In New Zealand at least, obtaining training in pain and pain management is fairly restricted. Two papers specifically on pain and pain management for ‘all-comers’ are run through my Department at University of Otago, Christchurch, but apart from this – I’m not sure of any others at postgraduate level. Occupational therapists have the paper run through Otago Polytechnic. Postgraduate training in chronic pain anywhere in the world seems to be reasonably restricted.
What this means is that many health care providers in New Zealand are working in the field with quite limited knowledge of the unique management required in chronic pain. Some transfer their skills from acute pain, with resultant problems for the patients when the acute model fails. Others treat chronic pain patients using mental illness as their model. Neither of these two models is inherently incorrect – but neither of them are adequate or appropriate for managing chronic pain.
There are some unique characteristics of chronic pain that make direct translation of CBT, for example, not entirely straightforward. Probably the area that is most different is the place of ‘maladaptive’ or ‘erroneous’ thinking. A good number of thoughts and beliefs that people have in relation to their chronic pain (such as ‘I feel guilty because I can’t be reliable’, ‘If I do this today, my pain will increase tomorrow’ and so on) reflect reality and are not cognitive distortions.
Yes, some people with chronic pain do have an Axis I diagnosis – and some have Axis II. They may be depressed. They may be anxious. They may be quite rigid in the way they view the world and what they can or cannot do. What people with chronic pain fear is having their pain minimised and being told to ‘just pull yourself together’.
Feelings of isolation, being different
Chronic ill health of any kind just because of its debilitating effect on health can be isolating. No-one else can feel your back pain. No-one else can go through your blood test. And it’s the individual who has to set limits on what he or she can do – no-one else. This can feel very lonely. If the person also holds a core belief that ‘the world is just’, the person can feel anger and frustration, asking ‘why me?’
Beck suggests two main categories of core belief: helplessness and unlovability. Both of these can be activated with the onset of chronic ill health. It’s hard to feel in control when pain dictates every action, and for many people being unable to do what they value (and what they believe others value about them) can lead to feelings of isolation. Although pain is not disfiguring, this in itself can be difficult for people to cope with – no plaster cast, no scar, no thermometer telling people how sore they are today.
Disparity between motivation and capacity
While all of us have to make choices in how we spend our time, there is a range of activity that is considered ‘normal’ in the community. When people are depressed, motivation to participate drops – with people living with chronic pain, motivation itself may not drop but the capacity to do what the will wants can be quite limited. This can be very difficult for people who have, until the onset of their pain, been ‘high achievers’. It’s especially difficult for people who have very strong rules to live by – about the need to meet expectations – and can generate strong negative emotions. The thoughts themselves may well reflect reality ‘I can’t do this’ or ‘I used to be able to do that’, but the underlying rule ‘I should be able to do this’, or the attitude ‘It’s awful that I can’t do that’ influence the emotions.
Asking for help
Independence is strongly valued in many communities. In fact, in New Zealand, we pride ourselves on self-reliance, coping, being the plucky little country that defies the odds! When a person, because of pain or fatigue, needs to ask for help, it can really affect his or her self esteem. The feelings of guilt and powerlessness, and of being a burden, can be difficult for the individual to experience. Unlike mental health problems, the guilt experienced in this situation isn’t generated by low mood – the person may actually be a burden on others – so challenging that belief directly may rebound. It’s more helpful instead to help the person make allowances for their individual situation, become more flexible in how they apply their ‘rules’ and develop self assertion skills.
Judgement from others
Especially for people with chronic pain, having an ‘invisible’ disorder creates doubt and suspicion in others, and can lead to feeling stigmatised and discriminated against. This situation, especially for people receiving compensation and therefore undergoing multiple assessments – many of which delve into areas of the person’s life and coping that for most of us remain private – can be incredibly difficult. It can activate schemas associated with shame, guilt and being ‘different’ that will quickly erode even a strong person’s sense of self.
As I’ve indicated above, there are many changes that influence how independently a person can function when they have chronic pain. If they are a recipient of compensation, they are obliged to attend assessments and the reports from those assessments are disseminated to any health provider next seeing the individual. At the same time, the person is being challenged to give up areas of independence in what they do during the day, whether they go through painful procedures (blood test anyone?), and for many, even how long they sleep or whether they can choose the type of work they do.
For some people demonstrating negative emotions has been taboo, and they now experience so many emotions it is frightening, as well as by experiencing these strong feelings they hold concerns that others will abandon them, or that their feelings will overwhelm them.
Each of the above aspects of disability can activate an underlying core belief about the person, their world and their future. Each one may well generate negative emotions and altered behaviours. And each of these aspects represents someone’s lived reality. The person with chronic pain doesn’t need to be told that their beliefs are ‘erroneous’ or ‘maladaptive’ – this only adds to their woes! ‘Oh no, not only do I have an aching back, I also have stinkin’ thinkin’!’
As a result of these influences, yes, some people will develop frank depression, or if they had an underlying vulnerability to anxiety they may well develop an OCD or have panic attacks. Does this mean they have a mental illness? Well, sort of – but I don’t think that giving a person a label helps very much. Especially if the treatment then starts to ‘challenge’ thoughts and beliefs that are ‘erroneous’ but reflect the reality of living with a disability.
Maybe it’s time for a new cognitive behavioural therapy – one that directly addresses the language and experience of people with chronic pain and disability. And it’s definitely way past time that specific training in cognitive behavioural therapy for chronic health problems was readily available in New Zealand so that people with chronic pain don’t ever get the feeling that their pain is ‘all in their head’.