Whose life is it anyway?


A couple of weeks back I posted about my concerns that exercise is often over-hyped, has limited effects on pain and disability, and therefore people going through a rehabilitation programme will likely dump doing the exercises as soon as the programme ends. Well, that was an interesting conversation starter! TBH I expected the response. On the one hand we have avid strength and conditioning people (including a whole bunch of physiotherapists) saying it’s crucial to get strong and fit because it’s good for health and longevity, while on the other hand we have a large group of “others” who think life is too short to spend it in a claustrophobic gym, sweating and grunting and going red in the face. I may exaggerate a teeny tiny bit. Not about the sweating, grunting and going red though.

Part of my intention for that post was to stir the pot about the form of movement options being offered to people who live with pain. I’m not sure that message got across as strongly as I’d like – you see, I am not against getting fit, or improving strength and flexibility. I AM against cookie cutter approaches to rehabilitation where everyone gets the same thing irrespective of their personal values and interests – and competing demands on time.

So I thought I’d ask a bunch of people what they think a person’s life might look like 6 – 12 months after completing a rehabilitation programme. Fascinating. I won’t report the findings because this was an informal opinion survey, it’s in a private group, and people were not asked to give consent to the findings being reported.

What I will say is that opinions were diverse. Mostly people indicated that the person’s own life, goals, and preferences should be the determinants. Pain intensity wasn’t mentioned as often, and many responses showed that doing what matters to a person is key.

Well and good.

What’s my perspective? Having an injury or a problem that becomes persistent disrupts normal life. For many people this disruption is reasonably brief and life does “return to normal”. A hiccough on life’s journey. For others, it’s a complete change in life trajectory – long periods in limbo land while decisions are made on the person’s behalf, and not always with their cooperation (insurers, surgeons, rehabilitation professionals, I’m talking about you here) (Richardson, Ong & Sim, 2006). Life is never the same. And still others find it an opportunity to regroup, to review and perhaps to grow and flourish. Some commentators consider this latter group to have greater psychological resources than those who don’t (Wettstein, 2018).

We have paid a lot of attention to those who find it really difficult to integrate this persistent pain into a sense of self. There’s good reason to: people who find it hard to resume life with pain use more health resources, have poorer health more generally, and can be viewed very negatively by health professionals (Buchman, Ho & Illes, 2016; Mutubuki, et al, 2019).

We’ve paid less attention to those who flourish. To those who have found new meaning in life, new plans, a new sense of self. And I think part of this lies with our attention to “problems” rather than successes (because people who don’t seek healthcare are invisible to most of us, especially policy developers).

I was encouraged by some of the responses to my informal poll. Many clinicians talked about joy, meaning, values, curiosity, self-reliance, and being able to live despite pain’s presence. Several people with pain talked about the need to have a life, even if it meant pain increased (not all, but some). In other words – living! Not having a set of prescribed goals to tick off each day, although some of the activities that made up “life” were based on goal-derived activities drawn from their rehabilitation.

This is what I hope we will help people do: live a life that responds flexibly to what is thrown at us (Covid19, lockdown, age, accidents, disease processes, other people, life span events, earthquakes, climate change…), and that we move towards the things that matter to us. That our lives are imbued with the qualities we most value. That we feel connected, competent, to be able to feel deeply, for life to make sense, to know the directions we’re headed in, and to be able to make choices for ourselves (Thanks Steven Hayes! These are the basic yearnings from A Liberated Mind written by Dr Hayes and published this year).

Which leads me to goals and goal-setting. OMG we need to do some work, people. An auto-ethnography by Jenny Alexanders and Caroline Douglas points out that practices of clinician-centred goal-setting continue (Alexanders & Douglas, 2018), while a study by Gardner and colleagues (2018) found that while goal-setting was often collaborative, those therapists with a higher biomedical orientation in their treatment approach involved patients less. Levack, Weatherall, Hay-Smith, Dean, McPherson & Siegert (2016) found there is an increasing amount of research into goal-setting in rehabilitation, but that study design and heterogeneity of studies mean the quality of evidence for the effect sizes is pretty poor.

I take from this, that while clinicians often undertake goal-setting with people, currently our practice is patchy. We may mean well, but a focus on what WE prioritise, along with unhelpful processes (setting goals at the first appointment is really difficult for people with persistent pain, especially when we might not have established the contributing factors to disability and distress), time-frames, and for people who may be at the “making sense” stage of their rehabilitation (Lennox Thompson, Gage & Kirk, 2019), a focus on future achievements may be premature.

We might also need to develop a deeper understanding of goal-setting theory, and learn processes rather than techniques to help someone move towards the life THEY want to live, rather than a simulation consisting of multiple “goals” that have to be done each day.

Alexanders, J. and C. Douglas, Goal setting for patients experiencing musculoskeletal pain: An evocative autoethnography. Pain and Rehabilitation-the Journal of Physiotherapy Pain Association, 2018. 2018(45): p. 20-24.

Buchman, D.Z., A. Ho, and J. Illes, You Present like a Drug Addict: Patient and Clinician Perspectives on Trust and Trustworthiness in Chronic Pain Management. Pain medicine (Malden, Mass.), 2016.

Levack WMM, Weatherall M, Hay-Smith EJC, Dean SG, McPherson K, Siegert RJ. Goal setting and strategies to enhance goal pursuit in adult rehabilitation: summary of a cochrane systematic review and meta-analysis. Eur J phys rehabil Med, 2016

Gardner, T., et al., Goal setting practice in chronic low back pain. What is current practice and is it affected by beliefs and attitudes? Physiother Theory Pract, 2018. 34(10): p. 795-805.

Lennox Thompson, B., J. Gage, and R. Kirk, Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 2019: p. 1-12.

Mutubuki, E.N., et al., The longitudinal relationships between pain severity and disability versus health-related quality of life and costs among chronic low back pain patients. Quality of Life Research, 2019.

Richardson, J.C., B.N. Ong, and J. Sim, Is chronic widespread pain biographically disruptive? Social Science & Medicine, 2006. 63(6): p. 1573-1585.

Wettstein, M., et al., Profiles of Subjective Well-being in Patients with Chronic Back Pain: Contrasting Subjective and Objective Correlates. Pain Medicine, 2018: p. pny162-pny162.

3 comments

  1. Bronnie,I glean much from reading your posts as a ….um…person with discomfort!
    I find small helps in attitude,practical activities all over the place.
    My latest is to do with NLP,with Empower Therapies instigated by Mel Abbott.Ive studied her activity a bit sceptically but the only way is to try her “Switch”.I often think the medical approach is like a religion: and its getting outdated as non medical people have more voice.Thanks for your pioneering and hard work as always.Philippa S.

  2. Very interesting look at prescribing training programmes or rehab for clients.

    I guess it’s often overlooked that people’s feelings might play a factor in how well they might perform with these programmes!

    As a trainer myself I’ve probably been guilty of doing the ‘right’ thing for fulfilling the criteria of what I’ve learnt when prescribing programmes rather than taking the time and effort to learn about the individual and why/how they are in that position in the first place

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