Pete (not his real name) has long-standing pain. He has ankylosing spondylitis involving especially his sacro-iliac joints, and often his intercostals, making it difficult to take a deep breath. He’s in his mid-40’s, and he’s had his diagnosis for just over 20 years. He takes a cocktail of anti-inflammatories, with omeprazole to counter the gastro-intestinal effects. He also takes paracetamol three times a day when his pain levels are increased. He’s also a keen walker, paddler (kayak), cyclist, and diver. Not someone who sits around!
So, how does he do it?
As part of my series on ‘resilience’, I want to spend some time considering how people who cope well with their pain go about doing things that are important to them. There is, not surprisingly very little information available on how people like Pete go about their lives – they simply don’t turn up in university hospitals or pain clinics!
When I go through the chronic pain literature about ‘copers’ in chronic pain, I have found that there are only a few studies that describe what a person who copes well looks like. One is Paul Karoly and Linda Ruehlman’s 2006 paper ‘Psychological resilience and its correlates in chronic pain: Findings from a national community sample’. This paper uses a profiling tool to identify a subsample of people who have chronic pain with high scores on a Severity scale (at least 1 SD above the mean) combined with low scores (at least 1 SD below the mean) on scales assessing Interference and Emotional Burden, using their screening tool the Profile of Chronic Pain:Screen (PCPS).
Their study went on to examine the differences between those who were in this group and those who didn’t score so well. Their findings suggested that ‘coping style, pain attitudes and beliefs, catastrophizing tendencies, positive and negative social responses to pain, and health care and medication utilization patterns’ were different between the two groups. Coping styles were more ‘active’, while attitudes and beliefs were more ‘positive’. Catastrophising was less in this group, and social responses were more practically supportive and less ‘hindering’ than in the group who had more trouble managing.
Karoly and Ruehlman suggest ‘that resilience can most usefully be seen as being linked cognitively, emotionally, socially, and behaviorally to a set of higher-order selfregulatory (executive) skills that allow persons with moderately high levels of pain severity to navigate toward their goals in a hopeful, positive, and efficacious manner.’
So, what does this look like in my friend Pete?
Well, most of the time he reports his pain levels are between 6 – 8 on a numeric rating scale. On particularly bad flare-ups, he reports his pain is up to 9 (compared with kidney stones that he rates at 10!). He says that most of the time he ‘knows’ he has pain, and that it never really drops below 5. Using the PCP:S, he scored 2 SD above the mean for Pain Severity, and 1 SD below the mean for Interference and Emotional Burden subscales. So, he fits the criteria for Karoly Ruehlman’s ‘resilient’ sub-group.
I asked him about what he does when he has planned to do something ‘important’ on a pain flare-up day.
He says he either ‘ignores’ his pain, knowing that he’s not doing any damage to himself, or he plans to do it another day when his pain isn’t bothering him as much.
The sort of activity he thinks is important is one of his recreational activities, like going for a long (2 hours or more) walk on one of the tracks nearby, or maybe going out on the kayak for an hour or so (including loading and unloading the kayak from his vehicle).
‘Ignoring’ pain has been demonstrated to be ineffective – as has distraction. It seems that in experimental and chronic pain settings, ignoring pain or distracting from pain leads people to poorer outcomes such as higher pain afterwards (eg Goubert, Crombez, Eccleston & Devulder, 2004).
Yet this is what Pete says he does. I wonder what is going on? Does he do it differently from people with problems coping with chronic pain? Or maybe what he calls ‘distraction’ or ‘ignoring it’ is something slightly different.
I wonder whether Pete is also focusing more on the enjoyment of the activity than on ignoring the pain while he’s doing it, when many of our patients focus more on ignoring the pain than on enjoying the activity. When he finishes his activity, he does admit to using positive coping statements and some of the more ‘passive’ strategies that you and I might use – such as a hot bath, massage or even resting. (Let’s not tell my patients that!)
His attitude towards his pain is that while it’s not ‘too bad’, he knows he’s not harming himself so his pain is simply a nuisance. When the levels do increase, he admits that it can get on top of him – he gets irritable and frustrated, but he does remind himself that his condition varies periodically. So part of his approach is to do as much as possible during times he feels good, live life to the full, while during times his pain is really bad he eases up a little. He almost describes what I would call a ‘boom and bust’ pattern to his activity!
It seems from this brief account that the skills Pete uses are not so different from those my patients use, but his attitudes may be different. He also shows flexibility towards achieving things he believes are important – if he can’t do it one day, he’ll try another day. If he can’t do it one way, he’ll try another. He admits to reminding himself that he isn’t harming himself although his pain is quite bad – and that despite this knowledge, he can find it difficult to ‘get motivated’ during flare-ups.
I’m looking forward to finding out more about how people like Pete – and others – live and do good things in their lives despite having pain that I think anyone would acknowledge as moderate to severe. What are your thoughts about the differences between resilient people and people who seek treatment? Drop me a line and let me know!
KAROLY Paul, & RUEHLMAN Linda S. (2006). Psychological “resilience” and its correlates in chronic pain : Findings from a national community sample Pain , 2006 (123, no1-2), 90-97
Goubert, L., Crombez, G., Eccleston, C., & Devulder, J. (2004). Distraction from chronic pain during a pain-inducing activity is associated with greater post-activity pain. Pain, 110(1-2), 220-227.