Illness has been studied primarily as something to be explained, eradicated, and controlled, usually by doctors. Medical culture and personnel aretheauthority on what illness is and what are the important questions to ask about it. One consequence of this has been that distinctions between illness and disease have been blurred. While illness and disease are related, they are not the same. Disease is understood best as an undesirable physiological process or state. Illness, in contrast, has less to do with problems of body per se than with the social and psychological phenomena that accompany these putative physiological problems...

Illnesses have historical and social realities that may be studied independently of how people experience them. In fact, to understand the experience of illlness, we need to know more about what diseases and illnesses are as social objects, meaning as things on which people base their thought and action. What a disease or illness is in this social sense is not determined by any biophysiological process, nor is it obvious. The definition, meaning, treatment of, and response to an illness vary by social, cultural and historical context. The social reality affects how people experience illness as well as how others...

In one sense, the story of what it is like to have epilepsy, or cancer, or diabetes, or any other illness begins with medical diagnosis. People come under scrutiny of a physician and are told that they “have” this or that disease or disorder. But medical diagnosis is not usually the origin of illness experience and sometimes does not come at the beginning of people’s involvemlent with doctors. Our own experiences with illness tell us that often long before going to the doctor, we “know something is wrong.” We ache, “feel bad,” are unable to do things we usually do,...

One place outside the hospital where illness has been studied is in the family. Over the past two decades, social scientists and others have turned their attention more and more to illness and the family (Davis, 1963; Litman, 1974; Voysey, 1975; Burton, 1975; Featherstone, 1980; Locker, 1981; Speedling, 1982). With few exceptions, however, this research has asked various forms of the following question: What is the impact of illness on the family? This subsumes a number of more specific questions, such as: How do parents manage their child’s illness? What does a child’s illness do to relationships between spouses and...

Illness is a humbling experience, a great leveler. It reminds us that despite social position and personal accomplishment, talent or charm, we rely on the trouble-free operation of our bodies as a taken-for-granted medium through which we create and express our selves.

Although we continue to learn new things about the connections between body and mind, the operation of our bodies is defined in general to be quite beyond our willful control. Hearts continue or fail to continue pumping blood, neurons transmit electrochemical impulses, tissues grow, develop, and die quite independent of our intentions.* This becomes only too apparent to...

Seizures, like illness more generally, are things to be minimized, controlled, and if possible, eliminated altogether. They are fraught with negative potentially discrediting meanings about the self. When others witness their seizures, people feel embarrassed, humiliated, and anxious about others’ subsequent treatment and definitions of them. As a result, those who have had public seizures try hard to minimize their impact.

People who have seizures must contend with an unknown yet constant degree of uncertainty in their lives. This uncertainty most respondents incorporated into the planning and pursuit of their daily activities. They could never be sure that a seizure...

Illness describes a moral condition. To be sick or to have a disorder is to go through something unfortunate, “bad,” or undesirable. But the metaphor of illness (cf. Sontag, 1978) further conveys irregularity, victimization, pity, and even revulsion. This moral component of illness is most apparent in the chronic conditions in which distinctions between disease or disorder and self become blurred. A passing cold, flu, or even a more serious acute condition or malfunction do not have the implications for self or identity that chronic conditions do.

Epilepsy, of course, is just such a disorder. As such, it describes an...

Doctors help people who have an illness maintain conventional lives. People with epilepsy rely on doctors to make proper diagnoses, provide information, give support and direction in managing epilepsy, and to prescribe and monitor medications that help control seizures. Theyneedphysicians to help them control epilepsy. At the same time, our respondents had distinctly mixed feelings about their relationships with doctors. Some respondents characterized their doctors as “conscientious,” “gentle and caring,” “supportive,” and said they were “satisfied” and “treated well.” Others complained about doctors who “didn’t care,” or who were “brusque,” “always in a hurry,” and “very little help.”...

Drugs have become the technique of choice in much modern medical practice. Moreover, patients themselvesexpectto be given one or another kind of medication as part of effective medical treatment. Studies of placebo effects demonstrate that having these expectations met, even by chemically inert pills, can contribute to a patient’s sense of well-being and reduced symptoms. The existence, prescription, and use of medications, then, constitute an integral part of the typical relationships between doctors and patients.

Medication is a particularly important element in the treatment and experience of chronic illnesses such as diabetes, heart disease, and, of course, epilepsy....

We cannot understand illness experience by studying disease alone, for disease refers merely to undesirable changes in the body. Illness, however, is primarily about social meanings, experiences, relationships, and conduct that exist around putative disease. People may have diseases without being ill, and vice versa.* Physicians and medical science are the official managers of disease (on balance, for our own good fortune). We have tried to examine having epilepsy as a social experience and process that occurs, for the most part, outside the scrutiny of professional medicine. This nonprofessional/ noninstitutional context is particularly important to people living with chronic illnesses,...