Works of Illness and the Challenges of Social Risk and the Specter of Pain in the Lived Experience of TMD


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Works of Illness and the Challenges of Social Risk and the Specter of Pain in the Lived Experience of TMD
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Medical Anthropology Quarterly (MAQ).
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Eaves, Emery R., Mark Nichter, Cheryl Ritenbaugh, Elizabeth Sutherland and Samuel F. Dworkin
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chronic pain
works of illness
double binds
temporomandibular disorders
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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.
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1 Emery R. Eav es School of Anthropology and Department of Family and Community Medicine University of Arizona (E mail: Mark Nichter School of Anthropology and Department of Family and Community Medicine and College of Public Health University o f Arizona Cheryl Ritenbaugh Department of Family and Community Medicine and School of Anthropology University of Arizona Elizabeth Sutherland National College of Natural Medicine Samuel F. Dworkin Department of Oral MedicineSchool of Dentistry and Departme nt of Psychiatry and Behavioral Science University of Washington Works of Illness and the Challenges of Social Risk and the Specter of Pain in the Lived Experience of TMD ______________________________________________________________________________ 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 draw s 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 creat ed in contexts that call for both Confli cting 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 [ c hronic pain works of illness r isk double binds t emporomandibular disorders ] ______________________________________________________________________________ I ntroduction Tempor om andibu lar disorder ( s ) (TMD) is a common source of chronic pain affecting the face and jaw. Although not physically debilitating per se, TMD is often associated with intense pain aggravated by activities taken for granted in everyday life talking, laughing, smil ing, eating, kissing, intimacy that are nevertheless fundamental to both public and personal social interaction. We consider the challenges and double bind s faced by sufferers constantly weighing the physical risk of increased pain with the social risk of avoiding meaningful social interaction.


2 In this study, participants had often accepted diagnosis at face value, rarely expressed a sense of threatened legitimacy, and were instead involved in cultivating self identities while coping with unpredictable, int ense and ongoing pain. Earlier anthropological studies of TMD among individuals seeking treatment in pain clinics found that sufferers had often consulted several practitioners and spent considerable energy searching for diagnosis and legitimization that their ailm ent was not "just psychological" ( Garro 1992 ; Good 1992 ; Lennon et al. 1989 ; Ostermann et al. 1999 ) Fifteen years after this first wave of anthropological research on TMD, we encountered a very different health care seeking scenario that included gre ater access to health information via the I nternet ( Bury 2001 ) changing definitions o f "normal" ( Williams 2000 ) and more widespread familiarity with TMD as an ailment. M any study participants recruited from the community rather than from pain clinics were not seeking legitimizat ion but rather had already self diagnosed with TMD or had been diagnosed by dentists or physicians based on clicking sounds in their jaws prior to experiencing any pain Whether or not their diagnosis was accurate being informed early that there was litt le or nothing one could do" about TMD influenced health care seeking behavior S ome of those afflicted never sought additional diagnosis, legitimacy, or treatment for pain C oping with constant albeit unpredictable pain entails many life adjustments and is a constant source of concern Minimizing physical and emotional risk through constant vigilance is challenging as sufferers attempt to be stoic in the face of pain, avoid social risk, and maintain meaningful social roles. L iving in a state of embodied risk ( Kavanagh and Broom 1998 ) and constant vulnerability to symptom flare ups ( Hunt et al. 1998 ; Nichter 2003 ) a ffects interpersonal relationships and leads th os e w ith TMD to adopt a n "at risk role ( Nichter 20 03 2010 ) W e draw attention to contexts in which physical risk is weighed against social risk (risk to present and possible future social relations) and to how th os e in pain balance multiple "risk r oles" within hierarchies of risk ( Connors 19 92 ) Chronic pain or illness introduces disorder to the temporality of lived experience ( Antelius 2007 ; Bulow 2003 ; Garro 1992 1 994 ; Honkasalo 2001 ) Unlike terminal illness or cancer in which sufferers "li ve in prognosis ordered by the stages of illness ( Jain 2007 ) the everyday experience of chronic pain provides no temporal context, no stages or patterns on which to pin one's sense of a life process. TMD sufferers are not at risk for becoming ill or for an unknown future B ut they are at risk for a previously experienced level of pain. T he temporality of experience, or lack thereof, influence s the daily experience of those with chronic TMD. The "works of illness" conceptual framework originally outlined by Corbin and Strauss ( 1985 ) and further developed and used in medical resident training by Nichter ( 2002 2005 ) provides a useful lens to examine the work engaged in by those living with TMD pain in addition to or as an alternative to seeking treatment The works of illness framework encompasses thr ee general lines of work : (1) everyday life work ; (2) illness work ; and (3) autobiographica l work 1 Each line of work requires specific adaptations and levels of effort. Everyday life work includes domestic chores, occupational work, marital and social rel ations work, child rearing, and the emotional work of both managing one's own emotions and not overburdening others. Illness work involves diagnosis and monitoring, routine symptom management, flare up s and crisis prevention, health care seeking, and asses sment and information gathering. Autobiographical work involves coming to terms with illness and adjusting one's identity accordingly, revising one's illness narrative in different contexts and for different purposes, and adjusting how one thinks about and plans for the future.


