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:
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