitation and return to work for unemployed chronic pain patients: A qualitative study. European Journal of Pain: Ejp, 11(8), 831-840.
Rosser, W. W. (1996). Approach to diagnosis by primary care clinicians and specialists: Is there a difference? Journal of Family Practice, 42(2), 139-144.
Slade, S. C., Molloy, E., & Keating, J. L. (2012). The dilemma of diagnostic uncertainty when treating people with chronic low back pain: A qualitative study. Clinical Rehabilitation, 26(6), 558-569. doi:10.1177/0269215511420179

What is our goal in pain management?


One of the cool things about having worked in chronic pain management since the mid-1980’s is that I’ve seen a few things come and a few things go.  Some things remain, of course, and the things that seem most long-lived are debates about pain reduction vs living with pain. On one hand, there’s an enormous industry set up to help people reduce their pain experience through pharmacology, injection procedures, surgery, hands-on therapy, movement practice, and novel approaches like brain stimulation and even mirror therapy. On the other hand, there’s a smaller but equally well-established industry established to help people live with their pain, usually involving self-management of some sort and following a cognitive behavioural approach.

The two seem almost incompatible in many respects – why would someone choose to live with pain if their pain can be reduced or alleviated? What are the ethics of not offering pain reduction if it’s available? Why focus on hard work learning to live within the constraints of pain if there’s a way to get rid of it?

I wonder if it’s time to look at the underlying reasons for offering pain management. What is the goal? (BTW occasionally I might write “our” goal – and I do this deliberately because I think there are assumptions made by people who live with pain, and treatment providers, that may not always be explicit).

Why do we offer pain treatments?

Looking beneath the “oh but it’s a good way to earn a living” economic argument, I think some of the reasons we offer pain treatment is a sense of moral concern at seeing people in distress. As a society we’ve cast pain as a “thing” that needs to be fixed, a wrong that must be righted. We have cast ill health and disease as something that should not exist, and we use words like “war” or “battle” when we discuss treatments.  The Hippocratic Oath makes it clear that physicians “must not play at God” yet defining the limits of treatment is a challenge our society has yet to fully resolve.

At the same time as we view pain as an ill that must be removed, underneath the moral argument are a few other reasons – we think it’s wrong to allow someone to suffer. We think it’s wrong that people might not be able to do as they wish. We respect individual agency, the freedom to engage in life activities, to express the self, to participate in life fully and completely. And we think it’s important that, when disease or illness strikes, we offer something to reduce the restrictions imposed on individuals.

What’s wrong with these reasons for offering treatment?

Well, superficially and in the main, nothing. As humans we do have a sense of compassion, the desire to altruistically help others. Whether this is because, as a species, we hope someone will help us if we’re in the same situation, or whether we do it because of some other less selfish reason, I’m not sure. But there are problems with this way of viewing pain as an inevitably negative harmful experience. And I think it has to do with conflating (fusing together) the concepts of pain and suffering.

We offer people some treatments create suffering: I’ve just quickly skimmed a recent paper on using long-acting opioids for chronic noncancer pain where it was found that “prescription of long-acting opioids for chronic noncancer pain, compared with anticonvulsants or cyclic antidepressants, was associated with a significantly increased risk of all-cause mortality, including deaths from causes other than overdose, with a modest absolute risk difference” (Ray, Chung, Murray, Hall & Stein, 2016).

Given the poor response to pharmacological approaches experienced by so many people living with chronic pain (see Turk, Wilson & Cahana, 2011), not to mention “failed” surgery – the rates of persistent postsurgical chronic pain range from 12% (inguinal hernia) to 52% for thoracotomy (Reddi & Curran, 2014) – it surprises me that we often don’t discuss what to do (and when) if our treatments produce pain, or make it worse.

Nonmedical treatments can also be lumped in with these medical approaches – how many years of back-cracking, pulling, pushing, prodding, needling and exercising do people living with pain go through before someone pulls the plug and says “how about learning to live with your pain?”

What’s my goal in pain management?

When I see someone who is experiencing pain, whether it’s persistent or acute, my goal is for them to be able to respond to the demands of their situation with flexibility, and to live a life in which their values can be expressed.

