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Having Epilepsy - The Experience and Control of Illness (Paperback)
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Having Epilepsy - The Experience and Control of Illness (Paperback)
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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. Joseph W. Schneider is Associate Professor
of Sociology at Drake University. Peter Conrad is Assistant
Professor of Sociology at Brandeis University.
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