3 The works of illness conceptual framework is useful as it identifies the challenges and tasks those with TMD face regardless of disability and pain severity ( Nichter 2002 ) In this article, we describe ways in which people living wi th TMD manage the risk and impact of pain throughout their lives. A reas of particular salience that emerged in informant narratives include works we refer to as the work of stoicism managing multiple arenas of social risk and attempting to appear normal an d the work of vigilance maintaining constant awareness of pain, eliminating triggers, and managing the physical risk of acute pain episodes. We use the heuristic "work" when describing vigilance and stoicism for three reasons. Work implies that purposefu l effort is being expended. Work is respected and it entails social relations and responsibilities. Further, the meaning and implications of work are readily understandable and applicable to the experience of both patients and clinicians. Hay ( 2010 ) considers increased suffering experienced by chronic illness sufferers unable to live up to culturally patterned expectations of stoicism Employing the frame of the work of illness, we co nsider the experience of sufferers who, at least outwardly and in the present, meet such expectations There is more involved than resolve, as v igilance and stoicism are entangled with all three lines of work noted above This entanglement entails hierarch ies of risk ( Connors 1992 ) that often invo lve double bind s (as illustrated in Table 1) The concept of the double bind has been described ( Bateson et al. 1956 ) in terms of primary and se condary injunctions, and usefully applied to chronic illness and disability (e.g. Alexander 1981 ; Ingram and Hutchinson 2000 ; Krefting 1990 ) as well as sexual decision making ( Muehlenhard and McCoy 1991 ) Double bind s occur when adaptation in o ne domain of life paradoxically proves problematic in an other. Those living with TMD often employ multiple voices, selves, or social identities ( Goffman 1959 ; Strauss 1997 ) when describing different works and the double bind s they face Identifying these voices and appreciating these double bind s adds to our understanding of the challenges TMD sufferers face as they attempt to minimize stressors, negotiat e social relationships and maintain some modicum of control by attending to states of subjective risk ( Tul loch and Lupton 2003 ) M aterials a nd Methods TMD, colloquially called "TMJ is the third most common chronic pain disorder in the U nited S tates after chronic low back pain and muscle tension headache. Estimated lifetime prevalence is between 10 to 25 % of the general population, with higher rates reported for women than men ( Dworkin 2011 ; Glass et al. 1993 ) The primary symptoms of TMD, including chronic pain affecting the face's muscles and temporomandibular joint (TMJ), negatively affect everyday activities, social relationships, and the emotional states of sufferers. TMD is frequently associated with depr ession and other health problems ( Dworkin 2007 ; Slade et al. 2013 ) The semi structured, open ended interview s on which this analysis i s based were conducted as part of a dual site (Tucson AZ ; Portland OR) randomized phase 2 trial of traditional Chinese medicine (TCM) with or without self care training for TMD (For full description of the overall study and samp le characteristics, see Ritenbaugh et al 2012 ) Participants were recruited through community outreach and newspaper advertisements that described a study evaluating TCM for jaw and facial pain. One hundred eighty six participants (approximately 85 % female) consented to the trial Of those, we asked approximately every other participant to be interviewed up to five times over the course of their experience in the study.


4 Table 1. Interact ions between stoicism and vigilance across 3 lines of work Work of Stoicism Work of Vigilance Working to appear normal, to live normally in spite of pain, and to hide pain from others; "just dealing with it"; soldiering through any amount of pain Working to avoid pain triggers, avoiding increased pain "flare ups"; hyper awareness of physical body and pain levels Mana ging Social Risk Managing Physical Risk Everyday Life Work Working to minimize the impact of pain on social relationships and activitie s; participating in social activities and making a "payment" of increased pain In professional and public situations: Eating and talking normally; smiling to avoid appearing anti social; With significant others: m anaging others' emotions; not burdening others with pain; participating in family activities; maintaining intimate relationships Sleeping enough to avoid being irritable and to be productive Working to avoid situations likely to result in pain flare ups; eliminating activities known to cause/i ncrease pain Avoiding crunchy/chewy foods; not talking too much/too long; not smiling or laughing too much; avoiding intimate activities involving mouth; Hyper vigilance against clenching/grinding during sleep Not seeking care; accep ting original diagnosis, and "just handling" pain; self diagnosis with books or internet; not mentioning TMD to PCP to avoid stigma of being a chronic pain patient Avoiding being "someone who likes taking pain medication" 3 by avoiding prescription pain me ds (or if taking them, emphasizing severity of pain) Reliance on mouthguard; working to describe pain severity to family members or physicians when necessary Taking large doses of OTC meds to manage pain (working to construct them as not pain medication 4 ); Not taking pain meds to retain bodily awareness and ability to monitor pain Illness Work Autobiographical Work Working to create stoic moral identity; avoiding stigma by not drawing attention to pain Keeping up hope for improvement 5; expressing hopefulness and po sitive attitude to significant others; Denial that TMD impacts future plans Working to stay focused on the present; maintaining "at risk ro le" always attentive to pain Keeping hopes in check, not hoping for too much as a form of vigilance against possibility of despair


