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"Far above a simple telling of an illness, Greenhalgh takes the experience as a way to view gendered relations in medical care, the seduction of science for the physician and the patient, and the creation of facts and selves in the treatment of pain. She sets a new standard for the practice of autoethnography."-Virginia Olesen, Professor Emerita of Sociology, Department of Social and Behavioral Sciences, School of Nursing, University of California, San Francisco
"A compellingly told story that advances our understanding of the meaning of chronic illness, particularly for women. This work adds a new dimension to the genre of illness narratives."-Susan DiGiacomo, Series Editor, Theory and Practice in Medical Anthropology and International Health
"A very useful and very well written book. . . . It states the issues in the culture of biomedicine field effectively and makes them relevant."-Arthur Kleinman, author of Writing at the Margin: Discourse between Anthropology and Medicine
Author Biography: Susan Greenhalgh is Associate Professor in the Department of Anthropology at the University of California, Irvine.
It was a slight slip, really—a misdiagnosis of an emergent chronic-pain syndrome. But when the misdiagnosis was followed by a raft of new symptoms, what started out as a little mistake grew bigger. The new symptoms were misinterpreted as part of the disease and then mistreated with a therapeutic plan that did not fit the problem. When the mistreatment failed to work and the debilitating new symptoms grew worse, threatening the patient's mind, dreams, and life, she went nearly mad. By the end of the eight-month ordeal, a small mistake by a doctor had undone the patient's life.
What went wrong? How could medicine, which is supposed to eliminate pain, end up creating it instead? Since the time of Descartes, the work of scientific medicine has been depicted by a metaphor of repair: the body is a machine, the physician a mechanic who fixes its broken parts. Contemporary wags have likened the doctor's work to that of the automobile mechanic who fixes the carburetor and gets the vehicle back on the road. But this humble metaphor does not capture what transpires when the physician undertakes to treat a patient. The physician's work is not merely restorative, but also productive: he creates fears and hopes, images and identities, perhaps even side effects and symptoms that did not exist before. The repair analogy is also too optimistic, for although the doctor is supposed to fix body parts, he may inadvertently break them instead. The pill, given for the headache, produces stomach pain as well; the biopsy needle, aimed at the liver, punctures the bowel instead. Finally, theartisanal image is anachronistic, for the critical tools of the physician are no longer the physical implements of the mechanic; rather, they are the cognitive and linguistic tools of the scientific-professional expert. Today it is not the stethoscope or scalpel that does the fundamental work of medicine; it is the ideas, conveyed in words, that persuade us that what is done is right and good. Our repair metaphor is not just wrong; it is also dangerous because it is part of a powerful mythology that clouds our perception. It keeps us from seeing the real work of medicine and its interventions in our identities, our emotions, and our lives. Metaphors matter more than we think.
Michel Foucault, the French philosopher and social critic, grasped these points well. In his 1963 study, The Birth of the Clinic, he described the penetrating "gaze" of scientific medicine and how it gradually gained sovereignty over the care of the ill. Following new codes of scientific medicine in which the disease, not the patient, was the object of knowledge, the gaze of the physician gave him the power to know and name the patient's disease and, on that basis, to organize massive interventions in his life. "The eye that knows and decides, [is] the eye that governs." The patient comes to the doctor for help, but finds himself first transformed into an object of science and then reduced to a disease, an "endlessly reproducing pathological fact." The process is jarring and violent, all the more so because the medical gaze denies its violence, claiming beneficence instead: "[T]o look in order to know ... is not this a tacit form of violence, all the more abusive for its silence, upon a sick body that demands to be comforted, not displayed?" Although the patient remains a silent cipher in the Clinic, Foucault's historical study remains one of the most incisive accounts of the conceptual nature of medicine's power and the disruptive effects of scientific medicine on the patient's inner world.
With the rise of social studies of medicine, much has been written about the disjunction between the physician's narrow view of his task as finding and fixing disease, and the patient's larger view of her illness as part of a life that needs to be put in order. But less has been written about what happens to the patient, not only physically, but also philosophically and psychologically, when her worldview is disturbed, her body and life rearranged according to the rules of an esoteric system she neither understands nor influences. The effects of this system on the inner world of the patient is a central focus of this book. To understand how a discipline of the body can deeply intervene in the mind and emotions, it is necessary to re-view the work of scientific medicine. Metaphors like that of the humble auto mechanic train us to not see the kinds of conceptual and linguistic tools that the physician uses all the time and the extra-bodily effects of these tools on the object of his attentions. A major task of this book will be to look beyond these commonsense metaphors to see how the creation of metaphors and stories is part of the work medicine does. The book's central analytic task is to dismantle the pervasive myths surrounding medicine to discover how medicine works and with what effects on its objects. I maintain that the key to the workings of medicine is its "scienceness," its character as the clinical branch of science focused on the human body. Drawing on critical studies of science and medicine, I argue that scientific medicine is a powerful cognitive, linguistic, and material apparatus of social control whose power over us lies ultimately in a set of discourses, or understandings, about the suffering body and its healing. It is these discourses, which are enacted and concealed through rhetoric, that explain both the bodily effects, intended and unintended, and the "spillover effects" into the rest of our lives.
