Over the past few years I’ve been pondering the presumed gap between people living with pain and the people who “treat” or work with them. Most of my readers will know that I live with widespread pain (aka fibromyalgia) or pain that is present in many parts of my body, and the associated other symptoms like DOMS that last for weeks not a day or two, and increased sensitivity to heat, cold, pressure, chilli, sound and so on.
I first “came out” with my pain about 15 years ago: that is, I first disclosed to people I worked with that I had this weird ongoing pain – and finally joined the dots to realise that yes, I did in fact meet criteria for fibromyalgia. I recall feeling a sense of embarrassment, almost shame, for admitting that I had pain that did not go away – as if I shouldn’t acknowledge it, or speak about such “personal” stuff in a chronic pain service.
There’s a weird sort of cloud over being up-front about persistent pain when you’re working in the field. Perhaps I’m a little sensitive, but I’ve seen the little eye roll and the comments about other people who work in the same field as their health problem: drug and alcohol people who have had their experience with drug and alcohol problems; those working in mental health with their mental health issues; people who have survived rape or other criminal activities going on to work as counsellors… Like “are you meeting their needs, or your own?”
Sapolsky wrote about “why your brain hates other people” pointing out that “us/them” responses occur globally and happen instantly and effortlessly. Our neurobiological ancestry has set us up for this process such that within a 20th of a second of seeing a face of “them” we show “preferential activation of the amygdala, a brain region associated with fear, anxiety, and aggression…other-race faces cause less activation than do same-race faces in the fusiform cortex, a region specializing in facial recognition; along with that comes less accuracy at remembering other-race faces.”
It’s therefore not surprising that when a group of “us” work together to help “them”, coming almost as colonialists with our goodies to dispense to the needy natives, we find it a little eerie, maybe a little confronting when “they” want to come along as equals.
In the 1960’s the disabilities rights movement was founded in the United States. Called Independent Living, and founded by people living with disabilities, this organisation campaigned strongly to be seen firstly as people, and only secondly as consumers or healthcare users. “Nothing about us without us” was one of the key slogans used in their campaign. It’s only just happening in chronic pain management.
Persistent pain is often called an invisible problem. Because pain initially seems to be from an acute problem, people are treated within services for the body system involved. We have gynaecology services for pelvic pain, cardiology for non-cardiac chest pain, orthopaedic surgery and neurology for low back pain and headache – and so the problem of chronic pain fails to be accounted for because this information isn’t collated as a single problem.
Persistent pain is also invisible because no-one sees the person looking different. I don’t know how many times people living with pain have said to me “Oh but people say you look so well, surely there’s nothing wrong with you?”
And the even more invisible group are clinicians who also live with pain. Believe me, it’s not something many of “us” want to admit! And yet, if the statistics are correct, probably 1 in 5-6 of the clinicians working in persistent pain management have pain that’s lasted longer than 3 months.
“But I’m not like them” I hear you say! What’s that about? Oh that’s right, “we” have the answers… “We” are not struggling from day to day. “We” have it all together.
It’s a protective response, I think. One that protects clinicians from acknowledging our own vulnerability and powerlessness when it comes to knowing how to live daily life with pain. One that means clinicians can still pretend to have “the answers” while simultaneously protecting themselves from recognising just how little difference there is between “us” and “them”.
There are differences, though, and these aren’t pretty and might add to the “us/them” dichotomy.
People who are at greater risk of developing persistent pain (and other comorbidities like mood disorders, sleep disorders, obesity and so on) often come from lower socioeconomic areas. This is not as a result of giving up work and thus dropping income, but is actually a predictor of developing chronic pain (Fryer, Cleary, Wickham, Barr & Taylor-Robinson, 2017; Rios & Zautra, 2011; Sampiero, Cardoso, Bush, Riley, Sibille, Bartley et al, 2016). This means the people we see in primary care, or even in tertiary pain management services via the Ministry of Health in NZ, probably have more difficulty accessing transport to see us; have poorer dental care (Whyman, Mahoney, Morrison & Stanley, 2014); may not be able to afford to see a doctor or fill prescriptions (Devaux, 2015); can’t afford to attend a gym – and indeed may not have enough time to go to one after working two low pay jobs.
I wonder if this socioeconomic disparity adds to clinicians’ tendency to think of people with pain as “other”. On top of greater prevalence of mental health problems (Scott, Lim, Al-Hamzawi, Alonson, Bruffaerts, Caldas-de-Almeida et al, 2016) which can add to this sense of “otherness”, particularly when those disorders include “difficult personalities” (Carpenter & Trull, 2015).
It’s unpleasant and slightly unsettling to think of yourself as a clinician being, let’s call it what it is, prejudiced. And even more disconcerting when one of those “others” is one of “us”. Sapolsky suggests several ways of reducing the “them” and “us” divide:
- Contact – particularly prolonged, task-focused contact where everyone is treated the same
- Making the implicit explicit – show people their biases (what I’m doing in this article!), perspective taking – what is it like to walk a mile in the shoes of a person trying to deal with persistent pain with limited resources?