5 Working to accept pain and to care for the self and the body on one's own; requires knowledge about the condition Avoiding prognosis; Working to keep hopes up by avoiding too much negative information or accepting that pain is "chronic" Due to the small number of men in the study, we interviewed as many of them a s possible in addition to inclu ding every other participant. Although some did not continue through all follow up interviews, n o participants declined to be interviewed at baseline. A series of five i nterviews were designed to be conducted : (1) prior to a ny treatment; (2) after self care training and prior to TCM treatment; (3) approximately 2 mont hs after starting TCM treatment; (3) 6 mont hs after starting TCM treatment; and (4) 2 3 months after the 0 end of treatment. Eligibility criteria included ages 18 70, worst facial pain > 5 on a 0 10 scale, and research confirmation of TM D diagnosis ( http://www.rdc ). A ll procedures were approved by the University of Arizona and Oregon College of Oriental Medicine institutional review boards and all participants provided informed consent. I nterview guides were designed to capture patients illness experience prior to study interventions and throughout treatment. Baseline interviews cover ed br oad themes such as family and social support, work situation, stress, illness history, medication use, expectations, hope, explanatory models of illness, experience of stigma, and past treatment seeking prior to entering the study. Follow up interviews exp lored treatment experiences, changes in coping, changes in illness experience changes in ideas about illness, additional treatment seeking, and other topics varying by relevance to the participant E mery Eaves conducted all interviews with participants in Tucson and some via telephone with participants in Portland Elizabeth Sutherland and an additional interviewer conducted in person interviews in Portland. All baseline interviews were conducted in person. Some follow up interviews were conducted over t he telephone to reduce partici pant burden I nterviewers were trained and monitored by Mark Nichter an anthropologist with significant experience in ethnographic interviewing in clinical as well as community contexts I nterview experiences were exchanged a nd problems discussed in regular conference calls to maintain consistency across sites Early interview experiences were discussed and frustrations elicited in order to train i nterviewers to expect performative and rhetorical aspects of illness narrative c onstruction in the context of the interview ( Buchbinder 2011 ; Goffman 1959 ; Labov 1972 2013 ; Miczo 2003 ) and to encourag e participants to speak reflexively in a way that freed them to employ several d ifferen t "voices" representing var ious aspects of their lives ( Tanggaard 2009 ) Ninety five p articipants participated in baseline (pre randomization ) interviews ; 44 complete d four or five interviews for a total of 2 71 interviews. Eaves transcribed i nterviews transcribed verbatim and coded them using ATLASti 6 .0 ( Muhr 2011 ) B asic code structure consisted of a s et of themes that encompassed descriptions of patients pain and its predictability/unpredictability, stressors that led to pain flare ups, behaviors that fell under all three aforementioned works of illness, medication use, and social relationship s. Aspec ts of TCM treatment and change s in many areas of participants' lives were also carefully coded and will be the subject of in depth analysis in forthcoming articles Eaves, Cheryl Ritenbaugh and Nichter


6 held r egular meetings to discuss code descriptions an d emergent themes, to maintain consistency and to interpret findings. Informants were mostly women 18 69 years of age, primarily middle class Anglo Americans with steady jobs. Most lived with families or in long term relationships. TMD pain onset had occ urred recently for some and as early as adolescence for others. Our gender distribution matched estimates for population distribution overall (s ee Ritenbaugh et al [2012] for full sample details ) Use of over the counter analgesic medications was common, w hile routine use of prescription pain medications occurred in about ten percent of participants ( s ee Elder et al. [ 2012 ] for medications analysis ) A few reported usi ng sleep medications. Lack of adequate health insurance coverage for TMD or complementary therapies was often a motivating factor to join the study. Quotes have been assigned to "named" individuals to indicate gender and differentiate between participants ; all names have been changed to protect anonymity. In the following section, we first describe the work of stoicism and then the work of vigilance. We then consider how they interact with one another to create double binds and hierarchies of risk as they collide with original works of illness. T he Work of Living with TMD: Participant Experiences Stoicism and Vigilance in the Context of Other Works of Illness Table 1 provides an illustrative summary of how the work of stoicism and the work of vigi lance discussed in detail below, interact to create multiple hierarchies of risk and double bind s. Vigilance and stoicism lead to situations requiring continual trade offs as they intertwine with the three originally conceptualized lines of work described above We found that participants faced double binds that forced them to privilege one type of risk over another In many social contexts, for example, engaging in the work of stoicism meant that concerns about social risk outweigh ed physical risk. In the case of v igilance work, avoiding social situations altogether involved the work of declining to participate in activities while still trying to maintain social ties The Work of Stoicism: "Just Dealing with P ain" Our community based sample was recrui ted for a clinical trial of TCM Eligible participants had worst facial pain levels of 5 or above on a 0 10 scale. Notably, o ver 40 % of 186 participants had not sought care for TMD pain within the past six months, and more than 10% had never sought care W e report here on the entire study sample to highlight the fact that despite entrance criteria requiring high pain levels, many entering the study were not actively seeking care. In contrast to earlier anthropological studies of patients seeking diagnosis a nd legitimacy for chronic pain in pain clinics ( DelVecchio Good et al. 1 992 ; Jackson 2005 ) many participants in this study reported being diagnosed with TMD by dentists or general practitioners based on clicking sounds in their jaw before experiencing pain. One said: Well my uh, my family dentist was the one that, you know, noticed it cause it's squeaky while he's touching me and, he was very understanding and, D o you know have TM TMD "? H e called it "TMJ ." But uh, I just tried to relax it. (Carol, 61)


