The power of the visible: the meaning of diagnostic tests in chronic back pain

PERGAMON

Social Science & Medicine 48 (1999) 1189±1203

The power of the visible: the meaning of diagnostic tests in chronic back pain Lorna A. Rhodes a, *, Carol A. McPhillips-Tangum b, Christine Markham c, Rebecca Klenk a a University of Washington, Seattle, WA 98195-3100, USA Prudential Center for Health Care Research, Atlanta, GA, USA c University of Texas±Houston Health Science Center, Houston, TX, USA b

Abstract This article explores the meaning of diagnostic tests for people with chronic back pain. Lower back pain is one of the most common health problems in the US. Five to ten percent of the patients who visit a primary care provider for back pain ultimately develop a chronic condition. We draw on interviews with chronic back pain patients in Atlanta, Dallas and Seattle to argue that testing constitutes an important element in the legitimation of pain for these patients. We discuss three aspects that make testing an area of concern for patients: a strong historical connection between visual images and the medicalization of the interior of the body, a set of cultural assumptions that make seeing into the body central to con®rming and normalizing patients' symptoms, and the concreteness of diagnostic images themselves. Our interviews show that when physicians cannot locate the problem or express doubt about the possibility of a solution, patients feel that their pain is discon®rmed. Faced with the disjunction between the cultural model of the visible body and the private experience of pain, patients are alienated not only from individual physicians but from an important aspect of the symbolic world of medicine. This paper concludes by suggesting that a ¯uid, less localized understanding of pain could provide a greater sense of legitimacy for back pain patients. # 1999 Published by Elsevier Science Ltd. All rights reserved. Keywords: Chronic back pain; Diagnostic testing; Illness narratives; Cultural and historical context of illness experience; USA

Introduction In this article we explore the meaning of diagnostic tests for people with chronic back pain. Drawing on interviews from a study of chronic back pain patients' attitudes toward treatment, we argue that testing constitutes an important element in the legitimation of illness for these patients. To understand the relationship

* Corresponding author. Fax: +1-206-543-3285.

between testing and the legitimation of illness we explore connections between cultural and historical assumptions about the anatomical body and patients' accounts of their experiences of the process of diagnostic testing. We show that visual objecti®cation of the body plays a strong part in the power of tests to provide either positive experiences, which encourage patients to align with their medical providers or, on the other hand, negative experiences of discon®rmation, which lead to alienation and a continued search for resolution.

0277-9536/99/$ - see front matter # 1999 Published by Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 9 8 ) 0 0 4 1 8 - 3

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Issues of validation and legitimation are important for patients with chronic conditions (Kleinman, 1992). For patients with chronic back pain these issues are intensi®ed by the fact that the problem may be invisible both externally (in terms of physical appearance) and internally (as negative or inconclusive diagnostic tests) (Jackson, 1992; Jackson, n.d.). Ware (1992), writing about chronic fatigue syndrome, notes that, ``Selfdoubt... the threat of stigma [and]... the shame of being wrong about `really' being sick all contribute to the psychic su€ering of the chronic fatigue victim'' (p. 355). Illness that cannot be seen or armed by `objective signs' threatens a crisis of meaning which most patients will go to some length to resolve (Kleinman, 1988). The consequences of delegitimation are made clear in compensation regulations that consider ``pain... the basis of a ®nding of disability only when medical signs... show a medical condition'' (Osterweis et al., 1987). Thus while in other conditions a positive test may be feared, for back pain patients a positive result arms a `real' problem and allows their su€ering to become ``an acceptable illness, one that can be handled'' (Coulehan, 1985, p. 370). This article is based on the results of a study in which we interviewed patients with chronic lower back problems to answer the question: ``What motivates patients with these problems to return again and again for medical care, even when conventional treatment o€ers them little relief from their pain?'' Virtually all of our respondents said that they were driven by diculties in performing their daily activities to seek the cause of their pain (McPhillips-Tangum et al., 1998). For a signi®cant subset of our sample, diagnostic testing was an important aspect of this search. These 1 Atlanta and Dallas participants were enrolled in an independent practice association (IPA) model health maintenance organization (HMO). Participants in Seattle were enrolled in a sta€-model HMO. The large number of participants allowed us to draw on a reasonable sample from each city for future comparative purposes. 2 Twenty-three ICD-9 codes were used to identify medically attended episodes of low back pain from the administrative databases of the HMOs. By using the selected ICD-9 codes, we included only patients with mechanical low back pain and excluded those with neoplastic, infectious or in¯ammatory causes (Cherkin et al., 1992). Our preselected set of ICD-9 codes included codes for conditions such as sprains and strains in the lumbar, sacral and sacroiliac regions, sciatica, spondylolisthesis, lumbar stenosis and degeneration of the lumbar or lumbosacral disc. 3 These participants rated their pain at the time of the interview as moderate or greater using a scale on which moderate is de®ned as higher than 4 on a pain scale of 0±10. Thirty percent of participants experienced leg pain described as worse than back pain (suggestive of a herniated disc).

patients gave highly charged descriptions of being tested and asserted that testing had either con®rmed or delegitimized their pain. In the ®rst two sections of this paper we describe our study, the issues involved in diagnostic testing for back pain, and the general context of concern about legitimation that informs the comments of the patients we interviewed. We then turn to a thematic analysis of patients' interviews to show that because tests have the power to legitimize pain, they can contribute to a sense of alignment with medicine or, on the other hand, alienate patients with inconclusive or negative results. Finally, we present two case histories that demonstrate the embeddedness of our themes in patients' illness narratives. We conclude with some brief suggestions for alternatives to current testing practices. Methods Our study explored chronic back pain patients' experiences of pain, self-care and medical treatment. The study was carried out in Atlanta, Dallas and Seattle; in each city participants were enrollees of a managed health care plan at the time of the interview1. Using computerized data bases at each site, we randomly selected 110 patients from a larger pool of eligible patients; patients were eligible who were between 25 and 65 years of age and had experienced three or more medically attended episodes of low back pain during the three years preceding the study. Episodes were de®ned as one or more visits for low back pain spaced at least 90 days apart from any other visit for low back pain. These selection criteria were chosen to approximate the population of patients who experience mechanical back pain and its treatment2. Seventy patients agreed to be interviewed (McPhillips-Tangum et al., 1998). Of these, 16 are excluded from our discussion because they spoke primarily of experience with chiropractors and there is evidence that patients who visit chiropractors di€er signi®cantly from patients who visit medical doctors (Shekelle et al., 1995; cf. Coulehan, 1985). Of the 54 remaining participants discussed here, 20 were men and 34 women. Their age range was 26±65, with a mean age of 47. The majority were white (72%), married (72%) and employed (69%). Sixty-three percent of these patients experienced other recurrent pain problems, especially joint pain in the upper and lower extremities. Sixty-one percent were experiencing pain at the time of the interview3. Thirty-one percent of participants had had surgery for low back pain; only 7% had ®led a worker's compensation claim. Three trained interviewers with graduate degrees in anthropology or sociology conducted in-person, in-

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depth, semistructured interviews with each participant. Interviews were 60±75 min long and were carried out in participants' homes or worksites between May and July of 1995. All interviews were audiotaped and transcribed. Thematic analysis was conducted by members of the research team; one researcher (CM) coded the transcripts and used ethnographic software to determine frequency of themes. A questionnaire mailed to each participant 6±8 weeks after the interview con®rmed the signi®cance of the themes.

