Abstract
Over the last several decades, sociological interest in and research on the relationship between illness and identity has flourished. Unlike disease, which refers primarily to physical pathology, illness generally refers to lived experience (Kleinman et al. 1978). The foci of this research have been two-fold: an examination of the public self (an individual’s identity as perceived by others) and the private self (an individual’s identity as perceived by oneself) and how the two interact with and affect each other (Kelly and Millward 2004). Yet, the commonality among the majority of studies focusing on illness and identity is that researchers have usually treated identity as a function of illness – that is, how one’s identity forms or changes as a result of contracting a particular disease or condition. This approach has been represented most successfully by those sociologists who view illness as an identity disruption (e.g., see Charmaz 1993; Karp 1996) and those interested in the relationship among identity, stigma, and illness (e.g., see Link 1987; Link et al. 1991). Recent studies have focused on how individuals strive to maintain their sense of self in spite of illness. Hinojosa et al. (2008), for example, find that veterans who had suffered a stroke were able to maintain a continuous sense of self by drawing upon their religious beliefs and cultural expectations of aging. Likewise, Sanders et al. (2002) find that while people with osteoarthritis do talk about the disruptive effects of the condition on their daily lives, they still manage to view these symptoms as part of their normal lives.
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Notes
- 1.
Although the majority of work in this area focuses on diagnosed physical pathologies, some also document the lived experience of individuals whose conditions are still contested. For instance, Barker (2002) examines how self-help literature helps those diagnosed with Fibromyalgia syndrome (FMS) to construct a coherent illness identity. Fibromyalgia, as well as other forms of chronic pain, are particularly difficult for those who have it in that the symptoms associated with the condition are invisible or have no organic cause. In their study of individuals with facial pain, Lennon et al. (1989) point out that because pain cannot be explained biomedically, those who suffer from it are often stigmatized.
- 2.
Additionally, meanings may also be linked to circumstances that extend beyond the immediate definition of the situation – that is, meanings may also be shaped by broader historical and cultural settings where “unarticulated assumptions about the nature of the person have their origins” (Callero 2003, p. 121).
- 3.
Note that the term epileptic is a social identity, rather than a condition. Scholars have argued that epilepsy is a deeply discrediting condition because it meets more than one of Goffman’s (1963) characteristics of stigma. Other physical health conditions that are socially discrediting include HIV/AIDS (Fife and Wright 2000), eating disorders (e.g., see Rich 2006), and disability (e.g., see Rose 2006). Again, like epilepsy, each of these conditions contains multiple elements of stigma; specifically, each involves not only the individual’s body, but also, in the minds of many, their character.
- 4.
Also see Schneider and Conrad’s (1983) study on individuals with epilepsy.
- 5.
Secondary deviance is explained primarily in two ways. First, once individuals have been labeled as deviant, most – if not all – of their behaviors are viewed as a manifestation of their deviance. For instance, if individuals have been labeled as having depression, all of their behavior is interpreted to be a result of their mental state. Second, once individuals have been labeled as deviant, they may respond to what they perceive as others’ reactions to them in ways that either inadvertently or intentionally reaffirms their stigmatized identity (Lemert 1999).
- 6.
Elsewhere, Link and Phelan have identified stigma as a fundamental cause (2001) for mental health disorders.
- 7.
Despite the strength of this approach – as well as its intuitive appeal – recent narrative accounts of diagnosis suggest that some seem to experience their conditions as improving upon being labeled. In a personal memoir describing his experience with Asperger’s Disease, John Robinson (2007) reports that instead of internalizing the stigma associated with the label, he was reassured by having gained a greater understanding of the thing he had been plagued by – unbeknownst to him – since childhood. His experience with Asperger’s – a developmental disorder that leads to social and communicative difficulties – matches those of individuals who suffer from chronic pain and other “invisible” conditions who seek diagnosis as a means of legitimizing their experiences to the outside world.
- 8.
Recently, however, social movement scholars have noted that social movement organizations have become more skilled at recasting potentially stigmatized – or otherwise damaged – identities in a more positive light in order to better effect social change (Britt and Heise 2000; Taylor and Van Willigen 1996).
- 9.
“Social identities” refer to identities that are derived from group membership (e.g., female or Asian–American), whereas “person identities” refer to personal characteristics or attributes that describe a particular person across social roles (e.g., intelligent, compassionate, competitive). Indeed, Affect Control Theory (Heise 1979) treats “person identities” as attributes that have the ability to moderate role identities, instead of as identities in their own right.
- 10.