7 Receiving a diagno sis before pain onset curtailed treatment seeking for many participants who were told by clinicians there was little they could do. Unlike Garro's informants (1994), many people in our study had seen only one practitioner. In addition, several were self di agnosed with TMD based on books, I nternet research, or hearsay and had never sought treatment. I don't really know, um, I think it was just someone talking about, W ell that's the way TMD is, it's that your jaws pop." And probably the first time I figured out that I had it was when I yawned and it you know when you yawn and all of a sudden it hurts? That's probably when I figured it out. (Margaret, 63) After receiving a diagnosis of TMD from their dentist or PCP, most participants in this study had been offered dental splints, muscle relaxing medications or narcotic pain medicatio ns. Several participan t s who chose to try recommended treatments and found them inadequate reported a process of being referred back and forth between doctors, dentists and sp ecialists ( see Ostermann et al. 1999 ) until they became discouraged and discontinued searching for a medical fix to their problem. And so I was in some intense pain and it was so funny because as soon as I got to the doctors they tell me I should go to the dentist, and then as soon as I go to the dentist they tell me they can't do anything for me, I have to go back to the doctors. And so it s a lot of shifting back and forth, and I didn't have a lot of time as a student and working full time and so I ve just kind of d ealt with the pain. (Lisa, 30) Others chose not to seek recommended treatments or interventions knowing they were cost prohibitive and chose instead to "just let it go I d been discussing the jaw problem with my dentist for a couple of years ... And he had been recommen ding that I go see this specialist that creates some kinda really high tech splint. But, I never could afford it and it wasn t gonna be paid by my insurance. So, I just let it go. (Bonnie, 57) When asked about TMD in daily life, many participants initiall y responded that TMD does not interfere with their lives. Despite reports of high levels of pain, the majority insisted that they "just deal with it "just handle it or "just ignore it" and continue to live "normally" in spite of pain. No reason to conc ern anybody else and have anybody else get upset about it. Uh, no I just put up with it, that s all. (Hank, 65) Most participants stated matter of factly that TMD pain was something they had to soldier through because it is not outwardly debilitating and because other matters (such as family and friends, work, or other illnesses) warranted greater attention. When it's really bad I can't sleep and I can't eat so my energy level and my outlook on life at that moment is a little bit less than thrilling. Bu t my lifestyle doesn't change because of it. (Melanie, 30)


8 While virtually all of our informants at some point downplayed limitations and employed a voice of stoicism they also shifted back and forth from the voice of the normal to voices of affliction as they went on to talk about TMD's major impact on their physical, social, and emotional lives. Pain to me is something that's debilitating in a sense. It changes the way that you move in the world. (Melanie, 30) [quoted above saying "my lifestyle does n't change because of [pain]" ] Participants emphasize d their silence in dealing with pain They worked to keep pain to themselves, even while bringing attention to a range of impacts o n their lives Attempting to convey t he severity of pain place s sufferer s at risk of violating social proscriptions against whining or complaining about pain ( Hilbert 1984 ; Werner et al. 2004 ) A voice of stoicism of soldier ing through any amount of pain is culturally sanctioned and central to sustaining a positive sense of self ( Hay 2010 ; Hermans 2001 ; Smith and Sparkes 2008 ; Wilce 1998 ) This voice at once articulates inner strength and confirms the ability to maintain meaningful social roles de spite varying degrees of impairment Further, many participants in this study referred to "people who have chronic pain" as different from themselves. As noted by Jackson ( 2005 ) they distance themselves from what they per ceive to be a stigmatize d chronic pain identity associated with medication dependency if not abuse. Linda, quoted below, reported being unable to work due to severe pain. Pain limited her participation in household tasks and she described exasperation on her husband's part over her refusal to continue seeking treatment. Despit e this she referred to herself as someone more able to handle chronic pain tha n others People who have chronic pain, can t, don t know how to manage their pain. Um, it can be very discouraging for them. I think I know how to manage my pain because I turn it off as much as I can. And I do a lot of things to make it better, like yoga or walking. But people, a lot of times, haven t explored that. So the people that will be coming thro ugh [the study] and I m not one of those, I think I'm going to be a little different for you, but I m not one that gets real discouraged. (Linda, 62) "I'm not the type of person who" commonly preface d statements in which participants worked to p osition th emselves as different from stereotypical pain sufferer s Individuals in other studies of chronic pain report ed fac ing considerable stigma at work and in social situations ( Jackson 2005 ; Lillrank 2003 ; Reid et al. 1991 ) Most participants in our study however, said they rarely spoke to others about their pain I don t like attention drawn to things like [TMD]. I once hurt my knee and had to wear a brace and I hated that. You know, like people coming up to you, "O h what s wrong with you? I m not somebody that tries to have injuries and get attention. I d rather be out there and just fine and nobody knows what's wrong with me. (Patricia, 58) I don't go out of my way to explain to people that I have it. I'm not proud of it. It's not something that I carry around like a badge of courage. It's just, I live with it. I'm not looking for sympathy. (Larry, 52)