One of the ways scientific medicine keeps its myths mythic is by doing its daily work in private, behind the closed door of the examining room. It is in the private space of the doctor-patient relationship, out of earshot of professional peers and regulatory agencies, that the patient is turned into an object of medical scrutiny, his problems medicalized for his doctor to fix. This book provides an unusual opportunity to peer into an examining room and eavesdrop on what transpired during one long and lively doctor-patient interaction. Our access to this space is granted by the author, who was the patient in the medical encounter. Because she kept copious records of the experience, we have detailed information on much of what was said and done and with what consequences for the patient's body, mind, and emotions over the full eight months of the interaction.
What gives this single case broader interest is that the illnesses in question were chronic. Medicine has made brilliant advances in the diagnosis and cure of acute illness. In the identification and treatment of chronic illness, however, it has made at most modest gains. Yet chronic illness is pervasive, diminishing the daily lives of huge numbers of Americans. In The Illness Narratives, a knowing book about chronic illness, the anthropologist and psychiatrist Arthur Kleinman warned sharply that: "[T]he medical profession is dangerous for such patients." I will have more to say about these dangers shortly. For now it is simply important to note that, in examining chronic illness, we will see medicine operating in the face of one of its greatest challenges. The study of chronic illness exposes both the weaknesses of scientific medicine and the dangers that medicine poses for patients.
Scientific medicine does not do its work in a social and cultural vacuum. Although science often claims to be uncontaminated by such forces, an impressive body of sociological and anthropological research has shown that every medical encounter is shaped by the social location and cultural beliefs of the particular patient and doctor involved. This case gives us an opportunity to investigate the shaping roles of two features of the social and cultural landscape that are generally salient in the medical encounter: gender relations and the cultures of illness. Gender dynamics influence who has voice and power in the medical encounter. From novels to personal narratives to social surveys, many sources suggest that when the doctor is male and the patient female, the patient experience can be trying. At its worst it can be hellish. This case will add layers of new meaning to the concept of a patient hell. Both cultural beliefs about illness and popular cultural alternatives to scientific medicine color the patient's views of the causes of illness and the therapeutic alternatives to conventional treatments. The case explored here will reveal how New Age and other alternative medicines that promise the sick person help and empowerment can end up hurting and disempowering her instead.
The particulars of this case make it especially suitable for studying the interrelations of science, gender, and popular cultures of illness. The doctor involved was ultrascientific, followed most of the rules of scientific medicine to the letter, and played his role as scientist of the body with utmost seriousness and sincerity. New models of physician empathy and egalitarian doctor-patient partnerships had not found their way into his practice. For her part, the patient was both an avid believer in scientific medicine and an eager consumer of the cultures of alternative medicine. Her gender identity was complex and contradictory, embodying the norms both of feminism and of white middle-class femininity (these latter, unconsciously). Although the consequences of the biomedical intervention were extraordinary, what took place during the eight-month encounter was but the ordinary workings of science, gender, and illness cultures. In this problematique I explain what I mean by the normal workings of medical science, gender relations, and illness cultures and introduce the constructs I use in the analysis that follows. In the final section I describe the book's genre, auto-ethnography, and its intellectual and political significance.
Science as Storytelling, Clinical Medicine as Science
Most of us, laypeople and scientists alike, think of science as representational—that is, as something that tells us the real truth about the natural world, without artfulness or expressivity. We also think of the truths of science as objective, disinterested, and value free. We think, that is, that the methods of science insulate it against the intrusion of the scientist's interests and values. It is on these bases that we have granted science its extraordinary cultural authority and social power over our lives.
The Stories That Science Tells
In his provocative study, Science as Writing, physicist-turned-literary-critic David Locke upends our comfortable assumptions. He presents a compelling case that science is not representational, but expressive—artful, affective, and artificial. Our image of science as a conveyer of disinterested, value-free truths, he contends, is a product of an official rhetoric that draws attention away from the interests and values that inform the making of science and from the gaps and weaknesses that inhere in the methods by which scientific truths are obtained. Our supposedly artless science, he wants us to believe, is artfully constructed.
