There are an estimated 101,000 people living with HIV in the UK, 31% of whom are women. Yet women living with HIV are frequently invisible, their specific needs, experiences and challenges unrecognised, and their voices unheard. The public narrative around HIV often centres on gay men, and women are left behind. This creates the experience of being a 'minority within a minority', a phrase I've heard frequently during my PhD research, exploring the experiences of women ageing with HIV in London. For older women with HIV, the sense of being invisible and unheard is significant. As we mark International Women's Day, these voices deserve to be heard.
My research is a three year project, exploring what it is like to be an older women with HIV, how the social and physical experiences of ageing are affected by HIV, and what support exists or is needed to enable older women living with HIV to age well.
As part of the research I held three workshops, for 18 women aged over 50 living with HIV, to explore their views about ageing and HIV. You can read a full summary of the findings from those workshops here. Overall, many women reported significant feelings of loneliness and isolation. In many cases, the experience of (or worries about experiencing) stigma and discriminatory treatment due to their HIV status created a barrier to finding support, from family, friends or formal services. For these women, HIV support services become a lifeline, offering safe, non-judgmental support and a chance to meet and socialise with other people living with HIV. Yet many women attending the workshops reported significant cuts to services that made it difficult for them to access them.
Stigma is rooted in poor knowledge about HIV among the general public and even in health and social care settings, that feeds discrimination, and creates particular worry for older women around accessing care as they get older:
I always think of the time when I'll start losing my senses, not being able to do things for myself, that alone kills me... I don't want to get to that age where someone will have to give me my medication... I mean because of the stigma. [Workshop participant]
Overall, the experience of ageing with HIV for the women in this study is characterised by uncertainty. The impact of HIV itself, and of HIV treatment, on the ageing process and on the body in the long-term are not fully understood, and the physical and social challenges associated with ageing with HIV are also emerging as the population of older people with HIV grows. For people living with HIV, this creates significant uncertainty:
I think the answer is we don't know because we are sort of the first generation that are going to reach older age ... we may have to go back to being strong and fighting our corner again, you know, because, especially at the moment with the cutbacks left, right and centre... [Workshop participant]
There is a huge need for visibility, for research that addresses the uncertainty around ageing with HIV, and advocacy to demand the services, support and resources to ensure the rights and needs of older women with HIV are upheld. This International Women's Day, let's remember all the hidden minorities.
This article first appeared in the newsletter of Sophia Forum, the only UK charity solely focused on promoting the rights of women living with HIV.
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