Narratives of People Living with HIV and Aging: Stigma, Loss, and Opportunities for Growth

Background and Purpose:
With advances in antiretroviral therapy, a growing number of people diagnosed with HIV in the 1980s and 1990s are now reaching older adulthood—an outcome once thought unlikely. Yet, the experiences of long-term survivors aging with HIV remain underexplored, particularly in relation to the psychosocial impact of living through the height of the AIDS epidemic. This study seeks to examine how individuals aging with HIV construct meaning around survival, loss, stigma, and resilience. The research questions focus on how long-term survivors reflect on their past and present experiences and how they navigate the emotional, social, and existential dimensions of aging with HIV.

Methods:
This qualitative study employed a narrative methodology to capture the lived experiences of twelve individuals aged 50 and older who have lived with HIV for over two decades. Participants were recruited through HIV advocacy groups and community health organizations using purposive sampling. Data collection consisted of in-depth, semi-structured interviews focused on themes of illness trajectory, identity, loss, and aging. Interviews were transcribed and analyzed using thematic narrative analysis to identify shared patterns, turning points, and forms of meaning-making within personal narratives.

Results:
Participants described a unique combination of grief and gratitude, shaped by the loss of peers during the epidemic and their own unexpected survival. Common themes included long-term physical and emotional effects of HIV treatment, shifting attitudes toward mortality, and evolving identity in the context of chronic illness. Stigma—both historical and ongoing—remained a significant challenge, yet many participants also described experiences of post-traumatic growth, activism, and renewed life purpose. A strong desire to share their stories and contribute to intergenerational knowledge emerged as a collective need among participants.

Conclusions and Implications:
The findings emphasize the importance of trauma-informed and strengths-based approaches in working with older adults living with HIV. Implications for social work and allied health professions include the development of supportive services that address cumulative grief, foster resilience, and validate long-term survivorship. The study advocates for greater recognition of this aging cohort within policy, clinical care, and public health frameworks, contributing to a more inclusive understanding of chronic illness, aging, and social justice.