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Illness narratives: time, hope and HIV

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  • Ezzy, Douglas

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.

Suggested Citation

  • Ezzy, Douglas, 2000. "Illness narratives: time, hope and HIV," Social Science & Medicine, Elsevier, vol. 50(5), pages 605-617, March.
  • Handle: RePEc:eee:socmed:v:50:y:2000:i:5:p:605-617
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    Citations

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    Cited by:

    1. Rhodes, Tim & Bernays, Sarah & Terzic, Katarina Jankovic, 2009. "Medical promise and the recalibration of expectation: Hope and HIV treatment engagement in a transitional setting," Social Science & Medicine, Elsevier, vol. 68(6), pages 1050-1059, March.
    2. Whitehead, Lisa Claire, 2006. "Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis," Social Science & Medicine, Elsevier, vol. 62(9), pages 2236-2245, May.
    3. Sanders, Caroline & Rogers, Anne & Gately, Claire & Kennedy, Anne, 2008. "Planning for end of life care within lay-led chronic illness self-management training: The significance of 'death awareness' and biographical context in participant accounts," Social Science & Medicine, Elsevier, vol. 66(4), pages 982-993, February.
    4. repec:eee:socmed:v:198:y:2018:i:c:p:53-60 is not listed on IDEAS
    5. Pierret, Janine, 2007. "An analysis over time (1990-2000) of the experiences of living with HIV," Social Science & Medicine, Elsevier, vol. 65(8), pages 1595-1605, October.
    6. Russell, Steven & Seeley, Janet, 2010. "The transition to living with HIV as a chronic condition in rural Uganda: Working to create order and control when on antiretroviral therapy," Social Science & Medicine, Elsevier, vol. 70(3), pages 375-382, February.
    7. Smith, Brett & Sparkes, Andrew C., 2005. "Men, sport, spinal cord injury, and narratives of hope," Social Science & Medicine, Elsevier, vol. 61(5), pages 1095-1105, September.
    8. Parsons, Janet A. & Eakin, Joan M. & Bell, Robert S. & Franche, Renée-Louise & Davis, Aileen M., 2008. ""So, are you back to work yet?" Re-conceptualizing 'work' and 'return to work' in the context of primary bone cancer," Social Science & Medicine, Elsevier, vol. 67(11), pages 1826-1836, December.
    9. Stein, Joanne & Lewin, Simon & Fairall, Lara, 2007. "Hope is the pillar of the universe: Health-care providers' experiences of delivering anti-retroviral therapy in primary health-care clinics in the Free State province of South Africa," Social Science & Medicine, Elsevier, vol. 64(4), pages 954-964, February.
    10. Corbett, Mandy & Foster, Nadine E. & Ong, Bie Nio, 2007. "Living with low back pain--Stories of hope and despair," Social Science & Medicine, Elsevier, vol. 65(8), pages 1584-1594, October.

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