Contents
Preface
ONE The Sociology of Illness
Medicine, Sociology, and Illness: Outsider Perspectives
The Experience of Illness: Toward an Insider's Perspective
Studying Epilepsy: Data, Sample and Method
Outline of the Book
TWO The Historical andSocial Realities of Epilepsy
Historical Notes
Three Myths About Epilepsy
Myth 1: Epilepsy Is an Inherited Disease
Myth 2: Epilepsy Creates Psychopathology and Leads to Mental Illness
Myth 3: Epilepsy Causes Aggression and Crime
The Social Response to Epilepsy: A Stigmatized Illness
Diagnosis
Epidemiology
Prognosis and Treatment
THREE Discovery
Definitions, Diagnosis, and Discovery
Making the Strange Familiar: Lay Definitions
Medical Uncertainty: Delaying Discovery
Self Diagnosis and Pessimistic Accounts
The Impact of a Medical Label
FOUR The Other Side of Care: Parents and Family Life
Parents, Children, and Epilepsy
Setting the Stage: Open and Closed Parental Styles
The Open Style: Epilepsy as a "Normal" Medical Problem
The Closed Style: A Route to Disability and Dependence
Worry, Protection, and Control
FIVE Seizures and Self
Having a Seizure: Losing Control
Embarrassment
"Call an Ambulance": Seizures as Medical Emergencies
Seizures, Responsibility, and Social Competence
SIX Controlling Seizures, Protecting Face
Toward Regaining Control: Seizure Theories and Preventive Work
Seizure Theories
Preventive Work
Anticipatory Defenses
Emergency Measures
After a Seizure: Attending to Face
SEVEN The Problem of Stigma: Managing Information
Stigma and Epilepsy
The Perception of Stigma
Strategies of Selective Concealment
Instrumental Telling: Disclosing as a Management Strategy
EIGHT Ties That Bind and Free: The Paradox of Medical Care
Seeking Information
Information: A Scarce and Valuable Resource
Obtaining Information
Gaining Control
NINE The Meaning of Medications
A Ticket to Normality
Taking Medications
Self-Regulation: Grounds for Changing Medication Practice
Social Meanings of Regulating Medication Practice
Testing
Controlling Dependence
Destigmatization
Practical Practice
Asserting Control
TEN Having Epilepsy: The Experience and Control of Illness
Managing Uncertainty
Knowledge of Disease and Illness as a Resource
Relationships with Medical Professionals
Managing Regimens
Symptom and Crisis Control
Family Relationships
Friends and Associates
Illness, Social Meanings, and Identity
Suggestions for Change
Changes in Society: The Public Image and Control of Epilepsy
Changes in Medical Practice: Doctors and Patients as Partners
Changes in the Life: Owning Epilepsy and Realizing Self
Doing the Study: Issues, Problems, and Strategies
Studying the Experience of Illness
Who to Study: Sampling
How to Collect Data: Interviewing
Making Sense of the Data: Analysis
Roads Not Taken
Interview Guide
Letter Passed to Anonymous People with Epilepsy
References
Index