9 Although when describing our research on TMD in varying situations researchers commonly heard phrases such as O h, I have TMD" or "I know someone with terrible TMD," several participants in this study reported ne ver having met anyone else with the condition. Altho ugh somewhat isolating a positive outcome of r esistance to ever discussing pain with others was a lack of any reported experienc e s of stigma associated with TMD Participants were a ware however, of stig ma surrounding other conditions such as fibromyalgia or chronic fatigue syndrome and were careful to construct their experience o f TMD pain as categorically distinct from other conditions considered socially or medically suspect. It's nice to know people a re researching this. That it's, it's not like fibromyalgia or something where people think it's just, um, either just in your head, or they think it's just stress that causes it or, I think there's more to it. For some people it's stress, for some people i t's muscular, some peop le it's arthritic. (David, 54) Remaining stoic and n ot becoming "somebody that tries to get attention" requires significant work Social i nteraction s are weighed in terms of risk and opportunity cost. Often, the physical risk of i ncreased pain is eclipsed by the "social risk" ( Casta–eda et al. 201 0 ; Nichter 1994 ) o f avoiding some of the simplest of social activities including talking, smiling, laughing, and eating with friends and family. Further, we identified two arenas of social risk that a rise in living with TMD and differ from each other: social risk in public and work contexts and social risk in family and intimate contexts In work and other public contexts participants work to hide pain or illness altogether, thus avoiding the social r isk of assuming a chronic pain identity. I'd be walking down the aisle [at work] and somebody'd say, "Go ahead and smile. It doesn't hurt." And I thought about that later and I thought, you know, it does hurt. It hurts to smile. (Lloyd, 54) The repercuss ions of failing to smile at others in a work environment and thus being perceived as unfriendly or even hostile are easily apparent. Laughing, smiling, and talking which lead to pain, are key elements in maintaining work relationships and place sufferers in a double bind Similarly m any work and social encounters revolve around food and eating, another area of particular difficulty for those living with TMD. To avoid offending well meaning friends or family members, our informants presented a stoic self, eating what was prepared for them, knowing it will cause a pain flare up later. Hiding pain, while involving physical risk, allows sufferers to live normally in social contexts and make their own decisions about balancing risks It takes the spark out of l ife. I'm very easy going, and I'm a joker and I just don't talk as much as I used to Smiling is (cringes) but laughing is a killer And I'm always joking around and playing around with my daughter and, I still do but I always know, and I do, and I pay for it later but you know, you gotta make that payment. (David, 54) In relationships with significant others, however, the experience of pain cannot be entirely hidden. As significant others become involved in attempting to manage risks, or shelter s ufferers from perceived risks, additional double binds are often confronted. Sufferers now also must work to avoid burdening significant others with their experience of pain.


10 You know, so I feel that kind of guilt ... dragging them down too. And they overc ompensate. "Well we don't have to go, what can you eat tonight?" like W hat restaurant do you want to go to." And I say "I'll go anywhere. I you know I'll find something on the menu that I can eat." "Oh no no no, we can't go for that. " And, and you g et into that argument almost, where I'm saying, "I don't want you to do this, like don't do this because of me. Cause it makes me feel worse by you not having what you want." (David, 54) Juggling risks of pain with other forms of risk continues into the most intimate areas of individuals' lives. Sexuality is another area of significant work for these informants. The experience and fear of chronic pain can have profound effects on intimate relationships ( Bral et al. 2002 ; Schlesinger 1996 ; Smith 2003 ) When I want to make love with my lover, but my jaws hurt so bad that I can't kiss her, well, that's an effect that it has. There are times when an explanation just, you know, isn't quite eno ugh The first [few] times we had to deal with it, it's, for somebody who's never experienced it, W addaya mean (breathes into her hand and smells, as though she is checking for bad breath) you can't kiss me right now? What?" ( Taylor 53) The communica tion work involved in explaining to partners that lessened sexual desire results from the pain of the disorder, not from relationship problems, is particularly challenging and introduces double bind s for all involved. Abstaining from sexual contact means d enying partners the experience of pleasure compromising one's stoic posture, and burdening one 's significant other with pain. T o engage however, is to suffer in the moment or after the act. Partners are also caught in a double bind Partners may be afrai d of initiating sex for fear of causing pain. On the other hand, not initiating sex can be read as distance. As much as they could, p articipants often chose to bear pain in social and intimate situations and pay the price later in the form of increased pai n and in ability to work the next day, difficulty sleeping, and so on. M any also chose to not to discuss pain with medical practitioners to avoid calling too much attention to TM D and risk assuming the stigma of being a chronic pain patient They maintained credibility as stoic patients for some unknown future time when they would need to be taken seriously. "Medicine talk" or d iscourse on avoid ing pain medications as a personal choice wa s integral to constructing a stoic sel f N arratives about choosing not to use prescribed medications were common and provide d yet another means of distancing oneself from stigmatized illness careers as well as establishing moral identity. I m concerned about an entire culture being addicted to, you know, Pfi z er. So I have po litical reasons that I m concerned with medicine but, on a personal level I m, I m not the kind of person that s going to, I know this the classic answer, but I m not the kind of person to be addicted to pain medicine. (Dennis, 32) Amalia, a participant re ceiving a government sponsored pension due to her disabled status from multiple chronic pain conditions including f ibromyalgia, described pain as "a job Despite descriptions of debilitating pain constructions of a stoic and positive self were essential elements of her narratives.


