The idea of illness as biographical disruption was initially conceptualised by Bury (1982), who proposed that the onset of chronic illness causes major disruption to the structures of everyday life, and the taken-for-granted assumptions underpinning them. In his study about the experiences of thirty individuals newly diagnosed with rheumatoid arthritis, he identified three aspects of disruption. First, the experience of disruption to previously taken-for- granted assumptions and behaviours, which “involves attention to bodily states not usually brought into consciousness” (Williams 2003:96), as people experience physical symptoms. Secondly, there were disruptions to explanatory systems normally used; “such that a fundamental re-thinking of the person’s biography and self-concept is involved” (Bury 1982:169). The person asks questions such as ‘Why me?’, ‘Why now?’, and attempts to understand the illness in the context of their lives. The third aspect identified by Bury was that of the individual’s response to the disruption, involving the mobilisation of resources in the face of an altered situation.
The framework developed initially by Bury, therefore, provides an analytical framework for examining how people experience chronic illness, and the work involved in constructing, re-
Chapter Three – Literature review – Biographical disruption
constructing, and maintaining their identity in the face of illness. Bury’s work has proved to be an influential and persistent theory in the decades since it was published (Williams 2003). It offers a critique of the biomedical emphasis on recovery and restitution after illness, and can be seen as a conceptual starting point to begin analysis of the experience of illness. However, several weaknesses have been identified, and this has led to developments of the theory. For example, it arguably supports a ‘personal tragedy’ model of disability (Williams 2003:99), which views disability as a characteristic located within individuals rather than as culturally and socially produced through practices which result in the oppression and social exclusion of disabled people (Shakespeare 2006). Within Bury’s framework, the
significance of socially constructed ideas about disability or illness was overlooked. Critiques of Bury’s (1982) work have thus often questioned how well it engaged with how social inequality and social structure shape the experience and perception of illness. The following section engages with other recent developments of the theory of biographical disruption, and identifies their relevance to this study
The significance of biographical and social circumstances
Social constructions about age and the life course have been shown to shape the experience of illness. For example, Bury (1982) identified that the younger women in his study held perceptions about rheumatoid arthritis as a disease of the elderly, and their diagnosis therefore made them question their identities as young people. The illness was experienced as a “biographical shift from a perceived normal trajectory through relatively predictable chronological steps, to one fundamentally abnormal and inwardly damaging” (1982:171). On the other hand, illness may be experienced as coherent within some people’s biographies, such as in the case of illness diagnosed from birth or early in childhood. It has been argued that in these cases the individual does not experience a shift from one trajectory to another, but rather a continuity of biography (Williams 2003; Williams et al. 2009). Biographical disruption might also not be experienced by older people diagnosed with diseases which are
Chapter Three – Literature review – Biographical disruption
associated with their life stage. For example, Sanders et al. (2002) and Faircloth et al. (2004) found that their interviewees drew on age to construct a discourse of normality when talking about their experiences of osteoarthritis and stroke respectively. Faircloth et al. identified what they termed a ‘biographical flow’ in the narratives of their participants, who seemed to view illness as inevitable and part-and-parcel of old age.
Social circumstances also shape how people experience illness in relation to their biography. Bury (1982:169) wrote that the onset of “chronic illness involves a recognition of the worlds of pain and suffering, possibly even of death, which are normally only seen as distant possibilities or the plight of others”. However, this may not be relevant to those people who are already familiar with the worlds of pain and hardship (Pound et al. 1998). In their study of the experience of stroke in men and women aged between 40 and 87 (average age 71), Pound et al. found that the stroke often seemed unimportant to the participants in the context of poverty and other illnesses which characterised many of their lives. Similarly, in her study of the experiences of women who were HIV positive, Ciambrone (2001) found that women identified other events in their lives as being more disruptive than the HIV diagnosis, such as abusive relationships, drug and alcohol abuse, and separation from their children. These studies highlight the importance of contextualising illness within the social circumstances of the lives of individuals, and they sensitise researchers to avoid the assumption of universal biographical disruption (Williams 2003).
However, it should not be assumed that the experience of illness in difficult social circumstances does not produce biographical disruption, particularly when the illness threatens key aspects of identity. The lack of an engagement with gender in Bury’s work has been criticised (Ciambrone 2001; Wilson 2007). For example, Bury did not explore the implications of serious illness for the caregiving responsibilities of women, and how interference with these responsibilities impacted on women’s identities (Wilson 2007). Wilson (2007) explored biographical disruption in the context of HIV infection,
Chapter Three – Literature review – Biographical disruption
interviewing twelve women who were HIV positive and had children. Despite also having experienced difficulties such as abusive relationships and substance abuse, as in
Ciambrone’s (2001) research, these women still experienced HIV as biographically disruptive because of the way it threatened their identity as mothers, which was a central source of identity for the women. HIV was experienced as a fundamental threat to their motherhood both in terms of stigma, and the possibility of leaving their children without a mother. This suggests that the relationship between illness and biography is more complex than Bury first considered. For example, even in difficult circumstances, being young and diagnosed with breast cancer could mean biographical disruption, as while young women may already be familiar with hardship, they may feel that their gender identity as young women is challenged by breast cancer.
In this thesis, I will be drawing on the concept of biographical disruption in light of these more recent developments of the theory, mindful of the significance of social context and how it shapes the experience of illness as biographical disruption. In the rest of this chapter, I evaluate existing literature in terms of how well it has considered the significance of biographical disruption in exploring the impact of breast cancer on young women’s identities.