That means no recipe for treatment, because each person is likely to have a whole bunch of different demands, things they’re avoiding, things that limit what they’re OK with doing. Values also differ enormously between people – we might all choose to work, but the reasons for working (and the kind of work we do) is informed by what we think is important. I’m intrigued by new learning, new information, and complexity. Others might be focused on ensuring their family is secure. Others still might be working to have a great social network. All of these values are relevant and  important.

Many of our treatments actually limit how flexibly people can respond to their situation – think of “safe” lifting techniques! And sometimes even the time people take away from living their normal life means their values are not able to be expressed. The thoughts and beliefs instilled by us as treatment providers (and from within our discourse about pain treatment) may also limit flexibility – think about “pain education” where we’ve inadvertently led people to believe that their pain “should” reduce because “know they know about neuroscience”.

At some point in the trajectory of a chronic pain problem, the person experiencing pain might need to ask themselves “Is what I’m doing helping me get closer to what I value, or is it getting in the way of this?” As clinicians we might need to stop for a minute, think of this part of the Hippocratic Oath “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick”  and begin to talk about overall wellbeing rather than just treating “the problem”.

To alleviate suffering we may not need to eliminate pain – we may instead need to think about how we can help people move in the direction of their values

 

Reddi, D. and N. Curran, Chronic pain after surgery: pathophysiology, risk factors and prevention. Postgraduate Medical Journal, 2014. 90(1062): p. 222-7

Ray, W. A., Chung, C. P., Murray, K. T., Hall, K., & Stein, C. M. (2016). Prescription of long-acting opioids and mortality in patients with chronic noncancer pain. JAMA, 315(22), 2415-2423.

Turk, D. C., Wilson, H. D., & Cahana, A. (2011). Pain 2: Treatment of chronic non-cancer pain. The Lancet, 377(9784), 2226-2235. doi:10.111/j.1468-1331.2010.02999.x

Your brain has no delete button


Yesterday, nearly five years after the devastating earthquakes in Christchurch, New Zealand, we had another rude reminder that we live on an active fault zone. A 5.7 magnitude earthquake hit just after lunch, throwing me to the ground, breaking our pendant lights, and a bottle toppled off the shelf beside the toilet, falling into the toilet and smashing the rim (lesson to the men in the house: do not leave the toilet seat up!). Needless to say, my heart was racing for a wee while afterwards!

People living in our fair city have had thousands of quakes to deal with over the past five years, most of them not as powerful as yesterday’s one, but nevertheless rather unsettling. In reflecting on the experience I’m reminded that our nervous system is wired more towards learning and reacting to immediate threat – and anything that represents a threat – than it is to calming and soothing the beast within. In fact, there’s good evidence to suggest that we don’t ever “unlearn” a learned response, instead we develop new pathways that can become stronger and more heavily myelinated than the learned paths – but given a similar context we’re as likely as not to activate that same old set of neural impulses and some researchers suggest this is because of epigenetic changes. (Take a look at this study in rats for one reason – it seems contextual memory triggered by cues is more powerful than we thought!)

As I mused on my startle response which is as well-developed as ever (though I jump less often at trucks going past than I did in the months just after the big quake), I thought about our experience of low back pain – or indeed any other chronic pain. While we’ve got very excited about neuroplasticity, and I think we should, I also think we need to temper our enthusiasm with some reality checks. Even though we seem to be able to reduce pain by using neuroplasticity within our treatments (see Pelletier, Higgins and Bourbonnais, 2015, among others), we need to remember that the pathways associated with chronic pain are many – and not just those to and from the sore part! In fact, because we’re fantastic learning creatures, there are many, many ways in which we encode an experience.

We have already seen that seeing a painful limb can increase the experience of pain in people with CRPS and vice versa (Sumitani, Shibita, Iwakura, Matsuda, Sakaue, Inoue et al, 2007), and this phenomenon has been used in mirror therapy and virtual reality treatments for people with CRPS and some other forms of pain (Foell, Bekrater-Bodmann, Diers & Flor, 2014). As a result of this fascinating finding, treatments using laterality, graded motor imagery and novel movements have all become very popular with varying degrees of effectiveness (especially outside the clinic!).

