Supported self-management – what are we managing, actually?

One of the words that has been in my vocabulary for decades is ‘management.’ No, I don’t mean the proliferative middle management layer infesting healthcare for about as long as I’ve been working in health. I mean ‘pain management’ or ‘supported self-management.’ As ever, what pops up for me is about what, exactly, is being managed?

Is it pain? Well – not exactly. After all, pain does what it does, and if we focus on pain reduction alone just look where that gets us (Ballantyne & Sullivan, 2015; Cutler & Glaeser, 2021). And quickly, lest anyone think I’m anti-medication and don’t know about the underhand dealings of the Sackler family – in the right place, at the right time, and with the right checks and balances, medication for pain can be a really good thing. It’s just that focusing on pain reduction without concurrently looking at living, well that IS a problem. The thing is that the relationship between pain intensity and functional limitations and even quality of life is complex, while the only time we’ll never feel pain is… when we’re six feet under.

If it’s not pain, then what is this thing called pain management? Mostly it’s a collection of actions that individuals need to do to engage in what matters to them, to reduce the impact pain has on daily life, and to feel a little like themselves.

There are problems with the language around pain self-management. While the current NZ government’s ideology of ‘individual responsibility’ is having its moment in the sun, self-management can come with the same flavour. Problem is, self-management is often not about managing ‘the self.’ It’s often about managing other peoples’ expectations while requiring accommodations from those around us so we can do the things that self-management consists of.

Let me unpack this a little.

Say I go to a clinic to help me with my painful neck. I’ll probably see a therapist for pain self-management. In those sessions I’ll be given ‘pain education’ and lots of exercise. I might be given some mindfulness or relaxation to help with my sleep and to down-regulate my nervous system. I’ll be told about pacing, and of course I’ll have set goals.

What’s wrong with this? Nothing… exactly. But here’s the thing: I live a full life. I have obligations to others – my aging parents, my adult children, my partner, my dog. I work. How do these people respond to my new regime of exercise, activity pacing, sleep management, and mindfulness?

Do I fit those new activities in around my current responsibilities? Or do I drop some? If I drop some of the things I do, who does them? Or do they just not get done? How do I negotiate these altered responsibilities? Or do those around me simply suck it up because, you know, I’m learning self-management?

What of those people who live complex lives? A woman who works two minimum wage jobs, fosters their teenaged grandchild because her Mum is having another baby and her Dad isn’t on the scene, who has other health conditions, who cares for their wider family including the brother with intellectual disability and his wife. How does this woman negotiate with the boss who says he can employ another person without those limitations when she asks if it’s OK to pace her work (she’s on a production line)? How does she manage her wayward grandchild who is truant from school because she has undiagnosed ADHD but nobody has assessed her because she’s a girl? How does she manage the 30 minute commute on a bus, then a bicycle ride for another 30 minutes to work and the same on her return? Then goes to her second job. And then get told she needs to do an exercise programme?

You see, self-management is not just about me doing my thing for myself. It’s about me working within my life context to find ways to do what matters. My life context. The people around me and their expectations and obligations. Some things that can be adjusted, and others that can’t.

I see self-management as a necessary and important component of living well with pain. But I also see it as more than that. It’s not pain that gets managed – because that means pain gets to call the shots and if I want my life, I don’t want pain to be in charge. It’s partly about me making adjustments in what I expect and can do for myself, and that’s a life-long process we all need to do as we age and develop limitations in what used to come easily. But it’s also about my whanau, my employer, my friends, and all of those around me including the social structures in place at my work, in my community and imposed on me by government and their agencies.

Where, in our pain self-management therapies, do people get supported to introduce all these changes to the people they live with, interact with? Knowing those with the least power and influence are also the population most at risk of developing chronic pain, how well are we supporting people to communicate to those around them? What are we doing to ensure employers (and social support services) are willing to accommodate people who need to adjust life to meet their needs?

You see, I think ‘pain management’ is really ‘life management’ – and it’s always social. Our job as health professionals is not only with the one person in front of us. It’s always about how we help that person live in their own world, with our support. And we probably need to pay much more attention to the world a person comes from and consider the challenges it always is to make change (at least, before we suggest the person ‘isn’t taking the message on board’). Helping with communication, assertiveness, and – where needed – challenging hierarchy, power and legislation is also within our scope of practice.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of Chronic Pain — The Wrong Metric? New England Journal of Medicine, 373(22), 2098-2099. https://doi.org/10.1056/NEJMp1507136

Cutler, D. M., & Glaeser, E. L. (2021). When innovation goes wrong: Technological regress and the opioid epidemic. Journal of Economic Perspectives, 35(4), 171-196.