Why should science need to indulge in artifice? Because the natural world that scientists study is bafflingly complex and chaotic. Any number of interpretations might be right, depending on what part of the whole the scientist looks at, from what perspective, and for what purpose. Moreover, the methods of science, sophisticated though they are, have not been made error free. These methods are more like sieves, full of tiny holes through which human error can leak to infect the creation of scientific facts. "[I]n truth," Locke writes, "about much of what they do, scientists are uncertain ... Things seem to happen ... but they cannot always be sure. Or they are sure, but mistaken." Not only error but also the values and interests of the scientist can seep through the sieve's holes to affect the making of scientific truth. But if we knew that science was error prone, it would not be Scientific Truth but merely scientific truth, one possible truth among others. If we knew that science was tainted by individual interests or values, it would no longer be a general Science, but merely a particularistic science, say, the science of physicist David Locke working in the Yale University Physics Lab in July 1985. If Science were shown to be only a collection of particular sciences, then the edifice of its power and authority would come tumbling down, the esteemed scientist reduced to the humble producer of partial and particularistic truths. For science to do its work, these aspects of the scientific project must be hidden—not only from the layperson but also, and more important, from the scientist himself.
Given the impossibility of eliminating human influence and technical error, Locke continues, the actual work of science is not so much to tell The Truth but to tell a truth and then to dress it up as The Truth. More specifically, the work of the scientist is to create a set of scientific facts and to compose these facts into a story about the natural world. The scientist must then persuade us, the public, that the story is good and true and untarnished by his values and interests. Once we are persuaded that his story is correct, he or someone else (the engineer, the industrial scientist) can then apply his ideas to the world to achieve the ultimate end of science: to improve the working of nature itself.
The Science That Clinical Medicine Enacts
In this book I argue that this storytelling approach to science, which has been applied to a number of research sciences, can also illuminate the work of the clinical science of medicine. Calling the doctor's account of the patient's ills a story draws attention to the fuzziness of the boundaries between fact and fiction. Like fiction, medical facts are not discovered but humanly constructed. Stories are also compelling in ways that decontextualized facts are not. It is by weaving his handcrafted facts into a meaningful story that the physician tries to get the patient to accept those facts as true. In recent years some humanistic and social scientific students of medicine have begun to portray medical work as the telling of stories, or "clinical tales," in the felicitous phrase of Oliver Sacks. But the rhetorical aspect of narrativizing to which Locke calls attention—in the crass language of our consumerist culture, the selling of the stories—has received less notice in studies of medical storytelling. Moreover, existing work on medical narratives, which is scattered across a variety of disciplines, tends to portray storytelling as the core task of doctoring. This weight placed on narrative no doubt reflects the interest of the medical humanities and social sciences in language and communication. But there is much that goes on in clinical medicine that remains unspoken. If we view clinical medicine as a science, it becomes apparent that storytelling is only one of a larger set of scientific practices that the physician-scientist undertakes in his work on the patient-object. I argue that we need this larger view of medicine as science if we are to see the full impact of a medical encounter on the patient. We also need this enlarged view if we are to understand how medicine can inadvertently make mistakes and injure patients and then somehow make both the mistake and the injury disappear from view.
For insight into how clinical medicine operates as a science, I draw on two literatures that have developed in the borderlands between sociology and anthropology: constructivist perspectives on medicine and practice approaches to science. These two literatures are now coming together and revealing that the power of scientific medicine to alter our bodies, identities, and lives exists on a scale previously unimagined. Our commonsense notion of illness is that it is a real, biological entity that medical science discovers, names, and treats. In the last two decades constructivist perspectives on illness have undermined these everyday beliefs by showing that illness is not so much a real phenomenon—although it has biological bases and produces genuine discomfort—as it is a phenomenon that is made real by the operations of medical science. It is "socially constructed," or brought into being, by the specific practices, technologies, and styles of reasoning by which it is studied and represented by researchers and diagnosed and treated by clinicians. Although all diseases are socially constructed in this sense, the constructedness of illness is easiest to see in psychosomatic disease. One of the most arresting illustrations of this process is anthropologist Allan Young's study of "post-traumatic stress disorder," in which memories of trauma produce psychiatric symptoms. Young's historical study shows how PTSD was newly invented, slowly endowed with facticity, and eventually accepted as real not only by researchers and clinicians but also by patients and the public as well. Although I do not trace the process here, over the last two decades fibromyalgia was brought into being and "made real" in the same sorts of ways. (The preface highlighted some key dates and developments in the social construction of fibromyalgia.)