What perhaps we’ve forgotten is that because we’re incredibly good at learning, we’ve associated not just the “internal” location/intensity/quality of that experience, but also a whole bunch of other associations – words (pain, ouch, suffer, back, leg, doing, lifting, crumbling, disc – and others!), movements (sitting, walking, turning, twisting, crouching, climbing), emotions (happy, sad, glad, awestruck, helpless), images (of a back, leg, someone else sitting or walking or moving), locations (treatment facilities, workplace, the garage, making the bed, the pill bottles in the bathroom) – the list goes on! Even the smell of liniment or whatever rubbing lotion was used can bring all those associations back into consciousness.

And each association branches off and associates with other things in a never-ending network of related experiences and memories and relationships. Is it any wonder that some people don’t miraculously “get better” when we decide to “educate” someone about their pain? Especially if we haven’t given them the respect of listening to how they’ve made sense of their situation…

Now in the series of earthquakes from 2011 until now, I haven’t ever really become overwhelmed with anxiety and helplessness. Yes I have been fed up, frustrated, saddened, and I’ve grieved, got angry at bureaucracy and thought that things surely could be done more quickly. Until yesterday, when the growing anxiety (because the houses being built close to us mean there are many hundreds of thumps and thuds as foundations are hammered into the ground far deeper than ever before) I’d been feeling over the past month or so really got triggered by a very real and unexpected event.

Intellectually I know this quake is just another in the same series as we’ve been having. Nothing terribly awful happened. No-one got hurt. BUT my jitters are back – and every time I look at cracks in the ring foundation, the smashed toilet, look at my broken vase, or go to use the Pyrex jug that got smashed, I’m reminded that this event has happened – and could again. Pictures of the cliffs falling at Sumner, clouds of dust rising from them as they tumbled into the sea; images of broken crockery at Briscoes and wine and beer at the local supermarket; the news, and friends talking on Facebook – all of these remind me of what we’ve just been through and have been for so long.

Now picture the person you’re about to see today. That person with the painful back. The person who flicks through the magazines in your waiting room and sees adverts for lotions, analgesia. Who smells the scents in your area. The one who finds it so hard to roll over in bed every night. Or to sit and watch TV. Just remember that you may be able to develop new and novel pathways for moving so that the pain itself isn’t triggered by movements – but all these other associations are still there, and will be from now on. And think beyond the clinic door and into your patient’s daily life. How will you help them transfer the feeling of safety that being with YOU evokes into a feeling of safety everywhere they are? This is why developing effective self management skills, especially becoming nonjudgemental despite experiencing pain is so very, very important.

 

Foell, J., Bekrater-Bodmann, R., Diers, M., & Flor, H. (2014). Mirror therapy for phantom limb pain: Brain changes and the role of body representation. European Journal of Pain, 18(5), 729-739. doi:10.1002/j.1532-2149.2013.00433.x

Pelletier, R., Higgins, J., & Bourbonnais, D. (2015). Addressing neuroplastic changes in distributed areas of the nervous system associated with chronic musculoskeletal disorders. Physical Therapy, 95(11), 1582-1591.

Sumitani, M., Shibata, M., Iwakura, T., Matsuda, Y., Sakaue, G., Inoue, T., . . . Miyauchi, S. (2007). Pathologic pain distorts visuospatial perception. Neurology, 68(2), 152-154.

Pain Acceptance rather than Catastrophising influences work goal pursuit & achievement


We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue. After all, life doesn’t stop just because pain is a daily companion. I’ve been interested in how people maintain living well despite their pain, because I think if we can work this out, some of the ongoing distress and despair experienced by people living with pain might be alleviated (while we wait for cures to appear).

The problem with studying daily life is that it’s complicated. What happened yesterday can influence what we do today. How well we sleep can make a difference to pain and fatigue. Over time, these changes influences can blur and for people living with pain it begins to be difficult to work out which came first: the pain, or the life disruption. Sophisticated mathematical procedures can now be used to model the effects of variations in individual’s experiences on factors that are important to an overall group. For example, if we track pain, fatigue and goals in a group of people, we can see that each person’s responses vary around their own personal “normal”. If we then add some additional factors, let’s say pain acceptance, or catastrophising, and look to see firstly how each individual’s “normal” varies with their own acceptance or catastrophising, then look at how overall grouped norms vary with these factors while controlling for the violation of usual assumptions in this kind of statistical analysis (like independence of each sample, for example), we can begin to examine the ways that pain, or goal pursuit vary depending on acceptance or catastrophising across time.

