Contested Illnesses

The politics and science of health and disease remain contested terrain among scientists, health practitioners, policy makers, industry, communities, and the public. Stakeholders in disputes about illnesses or conditions disagree over their fundamental causes as well as how they should be treated and prevented. This thought-provoking book crosses disciplinary boundaries by engaging with both public health policy and social science, asserting that science, activism, and policy are not separate issues and showing how the contribution of environmental factors in disease is often overlooked.

What makes a disease real? Why is it that patients with chronic fatigue syndrome or fibromyalgia are doubted when they say they are in pain, and cannot access the same benefits of patient-hood that others can? What defines the limits of our belief and, ultimately, compassion, when it comes to disease? These are the questions approached in this book, which draws upon patients’ experiences and situates them among a diverse set of literatures, from the history and philosophy of medicine to the sociology of health and disease. The question of a patient’s identity and their understanding of disease is often assumed to emerge from their relationship with healthcare, but the case is made here that other, inter-personal factors are more salient. What a patient with a contested illness comes up against is not simply a medical categorisation – it is a prevailing notion of disease across society, and one they struggle to assimilate themselves into. Contested Illness in Context will appeal to students and researchers interested in fields such as the history and philosophy of medicine, the sociology of health and illness, medical anthropology, or disease and illness generally. It may also interest patients and doctors who struggle with difficult medical cases.

The relationship between power and illness is the subject of limited discussion despite it being one of the most important issues in health-related policies and services. In an effort to correct this, Contesting Illness engages critically with processes through which the meanings and effects of illness shape and are shaped by specific sets of practices. Featuring original contributions by researchers working in a number of disciplines, this collection examines intersections of power, contestation, and illness with the aid of various critical theoretical frameworks and methodological approaches. The contributors explore experiences of illness, diagnosis, and treatment, and analyse wider discursive and policy contexts within which people become ill and engage with health care systems. Though each essay is unique in its approach, they are linked together by a shared focus on contestation as a conceptual tool in considering the relationship between power and illness. Rather than focus on a single example, the contributors address different contested illnesses (chronic fatigue syndrome and environmental illness, for instance) as well as the contested dimensions of illnesses that are accepted as legitimate such as cancer and autism. Contesting Illness offers valuable insights into the assumptions, practices, and interactions that shape illness in the twenty-first century. Contributors Jan Angus Pia H. Bülow Peter Conrad Joyce Davidson Helen Gremillion Maren Klawiter Joshua Kelley Steve Kroll-Smith Katherine Lippel Pamela Moss Michael Orsini Michael J. Prince Annie Potts Mary Ellen Purkis Sharon Dale Stone Cheryl Stults Katherine Teghtsoonian Jane M. Ussher Catherine van Mossel

What makes a disease real? Why is it that patients with chronic fatigue syndrome or fibromyalgia are doubted when they say they are in pain, and cannot access the same benefits of patient-hood that others can? What defines the limits of our belief and, ultimately, compassion, when it comes to disease? These are the questions approached in this book, which draws upon patients' experiences and situates them among a diverse set of literatures, from the history and philosophy of medicine to the sociology of health and disease. The question of a patient's identity and their understanding of disease is often assumed to emerge from their relationship with healthcare, but the case is made here that other, inter-personal factors are more salient. What a patient with a contested illness comes up against is not simply a medical categorisation - it is a prevailing notion of disease across society, and one they struggle to assimilate themselves into. Contested Illness in Context will appeal to students and researchers interested in fields such as the history and philosophy of medicine, the sociology of health and illness, medical anthropology, or disease and illness generally. It may also interest patients and doctors who struggle with difficult medical cases.

While many doctors claim that Lyme disease—a tick-borne bacterial infection—is easily diagnosed and treated, other doctors and the patients they care for argue that it can persist beyond standard antibiotic treatment in the form of chronic Lyme disease. In Divided Bodies, Abigail A. Dumes offers an ethnographic exploration of the Lyme disease controversy that sheds light on the relationship between contested illness and evidence-based medicine in the United States. Drawing on fieldwork among Lyme patients, doctors, and scientists, Dumes formulates the notion of divided bodies: she argues that contested illnesses are disorders characterized by the division of bodies of thought in which the patient's experience is often in conflict with how it is perceived. Dumes also shows how evidence-based medicine has paradoxically amplified differences in practice and opinion by providing a platform of legitimacy on which interested parties—patients, doctors, scientists, politicians—can make claims to medical truth.

In 25 papers, academics and a few environmental scientists/ activists discuss profound social, policy, and competing paradigm issues concerning the contested environment-disease link in a "postnatural" world. Include discussion questions. Kroll-Smith is a professor of sociology at the U. of New Orleans. Annotation copyrighted by Book News, Inc., Portland, OR

This book represents the first collection of research on health social movements. Demonstrates that health social movements are an innovative and powerful form of political action. Brings together the study of health and illness with social movement theory in order to establish a basis for the study of health social movements. Covers disease-based movements focused on diseases such as Alzheimer’s and breast cancer. Also addresses issue-based movements such as the pro-choice movement, the movement for complementary and alternative medicine, and movements around stem cell research. Illustrates the value of interdisciplinary approaches to studying health social movements.

Abigail A. Dumes offers an ethnographic exploration of the Lyme disease controversy to shed light on the relationship between contested illness and evidence-based medicine in the United States.

Offers an introduction to the sociology of diagnosis. This title presents articles that explore diagnosis as a process of definition that includes: labeling dynamics between diagnoser and diagnosed; boundary struggles between diverse constituents - both among medical practitioners and between medical authorities and others; and, more.

Getting the right diagnosis is a key aspect of health care - it provides an explanation of a patient's health problem and informs subsequent health care decisions. The diagnostic process is a complex, collaborative activity that involves clinical reasoning and information gathering to determine a patient's health problem. According to Improving Diagnosis in Health Care, diagnostic errors-inaccurate or delayed diagnoses-persist throughout all settings of care and continue to harm an unacceptable number of patients. It is likely that most people will experience at least one diagnostic error in their lifetime, sometimes with devastating consequences. Diagnostic errors may cause harm to patients by preventing or delaying appropriate treatment, providing unnecessary or harmful treatment, or resulting in psychological or financial repercussions. The committee concluded that improving the diagnostic process is not only possible, but also represents a moral, professional, and public health imperative. Improving Diagnosis in Health Care, a continuation of the landmark Institute of Medicine reports To Err Is Human (2000) and Crossing the Quality Chasm (2001), finds that diagnosis-and, in particular, the occurrence of diagnostic errorsâ€"has been largely unappreciated in efforts to improve the quality and safety of health care. Without a dedicated focus on improving diagnosis, diagnostic errors will likely worsen as the delivery of health care and the diagnostic process continue to increase in complexity. Just as the diagnostic process is a collaborative activity, improving diagnosis will require collaboration and a widespread commitment to change among health care professionals, health care organizations, patients and their families, researchers, and policy makers. The recommendations of Improving Diagnosis in Health Care contribute to the growing momentum for change in this crucial area of health care quality and safety.