11 I take the good and brush the bad aside, you know? The negative. I try to stay positive. (short pause) Yeah, that's how I take life, I have to you know, with the pain and everything you know So, that's how I live my life, an d like the pain is just another job that I have to do every day and I just take care of it cause there's not much more I can do about it. ( Amalia, 61 ) This voice of acceptance, of knowing there's "not much more I can do about it" and being positively res igned to living with pain was only one of the voices participants employed In another voice, participants described rearranging lives around pain, avoiding any pain triggers, and being constantly aware of the risk of pain. Vigilance Work: Fear and t he W ork of Avoiding Triggers In opposition to the work of stoicism as a means of managing social risk is the work of vigilance as a means of managing physical risk. While most participants could soldier through pain on a daily basis, they expressed concern about flare ups of acute pain that result in migraines, neck pain, and other ailments that disrupt daily routines and require retreat to dark, quiet places. It can get pretty bad. To the point where it interferes with my ability to think, if that makes s ense. It s just so painful that I it s hard to think about things and I just want to kind of be left alone and like, ow I m hurting and and don t bother me, and I can t think about anything and I ve got to make this pain go away before anything else ca n happen. And that s not the norm for me but it does happen. (Jessica, 30) The knowledge that pain can intensify without warning makes it difficult for some with TMD to plan their lives. The se TMD suffere r s take on an "at risk" role rather than a sick rol e. Assuming an at risk role entails careful monitoring of bodily sensations and the work of remaining vigilant ( Lupton 1999 ; Nichter 2003 ) To reduce anxiety, informants described rearranging their lives to avoid triggers associated with flare ups as much as possible. The importanc e of minimizing pain triggers was clear to the research team when we asked participants to map daily pain patterns. They rejected the exercise. While many reported that pain was worse in the morning (due to poor sleep and lack of bodily control, explored f urther below), patterns of pain were difficult to identify because if participants had previously noticed a pattern they believed they would already have eliminated the pain triggers associated with it I wish I could see a pattern. For a while I thought it had to do with my pillow and my sleeping position. And I ve tried a bunch of different things and it, if there is a pattern I haven t been able to notice it. Foods that I eat comfortably one day, another day might cause my jaw to lock. So no I haven t been able to discern a pattern. (Helen, 57) The experience of chronic pain makes it difficult for sufferers to describe a timeline of pain in terms of when pain is felt and with what circumstances ( Good 1992 ) Informants emphasized that not only did pain fluctuate unpredictably, but that even when not consciously