In his account of his journey toward becoming a quadriplegic, anthropologist Robert Murphy (1990) discusses how his condition affected his ability to conduct fieldwork. As he pointed out, anthropologists garner status and prestige through their field work. In an effort to maintain some status within his chosen field, he turned to writing anthropology textbooks, even though he knew that such an activity was relatively devalued within his discipline.
- 11.
Recently psychologists have also become more interested in identity hierarchies, as they seem to operate like cognitive schemas. Self-schemas refer to cognitive filters that develop in the brain over time which affect the ways in which individuals attend to, store, and retrieve – in this case – self-referential information (Kilstrom and Cantor 1984; Markus 1977; also see Linville and Carlston 1994). To the degree that identity hierarchies operate similar to schemas, it may also be that individuals who hold an illness identity that is maintained within their significant social networks are more likely to notice, attend to, and remember information, encounters, and incidents that support their view of themselves and of their situation (Morgan and Schwalbe 1990). This suggests that someone for whom the illness identity is particularly salient may pay more attention to his or her aches and pains than those for whom the identity is not particularly salient. This is not to say that individuals willfully choose to process some information and ignore others; rather, their identity provides filters that operate at a more subconscious level.
- 12.
Another insight that can be gleaned from these theories is the importance of considering actors’ social networks. To date, scholars have become increasingly interested in the role that one’s social networks have on a variety of health related behaviors, including the utilization of health care services (Pescosolido 1996, 2006), agreement to genetic testing and other forms of screenings (Husaini et al. 2001; Levy-Storms and Wallace 2003), and adherence to treatment regimens (Westphal 2004). According to a more network centered perspective, our social networks help influence our understanding of a particular situation; subsequently these understandings also affect future behaviors.
- 13.
While we recognize that some diseases are debilitating and may, to some degree, act as master statuses (Hughes 1945), there remain individuals who chose to invest in other role identities despite overwhelming odds. For instance, in a recent study of mothers who have HIV/AIDS, Wilson (2007) found that her respondents continue to cling to the mother identity and emphasize their need to survive and protect their children. Typically, however, individuals who are able to maintain alternate roles in the face of devastating illnesses or physical conditions tend to have considerable economic, cultural, and social capital at their disposal.
- 14.
Although affect control theory assumes that the majority of sentiments within a culture are commonly shared, scholars have nonetheless documented some subcultural variations. Most subcultural differences in sentiments exist as a result of differences in identities or behaviors that are associated with one group and not another (Heise 2006). For example, Smith-Lovin and Douglass (1992) reported that members of a liberal gay church had more positive meanings attached to identities such as homosexual and behaviors such as sodomy than members of a fundamentalist church. Heise (2006) argues that 80 percent of people’s affective sentiments come from the influence that the dominant culture wields, and the remaining percentage stems from personal experiences. Smith and colleagues (Smith and Francis 2005; Smith et al. 2001) have also found subtle, yet significant variations in the sentiment structures of Japanese and US samples.
- 15.
In order to use INTERACT, available at http://www.indiana.edu/∼socpsy/ACT/interact.htm, one must put all interactions into the format of actor-behavior-object. Using advanced settings, the researcher can also choose personal attributes (e.g., opinionated, lazy, friendly), as well as the settings in which the interaction is likely to occur (e.g., a hospital, a clinic, a bar).
- 16.
Perhaps not surprisingly, individuals who attended the grief support group for widows and widowers were less inclined to accept a blatant negative reconceptualization of their deceased spouse’s identity than those individuals who had lost a spouse to abandonment or divorce.
- 17.
The non-patient samples included both network members of the mentally ill as well as college students from a nearby state university.
- 18.
- 19.
- 20.
Although obesity has not been fully accepted as a disease in the traditional sense, it is a physical condition that undoubtedly impacts health and contributes to other diseases, such as diabetes, hypertension, high-blood pressure, bulimia, etc. Gaining insight into the cognitive barriers to weight-loss, then, has important implications for a variety of health related dilemmas.
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The authors would like to thank Brian Powell, Sean Smith, and Michael Yacavone for their assistance and support throughout this project. This draft was supported, in part, by the Rockefeller Center for Public Policy at Dartmouth College and the Faculty Grants Committee at Millersville University.
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Lively, K.J., Smith, C.L. (2011). Identity and Illness. In: Pescosolido, B., Martin, J., McLeod, J., Rogers, A. (eds) Handbook of the Sociology of Health, Illness, and Healing. Handbooks of Sociology and Social Research. Springer, New York, NY. https://doi.org/10.1007/978-1-4419-7261-3_26
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