My response to comments is that at this time self-efficacy (confidence you can do things despite your pain) is really low. Self-efficacy, like love, isn’t a finite resource though, although the energy required to keep on coping (balancing all the multiple demands that persistent pain has on you) can exceed current capacity. Both self-efficacy and energy are renewable resources and change over time. Love expands as we add to it. Self-efficacy increases as we have more successes. Energy renews as we find ways to fill our buckets up faster than the holes leak it out.
This post was written for health professionals, health professionals who may be inadvertently undermining what little self-efficacy an individual has by promoting a focus on what they do, rather than on what the person is using to deal with their situation. Health professionals who may well be told they must record pain intensity before and after Every. Single. Treatment. Who may not recognise just how much effort it has taken for a person to come in for a session – especially when feeling guilty or ashamed that “homework” hasn’t been achievable.
I think pain heroes do need to be celebrated. All we hear about in the media are people suffering, wanting techno-fixes and ways to get rid of their pain without recognising that for many people pain reduction just is not possible. For those who are able to live well, why not applaud their efforts – I’m not talking about their ability to get rid of their pain, but their ability to remain focused on what gives their life value and meaning – even if that’s a small fraction of what they were able to do prior to developing their pain.
I get that sometimes “pain heroes” who do amazing feats are held up as “normal”, but at the same time that’s not the story played out in most of our general media, I wonder if it’s more like the stories bandied about as examples of the latest new-fangled treatment. I often wonder if there were long-term follow-ups carried out on those folks, would they still be as positive as they were at the time their story was made?
Pain reduction as a goal doesn’t improve confidence to do activities successfully despite pain. Except in as far as a paper cut might not interfere as much with doing life as a migraine. At least some of the confusion arises from misinterpreting the measure: Pain Self Efficacy Questionnaire specifically uses the phrase “despite pain”, but I often hear people describe it as if it was “without pain”. Perhaps there needs to be a different measure “Self Efficacy Questionnaire for Doing Things With Only A Little Pain”, but currently the only measure of pain self efficacy is the one developed by Michael Nicholas.
I think it’s easy to misinterpret research about resilience as if it’s suggesting “thinking yourself out of pain” is the goal. It’s not. And that study in particular doesn’t say that, while neither did mine. In fact, “thinking yourself out of pain” isn’t achievable – good research suggests that attempting to suppress your attention to pain actually rebounds. It’s also not Pollyanna and pretending that pain doesn’t have an impact. What I think it is is a process of coming to grips with the fluctuations we all experience with pain and energy, recognising what we can and can’t do, being unafraid of our pain and knowing that it’s not going to kill us (though we may wish we could die from time to time), and finding small ways to go with our pain rather than fighting against it, wishing it wasn’t present, pretending it doesn’t have an effect when it does, trying to ignore it, or buckling underneath it and losing ourselves.
In the pain management services I’ve worked in, and the approach I take both for myself and with the people I try to work with, using pharmacological, neuromodulatory, surgical and procedural approaches to reduce pain has always been integral to the overall plan. Sadly I have not found anything that provides any pain reduction for me, I have no option but to keep going without anything. If there are things that reduce pain – and the side effects, adverse effects, or interference with the way you want to live your life are acceptable – that’s fantastic! The distinction I made in my post is the focus on pain reduction as the primary outcome. The sense that life cannot go on without pain reduction. The thing is, life does go on whether we’re part of it, or not (and of course we can choose not to go on, but that’s death, and not an option I’d ever recommend). So, one foot after another, life does go on. I’m arguing for more than a focus on pain reduction. Because that seriously is the only outcome considered by some professionals – and some people with pain. And in pursuing only pain reduction, people lose sight of what already is going on around them. Life goes on hold, and people spend all their energy, time, and focus on how to get rid of pain. That is not living.
Wouldn’t it be great if we had something for those who find their pain overwhelms them. Sadly after working in this field for 30 years I do not think we are any closer to that elusive goal than we were when I began, except perhaps people aren’t going through quite so many useless and invasive surgeries with really nasty side effects as they did in the 1980’s. Do you not think there are so many people already seeking new and innovative treatments? And what would you like to have happen to those who may never see any of those new treatments reach them? It does not have to be an either-or situation.
What I’m finding is there is so much emphasis on pain reduction that few people are willing to provide what is already known to help people’s distress and disability. The unsexy, somewhat boring-but-necessary evils of self-regulation, reframing pain, setting teeny tiny goals, maintaining consistency, activity management, day in and day out exercise programmes, plodding through each small bump along the way. That is the reality for the many, many people who have, like you, not found anything wonderful to whisk the pain away. Demanding better treatments may not bear fruit in your life time. The only new class of analgesics are the triptans for migraine, and they were first discussed in the 1960’s, and only released onto the market in the 1990’s. Do you think there’s something hidden away for only “good” people? Seriously, there is SO much research being undertaken for all manner of wonderful treatments – but I haven’t seen much of this bear fruit in the way that you and all the other people who live with persistent pain would really like. Including me.
So, let me say, in case it wasn’t clear.
I am NOT suggesting there should be no medical interventions for people.
I AM cautious in terms of how successful they are (that’s me, the skeptic, been doing this for long enough to see the trendy things fail in the real world).
I AM suggesting it’s not worth putting life on hold in the hope that there MAY be something “just around the corner” because that’s not the case right now.
I AM arguing that clinicians who focus on pain intensity as the exclusive outcome that matters need to stop and think about what it is that people want to DO with that newfound energy if their pain did suddenly disappear.
Sometimes, in fact often, those things can be done with pain alongside. So it hasn’t happened in many people’s cases – that’s because pretty much nothing DOES work for everyone. But that doesn’t mean we should stop working really hard to continue to help people do what they can do, not letting what they can’t do get in the way of what they can.
And that is what I try to do both personally and professionally, as a person, clinician and educator.