Diagnostic testing and the invisibility of back pain Low back pain a€ects 70±80% of American adults at some point in their lives (Frymoyer, 1988) and is one of the most common health problems in the US (Deyo and Yuh-Jane, 1987; Deyo et al., 1991)4. Five to 10% of the patients who visit a primary care physician for back pain ultimately develop a chronic condition (Andersson et al., 1991). Our study was designed to reach these patients. All the participants in our study describe pain that interferes with their work, activities of daily life and family relationships. Even those who reach some resolution or accommodation with their pain fear its return and continue to shape their lives to avoid it. Our study con®rmed others showing that treatment is frequently ine€ective, and that back pain patients are often dissatis®ed and eventually become doubtful of medicine's ability to help them (Deyo, 1983; Cherkin et al., 1991). A number of imaging tests are used to locate the source of acute or chronic back pain, including plain radiography (X-ray), computed tomography (CT) and magnetic resonance imaging (MRI)5. Although the availability and use of these tests has broadened in recent years, researchers are also questioning the expense and usefulness of this conventional diagnostic approach to low back pain6. Jensen et al. (1994) show that MRI testing reveals spinal anomalies in a high percentage of patients without symptoms, suggesting that the correlation between test results

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and patients' experience of pain is, at best, problematic. While the biomedical model holds out hope that diagnostic tests can provide accurate diagnosis, e€ective (often surgical) treatment and permanent resolution of pain, this ®nding suggests that their meaning is far more ambiguous. In our study 53 (98%) of the 54 participants said that diculty with normal activities drove them to seek care; 51 (95%) sought to discover the cause of their pain. Twenty-four (45%) talked about their experience of diagnostic imaging tests. This group included the 16 (30%) who had had surgery; the remaining eight (14%) described being tested but had not had surgery. Thirty-one of our interviewees (57%) talked about issues related to the need to legitimize their back pain and back condition; of these, 15 (28%) talked about testing as an aspect of legitimation and 16 (52%) felt that members of the medical profession did not believe their accounts of pain or that they had a serious condition. Nine of the participants who discussed legitimation (29%) spoke of the role of negative tests in delegitimizing their pain. Eighteen (33%) said that the invisibility of back pain was problematic and led others, including family members, coworkers and employers, to question the legitimacy of their complaints The issues of testing, legitimation and visibility are tightly linked in interviews in which they are mentioned together. This comment is typical and touches on many of the themes we will be addressing. ...people have a problem talking to their doctors. Because they (doctors) just don't pay them much attention. They don't, they're not listening to what you say... [they] try to tell you back aches are psychosomatic and your back couldn't be hurting, [that] there's nothing, no reason for it to hurt. Xrays don't show anything and you don't really have a back ache. Oh yes I do, yes I do... but back aches are hard to see. Unless there's something that's a visible thing, it's kind of your word against who's looking.

4

Back pain is the leading symptom prompting visits to orthopedic surgeons and neurosurgeons, and the second leading symptom prompting visits to primary care physicians (Cypress, 1983). 5 Myelogram is less used today but mentioned by some of the patients we interviewed. 6 Clinical practice guidelines advise using imaging tests only in response to speci®c signs and symptoms. During the ®rst month of acute back pain imaging tests are most likely to be bene®cial only for patients who are at risk for systemic diseases that can cause back pain (US Department of Health and Human Services, 1994).

As another patient said, ``I'm so healthy, and [people] look at me and they don't understand the severity of this problem I have''. In this situation patients must depend on words, on their ability to speak e€ectively to disbelief. As Jackson puts it in her ethnography of a pain clinic, ``[Clinic] patients... were sometimes not accorded the social recognition provided by the sick role... communicating [the pain] to others can be as intractable and ba‚ing a problem as the pain itself'' (Jackson, n.d., p. 6).

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People who have not experienced it don't have a clue as to what you're talking about. They haven't got a clue. If you haven't experienced it or lived with someone [who has], you don't even begin to understand what kind of pain you're talking about.

I've gone round and round getting him [the doctor] to realize the amount of pain that I'm in. I would love to ®nd a doctor I could trust that does have lower back problems. I think that would be a revelation.

These patients describe a situation always slipping toward disbelief and delegitimation, one that they have to actively Ð if sometimes ine€ectively Ð protest if they are to retain a sense of the integrity of their own experience. Of the 31 people in our sample who discussed legitimation, a vehement minority of three commented about the possibility that other patients do `fake'7. [P]eople getting insurance money for their back, it hurts people that actually have a problem.

I guess because in the past people have faked back injuries, when you have a back problem you have 7

Although not central to our argument here, it should be noted that the issue of the `reality' and meaning of pain relates to capitalist production in several ways. The mechanistic model of the body is itself a product of economic models which emphasize its productive capacity (Martin, 1987). Physical symptoms may express the tedium or resentment of mechanistic production (Martin, 1987) and providers may play a role in the mysti®cation of stresses created by forces of production (Waitzkin, 1991). An approach that attempts to avoid the medicalization of workplace pain can be found in Fordyce, 1995. 8 Foucault (1975) discusses the di€erence between the previous `medicine of species' and the modern `medicine of spaces' in which the inner space of the body becomes penetrable by the medical gaze. This formulation assumes the constructed and political nature of the body and suggests the importance of control over the body in modern societies. See also Armstrong (1983). 9 Duden (1991) is a historian who discovered detailed notes kept by this doctor in which he transcribes his patients' narratives as well as his own opinions and treatments. The patients, in Duden's view, are not so much seeking cure as they are enlisting the sympathy of the doctor for su€ering which they believe to be inevitable.

to go through so much to prove to people that you do have a problem. Patients who did not point so explicitly to this possibility described feelings of being undermined by the disbelief of their providers, families and friends. We will show that it is in this context of delegitimation that testing gains meaning as a visual representation of the truth of pain. We turn ®rst to a discussion of the historical and cultural context that informs the connection between diagnostic tests and the legitimation of illness. All quotes in the remainder of the paper are from interviews in which patients spoke about diagnostic testing.

