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Apr 15, 2023Liked by Joletta Belton

Really looking forward to reading upcoming posts. This was a great start! Power and Justice are so important when it comes to pain. I think about how there are racial disparities in many chronic pain conditions (such as migraine) and how the social part of the BSP model of pain may influence this health disparity. Lots to think about!

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Thanks so much Dorota! I look forward to exploring these important issues in more depth and would love to hear what you think along the way. The social part is too often overlooked, both in terms of health disparities as well as in developing more effective therapeutic approaches. So much to think about!

Thanks for reading the post and for taking the time to leave a message, much appreciated! I look forward to future discussions.

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Apr 16, 2023Liked by Joletta Belton

I came back because I reread the portion about uncertainty. I think it is so important for all of us (people with pain, people trying to help people with pain, others) to explicitly acknowledge the uncertainty. No one has the answer to why we hurt or how to "fix" pain - although may practitioners, academics, and people on instagram certainly believe and market a "cure" or an explanation for why we hurt and why sometimes pain persists. It is dishonest, and overwhelming for someone in pain to think "wow all these people claim they have the answer - but who do I trust?". Also, "wow there are SO many options - which do I pick: movement, journaling, meditation, a medication, pain science?" I think being upfront and honest that we don't know for sure is so critical. And then we can think about what some options are and in a therapeutic alliance with the person with pain to think about which options/strategies may work within the person's values, lived experience, interests, lifestyle and such. And what of these options would bring that person joy. We can also navigate the many many options presented to us by asking "what brings me joy?" For some it may be a daily walk outside, for others writing, for others, spending time with their pet, and others it may be advocacy. There are many options and I don't think any single one is the "right one" despite what some practitioners say. There's just what feels good and right for that one person. Thanks again for this article and the invitation to share our thoughts.

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Yes! To all of this! Thanks so much for coming back to it and sharing these additional thoughts. And I love how you brought up joy. That will be in a future post as well. Devra Joy Sheldon talked about bringing joy into the therapeutic encounter (and into our lives more generally) in her presentation at the SD Pain Summit and I think that is such a wonderful

and novel approach.

What brings me joy? Ahhh - if only we could all tap into that a bit more! Especially since, as you said, we know that nothing works for everyone and we don't really know what will work for any one person. But what brings them joy? What strategies or treatments or therapies can help bring more joy into their lives?

We can only know that by being curious about the person and by exploring and being a bit more playful - and less certain as to what is right or what the outcome will be.

I'm even more excited to delve into that a bit more now!

What feels good and what feels right for the person. I love that. Thank you for sharing Dorota! It's so nice to meet you here!

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Apr 12, 2023Liked by Joletta Belton

Loved reading this and looking forwards to more through this lens. You have such a skill for articulating the thoughts, feelings and reflections of a person living with pain experiencing healthcare that in the large claims to be 'patient centred'. Yet the contradiction is immediately obvious as soon as the therapist starts their, often 'therapist centred' questions and the person who is supposedly at the centre is told what is wrong with them and how the therapist will get them better.

Pain is so complicated even the definition gets longer the more we understand about it. Surely the best place to start is on solid ground like what Peter O'Sullivan suggests with "tell me your story" then listen because the only truth we can be certain of initially is what the person at the centre feels, thinks and believes is happening.

A big thing I struggle with is the craving for certainty both from myself and from a lot of people I help who are in pain. Pain is seen as the invader to their life to be eradicated with a certain plan (not that dissimilar to how we deal with a cancer). Which if I'm not careful takes the person from the centre and puts the pain there which I haven't found useful.

Striking the right balance between validating and acknowledging the pain and suffering whilst helping someone move forwards with their life is a never ending quest because we are all unique and finding ways to harness that as an asset is one of the things I love most about my job.

Thanks for writing like you do it's such a talent you have and really helps people like me get great insight into how we keep the most important person at the centre of care, not everyone living with pain is as able to express their self awareness like you can xx

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Thanks so much for sharing your experiences and thoughts, Steven! And I'm so happy to hear the post connected with you. I love how you said the best place to start on solid ground is to invite people to tell their story, and to believe them when they do. Most of the research on chronic pain is that not much works for most people, and some things work for some people, and that doing something is often better than doing nothing. So if we don't really know what works for whom, why wouldn't we start with understanding the person and their experiences?