In the study I’m looking at today, this kind of multilevel modelling was used to examine the variability between pain intensity and positive and negative feelings and pain interference with goal pursuit and progress, as well as looking to see whether pain acceptance or catastrophising mediated the same outcomes.

variationsThe researchers found that pain intensity interfered with goal progress, but it didn’t do this directly. Instead, it did this via the individual’s perception of how much pain interfered with goal pursuit. In other words, when a person thinks that pain gets in the way of them doing things, this happens when they experience higher pain intensity that makes them feel that it’s hard to keep going with goals. Even if people feel OK in themselves, pain intensity makes it feel like it’s much harder to keep going.

But, what’s really interesting about this study is that pain acceptance exerts an independent influence on the strength of this relationship, far more than pain catastrophising (or thinking the worst). What this means is that even if pain intensity gets in the way of wanting to do things, people who accept their pain as part of themselves are more able to keep going.

The authors of this study point out that “not all individuals experience pain’s interference with goal pursuit to the same extent because interference is likely to depend on pain attitudes” (Mun, Karoly & Okun, 2015), and accepting pain seems to be one of the important factors that allow people to keep going. Catastrophising, as measured in this study, didn’t feature as a moderator, which is quite unusual, and the authors suggest that perhaps their using “trait” catastrophising instead of “state” catastrophising might have fuzzed this relationship, and that both forms of catastrophising should be measured in future.

An important point when interpreting this study: acceptance does not mean “OMG I’m just going to ignore my pain” or “OMG I’m just going to distract myself”. Instead, acceptance means reducing unhelpful brooding on pain, or trying to control pain (which just doesn’t really work, does it). Acceptance also means “I’m going to get on with what makes me feel like me” even if my pain goes up because I do. The authors suggest that acceptance might reduce pain’s disruptive influence on cognitive processes, meaning there’s more brain space to focus on moving towards important goals.

In addition to the cool finding that acceptance influences how much pain interferes with moving towards important goals, this study also found that being positive, or feeling good also reduced pain interference. Now this is really cool because I’ve been arguing that having fun is one of the first things that people living with chronic pain lose. And it’s rarely, if ever, included in pain management or rehabilitation approaches. Maybe it’s time to recognise that people doing important and fun things that they value might actually be a motivating approach that could instill confidence and “stickability” when developing rehabilitation programmes.

Mun CJ, Karoly P, & Okun MA (2015). Effects of daily pain intensity, positive affect, and individual differences in pain acceptance on work goal interference and progress. Pain, 156 (11), 2276-85 PMID: 26469319

“Tell me like it is, Doc” – What to say when you need to tell someone their pain is probably ongoing


About 30 or more years ago I was diagnosed with chronic pain. I’d had low back pain for a couple of years and I was finding it SO hard because of my work in Older Person’s physical rehabilitation. I had treatment after treatment with no change in my pain. I had an X-ray that told me I had a “transitional” vertebra. I thought this explained why my pain persisted and I was hoping someone would be able to “unstick” this vertebra and my pain would be gone. I was referred to a chronic pain management centre and the wonderful Dr Mike Butler, Rheumatologist and pain specialist there told me “There isn’t a medical answer to your pain problem.” Luckily for me he didn’t leave it there – he suggested I read The Challenge of Pain by Melzack and Wall.

But I will admit, I walked away from that appointment feeling absolutely devastated, thinking “I’ll have to live like this forever”.

What I didn’t know at the time was that the way Dr Butler gave me this news is a rarity. I am so grateful that he did, even though I was completely floored and had no idea about what I could do to get on with life. (I began searching the libraries for information on chronic pain, and came across a book by Connie Peck in which she described a behavioural approach to increasing function – and I used this after having devoured the Melzack & Wall book).