In this book I will show how a similar process of social invention of disease occurs in the microsetting of the doctor-patient encounter. In the typical case, a patient visits a doctor with a fairly clear-cut complaint, the doctor follows standard procedures to attach a disease label to it, they treat it according to established practice, and the symptom goes away. Here is medicine at its best. The case examined in this book is not typical, though such cases may be more numerous than is commonly thought. In this case, a patient came to her doctor with a clutch of enigmatic complaints, the doctor used scientifically prescribed techniques to affix a diagnosis to it, they treated the diagnosed condition according to standard protocol, and a bevy of new symptoms associated with that disease materialized in the patient's body. In both cases, disease can be said to be socially or clinically constructed, that is, made an object of observation and intervention by the discourses, technologies, and practices of biomedicine. Yet in one case the symptoms disappear, in the other they appear de novo. In the latter case, in which the symptoms somehow emerge out of the clinical encounter, perverting the goals of medicine, we can say that the disease is clinically manufactured. Why did one doctor cure the disease while the other created it? The answer lies in the adequacy of the social construction, or the goodness of the clinical tale. And the reasons one story was exemplary and the other deficient lie in differences in the tidiness of the patient body and differences in the susceptibility of the scientific procedures and thought processes to human error, interests, and values. I return to these points below.
To see how illness can be clinically manufactured, I view clinical work as a kind of laboratory science in which the physician-scientist uses the conceptual, linguistic, and material tools available in his examining room "laboratory" to do the basic-science work of deciphering which disease(s) the patient has and the applied-science work of treating them. In taking this approach I am following the lead of sociological and anthropological students of science, such as Bruno Latour, Karin D. Knorr-Cetina, Sharon Traweek, and Nelly Oudshoorn, who have viewed science as a practice and scientists as practical reasoners who create the facts in a highly prestructured setting. The well-established discourses, rhetorics, and procedures of science shape and narrow the range of facts that can be created, and then shape and narrow the way the facts are represented to other scientists and the public at large. The doctor-as-lab-scientist approach dovetails with the "dense pragmatic perspective" of sociologists such as Isabelle Baszanger, who focus on the everyday routines by which clinicians operationalize theoretical knowledge and mobilize technical resources in organizing clinical courses of action.
Although Foucault's influence on my thinking may not be perceptible to some readers, his penetrating vision of the nexus of language, knowledge, and power in modern life is deeply embedded in the intellectual infrastructure of this book. Key Foucauldian themes I advance include the discursive and productive nature of modern power, the centrality of scientific discourses and practices in constituting modern subjectivities, the social and historical constructedness of the body and illness, and the ubiquity of resistance to power.
How Biomedicine Works
I now step back from the literature to show how I weave together Locke's ideas on stories, errors, and error-camouflaging rhetorics, medical constructivist notions of illness as a social construction, and science-as-practice images of the doctor as working scientist. The result is a wide-angled view of clinical medicine that takes us behind the myths to see how medicine routinely makes mistakes that have serious consequences for patients and then just as routinely makes us think that it has not.
Medical Myths and Medical Tasks
Medicine is a special branch of science because its objects are not lizards or quarks but human beings—you and me. When we are the objects of scientific scrutiny, which story science tells matters more to us, since the story can result in personal pain or pleasure. In addition to the mystiques of truth and objectivity that it shares with science generally, clinical medicine is haloed by another mystique: that it can do no harm, only good. This happy idea is reflected in the Hippocratic oath, which all physicians take and all patients know, if not by name, then at least in substance: Above all, do no harm. Based on these beliefs—truth, objectivity, and good—we as a society have given scientific medicine the exclusive legal right to name and treat illness. On the basis of these beliefs, we as individuals allow doctors to define our problems and to alter our bodies with chemical and surgical interventions.
Excerpted from UNDER THE MEDICAL GAZE by Susan Greenhalgh. Copyright © 2001 by Regents of the University of California. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
List of Tables and Figures
PART ONE: Understanding Chronic Pain
Prologue: Finding Dr. Right
PART TWO: Doing Biomedicine
1 The Initial Consultation: The Making of a "Fibromyalgic"
2 Medicating the "Fibromyalgic"-Arthritic Body
3 Producing the Good Patient
PART THREE: Doing Gender
4 A Most Pleasant Patient
5 Silent Rebellion and Rage
6 A Depression Worse Than the Disease
PART FOUR: A Losing Battle to Get Better
7 Struggling To Make the Treatment Work
8 "Accept It!" Alternative Medicines Offer Medicine for the Mind
9 A Life Shrunk, a Mind Gone Nearly Mad
PART FIVE: Rebellion and Self-Renewal
1 A Second Opinion: The Unmaking of a "Fibromyalgic"
11 The Final Meeting: A Tale of Decline and a Denial
12 Out from under the Medical Gaze
PART SIX: Narrating Illness, Politicizing Pain
Conclusion: Re-viewing the Medicine of Chronic Pain
Epilogue: Speaking of Pain -- On Stories, Cultural Recuperations, and Political Interventions