Just listen - Exploring the Lived Experience of Pain
By: Linnea Thacker, Physiotherapy Resident, MSc(PT), DMA

This blog post is the first of a series based on the Yoga and Science in Pain Care book club series, a 15-part course based on the book by the same title, edited by Neil Pearson, Shelly Prosko, and Marlysa Sullivan.

Most of us in the health and rehabilitation professions devote our lives to helping people in pain. Many of us have taken multiple courses on pain in search of more effective tools to help our patients or clients, perhaps even here on Embodia, where there is a wealth of such offerings.

One of these offerings is Yoga and Science in Pain Care, a 15-part course based on the book by the same title. Led by the editors, Neil Pearson, Shelly Prosko, and Marlysa Sullivan, along with the contributors of each chapter, the course explores the application of yoga to pain care through the lens of our current understanding of science.

One of the great strengths of applying yoga to pain care is that it invites us to see pain not only as a medical condition, but as a human experience, and to connect with the human at the heart of that experience. We are invited to listen to and validate a person’s experience with pain, to hear their suffering and their struggles to make sense of their world. Importantly, we are invited to listen to all of this without immediately rushing in to try to fix it all. And that is where the challenge lies.

Meet Joletta:

Joletta Belton is well aware of the challenges faced by health and rehab professionals when encountering an individual experiencing pain. She is the author of the first chapter of Yoga and Science in Pain Care. As a pain advocate with her own history of chronic pain, Joletta is all-too-familiar with health professionals’ tendencies to “listen” to a patient while formulating a response or to stop listening in order to jump in and try to fix the problem. She experienced these behaviours as a patient over and over again, as she made her way through the healthcare system.

Joletta’s story:

Joletta was a self-proclaimed badass firefighter paramedic. She reveled in the physicality of her work and spent hours at the gym in her time off. She was strong and fit, and was proud to be able to use her strength in service of her community.

One day, when stepping off the fire engine, she missed a step and experienced a twinge in her hip. A small twinge. Something that would quickly resolve on its own. Except it didn’t. Rather than resolving, it got worse.

As her symptoms progressed, she moved through different treatments, constantly seeking ever-elusive relief, “failing” physiotherapy, injections, and surgery. Along the way, she acquired a long list of labels to explain her pain: labels of damage, dysfunction, and disorders, of weakness and instability, poor alignment, poor posture, and dysfunctional movement. She also acquired a long list of “no’s”: no lifting, no running, no climbing, no awkward positions. Her beliefs around what she shouldn’t and couldn’t do expanded, but for all the rules and all the treatments, her pain didn’t diminish.

Finally, on the advice of her surgeon, she left the medical system to find her own way through her pain experience. Joletta returned to school, where she was introduced to pain science and began to make sense of her pain for the first time. She shares her whole story in the course and in the first chapter of Yoga and Science in Pain Care. Her writings can also be found on her website.

As a pain advocate, Joletta is a compelling speaker, inviting listeners in and challenging us to explore what it might be like to just listen to a story of someone in pain.

Just listen. 

Without interrupting with additional questions. Without questioning whether the story aligns with our understandings of how pain or the healthcare system work (or should work). Without trying to identify problems and solutions.

Just listening.

Joletta’s invitation to healthcare providers to listen is not unique. There’s plenty of research to back her request. The remainder of this blog post will explore some of this research.

The challenges of just listening:

Listening to the story of someone in pain is challenging. We empathize with the person in pain and want to help. Indeed, those of us in health and rehab professions are typically trained both explicitly and implicitly to jump in and try to solve the problem. Rice et al. elucidate this trend with beautiful clarity in a compelling 2018 article “Medical trainees’ experiences of treating people with chronic pain: A lost opportunity for medical education.” In their article, they explore how their participants wrestle with not being able to fix chronic pain, and how this inability to fix the problem creates dissatisfaction and frustration when working with patients with chronic pain. They share many insightful quotes from their participants, including one from a medical resident who, reflecting upon medical training, articulates.

And yet, repeatedly, research reminds us that patients overwhelmingly want care from their healthcare professionals. In a 2019 article entitled “What makes a chronic pelvic pain patient satisfied?” Wygant et al. identified five themes amongst their patient participants’ responses.
The most commonly reported?

“Providers with a compassionate and caring attitude” (p 240).

This theme overlapped with their second, and also pervasive theme: “listening”.

Two different worlds:

The discrepancy between the perspectives shared in these two studies might be comical if it didn’t have such devastating implications. The medical students and residents interviewed in Rice et al.’s study repeatedly commented on how physicians’ inabilities to alleviate patients’ pain led to dissatisfied patients, and in turn, physicians. Meanwhile, Wygant et al., referencing the 90 surveys from pelvic pain patients that made up their data, comment, “interestingly, very few patients mentioned the goal of pain relief in their responses. It was of significant importance to these patients to have a provider that spent a quality amount of time listening to their pain stories and believing in their pain. Empathy and kindness were integral to their satisfaction” (p. 241). 

There is a stark disconnect between what our patients want from us, and not only what we believe they want, but also what is emphasized for us in our training as health and rehab professionals.

Going beyond patient satisfaction:

Patient satisfaction is certainly important, but it’s not the only thing that benefits when healthcare providers listen to their patients. A 2021 meta-ethnography of 195 qualitative studies identified that feeling validated is a key part of the healing process for people living with chronic pain (Toye et al., 2021). This validation can take the form of simply having one’s pain story heard and valued. Furthermore, validation can reawaken self-care abilities in the patient (Arman and Hök, 2016). In an interesting counterpoint to the medical resident’s reflection that medical training does not include how to care for patients, Arman and Hök observe that “the journey to health begins when the sufferer experiences what it is to be cared for” (p. 380).

Next steps:

So how do we begin to change our practices? We might start by listening, just listening, to the next patient who comes to us with pain. Listening to the story of who they are as a person, not as a body part to be fixed. How their life has been affected by their pain. How they are endeavouring to make sense of their pain. How they are trying to find a way forward.

Just listen.

References:

Arman, M., & Hök, J. (2016). Self-care follows from compassionate care - chronic pain patients’ experience of integrative rehabilitation. Scandinavian Journal of Caring Sciences, 30(2), 374–381. https://doi.org/10.1111/scs.12258

Rice, K., Ryu, J. E., Whitehead, C., Katz, J., & Webster, F. (2018). Medical Trainees’ Experiences of Treating People With Chronic Pain: A Lost Opportunity for Medical Education. Academic Medicine, 93(5), 775–780. https://doi.org/10.1097/ACM.0000000000002053

Toye, F., Belton, J., Hannink, E., Seers, K., & Barker, K. (2021). A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies. Pain Medicine, 22(6), 1333–1344. https://doi.org/10.1093/pm/pnaa373

Wygant, J. N., McGuire, L. J., Bush, N. M., Burnett, T. L., Green, I. C., & Breitkopf, D. M. (2019). What makes a chronic pelvic pain patient satisfied? Journal of Psychosomatic Obstetrics and Gynaecology, 40(3), 239–242. https://doi.org/10.1080/0167482X.2018.1476486