The anatomical body and the body in pain Recent work in history and anthropology suggests the historical speci®city of modern images of the body (Foucault, 1975; Armstrong, 1983; Romanyshyn, 1989). An extensive discussion is beyond the scope of this paper, but we draw on this literature to suggest that the concern with the visual representation of illness expressed by the participants in our study has roots in biomedical and popular attitudes that privilege this form of representation. Prior to the seventeenth century, and despite the existence of dissection and some anatomical understanding, medicine was not primarily a study of the inside structures of the body8. However, with the development of modern anatomical science, clinicbased medical care, modern surgery and modern visual perspective, the body came increasingly to be understood as a `specimen', an object with an interior space knowable through [primarily] visual means (Foucault, 1975; Romanyshyn, 1989). Good (1994, p. 72±73) describes the visual training experienced by medical students learning to see the body in this way. ``As the skin is drawn back, a di€erent `interior' emerges... [A] `whole other world' becomes the paramount reality in the anatomy lab''. Dissection, the Xray and recent more sophisticated tools for visual diagnosis all create an `inside' body, another world that can be seen, accurately represented through drawings, photographs and computer images, and, ultimately, manipulated through surgical and medical intervention. In a study of an eighteenth century German doctor, Duden (1991, p. 106) shows that he and his patients shared a vivid language that embedded su€ering in narratives in the context of an impenetrable body9. For the German doctor and his patients:

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The body is opaque. It is a place of hidden activities. As long as a person was alive, his body could not be opened, his inside could not be deciphered. People could speculate about its inside only with the help of signs that appeared on the body or emanated from it.

Prominent among these signs were the patient's own words (Foucault, 1975). In contrast, modern visual representations, from anatomy texts to advertisements, have fostered a common understanding of the body as an inner space, a container in which organs and structures operate somewhat like the engine in a car10. A true representation of the situation inside this space cannot be trusted to words alone. One of our informants explicitly made this point. My back hurt. And you know, I tell [the doctor] what's up. And he still won't examine me to see if I'm telling the truth or not. I [don't] understand... sitting across the room and telling [you] [you're] not hurting. You know, you've got to put your hands on somebody... you can't ®x a car by looking at it11!

The anatomical understanding of the body depends on two related assumptions that inform both medical and lay understanding. 1. The inside of the body corresponds to visual images of it. The body is `®lled' with organs that can be made visible in the same way that a landscape is visible through a window (cf. Romanyshyn, 1989, p. 128). This `view' is objective, showing the body as it `really' is. 10 Martin (1987) has shown that middle class American women align their descriptions of their bodies with scienti®c imagery, sometimes privileging a mechanical model over their felt experience. She found that working class women tended to stay closer to felt experience and were more likely to resist medical theories and treatment. This di€erence around women's discussion of reproductive organs and functions may not extend to a problem such as back pain in which people of all classes ®nd themselves, initially, with an experience for which they do not have anatomical images as readily available. 11 This comment also suggests that the doctor should be able to discern the presence or absence of pain itself (rather than injury) by examining the patient. 12 Sullivan (1995) points out, however, that pain is still an experience `within language' in the sense that its expression is still mediated by social experience.

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2. The variations in people's bodies can be measured against norms Ð objective standards Ð that show what is typical and what is deviant. This process can reveal how an individual manifestation of disease is both speci®c and an instance of a general type (Foucault, 1975). As the quote by the patient who wanted to be touched suggests, pain often drives the desire to know the inside of the body. Pain is the most private of human experiences; the person in severe pain su€ers an `unmaking' and disintegration of the normal relationship between self and world, along with diculty in conveying this experience to others (Scarry, 1985)12. Garro describes how ``illness transforms the `lived body' in which self and body are uni®ed and act as one in the world, to the `object body' where the body is a source of constraint and is in opposition to self'' (Garro, 1992, p. 102, quoting Gadow, 1982). In his phenomenological study of the body, Leder (1990, p. 76±77) notes that the healthy body is `absent' to perception; we do not normally feel our body at all. When in pain, however, the body emerges to perception, becoming an `alien presence'; ``aversive, involuntary and disruptive, the painful body emerges as a foreign thing''. The physician showing test results to a patient provides a visual representation of the body as a `site of disease' (Good, 1994). These representations are taken for granted as simple representations: while an expert is needed to read them, their correlation to the body seems nothing more than common sense. However, the patient who sees an image of the inside of her own body while, at the same, experiencing her pain `from the inside', is, in fact, faced with a uniquely modern task. Writing about the use of ultrasound imaging for pregnant women in Greece, Georges (1996) notes the sensuous, compelling nature of the image which pulls the women into a valued form of `contact' with their fetuses. The images seen by pain patients, while negative in their connotations, o€er a similar sensuousness and concreteness. They call on the patient to align herself with their reality, demanding to be read as factual evidence of a match between the inside of the body as `specimen' and the inside of the body as the private and incontrovertible ground of experience. We have discussed three elements that combine to make testing an arena of concern for patients: a strong historical connection between visual images and the medicalization of the interior of the body, a set of cultural assumptions that make seeing into the body central to con®rming and normalizing patients' symptoms and the sensuousness of diagnostic images themselves. This potent convergence of elements forms the background of the interview material that follows.

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Seeing it in black and white: patterns of alignment or alienation When participants in our study were asked to describe their experience of back pain, most told a story that included when and how it started and what they had done to resolve it. Diagnostic testing was embedded in these stories both as something done to them by the medical system Ð something over which they had little control Ð and as something they actively sought, interpreted, accepted or rejected. In Section 6 we present two narratives in which this sense of active engagement appears as part of a larger story. Here, we use themes articulated in the interviews to show that patients' engagement with testing in¯uences both their attitudes toward medicine and their interpretation of the meaning of their pain. Since the accounts we gathered are retrospective, they tell us what patients considered the salient aspects of their history, but do not provide objective data on the actual frequency or utility of speci®c diagnostic tests for our sample. Patients with histories of pain often experience both of the patterns described here. For some patients, diagnostic tests produce results in which the visual image seems to correspond exactly to the experience of pain. When this happens, the visible deviation inside the body is described as satisfyingly concrete. [T]hey ran some tests and that's when they realized my whole spinal column was kitty catty womper.

yeah, it's just a bulging disc... degenerative disc disease. So that's when it was more of a reality and it's like, see, I told you. But you know it was solid proof, it wasn't just aches and pains anymore.

