‘It feels like my visibility matters’: Women ageing with HIV overcoming the ‘violence of invisibility’ through community, advocacy and the radical act of care for others

Abstract

Objectives: A participatory qualitative study exploring women’s experiences of ageing with HIV in London, United Kingdom. The research considered how the concept of ‘community’ was relevant to women’s experiences and what constructions of ‘community’ could be discerned in the experiences, accounts given and discourses employed by older women living with HIV. Methods: The research presented in this article was conducted as a PhD study between 2015 and 2019. The study was structured in multiple and overlapping phases, and adopted a feminist and participatory approach. The methods used in the research were as follows: participatory literature review, participatory creative workshops, policy review and stakeholder interviews, life story interviews, and a participatory analysis workshop. Results: Eighteen women living with HIV aged over 50 participated in creative workshops and fourteen women in life story interviews. Women’s experiences of ageing with HIV are shaped by intersecting identities, community responses, and personal connections. Ageing with HIV brings challenges, added to and augmented by other difficulties women face in their lives, but women draw on individual and community assets in order to adapt, cope and thrive. Belonging to a community of women living with HIV and a broader community of people living with HIV created a vital space of safety, in which women found support, advice, and meaning. Conclusions: Women ageing with HIV countered the ‘violence of invisibility’ through forming community with other women living with HIV, rejecting stigma, and enacting a personal form of advocacy through care for others.