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.
|Publisher:||Temple University Press|
|Sold by:||Barnes & Noble|
|File size:||293 KB|
Table of ContentsContents 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
Most Helpful Customer Reviews
I have epilespy when i had a it when i was a baby and i was i dont had it dont have it.