They did a myelogram and between the myelogram and the CT scan it de®nitely showed I had a ruptured disc. Well, I ®gured that's what was wrong, I mean, obviously it wasn't just a minor back problem. What is proved here is that what has been experienced corresponds to what is represented by the test. The sensuousness of the image, its black and white concreteness, provides not only a meaningful diagnosis, but evidence that the pain itself is meaningful: it points to something beyond itself that can, perhaps, be remedied. Q. So it sounds like you're happy with the diagnosis.

A. Yeah, I don't question it one bit. [All] anybody with a grain of sense would have to do is be shown the X-rays and it's right there, right in front of `em.

I felt relieved. I felt like, well, here's proof. It's not just me going crazy or complaining. It's black and white and anybody can see it.

As the link between pain, diagnosis and possible relief, test results can become the ®nal authority, something that must be insisted upon, regardless of cost or resistance from the physician, because only the test can show what is `really' there.

[The doctor] showed me and... he showed me where it hurt. He said, your disc is kinda bulging out there, just kinda laying on this nerve.

I know doctors are just hesitant because of the expense and I know the insurance companies are trying to cut costs... but if someone is truly in pain, the MRI is the only thing that is going to tell them what's wrong, where the root of the problem is.

Patients for whom something `shows' on tests emphasize a feeling of justi®cation, of not being `crazy'. Tests `show where it hurts' and con®rm the reality of pain; in fact, patients repeatedly use the word real to describe this con®rmation and remark that what `shows' is `obvious' and `concrete' (see Jackson (1992), p. 143 for a typology of `unreal' forms of pain). The ®rst CT scan [was] almost two years ago and that's when it was really concrete. It came back,

The patient who says `I told you' suggests the history of speaking to disbelief that often precedes these moments of con®rmation. The cultural assumption of correspondence between body and image discussed above is what `anyone knows'. This common sense tells patients that only tests can show what is wrong; when they do, the patient is in possession of `solid proof'. Patients describe these moments in terms of a satisfying alignment with their doctors. Viewing the test result is described as an almost collegial interaction in

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which the doctor shows them what the results mean or describes the exact plan for an operation or the precise nature of an intervention. And when I went to the neurosurgeon I took my MRI results with me. He looked at `em for one minute and said, honey, you have fractured your disc and [pieces] have fallen down and are pinching a nerve... He was very comforting, he assured me that this was one of the lesser back surgeries.

They did some X-rays and [he] brought me back, looked at me and says, ``Look, see the line over here? That's normal''. And I had this nice clear joint line. On the right side, it was kind of fuzzed out. He said, ``Looks like you have a touch of arthritis coming. That's where your pain is''.

[A]fter [surgery], he X-rayed me and showed me di€erent things. This is what I did here and this is what I did there.

[W]hen he takes an X-ray, he'll... put that X-ray up for me after he's analyzed it, and he'll draw a line this way and a line this way and come right down the spinal column like that... and he's shown me on there where it was o€ by this degree...

The X-rays were just great. He would line them up from the old X-ray to the [latest] X-ray to make sure there wasn't any movement [after surgery].

The emphasis in these comments is on the interaction rather than on the details either of testing itself or of the experience of surgery. They suggest that the doctor's participation and apparent pleasure in the analysis of the images is a component of the conviction of concreteness with which patients come away from these interactions. The doctor is described as including the patient in a gesture in which they stand side by side gazing together at the `object body' as it is made 13 This quote reinforces the point we are making about the representational nature of tests Ð from the physician's point of view nerves can not be seen on X-rays.

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visible and external to them both. Gadow (1982, p. 86) notes that: The body that a patient experiences and that which a practitioner treats are seldom the same. For the person in pain, the body may be an excruciating immediacy. For the clinician, the same body may be an object to be examined or Ð more abstractly Ð a problem to be solved. As they share the results of tests, physicians seem to provide patients with a moment in which they are both examining the body `abstractly'; for a moment both are on the same side of the `window' into the body that the test represents. This quote shows how the sense of reality induced in these moments can reverse a patient's sense of delegitimation and arm her su€ering. I'm sure he thought that there was something wrong with the spine but nothing really serious. And they had done a CT scan which had turned up nothing. And they had done a normal X-ray which turned up nothing... And he kept telling me, we're just not ®nding anything. And I said, well, you can't hurt this bad and there not be something wrong... So ®nally, I think because I was insistent about it, he decided to do a myelogram... and I was laying on the table... and the technician said `Oh my gosh!' and I knew he had found it. And he called one of the doctors in. In an instant this patient goes from feeling disbelieved Ð that she has to `insist' in the face of repeated disappointment Ð to an intense feeling of relief, despite the fact that what has been found means that she faces surgery. What she had been saying to her doctor could not be heard until, to her joy, it could be seen. Patients who describe events like this express satisfaction even when the diagnosis itself does not suggest imminent or even eventual relief. It was wonderful... he showed me on the X-ray the nerves that were pinched13. What happens when this `wonderful' alignment does not occur? Intractable pain may not `show up' on any test, nor do test abnormalities necessarily correspond to the cause of pain (Jensen et al., 1994). Patients whose ®ndings are negative or inconclusive must face a disjunction between their inner experience of the reality of a body that has become an ongoing negative and constraining in¯uence in their lives and the `normality'

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of their test results. Like the patients quoted above, they are caught in trying to ®nd legitimation for what they say, but without the resolution o€ered by tests they remain in an alienated position, seeking but not ®nding a sense of alignment with their providers. I told my doctor once that I felt like, my back hurt so bad I felt like I had a large grapefruit down about the curve of the back... Course there's not a grapefruit there and they X-rayed me and there's nothing there. The `nothing' found on tests suggests that there is no reason, and therefore perhaps no justi®cation, for the pain. And without justi®cation for it, what is its status? As we have seen, to be `real' is to `show up' visually. To anticipate the words of a patient whose story we will report at greater length in Section 6: ``The doctors... left me with the impression [my pain] was not real''. Our study does not tell us what doctors actually said to patients, but what patients believe they heard14. Many heard an enthusiasm for psychological explanation in the face of negative test results. As Jackson (1992, p. 142, emphasis in original) notes, ``Even though a psychologically minded physician may try to reassure the patient that he or she is not suggesting that `your pain is imaginary'... the patient will very likely see the physician as suggesting just that''. An assumption of psychological causation is entirely consonant with the cultural underpinnings of the anatomical body: if pain is not `in' the body, where can it be but in the mind? And then you've got the doctors for four years telling you, ``Well, we can't ®nd anything wrong. It's all in your head''. And you're going, no, it's right here. My head ain't down here''.

