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Pain, justice, knowledge: San Diego Pain Summit 2023
This is the first in a series of posts about SD Pain 2023. Over the coming weeks I'll be exploring pain, power, justice, knowledge, ethics and all sorts of good stuff.
The San Diego Pain Summit is always one of my favorite weekends of the year. To be able to come together with so many amazing folks who want better. Better knowledge, better understanding, better research, better treatment and care. Folks who want to foster community and have hard discussions and be challenged and create - together - more just and equitable ways forward.
Driving home from the airport after the San Diego Pain Summit I began recording some thoughts on my phone. When I saved the recording, three keywords were automatically created: Pain. Justice. Knowledge. How friggin’ perfect is that? So perfect it became the title of this post (although technology freaks me out a little bit).
In this post I summarize and bring together some of the talks and discussions through the lens of epistemic justice, or justice related to knowledge. Themes will include power, uncertainty, racism, bias, and stigma. In the coming weeks I’ll write a series of posts that dive a little deeper into these themes. look forward to hearing your thoughts, questions, and reflections. I’d love to see some lively discussions in the comments section!
Power and pain
Power is where we’re going to start because as Karime Mescouto said in her excellent talk: POWER IS EVERYWHERE. Power is also relational, so we all have experiences with power in many different contexts within our lives. Yet, while power is pervasive, we don’t talk about it much. I want explore how power plays out in the classroom, the clinic, and the community.
Whose contributions are valued? Whose are not? What assumptions are we making about pain? About people? About people with pain? How can we challenge the dominant discourse? How might treatment interactions, even those we think of as harmless, be seen through a ‘power’ lens? What we can do to better understand power and pain? What we can do to share power to make our policies and systems - from education to research to treatment development to care to just all the things - more equitable and beneficial for ALL, not just for some?
So power is gonna be a thread through this whole series, including all of the summaries below, even when I don’t make the connection explicit. As Karime said in her talk - it’s okay to be uncertain as we explore power and try to answer these questions, we just can’t let uncertainty lead to inaction.
Knowledge and pain
Knowledge is directly linked with power. Knowledge about pain doesn’t just exist, it is created and curated by people. But not all people get to contribute to our understanding of pain. The people in power - the ‘in-group’ - get to decide what is valid and acceptable. They get to decide what is considered ‘knowledge’, what is 'truth', what is the 'norm’, and all else is deemed invalid, unacceptable, untrustworthy, deviant, abnormal. Then this limited way of knowing, generated by a privileged few, becomes the dominant discourse, the water we swim in, the foundation upon which we build our theories (which, as we know from Morten Høgh’s talk, are all wrong).
When we talk about pain, and health and medicine in general, the water we swim in is pretty dualistic, reductionist, and full of unfounded assumptions. Ericka Merriwether referred to this as a scientific ‘meta-narrative’. It is a narrative that is very focused on pathology and mechanisms and individualism, with little to no consideration of social and political influences on health, illness, disease and our development across the lifespan. MANY people have been excluded from creating this scientific meta-narrative, including those most negatively affected by it. And MANY ways of knowing have been excluded as well, such as knowledge gained from lived experiences, Indigenous ways of knowing, anthropology, philosophy, history, literature, and art (among many others).
These knowers of pain and ways of knowing pain have long been discredited and devalued by those in power as too subjective, too deviant, too untrustworthy…to all of our detriment. As a result, much of our understanding of pain and of humans - and of humans in pain - is limited, biased, and stigmatizing and does real harm to real people. We saw this in many of the presentations, including Ericka’s research on stigma and bias at the intersections of weight and race, Jessica Isom’s talk on racism in medicine, and Jonathan Alexander’s moving presentation on his experiences of being queer and seeking care within health systems not built for - or by - all of us.
Uncertainty and pain
If it’s not already evident, uncertainty is also everywhere! And, like power, we do not understand it or navigate it well. The discussion around uncertainty in future posts will be grounded in Nathalia Costa’s excellent presentation. Importantly, we’ll explore how the dualistic, reductionist, scientific meta-narrative, as well as many other narratives about pain and people, are often presented as certain. This certainty is not supported and is unwarranted. There is so much we don’t know! This shit is hard! Pain! People! People with pain! These are not simple, easily understood topics. There is so much we don’t know just about how we are. How we think, move, breathe, evolve, be, feel, experience, live. Yet we still try to ‘sell’ people a particular narrative about their pain. It might be a biomechanical explanation, or biopsychological explanation (I’m leaving off the social cuz really, we don’t do social well for all the reasons laid out above. We don’t even just not do it well, we often don’t do it at all), or something else altogether, but it’s gonna be wrong (blame Morten for that, not me), or at least incomplete.
