Ageing with HIV: attitudes and experiences of gay men shaped by length of diagnosis

The attitudes of older HIV-positive gay men towards ageing are affected by the period of time since diagnosis with the virus and personal experiences of the epidemic, British research published in the online edition of Culture, Health & Sexuality suggests.

Investigators interviewed ten HIV-positive gay men aged between 52 and 78 about their experiences of ageing.

“The main finding of this exploratory study is an illustration of how the experience of growing older with HIV is influenced by an individual’s biographic relationship with the history of the epidemic,” comment the researchers. “Attitudes to ageing were particularly influenced by (1) the lived experience of HIV on personal health, (2) emotional proximity to AIDS-related bereavements and (3) an individual’s narrative interpretation of the history of the epidemic.”

All ten participants sought to portray themselves as empowered and living well with HIV. However, clear differences in attitude were apparent depending on the era in which individuals were diagnosed with the infection.

Patients who were diagnosed with HIV before the advent of effective therapies in 1996 were generally more ambivalent or fearful about their future. Reliance on state benefits for financial security was a consistent theme for these patients.

In contrast, individuals who were diagnosed after 1996 were generally more optimistic about their futures and occasionally stigmatised the perceived benefit dependency of individuals with longer-term HIV infection.

HIV has traditionally been viewed as a disease that predominately affected younger people. However, the proportion of HIV-positive individuals aged over 50 has been steadily increasing for over a decade. This is due to the remarkable effectiveness of modern HIV therapy and also because of continuing HIV infections and diagnoses in older patients.

Little is known about the experiences of older patients with HIV. Therefore in 2009 investigators conducted interviews with ten HIV-positive gay men aged over 50 who were receiving care at a large HIV outpatient clinic.

The participants were racially diverse and had been living with HIV for between 23 and seven years. Four individuals were diagnosed before effective HIV therapy became available and overall six were receiving disability benefits.

The men were asked: “Please tell me the story of your experience of getting older as a HIV-positive gay man.”

After analysing the stories, the investigators identified two different narratives.

The first were regressive and described considerable disruption caused by HIV and a movement away from cherished life objectives. These narratives often described being trapped by past experiences of HIV, the interruption of careers, reliance on state benefits and the trauma of AIDS-related bereavement. The narratives were also characterised by fear and anxiety about ageing with HIV. Typically, they were told by individuals who were diagnosed before 1996 and/or by those with a strong emotional connection with the early years of the epidemic.

More progressive narratives described an individual’s attainment of objectives. HIV was often characterised as “just a chronic treatable condition.” There was less anxiety about ageing. Individuals diagnosed in the era of effective HIV therapy usually told progressive narratives. These patients had continued to work after their diagnosis and had not experienced the trauma of HIV-related bereavements.

Individuals with greater personal experience of the early epidemic were more likely to express a sense of tiredness and weariness about their life with HIV.

One patient commented: “Oh God, here we go again, it goes on and on, and every day the pills, for ever and ever.”

Another stated: “So how’s it going to get better? It’s not, it’s just not…it feels like I’m going backwards with my health, finances, relationships, with everything.”

Diagnosis in the pre-treatment era was also defined by a struggle to cope with an unexpected old age, as well as a sense of regret and irreconcilable loss.

“I don’t have a circle of friends like I used to,” commented one man. “They all went, all of them. I never replaced them.”

In contrast, an individual diagnosed in 1999 spoke of his awareness of “a group of people who went through the whole HIV thing with the discovery and all the deaths and all the political stuff, and then there’s the post-treatment generation who have a different view and completely different needs.”

Duration of diagnosis also appeared to be associated with the construction of moral identities and attitudes towards “successful ageing.”

Fear and guilt about dependency on state benefits were expressed by some of the individuals with longer-term HIV infection.

“I couldn’t do a full-time job now,” said a patient who was diagnosed in 1989. “And there’s this tension – you’re terrified of losing your Disability Living Allowance – and there is this guilt thing for claiming benefits as well.”

One tearful individual told the investigators: “Everyone makes you feel guilty about everything…and as part of the guilt process you think, well, could I go back to work, am I being pathetic? But [my attempt] last year taught me that, no, I couldn’t.”

In contrast, an individual diagnosed in the treatment era had a highly stigmatising attitude to his HIV-positive peers who were dependent on benefits, describing them as “real victims” and a burden “for the British taxpayer.”

The narratives also showed that some individuals lacked social support and were concerned about their care needs in later life.

“This study provides some insights into the emerging phenomenon of an ageing HIV population,” conclude the investigators. “The findings suggest that future research should include cohorts based on biographic categories such as time since diagnosis rather than chronological age divisions alone.”

Owen G and Catalan J. ‘We never expected this to happen’: narratives of ageing with HIV among gay men living in London, UK. Culture, Health & Sexuality, online edition, doi: 10.1080/13691058.2011.621449, 2011 (click here for the free abstract).