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.
As a sociologist who’s taught public health, I’m wary of using the term biopsychosocial. That refers to several dimensions understanding which involves different disciplines each with their own, or each with multiple, conceptual frameworks. They aren’t compatible. And when you do work through an analysis on those three dimensions it ends up looking deterministic.
As a participant in physio for regular back pain, my practitioner introduced the concept of doing what’s needed to enable me to do what I want to do. I find that framing of the task provides hope and produces energy – it feeds a key SIM. I’ve drummed up some less bleak terms than pain to refer to my experiences – stiffness, arcing up, grumbling, or facet joint dance party!
This reads quite reductionist to me, but perhaps I have misunderstood. In the context of the human experience of persistent pain and morbidity, for example, how would you justify that the biomedical-biological/psychological/social components ‘are not compatible,’ outside of strict reductionism? I’m also intrigued by how your subsequent analysis reaches a ‘deterministic’ conclusion, that reads very gloomy indeed!?
My understanding is that the signalling cascades (immune, inflammatory, autonomic, etc) are intimately overlapping, largely irrespective of the source of stimulus (chronic physical injury, psychological stress, social stress, etc), which is the basis of my question.
Further, I would be interested in others thoughts of extending the term ‘biopsychosocial’ to ‘eco-biopsychosocial,’ if it hasn’t already been done. If we consider factors such as climate change, landscape change, biodiversity loss and modern diet, together with our emerging knowledge on how these affect human health, perhaps more formally considering the ‘eco’ in ‘biopsychosocial’ is warranted?
Max – that’s an interesting suggestion.
I think you are right – biopsychosocial doesn’t capture the whole complexity. It’s not something I had considered before – it’s another term we tend to habitually throw into our language and articles just to illustrate we are considering a broader perspective…. whether we do or not…
Eco-biopsychosocial would capture the environmental factors, although given the complexity of pain we could end up with a very long word! 😉
Thanks Betsan, useful feedback.
Just for reference, Cambridge Online Dictionary primarily define
Ecology as: “the relationships between the air, land, water, animals, plants, etc., usually of a particular area, or the scientific study of this.”
So as you have pointed out, the ‘eco’ in ‘Eco-biopsychosocial would allude to the aspects of our environment external to the body and how these may affect rates of human morbidities, such as chronic pain.
Ecobiopsychosocial (biopsychosocial was a clumsy word anyway and adding ‘eco’ is quite easy ) is worth a separate discussion thread. I think it would be really worthwhile.
Thanks David, that’s well good enough for me.
I agree that Eco-biopsychosocial has a nice sound to it, potentially makes one think more about what biopsychosocial actually means! Also makes sense from the perspective that the environment and ecology are the primary drivers of human evolution.
I will definitely take a closer look at that and see if we can solidly justify it…
I am one of the very lucky people who took part in Betsan’s first Wellbeing For People With Pain course.
It was quite simply excellent.
We were treated like intelligent human beings who wanted to get the most out of life despite living with pain. We were given a very clear idea of how pain “works” and that we have the power to change the way our brains are wired !
What a revelation that was !
Now I don’t feel “broken” or a failure for not managing to get the “pacing” right . I don’t choose pain killers or long periods of rest to recover from a bout of pain .
Instead I use a variety of methods to calm my system down . For me this will include some diaphragmatic breathing , some guided visualisation , some gentle movement to music and some craft work ( knitting or crochet ).
I see it as gently nurturing my body to give my brain the message that I’m not in danger , there is no need for this pain , I’m safe.
I’ve also been working hard to regulate my sleep pattern . This went awry after a sports injury forced me to lie still for weeks , waking up to take regular pain medication every few hours . Now I go to bed at a regular time , read for a while and put the light out by midnight. I have a sunrise alarm that wakes me gently at a regular time too. When I wake in the night , I follow the diaphragmatic breathing and am asleep again in minutes.
After 20 plus years of interrupted sleep , feeling exhausted most of the time and “beating myself up” about sleeping late , in just a few months my sleep is regulated. That in itself has transformed my life.
So what’s the difference ? Why did it work this time when I’ve been failing to get it right for so long ?
The advice I’d received in the past was not to stay in bed “tossing and turning”.
To get up , go to another room , drink hot milk /eat a banana etc etc . Pretty soon I was waking up regularly in the night looking forward to my hot milk and banana ! Then sleeping late , feeling like I was missing the day …..and hating myself .
Now thanks to a better understanding of how my brain works , I do things very differently :
I don’t put on the light , I don’t leave my bed , I want my brain to get the message that all is well and it’s safe to sleep . In other words I use my thoughts to soothe my brain rather than running away with the idea that I need to DO something. And it works !
Now that I can get some deep sleep , I rarely wake up in pain . It’s as simple as that !
The Wellbeing For People With Pain course has put me back in charge of my own health , instead of being a passive recipient . Being a passive recipient is a very short step ( to me ! ) from being a victim , and who wants to be in that position ? This course has completely changed my way of dealing with my long term health issues and transformed my life . It’s as simple and as monumental as that !
Thank you Betsan.
Thank you Sally. So pleased for you.
It was a real pleasure to work with you and the others in the group.
So pleased to see that you are all keeping in touch through the Wellbeing Friends group and enjoying meeting up to support each other on an ongoing basis. I will definitely sneak into one of your meetings for a coffee soon!
Betsan , you’re always welcome !
I’m spreading the word about your excellent course but inevitably not everyone who would benefit is able to attend due to limited places/geographical location.
At the risk of adding to your busy workload , I’d like to ask will you be writing an accompanying book to The Wellbeing For People With Pain course please ?
I have friends both in this country and in the USA who are very keen to read it if you do !
I am a Physiotherapist working out here in Australia in the field of Chronic Pain treatment. I work with some excellent Psychologists and we are slowly overhauling our program to try to reflect some of the things you are talking about. In fact, your blog really struck a chord because it stands up and shouts about the things I have been thinking every time we run a group!
The Psychology approach here is ACT- Acceptance and commitment therapy which does run down that road of telling people that they need to live with and not fight their pain. Its a delicate path- I think that it is important to come to terms with the fact that Pain is not reflective of tissue damage and that it can be influenced by many different inputs and paying attention to it in a nurturing, compassionate way has been show to be helpful in our programs.
However, I sometimes find myself wincing at the language used in the book as I am coming to understand how subtle our DIMs can be!
We do use pacing, but only in the context of goal setting and I take a lot of time reminding participants that “pacing” is only a trick we use to fly under the brain’s protective radar so that they can aim to do more.
Do you talk about Dims and Sims in your program, or do you hold individual sessions to help identify these with people?
I would really love to find out more about the structure of your group as I think it is the way forward.