Illness narratives: time, hope and HIV

Abstract

Life threatening illness, such as HIV/AIDS, also threaten people's sense of identity and taken-for-granted assumptions about the temporal framing of their lives. In response, people often experience transformations in values, spirituality and life priorities. Drawing on a combined quantitative and qualitative study of people living with HIV/AIDS in Australia, three different narratives that people use to make sense of their illness experience are identified: linear restitution narratives, linear chaotic narratives and polyphonic narratives. Linear illness narratives colonise the future, assuming that the future can be controlled through human action. They emphasise a faith in medical science, tend to be secular and self-centred and assume the end of life to be in the distant future. Hope is focused on concrete outcomes such as improved health or material possessions. Linear narratives can be either restitutive or chaotic. Restitutive linear narratives anticipate a life that will mirror the narrative. Chaotic linear narratives anticipate a life that will fail to meet the linear ideal resulting in despair and depression. In contrast, polyphonic illness narratives are oriented toward the present, emphasising the unpredictability of the future. These narratives tend to include spiritual experiences, a communally oriented value system, and to recount increased self-understanding and the gaining of new insights as a consequence of their illness. Hope in polyphonic narratives is more abstract and focused on a celebration of mystery, surprise and creativity.