...and that's where I got into the problem where they would give you those tests and tell you, ``You don't have a problem''. And you know you got a problem! Here, the apparent transparency and simplicity of testing Ð its promise to reveal the inside body Ð betrays the patient who ®nds herself with subjective certainty but no proof. The task then becomes one of 14

Some patients expressed pity for doctors who appeared to have good intentions but nothing to o€er them.

conveying `a dilemma so quiet' that others assume it cannot be a serious problem (Morris, 1991, p. 67). To be believed, the patient must ®nd ways to `perform' pain, either through language Ð ``something from everyday-world language that will provide an exit'' (Jackson, n.d., p. 30, cf. Good, 1994, p. 121)) Ð or by falling back on nonverbal demonstrations (Brodwin, 1992; Jackson, n.d.). For some patients, even the inner certainty of pain may falter in the face of concrete evidence to the contrary. You know, he really had me feeling that I wasn't feeling this pain. You know? He really did. And yet I was, but I couldn't prove it.

[The pain] made me feel kind of guilty, like I shouldn't be feeling this. You know, there's not real proof with back pain, anybody can say my back hurts. The patient in this situation faces a choice between disavowing pain (and thereby denying what Good (1994, p. 121) calls the ``subtle sentient quality of... suffering'') or turning away from medicine. The majority of the patients in our study who described negative experiences of testing turned away from medicine to some extent, expressing anger or resignation about its failure to help them. Why does it have to be black and white in front of their face before they believe there's a problem?

I found that every so often these guys would want to run another battery of these expensive tests, and I've been through 'em twice already... just to get back to the same place I'm in.

... who's to say what they ®nd? Because, you know, each time you go they come up with something else... who's to tell who's right and who's wrong? Doubtfulness about tests shades into questions about whether diagnosis itself means much. I think there can be several di€erent diagnoses, all of which may have some validity, none of which may have some validity. I even hesitate to tell people exactly what is going on with my back as far

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as those hard ®ndings because it seems so vague... I think it's a particularly dicult kind of thing. It's not like saying the bone's broken or the bone's not broken. This patient's language is suggestive of a long history of confusion and disappointment. He struggles with the `vagueness' of what he can say to others, as though in the absence of something `hard', his own words about his experience are tainted. The experience of delegitimation in the absence of `hard ®ndings' and as a result of such histories Ð what one patient called ``the redundancy of the situation''Ð takes shape both as a sense of doubt about the self and as a struggle with the issue of being heard. Jackson (n.d., p. 32) notes that patients both pursue language and avoid it, ``compelled to pin their hopes'' on language that can approach, but never fully match, their inner experience. In one of our previous quotes a patient mentions feeling guilty for having pain; it could also be said that these patients have been shamed, for shame ``refers to distress about the state of the self'' (Lazarre, 1987, p. 1653). In the face of nonspeci®c or absent ®ndings and lacking an alternative language, patients may articulate a discon®rmation deep enough to threaten their sense of selfidentity. In some of our interviews participants tell of frustrated attempts to be heard as they try to convey the knowledge garnered from previous testing. One person described two surgeries that had been done only after problems showed up on a myelogram. She explained to a new doctor that other kinds of tests would show nothing. Well, I guess he decided that he didn't believe me. So he did the CT scan and the X-rays and nothing showed. And I said look, I told you... that it would not show. It never does... So on the report he had, `She insisted upon having a myelo'. Now, who would want to have a myelogram?... And it showed very, very... it was evident that something had to be done. I don't know, honestly I'll never understand that a doctor thinks you don't know your own body. For this woman `knowing your own body' means, in fact, `knowing' what test will make her problem visible. She is dependent on testing for this knowledge even as she becomes increasingly disconnected from 15

Names are pseudonyms. Some identifying details have been changed.

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and hostile to the physician who controls the diagnostic process. Our interviews show that patients for whom testing can point to e€ective treatment ®nd themselves in alignment with a basic premise of medicine, that the patient is ``a translucent screen through which we peer to ®nd a diagnostic entity within'' (Coulehan, 1985, p. 371). When this premise fails, either because no diagnostic entity can be found or because what is found cannot be treated, our participants described themselves as alienated, yet driven by pain into repeated attempts to gain relief from medicine (cf. McPhillips-Tangum et al., 1998). We turn now to the embeddedness of these attempts in individual histories.

Narratives of testing for chronic back pain Cultural models (such as the anatomical model of the body discussed earlier) provide a simpli®ed version of the world. Patients' stories about illness are reconstructions that ``are implicitly situated or contrasted within [these] models'', and can provide insight into the interweaving of social context, the experience of illness, and the shared assumptions that shape that experience (Kleinman, 1988; Garro, 1992, 1994, p. 786; Good, 1994; Delvecchio Good, 1994). In these stories we can see that the struggle over the visibility and meaning of symptoms characteristic of chronic back pain unfolds individually yet incorporates important aspects of the cultural model. The two patients whose stories we present experienced testing di€erently at di€erent times in their illness. Both went through periods of pain in which nothing could be found on tests and experiences of satisfaction at seeing a concrete result. Our ®rst participant, Pamela Lloyd, eventually undergoes successful surgery while our second, Stan Diermyer, fails to ®nd a resolution and remains alienated from his providers15. Both of these narratives begin with a trivial action that seems to mark the start of years of pain. Like patients described by Good (1992), Delvecchio Good (1994), Garro (1992, 1994) and Kleinman (1988), these patients experienced an unmaking (Scarry, 1985) of their taken for granted life-world. Because we asked them for stories about treatment, we do not have the rich description of this unmaking available in other accounts. What follows rather are descriptions by these patients of how the process of testing o€ers them a changing and often ambiguous object± body and contributes to a shifting and highly charged relationship to medicine. We give each history primarily in the patient's own words, then discuss them together.

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First case history: Pamela Lloyd Pamela Lloyd is in her mid-forties, white, divorced and living in the southern US. She describes the onset of her experience with lower back pain. The very ®rst time I was mid-twenties. I was getting ready to go to work, I was in the bathtub, taking a hot bath. I could not get out of the tub. I went to a medical doctor, took muscle relaxants, heating pads, stayed in bed.

O€ and on from `85 when I had my back surgery, I would have spells of it... The last time I knew it was di€erent... So I went ®rst to my primary care physician and they did X-rays and he said that I had a stenosis thing... So then he sent me to Dr. S., an outstanding orthopedic man. They did another X-ray and... he showed me, on the diagrams, and he said it was complicated by arthritis, but no big deal. And that we could treat this. I did traction. I did spinal injections of steroids. I did everything, heating pads and ice, you know, back and forth. Everything they said to do. No results, nothing.

