Older people living with HIV describe a range of strategies
to maintain or improve their mental health and emotional wellbeing, according
to an English study published in AIDS Care.
Many people said they shifted the focus of their attention away from HIV to
other aspects of their lives. Getting support from external agencies and from
other people living with HIV was also extremely important for many.
Dana Rosenfeld and colleagues conducted in-depth interviews
with 76 people living with HIV for the HIV
and Later Life (HALL) study. Participants were asked to describe their
typical day, personal and medical histories, social relations, social support,
and discuss living and ageing with HIV.
While all participants were over the age of 50 and the
oldest was aged 87, half were in their early or mid-fifties and half had been
living with HIV for ten years or less. Reflecting the largest groups in the UK
epidemic, participants were a mix of white gay men, black African heterosexual
men and women, and white heterosexual men and women.
Over half lived alone, half were not in paid work and half
had an annual income of less than £10,400.
Participants often put their concerns in perspective by
comparing their health with that of other people. For example, this man
compared ageing with HIV with ‘normal ageing’:
“For a lot of older
people, life’s a severe challenge anyway… there are plenty of other severely
challenging conditions.” [gay man, fifties, diagnosed in the past decade]
Other comparisons were with specific people. This man viewed
his own health through the lens of a life-long friend’s “terrible problems with his joints”. When he last saw his friend,
he thought “I’m HIV, but look at him,
he’s worse than me”. [gay man, fifties, diagnosed in the past decade]
For several participants, volunteering provided a focus,
purpose, and opportunities to make a social contribution.
“As a survivor who was
helped by my consultant, nurses, relatives, friends, I felt if they did that to
me, why can’t I do it to others? … You can’t just receive and then you don’t
give away”. [African woman, fifties, diagnosed in the past decade]
Interviewees said that volunteering helped keep them active,
both physically and mentally. Several emphasised the value of leaving the house,
shifting the focus from their own circumstances to the wider world. This man started
volunteering at an HIV organization when he realised:
“I can’t stay at home
not doing anything… if I stay at home, that could lead to depression for me,
just sitting down”. [African man, fifties, diagnosed in the past decade]
Many interviewees made a point of taking note of and
focussing on positive aspects of their lives – for example, actively valuing
and pursuing relationships and activities that improved wellbeing. While some spoke
about the importance of friends or partners, others described simple pleasures:
“New things, little
things, just going down to the river and having a walk.” [gay man, fifties,
One man explained his philosophy:
“Live in the moment;
enjoy what you’ve got; accept what you’ve got, accept what your life is”. [gay
man, fifties, diagnosed in the past decade]
Although the challenges and disruptive impact of HIV is
often emphasised, some interviewees actively valued their ability to maintain
their previous activities, identities, and roles.
“I can still function,
I can think, I can create, I can take photos, I can go out for dinner, I can
cook dinner – I can do what normal, or non-HIV people, do. We, apart from
pills, are non-HIV people”. [gay man, sixties, diagnosed in the past decade]
While recognising the benefits and necessity of HIV
treatment, some participants found their daily medication a painful reminder of
living with HIV. They took steps to ensure that their pills took on benign
meanings, were embedded into daily routines or became part of the background.
“[I take] the pills
like I do cholesterol pills. I don’t say, ‘Oh, those are the pills of HIV’, or
‘Look, every morning I’m HIV’”. [gay man, sixties, diagnosed in the past
As well as shifting their focus away from HIV and their own
concerns, many participants spoke about the benefit of the support they got from
their HIV clinicians and from mental health services.
“My HIV brought me
depression. Psychiatric, it helps. Now I’m okay. You become cool, they give you
medication, you become all right, they advise you what to do.” [African
woman, fifties, long-term diagnosed]
Many people sought therapies to supplement support from
partners, friends or family.
“I’m a bit mixed up
and sometimes I just find it useful talking to a third person who is completely
removed from my personal life; who isn’t trying to go, no of course you’ll be
all right, because they’re my friend or my family.” [gay man, fifties,
For most participants, HIV organisations and support groups improved
their wellbeing by providing practical help and guidance regarding benefits, adherence,
disclosure and other issues. HIV-specific support also provided connections to
other people living with HIV which countered participants’ isolation and
distress, especially in the period immediately following their diagnosis.
“I’m not totally isolated
because I’m connected to HIV people, HIV groups… The fundamental connection
from one human being to another is absolutely imperative to being alive and
feeling alive, and pursuing or finding happiness.” [white woman, sixties,
diagnosed in the past decade]
There were a few interviewees who chose to avoid HIV groups
because they wanted to minimise HIV’s role in their lives. They may have found
groups helpful for a period after diagnosis but did not want to endlessly focus
on the issue.
“The less you talk
about it, the less you think about it.” [white man, sixties, diagnosed in
the past decade]
However, the benefits of support from other people living
with HIV was such an important theme in the interviews that the researchers
described it more fully in another journal article. We have reported on it in another article on aidsmap.com.