tribes

Five things I learned about pain this year


  1. Our definitions of pain matter more to researchers and people who like to philosophise about pain than to people experiencing pain. At the same time, definitions do matter because when the IASP definition of pain was first established, the distinction between the neurobiological underpinnings of pain – and the experience – was clear. And this matters because neurobiology is only part of the picture. (Chekka & Benzon, 2018; Cohen, Quintner & van Rysewyk, 2018; Reuter, Sienhold & Sytsma, 2018; Tesarz & Eich, 2017; Williams & Craig, 2016)
  2. The idea of “tribes” in pain and pain management is a misinterpretation of our need to work together as clinicians because pain is complex. The old argument that we’ve omitted “the bio” because we use a biopsychosocial framework for understanding pain is, frankly, ignorant. It’s also destructive because we need one another when we try to help people who are seeking our help. And even if someone has a straightforward sprain, fracture, or whatever – that sprain is happening to a living, breathing, thinking, emoting, motivated person. If we are to break down the silo thinking in pain management, we also need to learn how to work together within an interprofessional team. This means learning to speak a common language. This also means including the person with the pain as part of the team. To think that we can ignore the person and focus only on “the tissues” means we also must agree that our contribution as health professionals could be replaced by an algorithm (Gordon, Watt-Watson & Hogans, 2018; Lötsch & Ultsch, 2018; Shluzas & Pickham, 2018 .
  3. The gap between what is investigated in research institutions and both the concerns of clinicians and patients, and implementing research findings is enormous. Accusing researchers of ‘living in ivory towers’ fails to recognise that most of our active pain researchers in rehabilitation still continue in clinical practice. The gap seems to be between funding agencies (valuing high tech, high impact research) and the concerns of clinicians (often about high value, low tech, and low cost research). There are very active discussions about “how do I use this study” on social media across the board – Twitter, Facebook, LinkedIn, blogging – and these represent possibly the most important vehicles for clinicians, policy-developers, researchers and people living with pain to break down silo thinking and begin to address the factors that contribute to the knowledge translation gap. Many discussions on Exploring Pain: Research and Meaning (Facebook group) end with acknowledgement that funding systems simply do not support collaborative evidence based teamwork (Arumugam, MacDermid, Walton & Grewal, 2018; Bérubé, Poitras, Bastien, Laliberté, Lacharité & Gross, 2018; Chen, Tsoy, Upadhye & Chan, 2018; Romney, Salbach, Parrott & Deutsch, 2018; Tougas, Chambers, Corkum, Robillard, Gruzd, Howard,… & Hundert et al., 2018).
  4. The social part of pain is receiving increased research and clinical attention – and it’s a messy area of study. Social isn’t well-defined – it can mean social psychology, sociology, culture, health systems, media, feminism, political science, legislation – anything where people interact. Social psychology studies investigate things like trustworthiness, gender effects in interactions, stigma (Naushad, Dunn, Muñoz & Leykin, 2018; Sherman, Walker, Saunders, Shortreed, Parchman, Hansen, … & Von Korff, 2018; Wesolowicz, Clark, Boissoneault & Robinson, 2018), while sociology examines diagnoses and power relationships in healthcare – things like being “too young” for a diagnosis of arthritis (Kirkpatrick, Locock, Farre, Ryan, Salisbury & McDonagh, 2018) or validating the pain of menstruation (Wright, 2018) or a diagnosis of fibromyalgia (Mengshoel, Sim, Ahlsen & Madden, 2018). It seems no accident that many of the pain problems needing “validation” occur more often in women, and fail to have “objective” signs. But social means more than labeling and interacting, it’s also about community values and ideas – and how pain is portrayed by people experiencing pain, and in the media (Kugelmann, Watson & Frisby, 2018). The way WE talk about pain, and how we talk about people living with pain. How people living with pain are portrayed and how they portray themselves (ourselves). I suspect the social aspects of our experience with pain are amongst the most complex and most potent in determining suffering (loss of sense of “who am I?”) and disability (“what can I still do?”).
  5. Finally, I am encouraged by the wealth of information being shared freely, discussed passionately, and applied in many different forms around the world. I am proud to have been associated with many different groups as we – you, me, people living with pain, us – keep this topic alive and up-front. While I am no great productive scholar, I publish few peer-reviewed articles, and in the eyes of University hierarchy I am insignificant, I believe the conversations had on social media and into the real world have an impact on how we work in the clinic. If we can achieve the things we talk about, even if we achieve only a fraction of those things, we will have helped more people than we can ever imagine. I feel so privileged to have got to know some of the greatest “lived experience” advocates for greater ‘patient’ involvement in our conversations about pain. Isn’t it time we remembered the old adage “nothing about us without us”? Social media allows us to break the code of silence – and the distinction between “us” and “them” in the world of pain. After all, many of “us” are also living well with persistent pain.


