One third of participants were diagnosed before effective
treatment became available in 1996. Their experiences were very different to those
who were diagnosed later. People diagnosed earlier were more likely to be
dependent on benefits, to have no employment and to have three or more
additional health conditions. Their experiences in the 1980s and 1990s still
marked them, as this man explained:
“Back then when they
told me, they told me I had a maximum of five years to live, they were quite
blatant about it. So that was the thing that stuck in my mind “FIVE YEARS”. I
didn’t really care about anything for a while, I didn’t care about what people
thought, about what my life could be, those five years were always there in the
back of my mind. But even though I’m still here now, those five years have
never left me ... in that respect the damage has been done from that early
diagnosis.” (Male, 52, white British, gay, diagnosed in 1985).
Another key divide in experience related to age groups.
People of working age, between 50 and 60, tended to express much more anxiety
about finding or keeping employment and benefits. In contrast, participants
over the age of 65 tended to be happier.
Over a third of those in the younger age group were reliant
on benefits. Many described breaks in their career history, due to ill-health
or earlier beliefs about their prognosis. They had often been out of the job
market for several years and would find it difficult to compete against younger
people for jobs. Those in work expressed concern about what would happen if
they were no longer able to do their current work.
Women often expressed concerns about being able to care for
“I just worry about
providing for my children, that I can’t earn enough money, that I will get too
sick to work. I worry about my health and money a lot.” (Female, 52, black
African, heterosexual, diagnosed in 2016)
People aged 50 to 60 had many unanswered questions about what
the future holds – financially, health-wise and socially. They expressed more
concerns than their older peers aged 65+ about how they would be able to care
for themselves or manage multiple health conditions.
“I think it’s how this
illness is affecting us long-term. It damages your organs … those things I
worry about. Is that the illness or the medication for the illness? Both, I
think … growing old worries me. I wonder how it is going to affect me. What
kind of illnesses and diseases will I get from it?” (Female, 51, white
British, heterosexual, diagnosed in 2015).
Those in the older group expressed fewer concerns:
“I think I’ve just
reached a point in my life now where I’m settled in myself, what will be will
be ... you expect to get ill when you get old so that doesn’t really bother me.
You stop caring what people think I suppose.” (Male, 73, white British,
bisexual, diagnosed in 2012).
“I used to worry all
the time, but now I just think be grateful for what you have. I was so ill I
was at death’s door, but I’m still here, that’s something to be happy about …
my children do the worrying for me.” (Female, 78, white British,
heterosexual, diagnosed in 1996).
Moreover, the survey data suggested that those aged over 65
were more likely to rate their wellbeing as good or very good (77%, compared
to 34% of the younger age group). They were less likely to experience
self-stigma in relation to HIV or to their age, than the younger age group.
They were half as likely to be concerned about finding or keeping a partner.