Thinking about AIDS & death

Many people said they initially believed that being diagnosed with HIV meant death: 'At the point of knowing your status, you think that your life has ended at zero,' said one man. In the past, AIDS did mean death. One man said, 'Everyone followed a similar pattern… this is what is going to happen to me, so all I was doing was to prepare myself for to die.' This has changed dramatically since effective treatments have been available and most people who start ART, particularly if they start before their CD4 count drops to low levels, will have normal or near-normal life expectancies. As people are living longer with HIV there are greater risks of co-morbidities (the effect of all other diseases an individual patient might have other than HIV) and age-related health problems but most people with HIV in the UK will now die with HIV not of HIV.

Thinking about death

People do not always want to think about the potential for illness and death whether from AIDS or any other illness. One man objected to seeing pictures of people ill with HIV when he visited his HIV clinic, and another avoided any TV programmes which dealt with HIV.

Others were more comfortable thinking about illness and death: 'I am very aware of my own mortality,' said one man. A few people who had faced death in their lives said they were not afraid of dying or death. One man said, 'I'm quite ready for it.' Another said, 'I have been surrounded by death really… I'm just not scared of it.' 'When I was ill, it didn't scare me… If it [death] was going to happen, then we would find out sooner or later,' said another.

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In thinking about death, some people believed quality of life was the most important thing: 'It's no good living till you're 70 if the last 20 years of your life you can't do anything.' Some recognised that death could come at any time for anyone for any reason, and so life should be valued.

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But many who said they were not afraid of dying were afraid of suffering and losing their independence: 'I'm not afraid of dying, just dying painfully,' is how one man put it. Some talked about the need for a change in the law on assisted dying or making a 'living will/ Advance Decision' to ensure quality of life is considered if you become very ill and cannot look after yourself (see our section on ‘Information - Advance Decision and Advance Statements’).

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Some admitted they were afraid of dying and death. Gay men sometimes said that before effective treatments for HIV, they had a nagging fear of AIDS and death. One man who was diagnosed at the age of 17 said the 'possibility of a death sentence hanging over me, and then I was rapidly progressing to AIDS, it was just scary as hell.' Many African individuals said there was still much fear of HIV and death in their communities. While some people were not afraid of being dead, others were afraid of what might happen after death.

Some said they would end their life early, rather than be in pain or be unable to look after themselves. Thinking about suicide like this could be comforting, allowing people to feel more in control of their lives. However, one man thought that having HIV was the same as having AIDS, so he wanted to kill himself. Another man who had initially intended to kill himself before he got very ill with AIDS did in fact get ill, but found that he wanted to live and is now well. Yet another man who did attempt suicide because he 'didn't want to live anymore' said he was 'jerked back into reality' when he woke up in hospital. With his loved ones 'in a right state, knowing that you've done it to them' he thought to himself: 'How can you be so selfish?' 

Many people now saw HIV as a 'manageable illness', and so they were not anticipating that they would die early: 'My doctor has told me “you're not going to die of this anymore… You're going to die of a heart attack or be run over in the street”,' said one man. But some people saw HIV as a terminal condition where the virus could shorten their life and so thought they should not be complacent.

Many of those we interviewed who had a HIV diagnosis before 1996 in the UK, and those at risk of being deported to Africa where they may not get medication, had faced the prospect of death. One man admitted he might be a 'control freak' and that facing death was 'the ultimate in powerlessness.' He wanted to feel like he still had some choice and so he decided: 'I can choose how I react to it [death].' So he asked himself: 'How am I going to die today?' Another man feared death and so turned to religion, spent time 'sitting in churches' and retreated into 'childhood comforts.'

People facing death discover certain needs and desires. One man wanted to make sure that all his loved ones were around him when he died, although he did not want to be 'fussed over'. Another man who had not told his family about his HIV went home and 'spent months there basically saying goodbye to them… in silence.'

Death is often a taboo topic and other people 'don't want to talk about it' so their reactions to HIV or HIV related illness can be unhelpful.

Loss and grief

Those who were old enough to have partners and friends with AIDS before effective treatments arrived in the UK - mainly the gay men we talked to - had seen many people dying around them: 'It was appalling carnage,' said one man. A former health professional said, 'There were gay men dying all over the place. It was horrific. Every day I'd go to work and at least two or three patients would die. Their average age would be about 25 or 26… I did used to come home, and I did used to cry.' And people from Africa emphasised that the HIV crisis is still extreme in their countries. People back home were still dying in large numbers, and this added to the enormous fear of HIV in African communities: 'If I go back home, most of my… let's say my age group, they have already died.'

A few people we talked to - including gay men born in the UK and individuals from Africa - had witnessed most of their friendship networks die from AIDS. One man said it was like enduring the loss of life on the scale of a war. There was also a great deal of sadness that so many people missed out on - or in the case of Africa are still missing out on - effective treatments.

People deal with grief in different ways. It was particularly difficult for people to grieve losses if they knew many people who had died from AIDS. But people did find ways of managing grief. One man decided to change the way he saw the death of people: 'I don't get sad…. I celebrate their life.' Another man found that he actually drew strength from the death of his partner.

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Facing death involves loss for the person who is dying, not just their loved ones. One man preparing for death said he had a great sense of loss when he realised that he and his partner had so little time left. There is no getting away from the reality that grief is difficult for people to cope with. One former health professional said: 'I did eventually get a bit burnt out… numbed by it all.' Another said, 'You didn't deal with it, you stuck it in a little box and buried it.'

And yet the stories told to us show that facing death and loss can also concentrate the mind on the value of life. Some people who faced death and thought they would die talked about discovering their 'will to live' and 'battling to live'' 'I got bored of waiting to die… Something triggered in me that I actually, I want to live my life,' said one man. 'I fight for life. And I am always going to do it,' said another man. 'And I started to go on courses, and lived a life that I really, I'd never thought about before,' said another person.

Last reviewed May 2017.

Last updated May 2017.


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