12 aware of spike s in pain, pain was latent. T hey were not ready to identify pain free times or map out daily pain patterns. It could be a couple of weeks where I try to eat and my jaws will lock up or I yawn and I ll they ll lock up. It could happen um, it could not h appen at all. I m still getting to know the stages, of what happens. The stage I m in right now I ll get pain. Chewing pain, and mouth headaches, there s time I get terrible headaches from it, but right now I m going through a stage where it s um, shootin g pain. It started being on the right side, it used to only be on the left side. So there s no um, particular pattern, I jus t, I don t know what triggers it. ( Shawna, 42 ) Refocusing on the Present: Vigilance against Biographical Disruption As Garro ( 1994 ) has also noted, i magi ning a future filled with pain may be too mu ch to bear. Unlike cancer sufferers who are "living in prognosis" ( Jain 2007 ) with lives defined by illness stages, chronic pain has no stages. There is no temporality at all as sufferers work to live with pain on a daily basis with no k nowledge about how one will feel from one day to the next We found that our questions about the future w ere threatening. When participants in this study were asked about how their illness had affected long term life plans as a means of probing biographica l work, they often denied that TMD had affected future plans They immediately refocused conversation on the daily experience of vigilance against increasing pain. I wouldn t say it's affected [my future plans] at all. How it s affected my life? I just hav e to be more conscious, conscious of foods I eat, chewing gum I sleep with a night guard every night and if I don t, I definitely wake up in pain. But, nothing that s changed my outcome for the future, just awareness, behavioral changes. (Cindy, 36) As Williams ( 2000 ) points out, biographical disruption (disruption in the forms of knowledge that underpin structures of everyday life (see Bury 1982 1991 ) occurs when one anticipat es or is com mitted to certain events taking place In this context, a voiding talk about the future is part of vigilance not only against pain tr iggers, but also against the repercussions of a disrupted biography or of failing to live up to one's own expectations by ma intain ing a sense of living a normal life in the present Thinking too much about the future was identified as threatening by several informants, and as leading to despair. It was deemed healthier to focus on the present and make do. I just feel like if I don t get things more in place now, that it s just going to be harder and I m going to be less physically capable but it s hard. I don t really have an answer besides just trying to prepare, or get as strong as I can now I m aware of my future but I don t want to be all like freaked out. (Chl š e, 31) The risk role adopted by our participants is distinct from that assumed by someone at risk for ill ness but who is not yet ill Those with TMD feel at risk of flare ups they have already experienced and ca rry with them as an embodied memory Avoiding this type of risk is a form of harm reduction associated with feelings of latent vulnerability linked to notions of both flare up and possible illness transformation ( Nichter 2003 ) The practice of h arm reduction is limited to


13 doing what one can to prevent preexisting health problems from worsening. Unlike progres sive illness where the "worst is yet to come many in this study had already experienced the worst imaginable pain associated with the condition. The ir sense of risk ar ose not out of fear of an unknown future, but fear of a known past, of returning to a p revious experience of pain. When it starts hurting a lot, then I remember how bad it s been at times and I have an emotional reaction instead of just the physical pain. Because once you ve been through it a couple of times it s like (clenches teeth), oh m y gosh (Helen, 57) Despite statements that TMD did not affect their plans for the future, many of our participants did employ a voice of concern about what would happen as they aged. Many worried that pain might worsen over time. Most forms of TMD are n ot considered degenerative and in many cases pain subsides with age ( Egermark et al. 2001 ; Magnusson et al. 2005 ) Few participants we spoke to appeared to be aware of this, however, and this concern was not a subject they rais ed with health practitioner s 2 Too much information could undermine one's ability to hope and to live "in the subjunctive mode" ( Good and DelVecchio Good 1991 ; S impson 2004 ) P articipants worked to remain hopeful and "open" to the future by focusing on daily existence and not on prognosis ( Ea ves et al. 2014 ). D iscussion Previous ethnographic accounts of TMD have emphasized the search for pain diagnosis and the frustration often fe lt by patients seeking medical validation for illness. In contrast to earlier landmark studies ( Garro 1992 ; Good 1992 ) those living with TMD in this study reported greater initial awareness of the existence of the condition, acceptance of the nature of the diagnosis, and resignatio n to the improbability of successful biomedical treatment Instead of focusing on the search for legitim acy the se illness narratives centered on remaining v igilan t to pain triggers and maintaining a stoic present oriented identity in the face of pain Pa in is spoken about differently in varying contexts in keeping with different works of illness, audiences, and the dialogical construction of self ( Goffman 1959 ; Hermans 2001 ; Hermans et al. 1992 ; Smith and Sparkes 2008 ) Interviews that are attentive to the li feworld of the chronically ill invite reflection on many different aspects of life and result in multi voiced polyphonic narratives ( Clark and Holquist 1984 ; Holquist 1990 ) Within i llness narratives, sufferers employ rhetorical devices not only to create meaning, but to p resent themselves as moral individuals ( Buchbinder 2011 ; Butler 2005 ) The presence of multiple voice s in the narratives we collected was striking Participants shifted between a voice of stoic sufferer working to "just deal with it" and keep pain from interfering with life to a voice of vigilant sufferer working to recognize pain triggers and minimize so urces of flare up ever aware of the risk of returning to a past experience of unbearable pain. Informants use d different voices to describe myriad presentations of self in particular contexts T he unique c ontext of open ended interview s conducted by an in terviewer one came to know over time and attentive to the many "works of illness" sufferers routinely engage afford ed participants adequate space and time to share different aspects of their illness experience and identity struggles ( Miczo 2003 ) Others have observed contradictions inherent in the lived experience of chronic pain. Hilbert ( 1984 ) for example, has pointed out that "for sufferers in social setting s pain


