Sharing pain research through the lens of personal story

Can stories help readers connect with the research on a different level?

In my last post I shared how I've stopped telling my story and how helpful it's been. But writing about my experiences is SO much different than standing (or sitting via Zoom) before an audience.

(I do not like speaking in front of people, even virtually. I sweat like you wouldn’t believe. And I fret about it for days - ok, let’s be honest, WEEKS - before and after. I worry about what I’m going to say, I worry about what I said, I worry about what I didn’t say but meant to say or did say but didn’t mean to say…it’s endless).

But writing! Ah, writing. There’s so much more control about when and what and where. I can come to it when ready, take breaks when needed, reflect and edit and rewrite without the anxiety (and sweating) of people watching and judging me in real time. And I don’t have to share it at all if I don’t want to.

Getting back to writing - where I can think and make sense of things - is why I’ve started up MyCuppaJo again. To continue to explore and reflect on my experiences and what I’ve learned without the constraints of what is expected of me and just see where it leads.

Through writing I can also begin to apply my story in different ways, such as in this article on patient-centered communication recently published in Chiropractic & Manual Therapies. In the article Tamar Pincus, Hollie Birkinshaw and I bring together research findings and how their applications in practice through the lens of personal story.

Each section of the manuscript is split into two parts. We led with my experiences seeking care for my ongoing hip pain, which highlighted different aspects of the clinical encounter, therapeutic relationship, and communication. Each vignette is followed by evidence supporting effective communication practices. We hope that by sharing these practices through the lens of personal story the research will be more relevant, meaningful, and actionable for readers.

For those familiar with research publishing, you know this is a much different structure than your typical musculoskeletal health manuscript. The editors took a chance on us/this, and I hope they're happy they did. I’m not sure how much Altimetrics matter, but the article has gained some interest online. As of this writing our article has been accessed 8107 times and has an Altimetric score of 105 (98th percentile for articles released at the same time and 95th percentile overall) and it’s been out less than a week!

I'm grateful to the editors for publishing it even though it was so outside the norm, and to our peer reviewers who helped us make the manuscript better. And I'm forever grateful to Tamar and Hollie for their all-around awesomeness and especially for challenging the status quo. That’s what excites me about this publication. Not that my story is out there - it has been for years - but that a story is out there and integrated in this way in this type of journal.

I’m excited because I hope the early interest in this unique style of manuscript shows other publishers, editors, and authors that we can share knowledge and research differently. Heck, that we can define knowledge differently. That we can embrace other ways of knowing about pain, health, treatment, recovery. That centering lived experience and integrating personal stories within academic articles can not only be done, it can be successful.

We need different ways of sharing research with the world. And we need to better understand pain and health and human experience from the humans experiencing such things. We can bring these ways of knowing together in meaningful and impactful ways. Stories can help bring research to life, making it more interesting, more relevant, and more accessible for folks by showing why it matters and how it can be applied.

That’s incredibly important as we have a HUGE translational gap between research and practice, not to mention between research and the public. We need the science and the stories, eh?

‘Persons always transcend scientific knowledge…without persons, the practice of medicine has no meaning.’ Michelle Clifton-Soderstrom

I know what some folks might be thinking. But stories are just anecdotes. A story is not evidence. I want to gently (or not so gently) push back on that idea. While no single story is the truth, neither is any single experiment, or systematic review, or meta-analysis. Science is not as objective as we make it out to be. A published randomized control trial also tells a story based on particular beliefs, experiences, expectations, biases, and assumptions, as well as a particular notion of how truth, or evidence, is created.

It’s really a matter of which stories we pay attention to and value, and which ones we don't. For a long time, people with experience of pain (or of other health conditions) have been excluded from the study of pain. Those who dismiss the knowledge they’ve gained through their lived experiences as mere anecdotes often don't interrogate science with the same critical eye. Yet enough stories - enough anecdotes - is data (I borrowed that from this story in The Atlantic about how scientists are taking Indigenous stories about the end of the last ice age more seriously).

In her recent newsletter, Imani Perry also wrote ‘there is value in learning to feel as well as think, to be emotional even as we continue to pursue questions with rigor.’

We can be scientifically rigorous and also incorporate lived knowledge into our understanding of pain. We can find the universal in the specifics of one persons' story, and there are millions of persons we can be centering to learn from and make the research more relevant and meaningful for folks.

A single life contains an entire world. Imani Perry

That data generated from people living with pain is invaluable. Bringing the unique perspectives, insights, and expertise of those with lived experience together with science can help deepen our understanding of pain and lead to better questions and solutions to this complex problem. Co-generating knowledge about pain, and what to do about it, is necessary, not just for patients or people living with pain, but for researchers, clinicians, educators, policy makers, and society at large as well. We all benefit.

That’s why I’m so excited about this manuscript. Not for us as individual authors, but for the future directions that are possible. We don’t have to do things the way they’ve always been done. We can do things differently.

You with me?

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How about with me and Coco? Here’s a recent walkies pic. I hope you are enjoying the changing of the seasons in your corner of the world, and if I don’t post again before the end of the year, I hope you have a wondrous holiday season and a joyous new year.