Academic journal article Health Sociology Review

Agents in Time: Representations of Chronic Illness

Academic journal article Health Sociology Review

Agents in Time: Representations of Chronic Illness

Article excerpt

People experience chronic illness in the con- text of family (Ward, Jowsey, Haora, Aspin, & Yen, 2011), community (Heil & Macdonald, 2008), society (Bury, 1982); the past, the present and the future. Too often studies of patient expe- rience have focussed on individual processes of managing illness or communicating with health care providers to the exclusion of accounts that highlight the impact of chronic disease on personal experience, identity and life trajectory. However, some social scientists have conceptualised chronic illness as biographical (Bury, 1982). Experiences of chronic illness disrupt the way people expe- rience everyday life; leading to disruptions to personal autonomy and senses of identity. Living with chronic illness requires biographical work to adjust and reconfigure personal biographies.

Cross cultural accounts such as Dussart's (2009, 2010) suggest that living between two cultures creates additional dimensions for the task of biography. She found that people refashion different knowledges which shape their experi- ences of illness and lead to forms of agency, such as hiding illness, that appear to contradict west- ern medical regimes but allow people to engage in important traditional social roles.

Biographical disruptions and processes of reconfiguring identity take place in time, and in relation to past, present and future trajectories. Zimbardo's work on time perspectives explores the role of time in agency, suggesting that indi- vidual changes in time perspectives can inform future health outcomes (Boniwell & Zimbardo, 2003; D'Alessio, Guarino, De Pascalis, & Zimbardo, 2003; van Beek, Berghuis, Kerkhof, & Beekman, 2011; Zimbardo, 2002). In this paper we bring together notions of time and biography to illustrate the way the Aboriginal and Torres Strait Islander people who partici- pated in this study shifted boundaries, priorities and perspectives to mobilise modes of self- representation and agency in their management of chronic illness.

BACKGROUND

Building on the work of Parsons (1963), Bury contends that chronic illness constitutes a major disruption to life and personal identity, disrupt- ing social obligations, requiring people to take on new ways of being that carry with them new social obligations. These changes, according to Bury, fundamentally challenge the i ndividual's identity. He contends that chronic illness holds 'precisely that kind of experience where the structures of everyday life and the forms of knowledge which underpin them are disrupted' (Bury, 1982, p. 169). Such disruptions are seen as creating risk in so far as the meanings and cultural categories which are applied to every- day experience and shared by others may be jeopardised.

Accounts of chronic illness from people liv- ing in cross-cultural contexts suggest a signifi- cant additional dimension of biographical work. In relation to Australia's Indigenous peoples specifically, biographical work is undertaken in multiple arenas; in the family and community context (Griew et al., 2007; Ward et al., 2011), in Indigenous and/or non-Indigenous health services (Scrimgeour & Scrimgeour, 2008; Sibthorpe, 2009); and is also informed by spe- cific historical contexts (Aspin, Brown, Jowsey, Yen, & Leeder, 2012; Hoy, 2009; Paradies & Cunningham, 2009). Dussart (2009, 2010) explored the ways in which the Warlpiri peo- ple of the Western Desert interpret connections between traditional and western biomedical aetiologies of illness as a means of exploring their experience of chronic illness and understanding illness behaviours. She suggested that the sick role, as defined traditionally by Aboriginal peo- ple carries with it strict rules of social obligation and rules of behaving that conflict with biomed- ical rules of self-management and geographical location/access to health services. This conflict, she suggests, deters people from revealing their diabetes and from consistently following bio- medical paradigms of chronic illness manage- ment (Dussart, 2010). …

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