I know in my heart of hearts that at least three of these [doctors] felt that I wasn't really in the kind of pain that I said I was in. They couldn't understand why I kept on hurting, when all these things indicated that I should be better. Well, the reason is because it didn't show up on all of their tests. Frustrated with the mounting `proof' that the pain was not real, Pamela began to question her own feelings. When you don't feel well you tend to react emotionally... And they probably thought, well, this ditzy woman. I mean, you can almost see it, when they're thinking that... And then it causes you to doubt yourself: is this all in my mind? Maybe they're right, maybe this is a ditzy broad [with no] idea what's going on. That's the pain, it clouds everything. It clouds your emotions.

The day I drew the line, was [the day] they sent me to a doctor, a chronic pain doctor, who told

me he could teach me to live with this. And I said, ``But I don't want to live with this''. I mean, it hurt to walk. It hurt to move... I was living on codeine and Tylenol... and tranquilizers... So I called Dr. S's oce. [But] since I was referred to him, he couldn't refer me to another specialist. I had to go back to my primary care person. Well, my primary care person was not very anxious to help me. So I.. got names of di€erent back people and I called, every one of them said, you have to have an MRI before we can see you. [N]obody wanted to give me an MRI so ®nally I called member services... I was just bawling, because I hurt so bad and nobody wanted to help me. And [they] said, ``Your primary care physician will be calling you back...'' It wasn't ®fteen minutes later that he called back and I was scheduled for an MRI the next morning. And they told me that whatever specialist I wanted to see there would be a referral for.

I went to see Dr. K... He told me he could help me. And [he] explained again pretty much the same thing... And he said, ``Basically, your back is worn out''. So he said, I want you to go in for a myelogram. And we're going to do... this fusion and we're going to leave these two metal bars and these screws in place and... it'll be better. At this point, I was ready to agree to anything.

So I go for the myelogram because he doesn't want any surprises when he gets into surgery. He tells me in two and a half hours he can be in and out, it will be clean and quick, no problems. He's got the X-ray, the MRI, and the myelogram. He's got his maps of what he's going to do. [But] the surgery took ®ve hours. When he got in they discovered that I had a ruptured disc that did not show up on the X-ray, the MRI, or the myelogram. That's why I never responded to any of the treatments.

It surprised him, he wasn't above saying that it shocked him. And he couldn't understand why it didn't show up anywhere. It should have shown up on the very ®rst X-ray. It for sure should have shown up on the myelogram, or the MRI. It didn't show up on any of those things. But it was there... where it was pressing on the nerve, the blinding

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kind of pain was a direct result from something nobody could ®nd. Pamela considered herself fortunate to eventually ®nd a physician who was willing to work with her, and she felt that the surgery was successful. The di€erence was he was willing to look, he was willing to try and ®x it and everybody else was not. They weren't looking any further. You can't just stop right there, with the pain still there. There's got to be another answer and at least he was willing to look for it.

It's not their [physicians'] fault. And I'm not saying that it is, but I'm saying that they need to be more tuned in. I just believe that there is too much technology, too much knowledge [so] that people shouldn't have to live with that much pain on a regular basis.

Second case history: Stan Diermyer Stan is in his early forties, white, married and living in the Paci®c Northwest. He describes the onset of his experience with lower back pain. The incident with the back started four years ago. I was just recovering from the ¯u... and everybody else in the family came down with it. I was cooking dinner because I was the only healthy one in the family, and I dropped a can of beans on the ¯oor, unopened. I bent down and there was this burning sensation that shot through my lower back... By the next morning I could hardly move and they had to wheelchair me into the clinic. And the doctor put me in the hospital, saying, ``Your back is out''. So I was in the hospital for about a week and they sent me home. Since that time Stan has experienced `constant pain' with no diagnostic closure. [Y]ou've got doctors for the ®rst four years telling you, `Well, we can't ®nd anything wrong. It's all in your head'... If they can't ®nd it within their parameter of discipline it's got to be psychosomatic. Which one doctor told me, an intern doctor said, ``It's got to be in your head''. Just point blank told

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me that. I said, ``Thanks, doc. You just helped a whole bunch''. And he said, ``Well, look at the tests''. I said, ``But you haven't run all of the tests because it's still hurting and it's still very real. And I am not psychosomatically inclined''.

And the doctors, up until some ®nal test, kind of left me with the impression that it was not real. Because up to a certain point they weren't able to ascertain [the problem]. [The disc] bulges like normal discs bulge. What mine does is... when it ¯ares, it expands and contracts up and down, not in and out... So until just recently the concept of it going up and down didn't dawn on them. Until they started to do a couple of X-rays and they said, ``You've got a big gap there''. ...[A]nd I say, ``Could that cause my pain?'' ``Oh yes. Most de®nitely''.

For four years I've been living with, except for my one physician, ``It's all in your head''. Until I saw on the X-ray the swollen disc, and I'm going, thank you, Lord, at last I saw something that says, there's something wrong. For Stan, a test that revealed a problem did not lead to relief. He had to learn how to deal with the pain himself, using medication and other self-management techniques. Sometimes the pain ¯ared up despite these e€orts. There's a very central core spot in the lower part of the spinal cord itself and it starts as a burning sensation. Like somebody took a hot iron and is just putting it right next to your back bone. And as it begins to develop it turns from a burning sensation to a cold ice knife feeling. Like somebody just took a knife and just went like this and started to turn it. And it starts boring into my left hip. Then it shoots down into the knee and into the ankle and the bones feel like they're ice cold.... If I don't stop it then it goes to the point where even to lie in bed is painful. To move, to roll, to have somebody touch the bed. Because if you touch my bed I'm going to scream or cry. It's that much. In addition to this physical su€ering, the pain has had a great emotional impact on Stan's life. He has been forced to rethink what he calls the ``normalcy'' of his life and to come to terms with a new image of him-

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self, including feelings of guilt and frustration in his relationship with his physician and family. You feel like you're letting the doctor down because you're not in control... You sense the doctor is frustrated because he's got a patient that really hurts and there's times when I've had to come in on an emergency basis so it screws up their scheduling... There's a whole lot of dynamics... As the patient, you're the focal point and you feel guilty internally and externally.

I did a lot of hiking. I did a lot of camping. I did a lot of wrestling with the kids. And when the back injury happened a lot of that was taken away. And the kids for a long time resented it. Resented me. Stan felt that most of his physicians were unwilling to question test results or to continue searching until they found a satisfactory diagnosis. I guess I'm a little frustrated at the medical profession because I've [been forced] to ®nd the answers and the solutions to the problems, instead of them being willing to roll up their sleeves and help me ®nd the answers and the solutions.

The medical profession is forgetting how to research and practice and realize that we're going into the 21st century. There's a whole new set of rules and we're going to have to learn how to play the game... by exploring di€erent things and not being afraid to say, ``I don't know. Let's ®nd out''.

