Annemarie Goldstein Jutel - Putting a Name to It: Diagnosis in Contemporary Society

Putting a Name to It

Diagnosis in Contemporary Society

Annemarie Goldstein Jutel

Victoria University of Wellington

Wellington, New Zealand

Foreword by Peter Conrad

2011 Johns Hopkins University Press

All rights reserved. Published 2011

Printed in the United States of America on acid-free paper

Johns Hopkins Paperback edition, 2014

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The Library of Congress has cataloged
the hardcover edition of this book as follows:

Jutel, Annemarie.

Putting a name to it : diagnosis in contemporary society / Annemarie Goldstein Jutel ; foreword by Peter Conrad.

p. cm.

Includes bibliographical references and index.

ISBN-13: 978-1-4214-0067-9 (hardcover : alk. paper)

ISBN-10: 1-4214-0067-7 (hardcover : alk. paper)

1. Social medicine. 2. DiagnosisSocial aspects. I. Title.

RA418.J88 2011

362.1dc22 2010042464

A catalog record for this book is available from the British Library.

ISBN-13: 978-1-4214-1574-1
ISBN-10: 1-4214-1574-7

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To my parents, Samuel Joseph Goldstein, Jr., and Carol Hirschler Goldstein

Diagnosis constitutes the naming of an ailment or condition based on classifications that are embedded in extant medical knowledge. Diagnosis is a critical feature of medicine, simultaneously identifying what is wrong, providing a roadmap for treatment options, and assessing possible outcomes or prognoses. As the physician Michael Balint noted, diagnosis transforms apparently random symptoms into an organized illness. Although diagnosis is an emblematic medical event, Annemarie Jutel shows in this important book that it is also an event with significant social roots and consequences.

The process and impact of diagnosis has been an object of sociological study for decades, but that study has not necessarily manifestly focused on the development and application of the diagnosis itself. What Jutel does here is bring together numerous strands of sociological work and link them to articulate the social construction, framing, meaning, application, and consequences of medical diagnosis. Some faces of diagnosis will be familiar to social scientists; others are new and fresh.

While reading this book I was reminded how diagnosis, in other frames, has been significant to my own research. For example, the process of medicalizationthe development of medical categories for previously nonmedical problemsis an important part of studying the development and consequences of diagnosis. We can often see different groups promoting or resisting diagnostic categories. Diagnoses have histories and can reflect cultural settings. What happened to hysteria, and how did obesity become an illness? Social circumstances may matter as well. Three decades ago, in a study of the experience of epilepsy, the meaning of diagnosis emerged as central to illness experience. We encountered individuals with a new diagnosis of epilepsy. For some it was Oh no, my life is ruined, who will marry me, who will employ me? while others responded, Its only epilepsy, whew, what a relief, I was worried it was a brain tumor. We have the same diagnosis with divergent consequences.

Other sociologists have examined contested illnessthat is, lay versus professional contention over the reality of a disease, in cases like chronic fatigue syndrome or fibromyalgiawhich are essentially battles over diagnosis. Diagnosis is the gateway to the sick role and whatever benefits can be derived; for some it can provide impetus for biographical change, because not only do individuals have a disease or disorder but their diagnosis may also become part of their identity, legitimizing their life situation. Diagnosis may be key for individuals to obtain medical care and insurance reimbursement for their ailments. And, given that the attribution of diagnosis is a human endeavor, misdiagnosis and medical error remain possibilities with serious consequences.

This book examines the social nature and consequences of diagnosis, whether they be in pharmaceutical promotion, in the technologies used to justify and support diagnoses, or in the medical battles over diagnosis. Jutel has done us all a service by drawing our attention to the sociological centrality of diagnosis and showing us analytical levers for understanding the ways diagnosis shapes medicine, illness, and care. This book is a welcome consolidation and redirection for future sociological studies of diagnosis.

Peter Conrad
Harry Coplan Professor of Social Sciences
Brandeis University

I dont get sick very often. In fact, as I write these pages, I cant remember the last time I had a cold. But like most mortals, I have been sick before. One particular bout of illness marked me more than others. It was more than 20 years ago, but I remember things well. I had a low-grade fever, enlarged lymph nodes under my arms and in my groin, a strange swelling on my lower leg, and headaches. These symptoms persisted for days, lengthening to weeks, and I couldnt go to work. I was a nurse in a medical oncology unit, and to have a fever made me a risk to my immunocompromised patients.

I went to the HMO to find out what was wrong. Its nothing, the doctor told me and sent me home to stew. But I didnt get better. A week went by and the fever persisted. It didnt seem right that I (she-who-is-never-ill) would not bounce back more quickly. So I went back to see the doctor. Could it be the yuppie flu, or something like that? I ventured, having read about this curious disorder in the paper. Of course, it couldnt! she snapped at me. Didnt I tell you to just wait this out? I didnt know that much of the medical world refuted the existence of yuppie flu or that many doctors were irritated by the lay interest in the disorder. She signed my sick leave form nonetheless, and I slunk away, castigated.

Listless and a bit confused, I decided to leave the city and stay with my mom and dad. My husband drove me and the children to the town where I grew up. I paid an immediate visit to the family practice I had attended since high school, thinking that the doctors there would be kinder and maybe more helpful. The young resident who saw me was immediately as concerned as I was about my illness. I pulled up my pant leg and showed him my lump, making a half-hearted joke about my tumor. He couldnt hide his surprise as he looked at the raised and angry bump on my shin that had looked for weeks like a permanent almost-bruise. I think it would be a good idea to try to rule out malignancy, he said, as blunt as you like. On one hand, he shocked me badly. On the other, he finally spoke to what had been bothering me for more than two weeks. What was the meaning of this illness? Was I going to be OK?

His concern took me on a long journey to find the name for what ailed me. Without a diagnosis, I was rudderless. What did it mean to have all these symptoms, not knowing what they were? Did I have lymphoma, or something worse? Would I see my children grow up? Or was I simply having troubles shaking a viral infection, something just a bit more tenacious than usual? Without a diagnosis, I had no way of understanding my condition, what to expect, even where to turn for support.