“Well, They Just Gave up”: Othering As Part of the Survival Experience of Older Men with HIV in New York City

Background and Purpose: It is estimated that by the end of 2015, half of those living with HIV/AIDS in New York City will be over 50 and many of these individuals are long-term survivors, reflecting the transformation of HIV from a life-threatening illness to a chronic disease. However, the distinctive lived experiences of older long-term survivors with HIV/AIDS have gone relatively understudied. While the use of moral narratives as a form of differentiation and internalized stigma have just began to be explored among this population, one aspect that has yet to be studied is the use of othering.

This paper fills this gap by utilizing the theoretical framework of othering to explore how older male survivors of HIV/AIDS perceive those who died as different from self. Additionally, participants of the study highlight the use of defense mechanisms, support systems and a future-oriented outlook to facilitate survival.

Methods: Twenty in-depth open-ended interviews were conducted with older (ages 50 to 76) men who were long-term survivors of HIV/AIDS (time since diagnosis, years 15 to 30). The sample is predominantly Black/African American (70% Black/African American, 15% Hispanic/Latino, 10% Bi-racial/Other, 5% White), gay (65% gay, 20% bisexual, 15% heterosexual), unemployed (80% unemployed) and educated (40% completed some or all college and 50% completed high school or GED). Participants were recruited via posted fliers at a nutritional program for people living with HIV/AIDS in New York City. Interviews elicited participants lived and survival experience. Interviews were transcribed verbatim, and coded using ATLAS.ti, guided by the principles of Colaizzi’s (1978) descriptive phenomenological method.

Findings: Data analysis reveals that participants initially felt overwhelmed following diagnosis, followed by a desire to live and fight back. Participants recounted how they utilized these feelings as an impetus to engage in health care, seek out social support and begin planning a future.

All participants described how HIV/AIDS had led to multiple losses in their lives; this was particularly pronounced in those who identified as gay. Participants described losses through stigma (abandonment by friends and families) and death of a friend or partner from HIV. They described viewing these deaths, first through fear and subsequently from an exclusionary othering lens. Specifically, participants reported feeling dominance over those who had died, ascribing those who had died with characteristics relating to weakness and defeatism. Moreover, the participants reported that othering those who had died imbued them with a sense of personal empowerment and this, in conjunction with aging, had led to them feeling that they were able to plan for the future.

Conclusion and Implications: Findings highlight the importance of othering as part of the survival process among long-term male survivors with HIV/AIDS. While this study indicates that exclusionary othering may have a positive impact on this group, its primary findings should be interpreted as the importance of empowering as a way to cope with stigma, and survive and age successfully. Moreover, given the rather homogenous population, further research should explore this issue with a more diverse group of long-term survivors.