Arumugam, V., MacDermid, J. C., Walton, D., & Grewal, R. (2018). Attitudes, knowledge and behaviors related to evidence-based practice in health professionals involved in pain management. International journal of evidence-based healthcare, 16(2), 107-118.

Bérubé, M. È., Poitras, S., Bastien, M., Laliberté, L. A., Lacharité, A., & Gross, D. P. (2018). Strategies to translate knowledge related to common musculoskeletal conditions into physiotherapy practice: a systematic review. Physiotherapy, 104(1), 1-8.

Chen, E., Tsoy, D., Upadhye, S., & Chan, T. M. (2018). The Acute Care of Chronic Pain Study: Perceptions of Acute Care Providers on Chronic Pain, a Social Media-based Investigation. Cureus, 10(3).

Chekka, K., & Benzon, H. T. (2018). Taxonomy: definition of pain terms and chronic pain syndromes. In Essentials of Pain Medicine (Fourth Edition) (pp. 21-24).

Cohen, M., Quintner, J., & van Rysewyk, S. (2018). Reconsidering the International Association for the Study of Pain definition of pain. Pain reports, 3(2).

Gordon, D. B., Watt-Watson, J., & Hogans, B. B. (2018). Interprofessional pain education—with, from, and about competent, collaborative practice teams to transform pain care. Pain Reports, 3(3).

Kirkpatrick, S., Locock, L., Farre, A., Ryan, S., Salisbury, H., & McDonagh, J. E. (2018). Untimely illness: When diagnosis does not match age‐related expectations. Health Expectations.

Kugelmann, R., Watson, K., Frisby, G (2018). Social representations of chronic pain in newspapers, online media, and film. Pain, in press.

Lötsch, J., & Ultsch, A. (2018). Machine learning in pain research. Pain, 159(4), 623.

Mengshoel, A. M., Sim, J., Ahlsen, B., & Madden, S. (2018). Diagnostic experience of patients with fibromyalgia–A meta-ethnography. Chronic illness, 14(3), 194-211.

Naushad, N., Dunn, L. B., Muñoz, R. F., & Leykin, Y. (2018). Depression increases subjective stigma of chronic pain. Journal of affective disorders, 229, 456-462.

Reuter, K., Sienhold, M., & Sytsma, J. (2018). Putting pain in its proper place. Analysis.

Romney, W., Salbach, N., Parrott, J. S., & Deutsch, J. E. (2018). A knowledge translation intervention designed using audit and feedback and the Theoretical Domains Framework for physical therapists working in inpatient rehabilitation: A case report. Physiotherapy theory and practice, 1-17.

Sherman, K. J., Walker, R. L., Saunders, K., Shortreed, S. M., Parchman, M., Hansen, R. N., … & Von Korff, M. (2018). Doctor-patient trust among chronic pain patients on chronic opioid therapy after opioid risk reduction initiatives: A Survey. The Journal of the American Board of Family Medicine, 31(4), 578-587.

Shluzas, L. A., & Pickham, D. (2018). Human Technology Teamwork: Enhancing the Communication of Pain Between Patients and Providers. In Design Thinking Research (pp. 313-325). Springer, Cham.

Tesarz, J., & Eich, W. (2017). A conceptual framework for “updating the definition of pain”. Pain, 158(6), 1177-1178.

Tougas, M. E., Chambers, C. T., Corkum, P., Robillard, J. M., Gruzd, A., Howard, V., … & Hundert, A. S. (2018). Social Media Content About Children’s Pain and Sleep: Content and Network Analysis. JMIR Pediatrics and Parenting, 1(2), e11193.

Wesolowicz, D. M., Clark, J. F., Boissoneault, J., & Robinson, M. E. (2018). The roles of gender and profession on gender role expectations of pain in health care professionals. Journal of Pain Research, 11, 1121.

Williams, A. C. D. C., & Craig, K. D. (2016). Updating the definition of pain. Pain, 157(11), 2420-2423.

Wright, K. O. (2018). “You have Endometriosis”: Making Menstruation-Related Pain Legitimate in a Biomedical World. Health communication, 1-4.