Having Epilepsy: The Experience and Control of Illness

by Schneider, Joseph W.

• ISBN13: 9780877223986
• ISBN10: 087722398X
• Edition: 1st
• Format: Paperback
• Copyright: 1985-06-01
• Publisher: TEMPLE UNIVERSITY PRESS

Summary

Based on in-depth interviews with eighty people who have epilepsy, this book gives a first-hand account of what it is like to cope with a chronic illness, while working, playing, and building relationships. The authors recount how people discover they have epilepsy and what it means; how families respond to someone labeled "epileptic"; how seizures affect a person's sense of self and self-control.Epilepsy patients explain what they want from their doctors and why the medication practices they develop may not coincide with "doctor's orders." The variety of experiences of epilepsy is suggested both by the interviews and by the range of terms for seizures-Petit Mal, Grand Mal, auras, fits, absences.The principal difficulty for many people with epilepsy is not the medical condition but the social stigma. A person with epilepsy has to cope with discrimination in obtaining a job, insurance, or a driver's license, and he or she may be cautious about revealing this "disabling" condition to an employer or even a spouse. People with epilepsy may manage information about themselves and their "lapses" and look for "safe places" like restrooms where they can be alone should a seizure begin. Many of those interviewed complained of overreactions to seizures by colleagues or bystanders: epilepsy patients were embarrassed at having provoked a public crisis or were annoyed at waking up in a hospital emergency room.This is a book for people who have epilepsy, for their families and friends; for health care professionals who deal with chronic illnesses; and for students of medical sociology and the sociology of deviance. Author note: Joseph W. Schneider is Associate Professor of Sociology at Drake University. >P>Peter Conrad is Assistant Professor of Sociology at Brandeis University.

Author Biography

Joseph W. Schneider is Associate Professor of Sociology at Drake University Peter Conrad is Assistant Professor of Sociology at Brandeis University

Table of Contents

Preface	p. xi
The Sociology of Illness	p. 3
Medicine, Sociology, and Illness: Outsider Perspectives	p. 4
The Experience of Illness: Toward an Insider's Perspective	p. 9
Studying Epilepsy: Data, Sample and Method	p. 15
Outline of the Book	p. 19
The Historical and Social Realities of Epilepsy	p. 21
Historical Notes	p. 22
Three Myths About Epilepsy	p. 29
Epilepsy Is an Inherited Disease	p. 31
Epilepsy Creates Psychopathology and Leads to Mental Illness	p. 33
Epilepsy Causes Aggression and Crime	p. 39
The Social Response to Epilepsy: A Stigmatized Illness	p. 43
The Medical Reality of Epilepsy	p. 47
Diagnosis	p. 47
Etiology	p. 50
Epidemiology	p. 50
Prognosis and Treatment	p. 51
Discovery	p. 53
Definitions, Diagnosis, and Discovery	p. 54
Making the Strange Familiar: Lay Definitions	p. 55
Medical Uncertainty: Delaying Discovery	p. 59
Self Diagnosis and Pessimistic Accounts	p. 64
The Impact of a Medical Label	p. 69
The Other Side of Care: Parents and Family Life	p. 77
Parents, Children, and Epilepsy	p. 79
Setting the Stage: Open and Closed Parental Styles	p. 82
The Open Style: Epilepsy as a "Normal" Medical Problem	p. 83
The Closed Style: A Route to Disability and Dependence	p. 86
Worry, Protection, and Control	p. 95
Seizures and Self	p. 103
Having a Seizure: Losing Control	p. 104
Seizures as Social Events: Trouble for Others	p. 109
Embarrassment	p. 109
"Call an Ambulance": Seizures as Medical Emergencies	p. 114
Seizures, Responsibility, and Social Competence	p. 118
Controlling Seizures, Protecting Face	p. 125
Toward Regaining Control: Seizure Theories and Preventive Work	p. 126
Seizure Theories	p. 128
Preventive Work	p. 132
Some Lines of Defense	p. 136
Anticipatory Defenses	p. 136
Emergency Measures	p. 139
After a Seizure: Attending to Face	p. 141
The Problem of Stigma: Managing Information	p. 147
Stigma and Epilepsy	p. 149
The Perception of Stigma	p. 151
Strategies of Selective Concealment	p. 154
Instrumental Telling: Disclosing as a Management Strategy	p. 158
Ties That Bind and Free: The Paradox of Medical Care	p. 165
Seeking Information	p. 166
Information: A Scarce and Valuable Resource	p. 168
Obtaining Information	p. 175
Gaining Control	p. 178
The Meaning of Medications	p. 181
A Ticket to Normality	p. 185
Taking Medications	p. 187
Self-Regulation: Grounds for Changing Medication Practice	p. 190
Social Meanings of Regulating Medication Practice	p. 193
Testing	p. 194
Controlling Dependence	p. 196
Destigmatization	p. 199
Practical Practice	p. 201
Asserting Control	p. 202
Having Epilepsy: The Experience and Control of Illness	p. 205
Illness and Epilepsy: General Concerns and Particular Insights	p. 207
Managing Uncertainty	p. 207
Knowledge of Disease and Illness as a Resource	p. 209
Relationships with Medical Professionals	p. 211
Managing Regimens	p. 212
Symptom and Crisis Control	p. 214
Family Relationships	p. 215
Friends and Associates	p. 217
Illness, Social Meanings, and Identity	p. 220
Suggestions for Change	p. 221
Changes in Society: The Public Image and Control of Epilepsy	p. 223
Changes in Medical Practice: Doctors and Patients as Partners	p. 227
Changes in the Life: Owning Epilepsy and Realizing Self	p. 229
Appendix	p. 233
Doing the Study: Issues, Problems, and Strategies	p. 233
Studying the Experience of Illness	p. 234
Who to Study: Sampling	p. 236
How to Collect Data: Interviewing	p. 240
Making Sense of the Data: Analysis	p. 241
Roads Not Taken	p. 244
Interview Guide	p. 246
Letter Passed to Anonymous People with Epilepsy	p. 251
References	p. 253
Index	p. 269
Table of Contents provided by Syndetics. All Rights Reserved.