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
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
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
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
“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
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
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.”