Having Epilepsy: The Experience and Control of Illness PDF
Preview Having Epilepsy: The Experience and Control of Illness
HAVING EPILEPSY HAVING E~PILEPSY The Experience and Control of IlIness w. Joseph Schneider and Peter Conrad Temple University Press Philadelphia TempleUniversityPress,Philadelphia19122 © 1983byTempleUniversity.Allrightsreserved Published 1983 PrintedintheUnitedStatesofAmerica LibraryofCongressCataloginginPublicationData Schneider,JosephW, 1943- Havingepilepsy. Bibliography: p. Includesindex. 1. Epilepsy-Socialaspects. I. Conrad,Peter, 1945- II. Title. [DNLM: 1.Epilepsy.WL395 S359h] RC372.S29 1983 362.1'96853 83-9153 ISBN 0-87722-318-1 To our fathers C. William Schneiderand George Conrad Contents Preface xi ONE The Sociology ofIllness 3 Medicine,Sociology,andIllness: Outsider Perspectives 4 TheExperienceofIllness: Towardan Insider'sPerspective 9 StudyingEpilepsy:Data,SampleandMethod 15 Outlineofthe Book 19 TWO The Historical and SocialRealities ofEpilepsy 21 viii Contents Historical Notes 22 ThreeMythsAboutEpilepsy 29 Myth 1:EpilepsyIsanInheritedDisease 31 Myth 2: EpilepsyCreatesPsychopathologyandLeadsto Mental Illness 33 Myth 3:EpilepsyCausesAggressionand Crime 39 TheSocialResponse to Epilepsy: AStigmatizedIllness 43 TheMedicalRealityofEpilepsy 47 Diagnosis 47 Etiology 50 Epidemiology 50 Prognosis andTreatment 51 THREE Discovery 53 Definitions, Diagnosis,andDiscovery 54 Makingthe StrangeFamiliar:LayDefinitions 55 MedicalUncertainty:DelayingDiscovery 59 SelfDiagnosisandPessimisticAccounts 64 The Impactofa MedicalLabel 69 FOUR The Other Side ofCare: Parents and FamilyLife 77 Parents, Children, andEpilepsy 79 Settingthe Stage:OpenandClosedParentalStyles 82 The Open Style: Epilepsyas a"Normal"MedicalProblem 83 TheClosedStyle:ARoutetoDisabilityandDependence 86 Worry, Protection, and Control 95 FIVE Seizures and Self 103 Havinga Seizure:LosingControl 104 SeizuresasSocialEvents:Troublefor Others 109 Embarrassment 109 "CallanAmbulance": SeizuresasMedicalEmergencies 114 Seizures, Responsibility, andSocialCompetence 118 ix Contents SIX 4Controlling Seizures, Protecting Face 125 TowardRegainingControl:SeizureTheoriesand Preventive Work 126 Seizure Theories 128 Preventive Work 132 SomeLinesofDefense 136 Anticipatory Defenses 136 EmergencyMeasures 139 Aftera Seizure:AttendingtoFace 141 SEVEN The ]~roblemofStigma: Managing Information 147 StigmaandEpilepsy 149 ThePerceptionofStigma 151 StrategiesofSelectiveConcealment 154 InstrumentalTelling:Disclosingasa Management Strategy 158 EIGHT Tiles ThatBindand Free: The Paradoxof Medical Care 165 Seeking Information 166 Information:AScarceandValuableResource 168 ObtainingInformation 175 Gaining Control 178 NINE The Meaning ofMedications 181 ATickettoNormality 185 Taking Medications 187 Self-Regulation:GroundsforChangingMedication Practice 190 SocialMeaningsofRegulatingMedicationPractice 193 Testing 194 ControllingDependence 196
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