I’ve written about stigma several times on this blog – here , here and here – pointing out that all of us hold the very human bias towards people who are ‘other’ and that doing so can lead us to dehumanise them. For people living with pain this is particularly harmful because the ‘othering’ is associated with feeling disbelieved, blamed, and dismissed by health professionals. Studies show that clinicians of all persuasions under-estimate pain intensity when patients don’t have a clear tissue-based pathology, when pain is chronic and in females (De Ruddere & Craig, 2016; Diniz et al., 2020).
There are strong moves in some areas of chronic pain research to include people living with pain in research teams, and even in policy development. I’ve seen greater inclusion of people with pain in conferences. Advocates have worked tirelessly to elevate the voices of people living with pain in discourse about the way persistent pain is viewed and managed. People like Keith Meldrum, Pete Moore, Joletta Belton, Angie Clerc-Hawke, Eugenie Lee – the list is long and my apologies to those I have not mentioned. Their work has been so very important for introducing ‘others’ to the needs and preferences of people living with pain.
It’s just that I still feel an undercurrent of disrespect for this work. A sense of ‘it’s not research’ and ‘it’s only their opinion’. Hints of ‘stay in your corner’, ‘what if they take control’, and ‘you can’t have the tail wagging the dog.’
Here are some examples: think of a chronic pain ‘lived experience’ advisory group to, let’s say, an organisation mainly consisting of health professionals and researchers. Who establishes the boundaries of the advisory group? Who sets the agenda? How many representatives are allowed in this group? What are they asked to do? And another: think of a pain service, and how many peer support workers are involved? Are they paid for their work at the same rates as the clinicians? What professional support is available for them? Think of research involving people living with pain: Are they involved in developing the research question? Is their expertise paid for? What happens if they disagree with decisions made?
I’ve also seen some of the discourse on social media among people living with pain. It can be brutal towards clinicians, and even people living with pain who don’t share the same experiences or desires as others. My personal experience is being lambasted by people when I describe not being able to use medications (because they have no effect) and still living a full and enjoyable life! So I can understand some of the hesitancy amongst clinician groups where clinicians have borne the brunt of years of frustration and disappointment from people seeking help that just isn’t possible.
Inclusion is about developing relationships. Breaking down the stereotypes. Recognising that beneath any particular identifying feature lies human variability. We are not the same and yet we are all the same in that uniqueness.
There’s a fear, I think, that in ‘letting’ people with pain become equal partners in pain management research, education, treatment and policy, ‘we’ run the risk of not following what research tells us. That ‘we’ risk being dominated by, and bullied into, providing treatments that aren’t supported by evidence. And, in some instances, I’m sure there is. People with pain hold beliefs aligned with beliefs held by many health professionals who are uneducated about chronic pain – there are really clear indications in the literature that show widespread unhelpful beliefs about low back pain in the general public (e.g. Morton et al., 2019; Ray et al., 2022) that are pretty similar to health professionals (Nolan et al., 2018; Christe et al., 2021).
I understand the fear. It’s hard to tell someone that you won’t (or can’t) give them something they’re desperate for. It’s emotionally demanding, requires very clear reasoning (because self-doubt erodes confidence enormously), and can result in negative reviews and complaints.
Let’s stop for a moment, though. Let’s ask how people get these expectations in the first place. Where do the beliefs come from? How do they get perpetuated? Who keeps feeding the fire?
One influence comes from health professionals themselves. Take a look at all the ‘quick fixes’ for low back pain on social media. The ‘this exercise is the only one you need’, the ‘treat the root cause’, the anecdotes ‘see all the people I’ve treated’ – and this last one is even used by clinicians when talking to skeptical others! The earnest desire to have the fix, and the scorn heaped on dissenting voices leaves me wondering if people with pain are given all the information needed for informed consent.
Another comes from the occasional positive response to a treatment – it’s a bit like the gambler’s high. Intermittent reinforcement is a powerful thing. It keeps people doing the same thing in the hope that it will work because at one time, it did. Personal testimony is really emotive and influential. That’s why using personal testimony is banned in health professional advertising, at least here in New Zealand.
Here’s the thing, though. Avoiding difficult conversations doesn’t make them go away. As clinicians, researchers, educators, policy-makers, isn’t it important to understand firstly, what people think/want, and then to collaborate to have an open and honest discussion about what’s feasible. This is a risk – ‘we’ might hear things we don’t like. We might find out that it’s our colleagues who perpetuate some of the unhelpful beliefs – and that means ‘we’ need to do something about it. It’s also possible ‘we’ might hear about things we are doing badly. Like assuming we know what’s best for a person, being inflexible about how we set up our clinics and our treatment programmes, following algorithms that have been developed without considering the lives of people and omitting their desire to have a say in what happens to them – failing to really hear about how treatments impact the person and their lives in context.
Difficult conversations are just that: difficult. There is guidance for having these kinds of conversations as individuals (eg this one) but less guidance for groups and communities. And I think this is a discussion for us as a community. And as a clinician, educator, researcher, it’s our job to lean in to discomfort and invite a conversation. Why? Because we hold most of the power here. I’m reminded of a statement made by a politician recently: when you’re used to privilege, equality feels disempowering. Let’s work on changing that.
Christe, G., Nzamba, J., Desarzens, L., Leuba, A., Darlow, B., & Pichonnaz, C. (2021). Physiotherapists’ attitudes and beliefs about low back pain influence their clinical decisions and advice. Musculoskelet Sci Pract, 53, 102382. https://doi.org/10.1016/j.msksp.2021.102382
De Ruddere, L., & Craig, K. D. (2016). Understanding stigma and chronic pain: a-state-of-the-art review. Pain, 157(8), 1607-1610.
Diniz, E., Castro, P., Bousfield, A., & Figueira Bernardes, S. (2020). Classism and dehumanization in chronic pain: A qualitative study of nurses’ inferences about women of different socio-economic status. British Journal of Health Psychology, 25(1), 152-170. https://doi.org/10.1111/bjhp.12399
Morton, L., de Bruin, M., Krajewska, M., Whibley, D., & Macfarlane, G. J. (2019). Beliefs about back pain and pain management behaviours, and their associations in the general population: A systematic review. Eur J Pain, 23(1), 15-30. https://doi.org/10.1002/ejp.1285
Nolan, D., O’Sullivan, K., Stephenson, J., O’Sullivan, P., & Lucock, M. (2018). What do physiotherapists and manual handling advisors consider the safest lifting posture, and do back beliefs influence their choice? Musculoskeletal Science and Practice, 33, 35-40. https://doi.org/10.1016/j.msksp.2017.10.010
Ray, B. M., Kovaleski, A., Kelleran, K. J., Stilwell, P., Baraki, A., Coninx, S., & Eubanks, J. E. (2022). An exploration of low back pain beliefs in a Northern America based general population. Musculoskeletal Science and Practice. https://doi.org/10.1016/j.msksp.2022.102591