That craving for certainty is real! Not just in pain, but in life, and it is often elusive or illusory. That knowledge and validation are so crucial for people to be able to see their pain, and themselves wtih pain, differently. At least it was for me. And as I said/joked in this piece, I credit pain science, 19th century literature, and Buddhist philosophy for helping me feel both known and validated, as well as helping me reconceptualize my pain as a part of me and my human experience, rather than an enemy to be fought and despised. When I did think of pain as the enemy that invaded my hip and upended my life, it was a constant battle, not just with pain but with myself. In Fran Toye and her team's work this was conceptualized as 'struggling against my body to be me'. It's really hard to be yourself when you are fighting yourself!

But getting to a place of acceptance and working with rather than fighting and working against is hard, and I'm not even sure if it's 'right'. This is why I also love Cass MacGregor's work on acceptance, and she'll be keynoting next year at SD Pain! So so lucky to get to learn from such amazing folks and try to bring it all together in a way that makes sense for me, and hopefully for others as well. There are so many threads through the various areas of pain research that I know are important and inextricably connected, I just have to figure out how to pluck them out and weave them together! I look forward to the process :)

I look forward to hearing from you as I go, too! And thanks for your kind words. I think my nerdiness, my bibliophilia, and my background in neuroscience from my first grad school stint in the 90s and my MS in human movement, and my experiences as a firefighter paramedic, plus my lived experiences of pain and seeking care, and my love of writing in order to make sense of things for myself have brought me to this place of curiosity and exploration of what pain and knowledge and justice and equity and all those things are and how they relate and how we can act. This is not the path I expected, that's for sure! But we all find our way, eh? I'm grateful for it.

Thanks again, Steven! xx

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Apr 13, 2023Liked by Joletta Belton

Thanks for for the heads up about Fran and Cass I'll be sure to look them up. Acceptance is so important but needs to be floated and not forced on someone struggling. Personally I usually find it once my struggles have been acknowledged and validated.

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I wholly agree! I think you'll love both of their work regarding acceptance, as well as validation. In a recent paper I was involved in with Fran we touched upon acceptance a little, as well as acknowledgement, but there was much more on validation, which was part of four of the themes: https://academic.oup.com/painmedicine/article/22/6/1333/6159703

Tamar Pincus' work also centers validation and acknoweldgment, are you familiar with her stuff? We recently published a paper on communication in MSK health and explicit validation is cornerstone: https://chiromt.biomedcentral.com/articles/10.1186/s12998-022-00466-w

And Cass' entire PhD work is around acceptance, but challenges the ways we conceptualize and talk about acceptance. I LOVE it! Her and her research team, which includes people with lived experience of pain, have proposed an ecosystem framework for accepting chronic pain. Their recent poster is here: https://painconcern.org.uk/north-british-pain-association-autumn-scientific-meeting-2022-poster-prize-winner/ (which I wrote about it in January if you haven't seen it! Not that I expect you to read all my stuff!: https://open.substack.com/pub/mycuppajo/p/wwwmycuppajocom?r=awkzx&utm_campaign=post&utm_medium=web)

They are in the process of writing up more in depth papers, which I will be sure to share!

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This was such a great conference and so helpful to see your summary! The talks shared here have stayed with me ever since, I still find myself thinking about wach one. Xx

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Thank you Laura! It was a great conference! I look forward to thinking about all these talks through this knowledge, power, and justice lens and seeing what comes of it. And how your talk helps us move toward epistemic justice and shared power - but I need to let all those thoughts knock against each other a bit more before I can put them together cohesively!!

Love you my friend! So grateful to have gotten to see you twice in one year!

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Yes I'm full of the same thoughts. I'd love to bring it all together into a meaningful reflection, so many thoughts zip zapping around and personal shifts!

You too! Here's to more years catching up and sharing a cuddle xx

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