Last week I had the privilege to talk to a national gathering of occupational therapists, physiotherapists, nurses and educators from Arthritis NZ. I presented my Theory of Living Well with Chronic Pain which is the theory of re-occupying self to achieve self-coherence after developing chronic pain.
To give you a bit of background, in this theory which was developed using classical grounded theory, I identified that the thing that goes as soon as pain doesn’t fit the usual acute pattern is the sense of self-coherence – life doesn’t make sense any more. As so many people have said to me about their early experiences with chronic pain, “I don’t feel like myself any more”. The things we take for granted like our habits, routines, the things we can expect from ourselves (like how long it takes to do something, how much we can get through in a day) get scrambled by this invasive experience that takes over. In an effort to make life more coherent, many people stop doing things they enjoy so they can focus on just. keeping. going.
I identified that there are three important processes that help people when they’re making sense of their pain: the first is diagnostic clarity, then symptom understanding, and finally occupational existing. When these three processes are complete and in the presence of both a trustworthy clinician and occupational drive, people begin deciding – deciding whether to seek more treatment so they can return to the old normal, or take the bull by the horns and get on with life as it is. After deciding, people begin occupational engaging, using coping and they can finally begin future planning again.
I have a suspicion that if we asked a person who was living with chronic pain where they would put themselves in this process, we’d get a fairly accurate idea of what their clinical needs might be. Perhaps we’d understand what their focus is, and we’d be able to provide them with input targeting what they identify as important rather than what we think they need.
For example, if we look at the illustration below (and“click” for a pdf copy of it), when someone is unsure of their diagnosis we might need to check their understanding of what the diagnosis means. Does it fit with their experience? What’s the prognosis and does the person understand this? Has that label been interpreted accurately? Does the person know that it’s chronic/ongoing and that the pain is now not a signal to stop? If not, we need to think about how to explain this, to help the person make sense of it, and this might be a good time to consider providing the person with information on what pain is.
If the person can’t yet answer the questions related to understanding symptoms, then our job might be to help guide them through the process of experimenting with different activities, noting changes and variations in pain intensity and quality, and fatigue, that occur. I think this is best carried out while doing the basics (or occupational existing).
Doing the basics refers to occupational existing, or just doing what’s necessary. NOT setting new goals, just simply keeping life ticking over. If the person is having trouble with sleep, mood, anxiety, keeping a normal routine going, we’re not going to have much luck in helping them focus on bigger or more valued goals, or getting them to add more obligations to the mix. I’ve indicated sleep and routines as the two areas for the person to think about, but it could be that asking the person “what have you stopped doing” is enough of a prompt – I’m just concerned that, at this stage, the person isn’t yet ready to look ahead, they might just need some breathing space before moving on to deciding.
If the person is currently in the process of deciding, they’re weighing up the costs of looking for more treatment (to help them return to “normal”, or how they were before their pain began). The longer it’s taken to get to this point, the less chance they have of getting back to normal in its entirety. At this point, I think our job is to help the person make this process explicit. Using a decisional balance chart (similar to the one I’ve linked to, but you can change it), and reflecting on what’s important in the person’s life, we can help people resolve their ambivalence and make their own minds up as to whether they’re ready to get on with life, or carry on looking for treatments. Remember, every treatment carries the risk of failure: so even if you’ve got the newest, most groovy treatment ever, respect that many people would rather not go ahead with an uncertain outcome if they can instead return to doing something that’s really important to them. It’s just that making this decision explicit is rarely carried out.
Once someone’s finished deciding, they can begin doing what’s important or occupational engaging. To enter this process, the person needs to consider what occupations (activities to those of you who don’t use occupational therapy/occupational science language) are most highly valued, make them feel like themselves. While some people are very clear about what it is they want to do most, others might find this a bit of a struggle – especially if it’s been a long time, or if the thing they love the most is something other professionals have told them is “unrealistic”. Here’s my take on this: I think if a person wants something of value, they will find a way to do it. Who am I to disagree? My job is to help them develop ways of achieving it, or at least of achieving the value that this occupation expresses. Each occupation we do is underpinned by values, reasons we believe it’s important. It may not be the occupation itself, but instead may be how we do it that expresses an important value. Our job at this point is to help the person identify the values expressed within this important occupation, and help the person problem solve ways to express those values.
Then most people will begin developing coping skills – so they can do what’s important. Again, our job is to support the person to develop a range of ways to achieve or engage in valued occupations. There’s no “right” way or “wrong” way, there are simply ways to do things that work in that particular context. What’s important is that the person knows plenty of options, and can choose when they fit the context. Where we might need to help is in providing options for coping, and in helping the person develop flexibility in how they apply these strategies. Flexibility might need to come from helping the person think differently about their pain, or about using some of the strategies.
And finally, once a person is beginning to do what’s important and use coping strategies, then it’s time for them to begin future planning. This process (and the other two of occupational engaging and coping) are going to be relevant for the rest of the person’s life. Future planning needs to include setback planning, maintaining behaviour changes, thinking about other ways to keep expressing who the person really is. I think it’s an aspect of pain management that we rarely consider – having chronic pain can mean learning to grow, to keep developing, to become more resilient and allows us to develop different parts of ourselves. It’s more than just “returning to normal” because, after all, what’s normal?