Things that were done well:

  1. My physical examination results were fully described and explained to me. While I didn’t have any beliefs about possible cancer or ending up in a wheelchair, it was good to know that my examinations were completely normal with the exception of allodynia and widespread pain over my entire back.
  2. I was given the news pretty straight. Being told “there isn’t a medical answer to your pain problem” meant I stopped looking for the complete cure. And I never once got the suspicion that anyone thought the problem was psychological, fabricated, or that I was just a bit pathetic.
  3. Being given additional resources that gave me information over and above the basics really helped. The book by Melzack and Wall was a real stretch for me at the time, lots of explanations I didn’t fully understand – but it satisfied my curious mind, and gave me a full explanation that helped me make sense of what was going on. And it opened the door for me to realise that my pain wasn’t an indication of ongoing damage. It also gave me an understanding that what I believed, thought and felt could influence my pain. And that was a powerful thing.

If you’d asked me whether I “accepted” my pain, I think I would have clubbed you! I did NOT want this pain. I was still looking for things to reduce my pain – or at least not flare it up. The realisation that my pain would do what it wanted, when it wanted, was something I could only learn over time. And this is an important point: there are some things we need to go through as part of a process. Simply telling someone something does not inevitably mean it’s going to hit home at that time, unless the person is ready (think stages of change here).

If I frame this process within the findings from my research, the first part of learning to live well with pain is making sense. Making sense requires diagnostic clarity, and part of that is having a prognosis. This helps shape future expectations. It’s incredibly difficult to plan a future when the future is hazy. Delaying the point at which the ongoing nature of persistent pain is made explicit seems to me to be delaying the point at which the future becomes clearer – and I think this in turn prolongs disability and distress.

Drawing from my reading around the subject, I think the following might be a useful and pragmatic approach to advising someone that their pain is likely to remain. I hope people living with chronic pain will chime in here and help me out – what would this approach have been like for you?

  • Ensure examinations are explained – especially what you’re looking for, what you’ve found, and what this means. And particularly explaining what negative findings don’t mean.
  • Avoid looking for the mythical and improbable “rare” disorder. Especially if this means delaying the point at which you have to say “and this pain isn’t likely to go away”. I think this is something many medical practitioners are afraid of. Rare disorders are just that: rare. And most of the ones that will kill or disable have very clear indicators apart from ongoing pain. You KNOW this, so let your patients know this.
  • Find out the main concern of your patient. In my case, it wasn’t that I was going to die or end up in a wheelchair, it was much more about “how am I going to live like this – suffering – for the rest of my life!” The “suffering” part was the REAL problem, not the pain per se.* What a shame so few health professionals even bother to find out about their patient’s main concern – maybe it’s feeling old before your time, maybe it’s about becoming a parent, maybe it’s about being just like my mother, maybe it’s about sleep, work – whatever.
  • Directly address the main concern of your patient. Reflect that you’ve heard what their main concern is. Say it back to them, and yes, even use cliched phrases like “It sounds like” – whatever you do, make it clear you’ve heard the person’s main concern. Then begin to discuss what can be done to address that concern. It might take another appointment to do this, but that’s a whole lot better than sending your patient back home without having had his or her concerns understood – or worse, to ignore those concerns and send your patient off for another round of treatments that just don’t help them resolve whatever that concern is.
  • Give space and time for your patient to get their head around this new reality. Do this by letting them know, directly and clearly, that you’ll be there for them while they do this. You know, it might mean not “treating” the person for a couple of appointments, but instead, giving your patient the respect of providing a safe space for them to be there and process what’s going on. Don’t just begin “your” treatment programme as if nothing has happened. And don’t just send the person off without making a time to catch up again. Remember, treatment is as much about an interaction as it is about the therapeutic whatever that you use (Benedetti, 2013).

I have no idea if this approach is the right one, but it seems to me to address some of the things that people living with pain have told me. They’ve said things like “no-one ever told me it would go on”, “I just got pills but I was worried about how I could stay at work”, “I didn’t know why I was doing exercises”, “no-one bothered to find out how my relationship was going”, “they just wanted me out of the office as quickly as possible”, “I was in the too hard basket”.

The most precious thing in life is time. Perhaps we health professionals need to value the time we spend with people a little more than the procedures we carry out. Perhaps reimbursers could equally see that the active ingredient in most treatments is the interpersonal part – and maybe this should be funded well.

*Suffering, to quote Eric Cassel (1999) is about the threat to self-concept – that I would not, could not, do the things that express who I am. Now I don’t think my doctor really addressed this, and I am lucky I’m a geek and love reading, because I learned this through the books I devoured. What I learned was that I could express my self-concept despite my pain. I just had to learn to do things differently.

