Epistemic Justice as a way forward in pain research and care

And what would you like to see? Lemme know!

I started MyCuppaJo nearly 10 years ago. I was newly medically retired from the fire department, struggling to get out of the worker’s compensation system (which was ridiculously hard), and back in graduate school to study movement and pain in order to figure out what the hell was going on with me.

The blog was terrible. TERRIBLE! I was panicking. Not being a firefighter anymore I didn’t know who I was, who I would be. I lost all my labels and was desperate to find new ones. And I was in a hellofalotta pain I couldn’t make sense of and didn’t know what to do about.

It sucked. Not just the blog, everything. I was lost in what Drew Leder has called the malignant mist of pain.¹

The more I learned, though, the more the mist began to lift. I began to see the faintest outlines of a way forward. I was still disoriented, still didn’t know which way to go, still didn’t know if I should head out into this terrain I didn’t have a map for and didn’t know how to navigate, or even if I could, or should, navigate it at all.

A mist photo from my archives. It’s perfect! After presenting at Paincloud in Norway the speakers were treated to a few days in the mountains. We ascended Gaustatoppen via a funicular railway inside the mountain (financed by the US Army in the 50s!). It was slippery and you couldn’t see shit, including steep drop offs, so it was scary as hell as we made our way to a cafe at the top, but we did make it!

Then I went to the first annual San Diego Pain Summit (the 10th one is coming up again next week!). Not only were there fantastic presentations, I also found community. Folks who gave me permission to exit the holding pattern of pain and uncertaint. To follow a new path, even if I couldn’t see it clearly. (The presentation that landed right where I needed it was this one by Eric Kruger). They gave me courage, and hope. I began to write more vulnerably, to share more of myself. More of what I’d been through and was going through.

Slowly, I began to make sense of my pain and what I could do about it. Along the way I became an accidental advocate, sharing my story at conferences and in classrooms around the world and getting involved in global initiatives in pain education, research, and advocacy. All of that work really took off the last few years, which is awesome, but it also meant MyCuppaJo was on hold. So as I met incredible people and have been exposed to so many new ideas, concepts, and ways of thinking about and understanding pain and health and equity and ethics, I wasn’t able to make all the connections I know are there. There’s so much to explore and discuss and learn and unlearn and challenge and make coherent.

’First, I do not sit down at my desk to put into verse something that is already clear in my mind. If it were clear in my mind, I should have no incentive or need to write about it. We do not write in order to be understood; we write in order to understand.’ ~ C. Day Lewis

So MyCuppaJo is back. I need to write in order to understand, and hope some of you may want to figure some shit out with me.

Big Picture Thoughts on Future Posts

In the last few years I’ve been intrigued by the idea of epistemic justice as a way forward that could make pain research, education, treatment, policies, and systems more equitable, ethical, human-centered, compassionate, and built with us, for us. Justice is, after all, one of the four principles of medical ethics, along with autonomy, non-maleficence, and beneficence.

The hill I will die on is that we can only come closer to understanding pain by genuinely and meaningfully learning from and alongside people who have lived with pain (epistemic justice). We will only understand how best to treat pain, including how best to implement what we know and learn from the research, by collaborating and creating solutions with people who have lived with pain. Their lived expertise - this lived way of knowing pain - complements and contextualizes other ways of knowing pain, such as science or clinical expertise.

Other ways of knowing pain also need to be elevated. We tend to put the evidence hierarchy on a pedestal and forget there are other forms of knowledge. There is much we can learn about pain from philosophy, history, anthropology, phenomenology, art, literature, lore, economics, and politics.² While I will focus on the knowledge, perspectives, and insights gained from living with pain on these pages, it will often be through these other lenses. This lived knowledge is an invaluable way of knowing pain that makes our understanding of pain broader, deeper, more relevant, more human, and more actionable in the real world.

Epistemic injustice

To understand what epistemic justice could be, though, and how it could shape the future of pain research and care, we also need to explore what epistemic injustice is and how we’ve gotten to where we are today.

Simply put, epistemic injustice is injustice related to knowledge.

‘Someone is wronged specifically in their capacity as a knower, wronged therefore in a capacity essential to human value.’ Miranda Fricker, Epistemic Injustice: Power and the Ethics of Knowing

What knowers do we trust? What ways of knowing do we value? What ways of knowing do we dismiss, trivialize, doubt, discredit? Who decides what is truth, and for whom? Whose views dominate the discourse? Who gets to contribute to the generation of knowledge? Who is excluded, and therefore wronged in a capacity essential to human value?

Two forms of epistemic injustice are hermeneutical and testimonial injustice. What happens when our experiences are not contained within the dominant and generally accepted discourse? Or when our knowledge of ourselves and our experiences are denied, doubted, disbelieved, discredited, or dismissed?