(Side bar: This is one of the issues I have with how pain science education is often delivered. It is ludicrous for someone to explain my pain to me. Pain biology is not pain. We ALL have incomplete knowledge about pain. We are ALL subjective and coming at this with our own experiences, education, understanding. Yet too often people with lived experience of pain - myself included - are dismissed and discredited in our capacity as knowers of our own pain. This happens both in care and in advocacy - I’m ‘just a patient’ - and it pisses me off. I hope it pisses you off, too. It is demoralizing and dehumanizing, built on shaky foundations of incomplete and biased knowledge THAT IS ALSO SUBJECTIVE. Even an RCT tells a story and is not ‘truth’. <End rant>.)
Uncertainty and knowledge and power and pain
This is again related to knowledge and power. By pushing one way of knowing pain, we deny or discredit the knowledge people have of themselves, their pain, their experiences, their worries and concerns and hopes and dreams and thoughts and theories. Their invaluable lived and living expertise is dismissed, disregarded, ‘shrugged off’, not taken seriously. This is bad (she hopes goes without saying…). It’s also understandable, because clinicians have been taught to have all the answers and have often not been taught how to listen, validate, accept, believe, and sit with hard things. They haven’t been taught how to trust and collaborate and co-create new narratives with people seeking their care and expertise.
Rather, they’ve often been taught the opposite: to doubt and challenge the person’s understanding of their pain and give them a new, better narrative. One that is more aligned with what they believe to be ‘truth’. (But as we’ve seen above, the knowledge that ‘truth’ is based on is incomplete, biased, and wrong. In a future post I will share some bullshit I learned in paramedic school about fibromyalgia. It’s not good, like really not good, and it was 2008. 2008!)
Which brings us to rehumanizing pain (and healthcare more broadly) professions, including policymaking, education, research, treatment development, and care. When we take a narrow view of pain and we reduce people down to pieces and processes, we miss most of the picture. Pain is not in the brain OR the body. Pain is experienced by whole persons within the whole context of their lives, families, cultures, societies, worlds. But it’s hard to bust of out dualism and reductionism. I try not to talk about mind and body, or physical and mental, but I still fall into it because I haven’t latched on to an easy way to frame my thinking.
Enter Laura Rathbone and phenomenology as a way to get out of dualism and navigate uncertainty. During her talk, Laura asked: what is pain? Do we know it when we feel it? Before any of us were taught what pain is, we knew what pain was. But somewhere along the way we’ve been socialized to not trust what we know, to not trust any source that can’t be systematically reviewed or meta-analyzed.
What would happen if we took a different stance? What if we started from a position of belief? When someone tells us about their pain, or about their experiences in healthcare, or their experiences in the world, what if we just believed them. No doubt creeping in because it doesn’t fit the meta-narrative we’ve been told is ‘truth’. Perhaps taking a more experiential and phenomenological stance could help us broaden and deepen our understanding of pain and what to do about it. We just can’t know everything, that’s okay. By admitting that, perhaps that will allow us to navigate power and uncertainty more equitably and with less fear.
To make sense of this I have to think and write way more. I don’t know how to put it into words yet. But this will be the last topic in the series so I’m hoping by then ideas will have fallen into place that make me go - AHA! That’s it! (And in the process will be amazed at this whole being a conscious thinking human business.)
Rehumanizing pain research and care
There are also many other ways we can rehumanize the work of pain. We can address the limitations in our knowledge base by including other ways of knowing pain. We can learn from Indigenous ways of knowing pain and health and healing. We can return the humanities back into medical and health professional training. What can we learn about pain from art? Literature? History? Philosophy? Anthropology? Political science? Law? When asked what has helped with my pain the most, I often say, jokingly but it’s truth, it was some combination of pain science, 19th century literature, and Buddhist philosophy. Humans have been trying to make sense of pain and suffering for thousands of years. We can learn from them.
We can also learn from other knowers of pain, such as folks living with pain at all the intersections of our identities. We can learn from them in classrooms, in boardrooms, on research teams, on scientific advisory boards, in politics, in policymaking. We should be learning from and with them in all the rooms where decisions are being made about and for them. Ryan Shelton showed us how this can be done through ‘in-reach’ and community engaged health models - going into the communities we are trying to serve and learning from and with them. The community has to be a part of defining the problems and co-creating the solutions. As Nathan Hutting put it, it’s about building meaningful connections and meeting with people with pain as equals. If we go into the community with the solution (typical ‘out-reach’) we become part of the problem.
We can bring together many knowers and many ways of knowing pain to generate and bring together new knowledge that broadens and deepens our understanding of pain. Legitimizing these forms of knowledge, and these knowledge creators, is working towards epistemic justice. This comes back around to sharing power as a way forward to more ethical and equitable pain care. Epistemic justice is inextricably linked to power. Justice requires that we uplift traditionally excluded and marginalized perspectives and challenge normative beliefs and the dominant discourse. Justice requires we be kind, open, and compassionate in health care, as Jonathan said in his powerful talk - it is not acceptable not to be. Justice requires that we make the work of pain more collaborative, more ethical, and more equitable, and values and benefits ALL of us.