Living now

Having HIV helped people to think about the value of life now: “Once you realise your mortality, then that focuses your life to do things that you want to do, as opposed to doing things to survive.”

In other words, people started to think about their present quality of life. Focusing on ‘now’ had all sorts of implications for people. These included taking responsibility for their lives, doing things that were good for them, making choices to look after themselves and enjoying life: “So don’t dwell on the future, live in the present, enjoy it and act responsibly so that the future will hold better things for you,” was how one person saw it. Another said, “The future depends on how I live today.” One man was firm: “Forget the future. I don’t know what is going to happen in the future.”

So focusing on the present moment, including the good and the bad, and not running away from it was an important way of managing the future for some. Some even thought having HIV had the advantage of helping “you know what you want” in life.

The future

While some concentrated on the present moment, others focused on hopes of what the future might be like. For instance many hoped for a cure: “I think my dream would be that there’s a cure for HIV. And I see the future as very much as I did really before my diagnosis, tempered with the knowledge that I have HIV.”

Many people talked about how they now expected, or wanted, to live “as normal a life as possible”, much like people who do not have HIV. Medication was seen as the key to a normal future: “I don’t expect HIV is going to kill me,” said many. Although some feared that HIV could “rear its ugly head.” People with this outlook planned for the future, including paying into pension plans.

Anxieties

Despite the success of anti-HIV drugs, a number of people said they lived with anxieties about the future: “You don’t know when something’s going to strike you.” Even people who were doing very well could worry about their health: “I am scared of what is going to happen tomorrow, rather than what is going to happen in 10 years’ time,” said one man. Poverty and social changes were also feared. For instance, one man thought, “There seems to be this attack on people that are sick.” Others worried about healthcare in the future.

Some people imagined their future would involve a series of illnesses and hospitalisations. Some were already ill, and saw the future as more of the same. One man who had had difficulties with side effects imagined more problems in the future since “all of the medications are toxic.” Some also felt that HIV would curtail their life. One man said, “I want my life to be good rather than live for another 10 years.”

Survival

When people are first diagnosed, many times their first thought is that they will die early. People had to adjust to the situation after 1996 where anti-HIV drugs now prolong life. Those who had become ill with AIDS were particularly concerned about dying, yet they had recovered with medication. Still, some of these people felt their health was not 100%: “I am not superman, I cannot do all those things that I think I could be doing.”

It has been difficult for many people because the goalposts were shifting. One man who was originally told he had 2 years to live, many years before effective treatments were introduced, said he wasted time waiting to die, “I still am waiting for this two-year period, in a way. I should be thinking about the maintenance of life rather than the fact that I am going to die from this.”

Because of anti-HIV drugs and long-term survival (see below) people faced life all over again after facing death. The significance of this change cannot be over-stated: “It’s like watching these films about people that live forever. Because I’ve basically just kept going while I’ve watched everyone else die.” People experienced grief losing friends to AIDS: “People leaving you and never being able to get used to it” as one man put it. “I just got sick of listening to Bette Midler at funerals,” was another man’s view. Some said their circle of friends shrank with age, and they had to put more effort into making friends, since building friendships got harder with age. As well as grief there was fear: “I’m going to live for considerably longer which is incredibly scary.” “What the hell do I do with my life now?” said another. Those who thought they would die are now deciding what to do with their lives, such as whether to stay on benefits or go back to work.

Some people have survived well for 20 years even without medication, and this raised questions about why: “Why am I alive? I am constantly asking those questions,” said one man. Some thought they were alive because of their personality or approach to life. One man who had the attitude ‘HIV doesn’t have to beat me’ talked about friends of his who, “were diagnosed and they thought ‘oh well, that is it’ and they gave up, laid down and they died.” Others thought long-term survival had something to do with having a weaker strain of HIV or good genes. Even though people linked getting unwell with stress, some long-term survivors pointed out that they were stressed too: “I’ve been stressed for 40 years,” said one survivor who had never used medication. As well as feeling fortunate, some survivors talked about coping with guilt for outliving others: “I can’t live the rest of my life with guilt,” said one man.

Getting older

Some gay men noted that they were considered old on the ‘gay scene’ as they moved into their forties, and so things like finding someone for a relationship could be difficult. Others talked about ‘midlife crisis’ and the changes in attitude that can bring. Some people felt their personalities were changing with age: “In 1984 I was probably quite militant. But nowadays I just want a cup of tea.”

A few people suspected that their health, physical or mental, was deteriorating because of age or HIV, although it was difficult for them to say what was due to age and what was due to HIV. Some said it was harder to cope with illness as they got older.

A number of people were uncertain about what they would do as they got older: “As far as the future is concerned I can’t see one, particularly. Nothing sort of planned.” But there were others who felt they were “starting a new chapter” as they got older. One woman in her forties said life was beginning for her. And those older people who remained interested and active in life said they were enjoying life and making new friends: “I love retirement. I’ve got lots of interests, in the arts and the garden, in the house, and friends too.”