Because of time and energy limits, I have decided to change my post slightly today. I was going to give some references and discuss values and goals a bit more, but that will need to wait until I have just a bit more time. I’m sorry.
I’m working with a new group of people in the three-week pain management programme. We were discussing what they wanted from the programme, because one of the challenges I put to them is that if nothing has changed in their lives in six months time, then there is little point in staying – so what do they want?
Often that challenge is met with stunned silence. It’s like they have never thought about what they want for such a long time that it’s really hard to know what to say.
It’s at this point someone will say ‘I want to accept my pain’. And then I ask ‘what does acceptance look like, what do you mean by accepting your pain?’
Lots of discussion ensues with this one – someone will say ‘but doesn’t accepting it mean you give up hope?’, another will say ‘Oh I’ve accepted my pain but…’, another will say ‘I’ll never accept my pain’, while some will talk about being able to get on with life despite the pain will mean they’ve accepted it. Some think that accepting means liking their pain, which often gets others saying ‘oh but I could never like my pain’ (well, who would?!). Finally someone will say something like ‘accepting might mean I just stop fighting against it and go with it’.
Yesterday, someone said in this session that they had found that fighting the pain only meant they felt angry and frustrated and futile – and they still had the pain! So they’d try to go with the pain, and had found that at least they felt more peaceful about it, and some of the emotional sting of having pain went.
The ACT approach talks of the fact that trying to control the uncontrollable is the problem. Chronic pain (and other negative experiences) can’t be controlled to a large extent – and even when chronic pain can be reduced using medications, the emotional effect of having limitations placed on function (in the minds of the person experiencing pain) is often what the person is trying to control. The efforts people put into not flaring up their pain, not having to experience fluctuations of pain invade their lives – and the pain itself is still there.
The range of things that people do to avoid pain fluctuations is incredible – from seeking all manner of medical and nonmedical treatments (often with unpleasant side effects, and certainly expensive both in terms of money and the time taken to attend the treatments) to hardly moving at all, limiting engagement in almost every activity including relationships, family, work, leisure… and the pain is still there, and does its thing, coming and going, peaking and ebbing… What saddens me is the amount of energy spent doing all these things to overcome, control or ignore the pain, and that energy could be spent living!
I’m a newbie at working with the ideas of acceptance and what ACT calls ‘willingness’. But one thing I do know is that there is a huge cost attached to trying to resist pain, or to hold onto control.
The idea that all pain must be abolished or controlled or life is not worth living is pervasive in our society and especially our health care system.
Now I’m not saying I want a tooth pulled without anaesthetic, or that I’ll have no pain relief for appendicitis! But with chronic pain, once the evidence-based medical approaches have been systematically worked through, the chance of completely removing the pain of many people is slim. Often the side effects of medications and other procedures are unpleasant. The search itself for a way of controlling pain is time consuming and energy sapping. Some people, despite medical best efforts, will continue to experience pain that is then going to fluctuate, because that is the nature of pain.
I don’t know when is the right time to start considering that pain will not completely go, or when is the best time to start becoming willing to experience fluctuations in pain without trying to control it. I suspect it’s quite early on in the piece, especially if we’re looking at the evidence from the pain-related fear and avoidance model. It’s fear that the pain will overwhelm that is so disabling – because fear is a negative feeling that most of us try to avoid and attempt to control.
Perhaps one thing I’m learning about acceptance is that it’s not an ‘all or nothing’ thing. I don’t think we step from one day trying to control and the next allowing it to be. I think it’s a process as people recognise that pain is present despite best efforts to control or avoid it, gradually experience that it is a variable experience with peaks and ebbs, and then gently make space for it – and start to do that things that are important and valued in their lives.
My hope for the people on the programme at the moment is that some of them will start to feel differently about their pain, and begin the process of moving from being a ‘pain patient’ to being a ‘person who happens to have pain’.