Temporomandibular Disorders (TMD) represent a particular form of chronic pain that, while not outwardly debilitating, profoundly impacts interactions as fundamental to human existence as smiling, laughing, speaking, eating, and intimacy. Our analysis, informed by an expanded “works of illness” assessment, draws attention to work surrounding social and physical risk. We refer to these as the work of stoicism and the work of vigilance and identify double binds created in contexts that call for both. Conflicting authorial stances in informants’ narratives are shown to be essential in maintaining a positive identity in the face of illness. While earlier ethnographic studies report TMD sufferers’ experience of stigma and search for diagnosis and legitimacy, we present a group of individuals who have accepted diagnosis at face value and soldier through pain as a fundamental aspect of their identity.

BackgroundThe relationship between patient expectations about a treatment and the treatment outcomes, particularly for Complementary and Alternative Medicine (CAM) therapies, is not well understood. Using qualitative data from a larger study to develop a valid expectancy questionnaire for use with participants starting new CAM therapies, we examined how participants’ expectations of treatment changed over the course of a therapy.MethodsWe conducted semi-structured qualitative interviews with 64 participants initiating one of four CAM therapies (yoga, chiropractic, acupuncture, massage) for chronic low back pain. Participants just starting treatment were interviewed up to three times over a period of 3 months. Interviews were transcribed verbatim and analyzed using a qualitative mixed methods approach incorporating immersion/crystallization and matrix analysis for a decontexualization and recontextualization approach to understand changes in thematic emphasis over time.ResultsPre-treatment expectations consisted of conjecture about whether or not the CAM therapy could relieve pain and improve participation in meaningful activities. Expectations tended to shift over the course of treatment to be more inclusive of broader lifestyle factors, the need for long-term pain management strategies and attention to long-term quality of life and wellness. Although a shift toward greater acceptance of chronic pain and the need for strategies to keep pain from flaring was observed across participants regardless of therapy, participants varied in their assessments of whether increased awareness of the need for ongoing self-care and maintenance strategies was considered a “positive outcome”. Regardless of how participants evaluated the outcome of treatment, participants from all four therapies reported increased awareness, acceptance of the chronic nature of pain, and attention to the need to take responsibility for their own health.ConclusionsThe shift in treatment expectations to greater acceptance of pain and the need for continued self-care suggests that future research should explore how CAM practitioners can capitalize on these shifts to encourage feelings of empowerment rather than disappointment surrounding realizations of the need for continued engagement with self-care.

BackgroundPositive patient expectations are often believed to be associated with greater benefits from complementary and alternative medicine (CAM) treatments. However, clinical studies of CAM treatments for chronic pain have not consistently supported this assumption, possibly because of differences in definitions and measures of expectations. The goal of this qualitative paper is to provide new perspectives on the outcome expectations of patients prior to receiving CAM therapies for chronic low back pain.MethodsWe conducted semi-structured interviews with 64 individuals receiving massage, chiropractic, acupuncture or yoga for chronic low back pain. Interviews were recorded and transcribed. Transcripts were analyzed by a team of experienced qualitative researchers using an immersion/crystallization approach to coding and analysis.ResultsOverall, participants’ expectations of treatment outcomes tended to cluster in four key domains: pain relief, improved function (including an increase in ability to engage in meaningful activities), improved physical fitness, and improved overall well-being (including mental well-being). Typically, patients had modest expectations for outcomes from treatment. Furthermore, outcome expectations were complex on several levels. First, the concept of expectations overlapped with several related concepts; in particular, hopes. Participants sometimes used expectations and hopes interchangeably and at other times made clear distinctions between these two terms depending on context. A related finding was that participants were cautious about stating that they expected positive outcomes. Finally, participants articulated strong interrelationships among the four key domains and often discussed how changes in one domain might affect other domains.ConclusionsOverall, these findings contribute to a growing body of literature exploring the role of expectations in patient outcomes. This paper provides important guidance that may help refine the way treatment expectations are studied in the future. In particular, participants’ statements indicate that standardized measures of patient expectations should include items that capture hesitancy to articulate overly optimistic outcomes as well as interrelationships among different outcomes.

Direct-to-consumer marketing has sparked ongoing debate concerning whether ads empower consumers to be agents of their own care or shift greater control to the pharmaceutical industry. Ads for over-the-counter (OTC) medications in particular portend to offer simple, harmless solutions for meeting the demands of social life. Rather than join the longstanding debate between consumer agency and social control in pharmaceutical advertising, I approach self-medication with over-the-counter (OTC) analgesics using Harm Reduction as a framework. From this perspective, consumption of OTC analgesics by chronic pain sufferers is a means of seeking some level of relief while also avoiding the stigma associated with prescription pain medication. Qualitative methods are used to analyze data from two sources: (1) semi-structured qualitative interviews with 95 participants in a trial examining the effectiveness of Traditional Chinese Medicine for Temporomandibular Disorders (TMD) from 2006 to 2011 in Tucson, AZ and Portland, OR; and (2) print, online, and television advertisements for three major brands of OTC pain medication. Participants described their use of OTC medications as minimal, responsible, and justified by the severity of their pain. OTC medication advertising, while ostensibly ambiguous and targeting all forms of pain, effectively lends support to the consumption of these medication as part of the self-projects of chronic pain sufferers, allowing them to reconcile conflicting demands for pain relief while being stoic and maintaining a positive moral identity. Describing OTC medication as “just over-the-counter” or “not real pain medication,” sufferers engage in ideological harm reduction, distinguishing themselves from “those people who like taking pain medication” while still seeking relief. Justifying one’s use of OTC medication as minimal and “normal,” regardless of intake, avoids association with the addictive potential of prescription pain medications and aligns the identity of the chronic pain sufferer with a culturally sanctioned identity as stoic bearer of pain.

In this paper, we explore hope in the context of living with chronic pain. Individuals with chronic pain from temporomandibular disorder(s) (TMD) were interviewed four to five times over the course of their 18-month participation in a clinical trial investigating the effectiveness of Traditional Chinese Medicine. We sought to understand shifts in participants’ descriptions of expectations and hopefulness, particularly with regard to the work involved in counterbalancing positive thinking with buffers against disappointment. We found hope to be a dynamic and multifaceted mindset as distinct from being a single entity to be measured. Drawing upon Polanyi’s concept of tacit knowing, we explore how different ways of hoping emerge and index one another in participant narratives. We offer a working typology of hope and raise as an issue the manner in which the paradox of hope—hoping enough to carry on while keeping hopes in check to avoid the ever-present possibility of despair—complicates simplistic notions of the relationship between positive thinking and the placebo response.