Can we improve our understanding of pain by bringing together more ways of knowing? Rather than inviting people who've been excluded to existing tables, can we build some new friggin’ tables?

Another mist pic from my archives. I was tent camping solo, and it snowed all night. In the morning I walked down to the lake,. At first you could barely see a thing. As the mist slowly begain to lift it was magical. Everything was blanketed in white, hushed and beautiful. This is what the malignant mist lifting feels like.

Epistemic justice

I want to try to avoid reducing the bigger picture down to bits that are siloed and isolated, so am starting to think of this all more along the lines of Cass MacGregor’s ecosystem approach to acceptance I shared in the last post.

What makes up this epistemic justice ecosystem? Things like ethics, equity, equality, storytelling, knowledge generation, valuing other ways of knowing, narrative practice, inclusiveness, representation, vulnerability, and shared power. Other forms of justice as well, which may well have epistemic justice at their core.

In addition to delving more deeply into the above issues, I also want to explore concepts in pain research and care like acknowledgment, reassurance, validation, mindfulness, movement, supported self-management, peer and social support, acceptance, motivation, pain education, goal-setting, shared-decision making, person-centered care, and more.

When we view these things through a lens of epistemic justice, what changes? What about through the lenses Cass mentioned in her poster, such as individualism or identity? Or stigma or racism, like in Ericka Merriwether’s work? Or power or uncertainty- like in Karime Mescouto’s and Nathalia Costa’s work, respectively? Or trauma, like in Melanie Noel’s work? (Side note: Ericka, Karime and Nathalia will all be speaking at the San Diego Pain Summit next week, I’m so stoked! And in May I’ll be moderating a panel on trauma and pain, led by Mel. I’ll have MUCH to write about in the coming months!)

‘Institutions and their agents can perpetuate violence in the name of health and welfare. Social forces - including economics, politics, social institutions, social relationships, and culture can cause pain and suffering to individuals.’ Farmer, Yong Kim, Kleinman & Basilico, Reimagining Global Health: An Introduction

I’m also curious about concepts such as catastrophizing, kinesiophobia, fear avoidance, and the notion of ‘maladaptive’ responses in general, be it ‘maladaptive’ thinking, behaviors, beliefs, emotions, or nervous, immune or endocrine systems. Might some of what we pathologize as maladaptive actually just be adaptive? What about in the context of past (or current or ongoing or intergenerational) trauma? Violence? Toxic stress? Racism? Stigma? Homophobia? Sexism? Discrimination? Marginalization? Ableism? Sexual assault? War? Displacement? Poverty?

This is obviously not an all inclusive list. I’m keen to hear from you what you’d like to see on these pages, so please share in the comments (or just hit reply if this came via email and share your thoughts that way).

I guess what I’m asking is: Through epistemic justice can we revolutionize our understanding of pain in the lab? the clinic? policy? health systems? our lives? our communities? the world?

I think we can. It’s worth a try, eh?

Some final thoughts

When I started this Substack I wasn’t sure what to expect. I was terrified of failure. I still am. But I’m trying to be brave. I’m working through some books on the craft of writing (I’d love recommendations!) and am also reading Brené Brown’s Rising Strong, a book about how we get back up after we fall. It’s helping me reflect on how I’ve risen strong in the past, and also preparing me for when I inevitably fall again. A fear of failure has prevented me from stepping into my writing with all of me in the past. What if I suck? What if no one reads it? What if people read it and it doesn’t resonate?

I’m learning to push forward, even knowing all those fears could be realized. If I do fall, it’ll be okay. I’ll be okay. And this is in large part to all of you. You continually give me courage to keep hitting publish, even when I’m an anxious wreck. I am so lucky to be a part of such an engaged, thoughtful, reflective, vulnerable, brave community of folks. I will never take for granted that you read these posts. Thank you!

One last mist pic, another camping trip, this time with John and Buster. We woke up and walked up to the lake with our coffee and were rewarded with this rising mist.

1. Drew Leder’s work has been hugely influential on me. When I first read The Experiential Paradoxes of Pain I was damn near pumping my fist and shouting ‘YES!’. I took so many notes I essentially just recopied the whole article into a notebook. This link isn’t open access, if you have trouble getting it hit me up. Sidenote to the footnote, I recently purchased his book The Distressed Body. If you’ve read it, let me know what you think!

2. Pain and politics, what? See Keith Wailoo’s Pain: A Political History and Daniel Dawes’ The Political Determinants of Health.

Many ways of knowing pain are found in Encountering Pain: Hearing, Seeing, Speaking, edited by Deborah Padfield and Joanna Zakrzewska (there is a free pdf version you can download through the link as well as a book you can purchase).

For a brilliant and beautiful book that blends science and plants and nature and Indigenous ways of knowing, see Braiding Sweetgrass.