14 management is as ongoing as chronic pain itself. They do not engage willingly, nor can they abstain from it contradictory pressures to disclose and to conceal exist simultaneousl y forcing sufferers to engage in an awkward bal ancing act between two extremes (370; emphasis in the original) We found an expanded works of illness conceptual framework a productive heuristic to flesh out the multidimensional nature of the TMD expe rience the ways sufferers cope with the unpredictability of symptoms and the double binds they face while living their lives as best they can T wo areas of narrative and interactional work emerged from our interviews T he work of stoicism requires soldi er ing thr ough pain to navigate two arenas of social risk. Stoicism work involve s both cultivating professional or public identities as well as maintaining family, social and sexual relationships Avoiding risk entails managing one's own concerns while bei ng attentive to role expectations and the emotion al needs of others. The work of vigilance requires sufferers to maintain constant awareness of pain and potential triggers. The unpredictability of pain complicates coping with TMD as the anticipation of pai n is difficult to separate from the experience of pain itself ( Jackson 2005 ) F ear of pain flare ups and constant attention to bodily signs and symptoms involves a string of decisions such as whether or when to use pain medicine a nd how to contend with the op portunity costs of appearing ill or socially disengaged. Fear of symptom flare ups leads to the adoption of an "at risk" role. Sufferers are confronted with shifts in a hierarchy of physical and social risks and constantly weig h risks in terms of outcomes and priorities when deciding whether to avoid increased pain or to engage with family friends or significant others V igilance and stoicism involve work in relation to one another, as well as in conjunction with each of the t hree originally conceptualized works of illness ( Corbin and Strauss 1985 ; Nichter 2002 2005 ) In everyday life, sufferers actively choose to mitigate pain or participate in social life on a constant basis. P ain was not always the principle concern but rather was weighed against the social risk of avoiding smiling, talking, eating, and intimacy. In terms of illness work, treatment seeking, whic h could perhaps have mitigated physical pain, was complicated by the social risk of assuming a chronic pain identity or of admitting one could not "just deal with it On the other hand, seeking treatment was also a performance of appropriate hope and vigi lance to significant others, regardless of individual expectations or prior experience In autobiographical work the risk of facing an altered biography, a life of illness, or unending pain led sufferers to refocus their attention on the pre sent Autobiog raphical work entailed effort to appear and to feel normal in the present through purposeful avoidance of expectations for oneself or o f the future that would entail a disrupted biography and thus increased suffering if not met ( Hay 2010 ; Williams 2000 ) Our ability to generalize about the experience of individuals with TMD is limited by the study context. Participants were recruited from the community, rather than a tertiary care pain clinic, to a research study offering TCM Although these participants could be characterized as willing to try a complementary and alternative medicine (CAM) therapy, they are also not the same population who would be found already seeking care in complementary and alt ernative medical care settings since most were not already seeking CAM when they joined the study It is possible, due to the nature of the intervention being studied that the number of individuals not wanting to use pain medications is overrepresented in our sample Attitudes toward medication as an example of stoicism work, however, applied to a broad range of our participants whether using pain medication or not. Additionally, observable difference s between these individuals and those whose voices have been reported in studies of patients recruited from pain clinics provides


15 an alternative and complementary perspective on the experience of living with this chronic pain condition. The small number of men ( n =17) in our sample is reflective of gender distri bution of TMD in general, but precludes detailed analysis by gender. We note, however, that no gender differences were readily apparent among participants. In sum, i ndividuals with substantial chronic pain from TMD recruit ed from the community, who joine d a study of fering no cost T CM treatment provide unique insight s into the lived experience of TMD. Changes in medical treatment of chronic pain over time, as well as in the public's awareness of it seem to have influenced the way TMD is perceived and exp erienced Rather than contradicting earlier anthropologi cal insights into TMD this research provides an updated account of TMD. Here, we have identified stoicism and vigilance as central works of illness and elucidated double binds created in situations w here both are required. S ignificant effort therefore go es into living with ever present pain, maintaining a meaningful identity, and retaining some modicum of hope for one self and significant others. Future ethnographies attentive to the many works of il lness beyond diagnosis and treatment seeking will provide us a more nuanced understanding of lived experience of ch ronic pain and the social risks of assuming a chronic pain identity. Notes Acknowledgments The authors would like to thank Beth Yohal em Ilsley for her interviews in Portland; project staff, practitioners, and dentists for their contributions; and our participants who willingly completed this series of interviews on a personal and difficult topic. Funding for this research was provided b y a grant (U01 AT002570 ) from the National Center for Complementary and Alternative Medicine, National Institutes of Health. 1. O ther forms of work engaged in by those affected include translationa l work (explaining one's ailments to others in terms they can understand), illness advocacy and support group work, and religious and spiritual work ( Nichter 2005) 2. I t is unlikely that even if participants had asked practitioners about the prognosis ass ociated with TMD they would have learned of its common improvement with age since most practitioners are not familiar with the specifics of the condition, particularly because of its ambiguous definition somewhere in between medical and dental professions. 3. See Eaves et al. 2013 4. Eaves et al. 2013 5. M ultiple ways of hoping and the work of avoiding despair in chronic pain is also the topic of in depth analysis in a forthcoming manuscript. References Cited Alexander, L 1981 The Double B ind between Dialysis Pa tients and Their Practit ioners. In The Relevance of Social Science for Medicine L. Eisenberg and A. Kleinman, eds. Pp. 307 329 Boston: Reidel. Antelius, E 2007 The Meaning of the Present: Hope and Foreclosure in Narr ations about People with Severe Brain Damage. Medical Anthropology Quarterly 21:324 342.


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