Discussion Returning now to the historical and cultural assumptions we discussed earlier, we can see how they are implicated in the way Pam and Stan and our other informants talk about their experience. 1. The inside of the body corresponds to visual images of it. Both Pam and Stan assume that this correspondence must exist, and they continue searching until they ®nd evidence that it does. Both emphasize that the role of the doctor is to look. Pam describes her doctor as `willing to look' and Stan expresses frustration that his does not look further. In Pam's

case, it is her doctor's faith that her pain must indicate a need for surgery that leads to the discovery, in surgery, of the ruptured disc that had failed to show up on any test. Pam's description of her emotion as repeated tests come up negative expresses the fraught quality of this absence. Negative ®ndings threaten to trap her in the failure of her body to conform to the expectations of anatomical medicine. Stan, on the other hand, experiences a satisfying moment of alignment as X-rays ®nally reveal the `gap' that indexes his pain; however, without e€ective treatment this conclusion is ultimately frustrating to him. He persists in believing that his doctors can not have run all the tests if his back still hurts. 2. The body can be measured against objective norms and standards. Pam and Stan ®nd themselves struggling to deal with this assumption. Diagnostic testing holds out the possibility that they can see where deviation occurs and despite their expressions of hostility, they live in the same universe of explanation as their doctors. They fully expect that deviation from normal should show up and should be susceptible to repair. Pam ®nds, instead, that her tests inexplicably fail to reveal what is wrong. Sam turns to the idea that his deviation is not just from the norm, but from the norm of deviance Ð his disc bulges in an atypical way that makes it hard for his doctors to see. Sam's feeling that he is `letting the doctor down' suggests that the body that fails to conform falls short in a very personal way (``you feel guilty internally and externally''). The medical management of back pain carries the implicit promise that doctors can `roll up their sleeves' and ®nd the answer. These patients are both enmeshed with and estranged from this promise (cf. Good, 1992; Jackson, 1992). They are highly critical of specialists who seem to lack the necessary knowledge; Pamela stresses that her doctors `couldn't understand', while for Stan, his pain seemed not to ®t `within the parameter of their discipline'. On the other hand, both Pamela and Stan, with most of our patients, believe in the medical model. They want their doctors to `realize we're going into the 21st century' to be `more tuned in'. The fear that their pain will be delegitimized haunts the stories of both Pam and Stan. They describe attempts to manage their expression of feeling for fear of being stigmatized by insisting on their pain. Pamela suggests that emotionalism Ð being seen as a `ditzy broad' Ð is dangerous because it positions her in opposition to the logic of rational treatment. Stan, faced with a cause but no relief, presents himself as a competent manager of his pain, `forced to rethink'

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what used to be `normalcy'. He combines vivid description of pain with a coolly detached discussion of its e€ects. Both these patients emphasize the reality of their pain; Stan is emphatic that he is `not psychosomatically inclined'. Paradoxically, it is the apparent neutrality of tests that gives them their power to confer personal redemption from the pathologizing implications of psychological explanation. For these patients, tests o€er hope for more than relief of pain Ð they promise an escape from a stigmatizing logic of causation that makes what is not clearly `body' into only `mind'. Most of our interviewees, like Pamela, presented themselves as actively engaged in seeking relief from medicine. For her, individual e€ort resulted in the revelation of an anatomical truth that `shocked' even the specialist. Pamela, Stan, and most others we talked with, present `the system' of medicine as unyielding and uncomprehending, requiring intense personal investment to arrive at some sort of closure. Their narratives express a desire for self-ecacy and a determination to see themselves as participants in their medical treatment. Conclusion The back pain patients we interviewed wanted to enlist the apparent transparency and rationality of the testing process in the production of a meaningful `reality' for their pain. Patients for whom testing produces positive results describe an interaction in which they join with their providers in a satisfying visualization of the correspondence between objective ®nding and subjective pain. Good (1994, pp. 128±129) remarks that ``one of the central e€orts in healing... is to ®nd an image around which a narrative can take shape''. He points out that in many societies practices such as divination allow a naming of the source of su€ering and often constitute ``a critical step in the remaking of the world, in the authoring of an integrated self''. For our informants the moment of shared attention to a visual image of the body contains the hope of such remaking and for some, these successful interactions around testing seem to o€er a measure of ful®llment. However, the hope invested in testing is a two-edge sword. When physicians cannot locate the problem, or express doubt about the possibility of solution, patients feel that their pain is discon®rmed. To feel `delegitimized' is, in fact to experience a series of negative consequences, from not being seen, to not being heard, to a sense of de®ciency and shame. We have suggested that for these patients betrayal occurs at a deeper level than the merely personal. Faced with the disjunction between the cultural model of

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the visible body and the private Ð and problematically `quiet' Ð experience of pain, patients are alienated not only from individual physicians but from an important aspect of the symbolic world of medicine. They ®nd themselves in the position of the seventeenth century patients described by Duden (1991) for whom the body was opaque, but without the cultural expectation of a shared language of suffering that was, historically, the complement to that opacity. What these patients suggest, and what studies con®rm (e.g. Deyo, 1983; Jensen et al., 1994) is that diagnostic imaging tests often fail to provide a solution Ð or even a meaningful diagnosis Ð for chronic back pain. Our work suggests that we might consider looking elsewhere for sources of satisfaction and meaning for these patients. One possibility might be the exploration of creative ways to develop the potentially healing gesture of `looking at results together'. Perhaps the visual orientation of medicine could be enlisted to produce individualized representations of the body that legitimize pain without the expense and ambiguity of current forms of testing. Another possibility would be to actively engage patients' desire for agency and self authorship in the exploration of alternative solutions. As Coulehan (1985) points out, the success of chiropractic rests partly on its ability to mobilize the patient's resources. Finally, recent work by Martin (1994) suggests that new images of the body are replacing the old anatomical version in areas such as immunology; we may have entered a new era in which the image of the body is becoming more open and ¯exible. Perhaps current research on chronic pain can provide new images that will allow for a more ¯uid, less localized understanding of pain and a greater sense of legitimacy for back pain patients. Acknowledgements We gratefully acknowledge the participation of the patients we interviewed for this study and express our appreciation for their willingness to share their stories. We are also grateful for the participation in this research of Daniel Cherkin, Tracy Scott, Barbara Tunney, Toyia Arrington and Janet Street. Thanks are due to David Jesse Peters, Mark Sullivan, Daniel Cherkin, Richard Deyo and two anonymous reviewers for helpful comments on earlier versions of this paper. An earlier version of this work was presented at the University of Washington Pain Clinic Didactics Series; we thank the audience for their comments. The research on which this paper is based was supported by the Prudential Center for Health Care Research.

