Having Epilepsy: The Experience and Control of Illness

295 Pages·1985·9.14 MB·English

by  Joseph Schneider

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