Embodiment and biographical disruption in people living with HIV/AIDS (PLWHA)

ABSTRACT

This study attempts to provide a concrete understanding to the embodied experience of HIV/AIDS. PLWHA have to cope with physical changes, especially lipodystrophy, caused by HIV and its treatment. These clinical manifestations make the disease socially visible and form a potential source of stigmatization. Visibility seems to transform the personal experience of this particular illness into a collective one. The changing body image and the stigma, which is often internalized by individuals, along with other consequences of chronic illness, such as alteration of life plans and social relationships, constitute new elements that appear in their life after diagnosis. These new experiences can break one's biographical continuity, especially in cases like HIV/AIDS. Semi-structured and in-depth interviews were conducted with 18 HIV-positive individuals (13 men, 5 women) with lipodystrophy. Their ages ranged from 36 to 65 years. The analysis of data revealed three main themes: loss of control over the body, ambivalence about visibility of HIV/AIDS, attributing positive meaning to HIV/AIDS. Physical changes caused by lipodystrophy are a source of dysphoria for PLWHA. This dissatisfaction was closely associated with the absence of control over their own body, due to the virus and the side effects of medication. Furthermore, it became evident that there was ambivalence among participants about the visibility of HIV, as it was in parallel a source of stigmatization, but also a part of their identity and biography. Results indicate that individuals were in search of meaning and constitute strategies in order to “answer” to the disruptive aspects of HIV. These were the normalization of illness, the integration into personal identity and the recognition of positive effects of HIV in their lives (e.g., stopping drug and alcohol abuse). Further research is required to identify the factors that determine the selection of each “answer” by these particular individuals who belong to broader social groups.

KEYWORDS:

• PLWHA
• biographical disruption
• body image
• lipodystrophy
• qualitative research
• stigma