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References Andersson, G.B.J., Pope, M.H., Frymoyer, J.W., Snook, S., 1991. Epidemiology and cost in occupational low back pain. In: Pope, M.H. et al. (Eds.), Occupational Low Back Pain: Assessment, Treatment and Prevention. Mosby-Year Book, St. Louis, MO. Armstrong, D., 1983. The Political Anatomy of the Body: Medical Knowledge in Britain in the Twentieth Century. Cambridge University Press, Cambridge. Brodwin, P., 1992. Symptoms and social performance: the case of diane reden. In: Delvecchio Good, M.-J., Brodwin, P., Good, B., Kleinman, A. (Eds.), Pain as Human Experience: an Anthropological Perspective. University of California Press, Berkeley. Cherkin, D.C., Deyo, R.A., Berg, A.O., Bergman, J.J., Lishner, D.M., 1991. Evaluation of a physician education intervention to improve primary care for low back pain. I. Impact on physicians. Spine 16, 1168±1172. Cherkin, D.C., Deyo, R.A., Volinn, E., Loeser, J.D., 1992. Use of the international classi®cation of diseases (ICD9-CM) to identify hospitalizations for mechanical low back problems in administrative databases. Spine 17, 817± 825. Coulehan, J.L., 1985. Adjustment, the hands and healing. Culture, Medicine and Psychiatry 9, 353±382. Cypress, B.K., 1983. Characteristics of physician visits for back symptoms: a national perspective. American Journal of Public Health 73, 389±395. Delvecchio Good, M.-J., 1994. Work as a haven from pain. In: Delvecchio Good, M.-J., Brodwin, P., Good, B., Kleinman, A. (Eds.), Pain as Human Experience: an Anthropological Perspective. University of California Press, Berkeley. Deyo, R.A., 1983. Conservative therapy for low back pain: distinguishing useful from useless therapy. Journal of the American Medical Association 250, 1057±1062. Deyo, R.A., Yuh-Jane, T.W., 1987. Descriptive epidemiology of low-back pain and its related medical care in the US. Spine 12, 264±268. Deyo, R.A., Cherkin, D., Conrad, D., Volinn, E., 1991. Cost, controversy, crisis: low back pain and the health of the public. Annual Review of Public Health 12, 141±156. Duden, B., 1991. The Woman Beneath the Skin: a Doctor's Patients in Eighteenth-Century Germany. Harvard University Press, Cambridge. Fordyce, W.E., 1995. Back Pain in the Workplace: Management of Disability in Nonspeci®c Conditions. International Association for the Study of Pain, Seattle. Foucault, M., 1975. The Birth of the Clinic: an Archaeology of Medical Perception. Vintage Books, New York. Frymoyer, J.W., 1988. Back pain and sciatica. New England Journal of Medicine 318, 291±300. Gadow, S., 1982. Body and self: a dialectic. In: Kestenbaum, V. (Ed.), The Humanity of the Ill: Phenomenological Perspectives. University of Tennessee Press, Knoxville. Garro, L.C., 1992. Chronic illness and the construction of narratives. In: Delvecchio Good, M.-J., Brodwin, P., Good, B., Kleinman, A. (Eds.), Pain as Human Experience: an Anthropological Perspective. University of California Press, Berkeley.

Garro, L.C., 1994. Narrative representations of chronic illness experience: cultural models of illness, mind and body in stories concerning the temporomandibular joint (TMJ). Social Science and Medicine 38 (6), 775±788. Georges, E., 1996. Fetal ultrasound imaging and the production of authoritative knowledge in Greece. Medical Anthropology Quarterly 10 (2), 157±175. Good, B.J., 1992. A body in pain: the making of a world of chronic pain. In: Delvecchio Good, M.-J., Brodwin, P., Good, B., Kleinman, A. (Eds.), Pain as Human Experience: an Anthropological Perspective. University of California, Berkeley. Good, B.J., 1994. Medicine, Rationality and Experience: an Anthropological Perspective. Cambridge University Press, Cambridge. Jackson, J.E., n.d. Camp pain. Unpublished manuscript. Jensen, M.C., Brant-Zawadzki, M., Obuchowski, N., Modic, M., Malkasian, D., Ross, J., 1994. Magnetic resonance imaging of the lumbar spine in people without back pain. New England Journal of Medicine, 331(2), 69±73. Kleinman, A., 1988 The Illness Narratives: Su€ering Healing and the Human Condition. Basic Books, New York. Kleinman, A., 1992. Pain and resistance: the delegitimation and relegitimation of local worlds. In: Delvecchio Good, M.-J., Brodwin, P., Good, B., Kleinman, A. (Eds.), Pain as Human Experience: an Anthropological Perspective. University of California Press, Berkeley. Lazarre, A., 1987. Shame and humiliation in the medical encounter. Archives of Internal Medicine 187, 1653±1658. Leder, D., 1990. The Absent Body. University of Chicago Press, Chicago. McPhillips-Tangum, C.A., Cherkin, D.C., Rhodes L.A., Markham, C., 1998. Reasons for repeated medical visits among patients with chronic back pain. Journal of General Internal Medicine 13, 289±295. Martin, E., 1987. The Woman in the Body: a Cultural Analysis of Reproduction. Beacon Press, Boston. Martin, E., 1994. Flexible Bodies: Tracking Immunity in American Culture From the Days of Polio to the Age of AIDS. Beacon Press, Boston. Morris, D.B., 1991. The Culture of Pain. University of Calfornia Press, Berkeley. Osterweis, M., Kleinman, A., Mechanic, D., 1987. Pain and Disability: Clinical, Behavioral and Public Policy Perspectives. National Academy Press, Washington, DC. Romanyshyn, R., 1989. Technology as Symptom and Dream. Routledge. Scarry, E., 1985. The Body in Pain: the Making and Unmaking of the World. Oxford University Press, Oxford. Shekelle, P.G., Markovich, M., Louie, R., 1995. Factors associated with choosing a chiropractor for episodes of back pain care. Medical Care 33, 842±850. Sullivan, M.D., 1995. Pain in language: from sentience to sapience. Pain Forum 4 (1), 3±14. US Department of Health and Human Services, 1994. Acute Low Back Problems in Adults: Clinical Practice Guideline. AHCPR Publication No. 95-0642. US Government Printing Oce, Washington, DC.

L.A. Rhodes et al. / Social Science & Medicine 48 (1999) 1189±1203 Waitzkin, H., 1991. The Politics of Medical Encounters: how Patients and Doctors Deal With Social Problems. Yale University Press, New Haven.

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Ware, N.C., 1992. Su€ering and the social construction of illness: the delegitimation of illness and experience in chronic fatigue syndrome. Medical Anthropology Quarterly 6 (4), 347±361.