Chronic pain causes suffering and disability that must be managed by the individuals who experience it, but these must also be managed by the culture within which these individuals live. One of my anthropology colleagues once told me, “If you can understand how a culture deals with pain, it is like a thread that you can use to unravel the whole of the culture.” He was speaking of the African cultures that he studied, but he could have been speaking of contemporary American culture. Kugelmann et al.2 examine how chronic pain is represented and refracted through American mass media accounts. They explore how the “consensual universe” of common sense understands chronic pain. They study how expert knowledge about pain enters common sense “altering what counts as real and being altered in turn through assimilation into existing meaning and symbolic structures.” They contrast the first-person accounts of video blogs and memes with the third-person accounts of newspaper articles and film. They argue that this difference in perspective determines the difference in the message transmitted.
We may find it easier to understand how individual experience and expert knowledge affect common sense rather than the reverse, how common sense shapes individual experience. This is because we think that individuals have immediate and indubitable experience of their own pain.5 But, “Individuals can have difficulties describing their pain experiences, so that familiarity with social representations—knowing what ‘one says’ about pain—may facilitate communicating pain experiences.” The authors accordingly sought out “common, ordinary, taken-for-granted representations of chronic pain, not … unusual or singular representations.” These representations are not just pictures, but have persuasive content or “rhetorical thrust.” In the case of chronic pain, this rhetorical thrust is concerned primarily with the reality and legitimacy of chronic pain. Is chronic pain caused by real disease, is it a real disease itself, or is it some other kind of failing masquerading as disease?6 Our answers to these questions shape how our culture responds to chronic pain and how individuals respond to their own chronic pain.
Previous authors have explained that chronic pain poses challenges for patients, not simply because it produces significant suffering and disability, but because they must struggle to legitimize that suffering and disability. Chronic pain is not visible nor are many of its causes.3 This means chronic pain and its associated suffering and disability never achieve the full legitimacy of verifiable diseases. The legitimacy of the chronic pain implies the legitimacy of its consequences and treatments. Legitimate pain produces legitimate suffering, which warrants treatment with, among other things, pain medications. The use of opioids for legitimate pain is not abuse. A major theme in the movie, Cake, is whether Claire is using or abusing her opioids. Is she treating the physical pain caused by her car wreck or the emotional pain of her son's death? As the authors state, “Our results suggest that chronic pain as it circulates in discourses and social actions is inseparable from discourses and practices concerning opioids. The ‘epidemic’ of the former compounds the ‘epidemic’ of the latter.…”
Human groups have evaluated the legitimacy of disability claims ever since there have been human groups.1 Even hunter–gatherer groups need to decide whether to accommodate ill individuals or to keep the group moving so as to maximize the hunting and foraging yield for the whole group. The group must decide whether to stop the group and nurse the ill individuals back to health or to leave these individuals behind to fend for themselves. One way of understanding this evaluation of disability is as a sorting of individuals as those who “can't” fulfill their responsibilities vs those who just “won't” fulfill their responsibilities. A triage process is needed to separate those with real incapacity from those who are lazy or simply avoiding unpleasant tasks. Much of the time, this triage process is straightforward because the illness is visible and easily verified (eg, pneumonia or paralysis). But, chronic pain is neither visible nor easily verified, even in modern society.
In modern disability evaluations, whether for social security, workers' compensation, or within families, we are still searching for a valid and fair method to sort out those who cannot meet expectations from those who just will not meet expectations.7 We put patients with chronic pain into magnetic resonance imaging scanners, physical examinations, or Functional Capacity Evaluations to achieve a legitimate sorting; however, we know these measures do not reliably tell us whether the patient is in pain or whether he is disabled by pain.4 We want medical science to help us with this cultural sorting, but it is not clear whether the difference between “can't” and “won't” for patients with chronic pain is a scientific causal difference or a moral volitional difference. Does discovering that the pain has a physical cause provide us the answer we seek or does the answer lie deeper? Is it truly impossible for this patient to do their old job or does he just need to try harder? Does Claire need more medical treatment or does she just need to pull herself together? The final scene of the movie seems to suggest the latter.
This article by Kugelmann et al. is important because it highlights the cultural contest that is occurring around the problem of chronic pain and the individuals who have chronic pain. They show how first-person accounts of pain from individuals in memes and vlogs battle with third-person, expert-informed accounts in newspapers and films. (Much of the richest content about this contest is in the article's Supplemental Digital Content, so I urge you to read that.) This contest is but a modern media-based version of the illness triage that even hunter–gatherer groups needed to make. Some room must be made by human groups to accommodate the incapacities of ill and injured members. But all claims of illness, especially illness that cannot be verified, cannot be honored. The group itself would not survive this. So, our culture is still casting about looking for the best way to evaluate and accommodate the claims of incapacity among our members. We have not found the ideal strategy that definitively settles these questions about the legitimacy of suffering and disability. Indeed, there may not be an ideal strategy, just the best strategy we can manage given the tools and resources available to us.
Conflict of interest statement
M.D. Sullivan has consulted for Aetna and Chrono Therapeutics. He has had research grants from Pfizer and Purdue.
Video content associated with this article can be found online at http://links.lww.com/PAIN/A701.
. Fabrega H. The evolution of sickness and healing. Berkeley: University of California Press, 1998.
. Kugelmann R, Watson K, Frisby G. Social representations of chronic pain in newspapers, online media, and film. PAIN 2019;160:298–306.
. Rhodes LA, McPhillips-Tangum CA, Markham C, Klenk R. The power of the visible: the meaning of diagnostic tests in chronic back pain. Soc Sci Med 1999;48:1189–203.
. Steenstra IA, Munhall C, Irvin E, Oranye N, Passmore S, Van Eerd D, Mahood Q, Hogg-Johnson S. Systematic review of prognostic factors for return to work in workers with sub acute and chronic low back pain. J Occup Rehabil 2017;27:369–81.
. Sullivan MD. Pain in language: from sentience to sapience. Pain Forum 1995;4:1–11.
. Sullivan MD, Cahana A, Derbyshire S, Loeser JD. What does it mean to call chronic pain a brain disease? J Pain 2013;14:317–22.
. Sullivan MD, Loeser JD. The diagnosis of disability. Treating and rating disability in a pain clinic. Arch Intern Med 1992;152:1829–35.