Participants described a number of challenges of growing
older with HIV. These included uncertainty about the impact of HIV on the
ageing process and anxiety about future care needs. Many participants felt a
sense of loss over disruptions to the lives and social roles that they had
anticipated having in later years. Ageism appeared to exacerbate HIV stigma
(for example, older people not being expected to have a sexually transmitted
infection) and forming romantic partnerships was difficult.

To cope with these challenges, interviewees sought support
from social connections that predated their diagnosis, such as partners,
friends, family, work colleagues and neighbours. However they could only get so
much from this support.

A woman said that while her HIV-negative friends “offered a lot of support” and that “it was helpful being able to speak to them
up to a point, obviously, they don’t quite understand what I’m going through”.
woman, fifties, diagnosed in the past decade]

Another interviewee said that there were “obvious differences” between those who
did and did not have HIV.

“It doesn’t mean
relationships with non-HIV friends are any less strong, because they’re not…
They’re all supportive, but the support from people who are HIV is usually a
little more on the nose, a bit more aligned… If someone’s going through or
has already gone through the same thing as you, then you’re going to attune and
have a better empathy for those people, and vice versa.”
[gay man, fifties,
diagnosed in the past decade]

Living with HIV was described as being so complex and
nuanced that only other people with HIV could fully understand its experience
and impact.

“I think to actually
be able to empathise properly, you need to be in the same boat. It’s very easy
to say ‘Well, you know, it must be difficult to live with it’ or ‘It must be
easy to live with it’; if you aren’t in that situation, then it’s not so easy.”
[gay man, fifties, diagnosed in the past decade]

“That’s the only
answer: having friends in the same situation.”
[white woman, sixties, long-term

Many gay men already had friends living with HIV before
their diagnosis:

“You can’t be a gay
man on the gay scene and not know people that have got HIV.”
[gay man,
fifties, diagnosed in the past decade]

However, access to experientially based support varied
across participant groups, whose communities have different histories with HIV.
White heterosexual participants tended to have limited or no knowledge of HIV
before their diagnosis and felt quite isolated from other people living with
HIV. Black African heterosexuals knew more about HIV (many had lost friends and
family to AIDS in their country of birth), but lived in a community in which
stigma made it hard to talk about HIV and few were open about their HIV status.

As a result, heterosexual participants found it more
difficult to make connections with other people living with HIV. Finding people
who could this support often required knowledge of and access to specific
venues and organisations. For many heterosexual participants, HIV groups were
the first – and often the only – places where they could form supportive
connections with ‘their own’.

Most did not know about support groups, HIV organisations
and specialist websites before their diagnosis. Doctors or nurses at their HIV
clinic played a key role in sharing information about these groups.  

The following two African men explained the benefit of
HIV-specific groups:

“Here, you get a lot
of moral support … White, black, anything, I try to interact with everybody,
because we’re the same status, we’re one family here. We’re the same. You make
friends, which is very important. You sit down, chat – even chatting for one
minute, it’s enough. They’re there for you. I love to come, I don’t want to
miss, and when I do miss, I feel I’m missing something.”
[African man,
fifties, long-term diagnoses]

“Like in a group here
now, you know that everybody coming here, we’re all in the same boat, and you
can talk about it, but on the street, you can’t ask. You can’t just say to
somebody, unless you met them in the clinic. You can’t know. It’s very
difficult to know, very difficult.”
[African man, fifties, diagnosed in the
past decade]

When asked why they attended HIV groups, participants most
often listed ‘emotional support’, ‘practical information’ (e.g. about
disability benefits or immigration applications) and ‘meeting people’, followed
by ‘social activities’ and ‘spending time in a safe space’.

This man contrasted HIV organisations with more generic

“If you have HIV,
there’s a tendency to stay with the HIV community because you know you’re safe
there. Like here, you can talk freely. If I went to my local over-sixties
afternoon tea party, I couldn’t talk about this.”
[gay man, sixties,
diagnosed in the past decade]

Direct contact with others living with HIV showed
participants that they could live healthy and productive lives despite their
age and HIV status. An African woman described stress, loneliness and
homesickness following her HIV diagnosis. A friend introduced her to another
person living with HIV, who took her to support groups.

“I started seeing
people; I said, ‘Oh, we’re in the same boat’. I started feeling relieved; I
said, ‘I thought I was alone, but we are many’. When I saw those people, I
couldn’t believe that they have HIV. I said, ‘Is that person sick?’ I said,
‘Well, if they’re sick, then I’ll be okay’.”
[African woman, sixties,
diagnosed in the past decade]