 

Benedetti, Fabrizio. (2013). Placebo and the New Physiology of the Doctor-Patient Relationship. Physiology Reviews, 93(3), 1207-1246. doi: 10.1152/physrev.00043.2012

Cassell, Eric J. (1999). Diagnosing Suffering: A Perspective. Annals of Internal Medicine, 131(7), 531-534. doi: 10.7326/0003-4819-131-7-199910050-00009

 

Deciding when to say when: pain cure? or pain managed?


I think the subject of this post is the singularly most important yet neglected topic in chronic pain research today. When is it time to say “All this looking at pain cure, or reducing your pain isn’t working, it’s time to accept that pain is going to part of your life.” It’s difficult for so many reasons whether you’re the person experiencing the pain, or the clinician trying to help. It’s also incredibly important for everyone including our community.

Cures for pain that persists are not easily found. One possibility is that the underlying disease or dysfunction has not yet been treated – pain in this case is the experience we have when there’s an unresolved threat to body tissues. Find the source of the problem, treat it, and voila! No pain.

Another possibility is that a new or groovy treatment has been developed – something extraordinary, or something that’s being applied to a different problem or something that’s emerging from the experimental phase to clinical practice.  This means clinicians need to have heard about it, maybe will have had to think hard about their clinical reasoning, have developed skills to apply it, and be ready to talk about it with the person they’re treating.

In the case of much chronic pain, pharmacological approaches simply do not work. Machado and colleagues (2009), in a large meta-analysis of placebo-controlled randomised trials, found 76 eligible trials reporting on 34 treatments. Fifty percent of the treatments had statistically significant effects, but for most the effects were small or moderate … the analgesic effects of many treatments for non-specific low back pain are small”, while Machado, Maher and colleagues found that paracetamol was “ineffective” for reducing pain intensity or improving quality of life for people with low back pain, and although there was a statistically significant result for paracetamol on osteoarthritis pain (hip or knee), this was not clinically important (Machado, Maher, Ferreira, Pinheiro, Lin, et al_2015).  Clifford Woolf said “most existing analgesics for persistent pain are relatively ineffective… the number of patients who are needed to be treated to achieve 50% reduction in neuropathic pain in one patient is more than four – a high cost for the three unsuccessfully treated patients and their physicians” (Woolf, 2010).

Woolf’s sentence ends with an important statement: A high cost for the three unsuccessfully treated patients and their physicians. I have emphasised the final three words, because this might be the most difficult to process. It’s hard for clinicians to say “I can’t reduce your pain”, and “there isn’t a cure”. It’s incredibly hard. And it’s perhaps because it’s so hard that I’ve found very little published research looking at the way clinicians go about telling people their pain is likely to be ongoing. It’s like a taboo – let’s not talk about it, let’s pretend it doesn’t happen, after all it doesn’t happen often.  Really?

Amongst allied health (I can’t bear to use the word “non-medical”), and in particular, physiotherapists, there continues to be a push to address pain intensity and (ultimately) to cure pain.  Innovative treatments such as mirror therapy, graded motor imagery, therapeutic pain neuroscience (we used to call it psycho-education in the 1980’s when I first started working in this area), reducing the threat value of the experience have all come into their own over the past 15 years or so. Even long-standing pain problems apparently respond to these approaches – people cured! Who wouldn’t be keen to try them?

Most of these latter treatments are based on the idea that our neurology is plastic; that is, it can change as we change input and thoughts/beliefs about what’s going on.  Unfortunately, the systematic reviews of trials, and at least one “real world” trial of graded motor imagery haven’t shown effects as great as promised from the early research (eg Johnson, Hall, Barnett, Draper, Derbyshire et al, 2012). There are sure to be people who can point to amazing outcomes in the people they treat. I’m certain that it’s not just the “treatment” but an awful lot to do with the person delivering the treatment – and the treatment context – that might make a difference to outcomes.

But where this all leads me to is who makes the decision to stop chasing pain reduction and pain cure? When does it happen? What’s the process? And what if we treatment providers are actually prolonging disability out of the goodness of our hearts to find a cure?

Let me unpack this a little.

