Betsan Corkhill, friend of NOI, has kindly written the following blog
David has written about the dangers of ‘Explain Pain lite’ on several occasions so I thought I would add my observations to the discussion pot …
The watering down of Explain Pain (EP) tends to focus on the psychosocial – pain in the brain, pacing and managing it in order to learn to live with pain but try to function better. Successful EP, on the other hand, starts with the biological fact that it is possible to influence positive neuroplastic / bioplastic change. It takes into account the full complexity of pain – its whole-person, biopsychosocial nature, peripheral and central drivers alongside context, meaning, and everything else that contributes to pain.
There is a trend towards thinking we need to simplify the pain message in order for patients to ‘get it’. I think this is a mistake. I also think it conveys a subliminal message that they cannot possibly understand what we do – that somehow we are more capable. People pick up on these cues and it immediately erects a barrier to effective communication (a subject for another blog post!).
The key is communication
The real skill lies in being able to communicate the complexity of pain in a way that each person understands. This will inevitably mean changing the delivery to suit the individual, so that it holds meaning for them.
In my experience, when a person ‘gets’ the complexity of pain there is a realisation like a light that goes on – “ah that’s why my pain is so difficult to treat”. “Everything I do, everyone I meet, even the radio and TV programmes I watch affect my pain.” We can then turn the complexity of pain around to make it work for us – many things make my pain, therefore I have many ways of changing my pain. It gives us lots of avenues.
I am reminded of the principle of ‘marginal gains’ adopted by the highly successful British cycling team in the 2012 Olympics
“Make 1% change in ten things and you get 10% change overall.”
Choose your words wisely
Tied into all this are the words we choose to use when communicating our message. Here in the UK, ‘pacing’ is often at the core of a ‘pain management’ programme. It is described as a way of avoiding ‘boom / bust’, keeping under the flare-up line, similar to ‘finding your baseline’. All OK so far… or is it?
Let me ask you a question… If you had ongoing pain would you be happy just ‘managing’ your pain and ‘pacing’ your life? Would these words give you hope of living well? Would it be worth the effort to make changes? People who have pain tell me that they view the word ‘pacing’ as restrictive, boring, slow, taking excitement out of life, perhaps even taking away hope – “I have to pace my life and will always have to – this is as good as it gets”.
Words, and the combination of the words you choose to convey your messages, are so important.
Sticks and stones may break your bones but words can prolong pain forever…
If you combine ‘pacing’ with the words ‘pain management’, it takes away any hope of improvement. In addition, it is often stated at the beginning of a pain management programmes that there “isn’t a ‘cure’ for chronic pain”, in order to make absolutely clear that this isn’t the aim of the course. The aim is to give you ‘coping skills’ to ‘manage pain’ – to live with pain but function better.
I think this combination of ‘pain management’, ‘pacing’ and ‘no cure’ means you’ve lost before you’ve even begun. You’ve created a massive ‘DIM in the room’ that doesn’t go away!
I have spent a lot of time mulling over better words for my programme. It is something I will need to continue to refine and expect to do so on an ongoing basis. I don’t run a pain management programme, I run a ‘Wellbeing for People with Pain’ programme. It started life as a ‘Wellbeing for People in Pain’ programme. Following a discussion with my first group, I changed this to ‘Wellbeing for People with Pain’. We thought the term ‘in pain’ inferred that pain was ‘bigger than you’, that you were ‘in it’ whereas actually pain is in you and that you can nurture ‘you’ and learn to live well, and in the process, change pain.
Also by calling it a ‘wellbeing’ programme the issue of ‘curing’ or ‘managing’ pain or not doesn’t raise it’s head. The desire to ‘cure’ pain is something I cover in the session ‘Getting acquainted with pain’. Here we talk about needing pain to protect us and ‘putting pain back in its proper place’ where it works to protect appropriately. ‘Curing’ would mean we wouldn’t survive so it’s not a desirable outcome.
A new suggestion – baselining!
I don’t use the term ‘pacing’ either. Taking a cue from David and Lorimer’s Twin Peaks Model to find your baseline, I have chosen to use the term ‘baselining’. In the business world ‘baselining’ is used to describe ‘finding your baseline of activity taking into account all your available resources’. This seemed very apt to me. A person with pain’s resources would include, available energy, financial, social, family support, knowledge etc…. so it can reflect the complex nature of pain and what each person brings to the mix.
‘Baselining’ is about finding a firm foundation from which you can nudge forward to create new baselines, rather than something restrictive. It represents a firm foundation you can build on – a starting point to creating a different future. A more hopeful message than pacing, I think.
Moving away from words and terms we may have grown into a habit of using takes courage. Writing and delivering an educational programme for people with pain is a challenge and should remain a challenge that you will need to keep on refining. Successful EP requires you to continually adapt and evolve your knowledge and delivery whilst having the confidence to explain the full complexity of pain.
– Betsan Corkhill
Betsan is a Wellbeing Coach specialising in helping people with long-term medical conditions, particularly pain. She has a background in health and physiotherapy and recently obtaining funding in the UK to design and run a ‘Wellbeing for People with Pain’ programme. She has also written ‘Knit for Health and Wellness’ and continues to write, blog and educate globally.