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179 11 The Internet and the Experience of Illness Peter Conrad, Brandeis University Cheryl Stults, Brandeis University illness studies through roughly the year 2000 are that with few exceptions there were no illness subcultures and that illness was a profoundly privatizing experience. In an early statement, Parsons and Fox (1952, 137) observed that “illness usually prevents the individual from attaching himself to a solidary subculture of similarly oriented deviants .” Sociologists who studied the experience of illness studied individuals through interviews and, in contrast to a field like deviance, could not render ethnographies of illness subcultures, for they essentially did not exist. There were a few cases where sociologists could study patient subcultures in hospitals, the most famous of which are the classic studies of TB hospitals (Roth 1963) and mental institutions (Goffman 1961), but these were studies of the experience of patienthood more than of the experience of illness. Other than hospitals, there were few settings where people with the same illness interacted with one another. There have been a few studies of self-help groups for people with illness, especially post-illness, but studies of these were more about self-help than about the experience of illness (Borkman 1999). In a few rare instances, such as the early days of end-stage renal disease (ESRD), there was sufficient interaction to begin to create some kind of illness subculture (e.g., Kutner 1987), but for the most part patients were treated separately and rarely interacted in meaningful ways with others who had the same illness. One can say with reasonable certainty that there were very few illness Sociologists have studied the experience of illness for at least the past four decades (Conrad 1987). The earliest studies focused on how patients managed the sick role (Parsons 1951) or how they maneuvered through the stages of an illness career (Suchman 1965). Beginning with the work of Anselm Strauss and his colleagues (Glaser and Strauss 1965; Strauss and Glaser 1975), sociological researchers started investigating the experience of illness by examining the illness experience from the patient’s viewpoint. This has led to several lines of work that focused on how people live with and in spite of their illness, the subjective experience of illness, and strategies sufferers develop to manage their illnesses and lives (e.g., Charmaz 1999; Bury 1982; Bell 2000). Researchers have typically used qualitative research methods, especially interviews, to examine the experience of illness (Conrad 1987; Charmaz 1999) and have studied stigmatized illnesses like epilepsy (Schneider and Conrad 1983) and HIV/AIDS (Weitz 1991; Klitzman and Bayer 2003), contested illnesses like fibromyalgia (Barker 2005), psychiatric disorders like major depression (Karp 1997), and medical conditions such as infertility (Greil 1991) and genetic disorders (Cox and McKellin 1999). Numerous studies have focused on how sufferers manage their identity (Charmaz 1991), stigma (Weitz 1991), biographical disruption (Bury 1982), or narrative reconstruction (Williams 1984). Two consistent findings from experience-of- 180 Handbook of Medical Sociology subcultures (had there been more, sociologists and others would certainly have studied them.) Until recently, illness in general was a privatizing experience discussed only with one’s doctor, family, and perhaps a few good friends. It was not unusual for individual sufferers of an illness never to have spoken to another person with the same illness or to have known someone who shared the same illness. In a 1983 study of the experience of epilepsy, when Schneider and Conrad interviewed eighty people with epilepsy, no more than five had ever spoken to another person with epilepsy about their illness experience. It may be in part the stigma that discouraged revealing one’s illness and communication, but for the overwhelming majority of those interviewed illness remained a private experience. With specific illnesses such as HIV/AIDS, where a large and active gay subculture organized around the illness, there was surely more interaction among those with the illness . But this was an unusual situation; typically illnesses were privatized, and most sufferers had little or no communication with people suffering the same disorder. In the past two decades the Internet has changed all that. There are now hundreds, probably thousands, of illness subcultures on the Internet, and illness is now a public as well as a private experience. In short, for many people, the Internet has changed the experience of illness. Coming of the Internet What we now term “the Internet” began in 1969 when four computers in the United States were linked together to pass military information to one another. Until...

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