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.

Evaluating the Effectiveness of Physical Exercise Interventions in Persons Living With HIV: Overview of Systematic Reviews

“…A recent study of PLHIV showed that more than half of the study sample suffered from HIV-associated lipodystrophy, which was the main body image concern (Alexias, Savvakis, & Stratopoulou, 2015; Gomes Neto, Conceição, Ogalha, & Brites, 2016). Other systematic reviews also reported similar findings for persons not infected with HIV in that AE decreases body fat in overweight or obese persons (Shaw, Gennat, O’Rourke, & Del Mar, 2006) while PRE increases body fat mass in post-treatment cancer patients who lost lean body mass (Lonbro, 2014).…”

“I don't want to look like an AIDS victim”: A New Zealand case study of facial lipoatrophy

“…Unless the taint of stigma invades policy, it is unclear why post‐mastectomy reconstruction is commonplace, but treatment for lipoatrophy is not. Facial lipoatrophy has an effect on the quality of life of those living with HIV (Alexias et al., ; Gagnon & Holmes, ,b; Mancini & Secchiaroli, ; Reynolds et al., ; Shenoy et al., ). The selfies portrayed Tom's suffering: his frustration, anger, depression and resignation.…”

“…When the body changes as a consequence of illness or disease and it no longer looks healthy, “the definition of self can be severely challenged” (Lupton, : 88). Our experience in the world and ultimately our quality of life is negatively impacted (Alexias, Savvakis, & Stratopoulou, ; Huang et al., ; Reynolds, Neidig, Wu, Gifford, & Holmes, ) and this is especially so for those living with a chronic disease such as HIV, where stigma associated with the disease can produce internalised feelings of shame and guilt.…”

The Meaning of Life on Waria Living with HIV/AIDS (Human Immunodeficiency Virus/Acquired Immune Deficiency): A Phenomenological Study

“…A weaken physical condition, guilty feeling (Kang, Rapkin, Remien, Mellins, & Oh, 2005) as well negative response from society in participant's environment will worsen participant's psychological condition. Various negative stigma labelled to PLWHA can be stressors which trigger depression (Alexias, Savvakis, & Stratopoulou, 2016;Boarts, Sledjeski, Bogart, & Delahanty, 2006;Kalichman et al, 2009;Tao et al, 2017). It adds more stressor to participant and causes anxiety fear, if the participant's status as a HIV/AIDS patient is revealed.…”