“I don’t know what I want to do” – Silent copers?

One of my friends on Facebook said it’s difficult working with someone who doesn’t come up with a goal, or a new direction in pain management, even when they accept that their pain isn’t a threat (it’s hurt, not harm). It sure is! So I thought today I’d review some of the factors that might maintain someone in this “limbo land” where, as a therapist, it feels like you’re doing all the work.

Firstly, let’s distinguish between having pain and being disabled by it. Pain is an experience that people have. It doesn’t live outside a person’s narrative of their life. It always has some meaning in some way, and this meaning makes it pain rather than any other experience.  To quote Joanna Bourke “Being-in-pain is a multifaceted sensory, cognitive, affective, motivational, and temporal phenomenon… people perceive pain through the prism of the entirety of their lived experiences, including their sensual physiologies, emotional states, cognitive beliefs and relational standing in various communities.” (Bourke, 2014, p. 13).

Being disabled by pain involves being unable to do things as a result of pain; the experience and meaning of that experience interfering with participating in daily life. Being disabled can emerge from physiological responses to pain, cognitions about the meaning of pain, reinforcement for behaviour arising from contextual features, and emotional responses to all of the above. In chronic pain, where pain intensity is difficult to reduce (if it can be at all), my main focus is on how I can help a person be less disabled by their experience of pain.

When someone looks for help for their pain, Ferreira, Machado, Latimer, Maher, Ferreira and Smeets (2010) found that the primary reason was associated with how much pain interfered with life. Disability rather than pain intensity is a strong motivator for help-seeking. This suggests to me that we should be able to identify what it is that a person can’t do and use this as a motivating factor for change. But of course it’s not quite as simple as that.

Reasons for not having goals

  • One reason is that people coming for help with chronic pain may have been waiting a very long time to be seen. For example, in Christchurch, last time I reviewed the data around referrals to the tertiary pain management service, the average pain duration before being referred (not even being seen) was four years. Imagine how that might affect someone. Four years of “I don’t know what’s wrong with you”, or “I’m sorry but you don’t seem to be responding well”, or “The surgery went well, I don’t understand why you’re still feeling pain” – it might make you feel slightly demoralised, perhaps a little hopeless. Remember that most people with chronic pain don’t know the point at which they shift from an acute pain problem which should resolve, to a chronic pain problem that, by definition almost, is going to persist. Pain like that just doesn’t make sense. It can be very frightening.

As a result, some people lose hope and feel that they must live very, very carefully in case they do something to increase their pain, or make their problem worse.

  • Another reason can be because of the messages people can be given. Mixed messages usually, and by anyone  – “Be careful, you don’t want to overdo it”, “last time you did that, it took you days to get over it”, “You have wear and tear in your joint [oh, does that mean I should stop so I don’t wear the joint away completely?]”, “don’t have flare-ups”, “you need to let your body/brain settle down”, “pace yourself”.

Some of these messages are ones we give – even enlightened people coming from a Therapeutic Neuroscience (TNE) perspective can inadvertently suggest a person should “take it easy” and “be kind to your sensitive nervous system” – which is all very well, except when the “take it easy” message is never reviewed, and the person learns that a painful flare-up means they’ve been “too hard” on their nervous system. Like the paced activity approach, both of these messages need to be reviewed so the person learns how to deal with a flare-up then resumes gradual increases in activity level. Erroneous messages from the media (yes! that “text-neck” meme that’s going around!), medical professionals, family and friends can all maintain avoidance, even in the face of TNE that reaches the head but not the heart.

  • Some people can find it very hard to think of goals because they’ve never learned about goal-setting. Goal-setting is a learned behaviour, something that health professionals learn how to do, business people learn how to do – but it doesn’t always transfer into daily life. Some people live in the flow of life, going with whatever happens, responding to situations rather than setting out with a purpose. Sometimes this happens because they live in poverty and can’t think beyond today. Sometimes it arises because they’ve had so many negative experiences when they have tried to move in a particular direction that they’ve given up. Sometimes it’s part of a family context, perhaps a cultural context. I suspect goals and achievement are a very eurocentric phenomenon, and if you’re from a different culture, perhaps this doesn’t make sense – because family or group goals are far more meaningful.
  • Some people may have contexts in which making change is extraordinarily difficult. A scenario I’ve met before: the person with pain who hasn’t worked for some years; the two parents – one has a long-term disability, the other is unemployed, the sibling who is on a sickness benefit. No-one gets up before 11.00, no-one works, and there’s little or no support for the person with pain to make any changes within the situation. Even if pain is reduced, it’s going to be difficult for a person to do anything differently because others in the family are also stuck.
  • Some contexts are actively punitive when a person begins to make changes. When another family member needs the person to “be cared for” because it meets his or her needs, it’s going to be hard for anyone to make a change.
  • Some people hold strong ideas about their performance, perhaps holding up an idealised vision of who they were before this all happened – now, even beginning to think about making a change highlights the discrepancy between who they are now and who they used to be, not exactly a great way to encourage change.