In my research, several important factors led to people deciding to begin flexibly persisting (and getting on with life as it is, not as it was, or might be).

  • The first was knowing the diagnosis and that it would not be completely cured but could be managed.
  • The second, that hurting didn’t mean harm (pain is just pain, not a sign of ongoing damage).
  • The third, that there was something important the person wanted or needed to do to be themselves.

There were other things as well, like having a clinician who would stand by the person even if the person didn’t “do as the Doctor ordered”, and developing their own personalised model or explanation for their pain as it fluctuated from day-to-day. BUT the single most important factor was knowing that the problem needed to be managed because there was no cure. Knowing this meant that energy used chasing a cure was redirected towards learning to live well and be the person they were, rather than a patient or being dominated by pain.

Unfortunately, I think that many clinicians confuse the idea of managing pain with that of resignation to a lesser life. Even the wonderful Lorimer Moseley and crew wrote recently that “CBT literature seemed to focus on this idea of ‘pain is now unavoidable so it is now time to learn how to cope with it.’ He goes on to argue that because a CBT approach focuses on thoughts and beliefs (much like Explain Pain does), it’s not incompatible with the idea that the plastic brain can learn to reduce the threat value even further to ultimately “helping them live well with less pain, or perhaps without any pain at all.”

Here’s my concern: Right now there are many people living with chronic pain who have lost their sense of hope. They’ve pursued pain cure after pain cure, and in doing so, they’ve lost normal routines and habits, lost their usual occupations (activities), stopped being around people, stopped working, and have suffered in the true sense of the word – they’ve lost their sense of self. While I applaud the efforts of researchers like Moseley and colleagues, and I think we must continue to seek treatments to reverse the neurobiological underpinnings of pain, at the same time I think we need to look at the psychological and social aspects of our attitudes and expectations towards experiencing pain. And we must think of the negative effects of our emotional response to seeing another person who is experiencing pain.

Is it so terrible to experience pain every day? Speaking as one who does – despite my knowledge of neuroplasticity – my pain doesn’t represent a threat. It’s just an experience. It’s there. I notice it, I can feel it. And the participants in my research similarly acknowledged pain as present – but it didn’t have the emotional primacy that pain can represent before it is explained. In fact, some of the participants said they’d learned important things because they’d had pain. A lot like having a mood disorder (that must be managed), or diabetes (that must be managed), or heart disease (that must be managed), or respiratory disease (that must be managed), perhaps it’s OK to have pain – that must be managed. Because until our research has advanced a LOT further than it has, there are an awful lot of people living with chronic pain, and who will continue to live with chronic pain. And even more sadly, there are an awful lot of people who don’t even get the opportunity to know that it’s possible to live well despite experiencing chronic pain because we (as part of society) still don’t accept that pain can be present without it being a threat.

Sometimes I wonder at our (clinicians and researchers) blind spot. We just don’t seem to be ready to accept persisting pain as something that can be lived with. Is it time to look at our own discomfort with allowing pain to be part of life?

 

Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: a systematic review and meta-analysis. Journal of Pain, 14(1), 3-13.

Cossins, L., Okell, R. W., Cameron, H., Simpson, B., Poole, H. M., & Goebel, A. (2013). Treatment of complex regional pain syndrome in adults: a systematic review of randomized controlled trials published from June 2000 to February 2012. European Journal of Pain, 17(2), 158-173.

Johnson, S., Hall, J., Barnett, S., Draper, M., Derbyshire, G., Haynes, L., . . . Goebel, A. (2012). Using graded motor imagery for complex regional pain syndrome in clinical practice: failure to improve pain. European Journal of Pain, 16(4), 550-561.

Machado, LAC, Kamper, SJ, Herbert, RD, Maher, CG, & McAuley, JH. (2009). Analgesic effects of treatments for non-specific low back pain: a meta-analysis of placebo-controlled randomized trials. Rheumatology, 48(5), 520-527.

Machado, Gustavo C, Maher, Chris G, Ferreira, Paulo H, Pinheiro, Marina B, Lin, Chung-Wei Christine, Day, Richard O, . . . Ferreira, Manuela L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Woolf, Clifford J. (2010). Overcoming obstacles to developing new analgesics. Nature Medical, 16(11), 1241-1247. doi: doi:10.1038/nm.2230