- Replace “essentialism” with “individuation” – explaining that there are fewer differences between “us”, and that the things we do see can be explained in other ways, less “fixed” ways than “oh it’s genetic”
- Flatten hierarchies – reduce the gap between “them” and “us”. In persistent pain this should mean ensuring people living with pain are involved in both service design and delivery. Nothing about us without us.
Do I expect this gap reduction to be easy? Not at all. There are significant barriers between full acceptance: there are angry people who have had their pain experience invalidated; there are clinicians who have been sworn at, spat at, assaulted (yes, it’s happened to me). But until we begin talking, we simply will not begin to address this problem.
Carpenter, R. W., & Trull, T. J. (2015). The pain paradox: Borderline personality disorder features, self-harm history, and the experience of pain. Personality Disorders: Theory, Research, and Treatment, 6(2), 141.
Devaux, M. (2015). Income-related inequalities and inequities in health care services utilisation in 18 selected OECD countries. The European Journal of Health Economics, 16(1), 21-33.
Fryer, B. A., Cleary, G., Wickham, S. L., Barr, B. R., & Taylor-Robinson, D. C. (2017). Effect of socioeconomic conditions on frequent complaints of pain in children: findings from the UK Millennium Cohort Study. BMJ paediatrics open, 1(1).
Rios, R., & Zautra, A. J. (2011). Socioeconomic disparities in pain: The role of economic hardship and daily financial worry. Health Psychology, 30(1), 58.
Sampiero, T., Cardoso, J., Bush, R., Riley, J., Sibille, K., Bartley, E., … & Bulls, H. (2016). (209) Association of socioeconomic factors with pain and function in older adults with knee osteoarthritis. The Journal of Pain, 17(4), S28.
Scott, K. M., Lim, C., Al-Hamzawi, A., Alonso, J., Bruffaerts, R., Caldas-de-Almeida, J. M., … & Kawakami, N. (2016). Association of mental disorders with subsequent chronic physical conditions: world mental health surveys from 17 countries. JAMA psychiatry, 73(2), 150-158.
Whyman, R. A., Mahoney, E. K., Morrison, D., & Stanley, J. (2014). Potentially preventable admissions to N ew Zealand public hospitals for dental care: a 20‐year review. Community dentistry and oral epidemiology, 42(3), 234-244.
Thanks for writing this.
I am a nurse practitioner in the US who worked with chronic neuropathic pain from trauma. (Notice how I differentiate myself from those with similar pain from diabetes where one can “blame” the pain on poor glucose control.)
I can no longer work after contracting myalgic encephalomyelitis (ME) or as it is derisively known here, chronic fatigue syndrome. I also have fibromyalgia now.
Having seen both sides of the pain patient/provider divide I support everything in this post.
Buddhism teaches us to understand there are no real differences between people—only in our perceptions do we set up Us vs Them. I am grateful to have had this lesson early in my career as a nurse and subsequently as a provider.
My colleagues all have fallen away and now my only friends are Buddhist.
Oh Ellie that sounds so difficult for you! ME is pretty challenging to live with, add the FM and neuropathic pain and you’ve kinda got the triple whammy! I am so glad you’ve found a way to help you live well. While I’m not Buddhist, many of the principles of ACT are based on those old principles of holding what we have lightly and without judgement, so they pass on without being “sticky”.
I hope you’re able to connect with others in the online community who also live well with these debilitating experiences, and know that you’re always valued. Thanks so much for taking the time to drop me a line, it means a lot!
I really enjoyed your article- it is like many medical conditions- when someone misunderstands, they devalue the conditions sognifance- until of course they are taught first hand- the true essence of the symptoms the disease creates! It’s similar to the idea that adhd is not a real condition- it is an excuse for bad behaviour-my lesson through all medicine is to approach all pts without bias- we all must check in with our own personal judgements and recognize they are just that-
Ps I too am an NP-
I have been a solo manual therapist for many years, but realise the limitations of this approach.
I would love to see a multi disciplinary approach where the person in pain is the lead with a care plan worked out by them with support from a group of practitioners.
Also ( mainly through the important work by Tania Singer’s ReSource Project) to see dyads on affect and perspective taking, between two persistent pain sufferers ( one listening, one talking for 5 mins then swapping). Then affect labelling. We M.T’s seem to be stuck in the small stuff in my opinion, like type of exercise and loading tendons etc, when we should be addressing feelings ( interoception) from the body and changing top down predictions.This can be done through movement, but we seem to leave this to others ( there is BATP in physiotherapy), when it is what we should be about.Two people in a room, one rubbing the other, just ain’t good enough anymore!.
Thanks for taking the time to comment. I think massage therapists tend to focus on the hands on part – but forget the incredible privilege they have over the course of their treatment to listen, ask questions, give information, provide follow-up input… The precious time spent in such an intimate setting offers opportunities that are integral to massage therapy – but often not factored in as something very important.
I agree – time for MTs to recognise their amazing skills go beyond pushing and rubbing bodies!