I haven’t started looking at what you can do to help someone step out of the glue that these factors can be. Don’t worry – that’s next week’s post! But in the meantime, here are some of my older posts that might be useful:

Individualising explanations with case formulation Coping with pain: A motivational perspective goals-values-and-motivation

Bourke, Joanna. (2014). The story of pain: from prayer to painkillers: Oxford University Press.

Ferreira, Manuela L., Machado, Gustavo, Latimer, Jane, Maher, Christopher, Ferreira, Paulo H., & Smeets, Rob J. (2010). Factors defining care-seeking in low back pain–A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi: http://dx.doi.org/10.1016/j.ejpain.2009.11.005


  1. As one who lives “in the flow of life” and sets no goals apart from doing what needs to be done, might I suggest that trying to make sense of a pain experience would, at least for me, constitute a significant interruption to or perturbation of the flow of my life? Rather like attempting to open my front door and finding that the key no longer fits the lock. Here was something that I could do without thinking that now demanded my full attention.

  2. Exactly! It’s by trying to do everyday things that people begin to “make sense” of their experience. Encountering these obstacles forces people to re-think their self-concept – “who am I?”
    At least for a while (according to my PhD research), people are not in a position to even consider future life – they’re in Limbo Land, as they often say. I suspect health professionals may be trying to start goal setting too far in advance of where people are, at times.

    My belief is that clinicians could begin by seeing where people with pain are along the process of making sense, and set goals accordingly. Perhaps the first “goal” is to obtain an explanation, or understand the normal fluctuations and variations of pain, and look at how to help people go through this stage without losing too much of what is important to them. It’s perhaps only once people have accepted that hurt doesn’t equal harm and that there is no “cure”, AND that they have something meaningful they want to do, that I think people are ready to begin to set goals. If they indeed must set goals.

    Maybe the next step is more around deciding what’s important to do – an area in which occupational therapists have probably the greatest level of skill. This is the stage in which people begin to build a new self-concept or self-identity, one that incorporates the reality of new limitations, but also incorporate the important things from the past self-concept although maybe being enacted in a different way.

    1. Bronnie, why did you make the sudden jump to issues of self-concept? Someone may have changed the lock or I may even be using the wrong key. Other possibilities will spring to mind, long before I may come to consider that I have lost complete touch with reality.

      1. I don’t think people always feel they’ve lost touch with reality, but reality doesn’t seem favourable, things that were taken for granted require additional thought (like, I could drive for half an hour without thinking about it, now I really want to stop after 10 minutes!). When these changes continue beyond what people think is acceptable (or they’ve encountered/seen in other people in the past) then I think the need to revisit self concept arises. Sometimes people do just need a new key, or the lock may have been changed, and as long as those changes aren’t too different from what is familiar and “part of me”, then maybe self-concept doesn’t need revisiting. But for others, the changes are far too big, or they hold very tightly to one way of opening the door, that they do need to stop and rethink what makes me “me”.
        As Nic says, some people revisit this and begin to flourish – looking at a new “me” can be an exciting and invigorating thing – but it does take time to let go of the old before juggling things to form a new “me”.

  3. Your first reason you listed for lack of goals sound very much like the concept of Marty Seligmans “learned helplessness”. It arises from randomly occurring bad things happening, much like the experience of chronic pain. This often leads to depression, as is also common in chronic pain. Chronic pain can also predictably lead to “languishing”, which is how you seem to describe this group of patients. Languishing may be conceived as emptiness and stagnation constituting a life of quiet despair. People who are languishing might desribe their life as “hollow”, or “empty”. Does this match your clinical experience? The good news is that more recently “learned resilience” has been studied and a literature has developed around moving from languishing to flourishing which can give some ideas of where to begin helping these people.

    1. Yes, I can see this as “a life of quiet despair” – people may just lose that belief they can make changes. And the literature on learned resilience is very encouraging – I do think people with chronic pain can flourish and have exciting lives as a result of learning from/with their ongoing pain.

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