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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.

 

She did not fear death, but did not want to leave her children.

She did not fear death, but did not want to leave her children.

Age at interview: 43
Sex: Female
Age at diagnosis: 42
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I could smell death. I can't describe the smell of it. But it's a smell that you will never understand. Other' You'll ask other people, 'Can you smell that?' And some people will say, 'No, I can't. I can't smell anything.' But I could smell death. And I kept asking my kids and my visitors, 'Am I smelling?' You know, 'Am I smelling?' And they'd say to me, 'No, you're not.' But I could smell it. And I could feel it very close. And I was' I wasn't scared to die. I was scared to leave my children. You know, there's a difference between the two. I wasn't scared of death. I was scared to leave my children. Because I still feel they're too young to get on in life. There are still things I need to teach them about life. You know, the principles. Not teach them about life, anything big, but the principles of life. That your word is your honour, things like that. 

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.

 

Is philosophical about death after surviving with HIV.

Is philosophical about death after surviving with HIV.

Age at interview: 39
Sex: Male
Age at diagnosis: 18
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I just want to go out in a dustbin. Death is not really going to bother me. When your time's up, you time's up with any of us' I've been through one major disaster, which nearly killed me. And I'm not going to' it doesn't bother me now. If I survived that, I can survive anything.

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’).

 

He wants quality of life, not illness and dependency.

He wants quality of life, not illness and dependency.

Age at interview: 48
Sex: Male
Age at diagnosis: 32
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I would not want other people' to rely on other people the whole time. I want quality of life you know, I do not want' it is all about quality of life for me, and if it gets to the stage where I am dependent on so many other people, then I just don't want it. It is not what I want you know. Because I've seen it and I have seen how people' it is just, it gets the person down that is ill, because they are just so' the whole time worrying about' this person has got to come in and do this, and this person has got to wash him, and this person has got to do that. And I just don't want this. You know for me I would just say, 'Oh just give us a jab, help me out.'

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.

 

Was fearful of death when he was first diagnosed with HIV

Was fearful of death when he was first diagnosed with HIV

Age at interview: 35
Sex: Male
Age at diagnosis: 31
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When I was first diagnosed, my brother's father died. And my mum asked me to go to the hall of memory and things with him. And I said, 'Well, basically, can't his son go? It's not my dad. Send our [name]. Our [name] should go, really, if anybody.' And it just freaked me out. Just seeing hospital programmes or anything to do with medical things or' Just really freaked me out. And I started having bad dreams about being buried alive and things. And I just' really freaked me out for about' 6 months this went on for. And then I don't know what, just snapped out of it. I don't even think like that any more. Just don't'

 

His belief in God and eternal life means he feels secure in dying.

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His belief in God and eternal life means he feels secure in dying.

Age at interview: 47
Sex: Male
Age at diagnosis: 41
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If someone who don't believe in God died with me... Because everyone have to die. Just in comparison. I am dying and someone more beside of me. But this person don't believe in God. And me I believe in God. What have we got in the same moment of our death? I've got a promise of eternal life. He hasn't got any promises. So he has worries. He has worries. And he has a bad life. A bad life behind himself. Because he didn't keep the ten commandants. He did wrong things. 

Because I know everyone thinks, I'm a clever man. I can manage with everything. I can cheat this one. I can steal this. I can kill. I can beat. I can hit. No one will know about that. They're' but the person who really believed in that God couldn't do that.

 

He worries about being dead rather than about dying.

He worries about being dead rather than about dying.

Age at interview: 39
Sex: Male
Age at diagnosis: 20
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And I do, I do worry about dying. Actually I don't worry about dying. I worry about being dead.

There's a distinct difference. I suppose being a palliative care specialist, and having watched people die, and having managed the dying process, I know that the process of dying isn't that scary. But it's the unknown thing afterwards. What, what is beyond death?

What do you believe?

I don't know. I honestly don't know [pause] [laughs]. What do I believe? [pause] On the very scienti- scientific sort of level, and this is perhaps clutching at straws, but every thought I take is an electrical impulse. Electrical impulses are energy. Energy cannot be created or destroyed. It just changes form. So fingers crossed, I will just change form.

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?' 

 

When he got better he felt he had wasted time thinking he was worthless and should die. (Read by...

When he got better he felt he had wasted time thinking he was worthless and should die. (Read by...

Age at interview: 34
Sex: Male
Age at diagnosis: 30
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So they prescribe the medication… And they have to do more blood tests to make sure that it's alright. Two other blood tests. So by the third week of February this year I already… I take prescribed medications. I took them home. I, I can't take it. I just, I just want to die. 

I don't want to live with this… remind myself these tablets day after day, my day to day life. I just can't. I, I just couldn't cope. 

So I have to go through another whole process of killing myself. It's always there… I started [the medication] first week of March this year. And 2 weeks after they did the blood tests again. They just check if this medication actually is working for me. 

Surprisingly my CD4 count from 199 has gone to 219. This is 2 weeks after. My viral load from millions dropped to, I think, about hundred eighty. Was very, very quick. And... Oh God. I was so relieved. 

No… As soon as you see, you know, the progress, it made me a bit… quite happier. But I feel I couldn't eat properly. But I'm, I'm religiously taking my medication very carefully every night [sniffs]. Without giving up. A month after, another blood test [pause]. My CD4 count was 2 hundred… 320. This is a month after. 

My viral load's undetectable. It was just a month… If I only knew this medication was going to help me this much, all the years I wasted suffering and trying to kill myself… Try to you know… I'm dirty, I'm this, I'm that. And I think I wasted all these years thinking that I'm, I'm worthless. I didn't realise that it... the medication are this effective.

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.

 

Believes there is too much complacency that anti-HIV drugs will always work and death can be...

Believes there is too much complacency that anti-HIV drugs will always work and death can be...

Age at interview: 52
Sex: Male
Age at diagnosis: 42
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It's being drummed down their throats now that, by their peer groups, by, even by people like myself I suppose that have got different views on it, [pause] they're, they're not going to die. 

They seem to… there seems to be this culture of, 'Well if I get it, the drugs are going to be there and it's just like getting diabetes or something.' And I think a lot of medics actually think that that's the way, that's the way it is, like a chronic disease, you know, it's not just a chronic disease, it's a death sentence. There's no two ways about it. 

And the virus is still mutating itself; it's a very clever thing, you can't argue with this damn thing, once you've got it you've got it. But it keeps mutating and keeps changing and keeps, the doctors have difficulty in keeping up with the medication. So I would say to them, you know, 'Don't be that complacent.' But I think if you're going to teach them you've got to be brutally, brutally honest. I used to think when the Sun had the skull and crossbones on the front page how horrific and awful that was. The gay community said it was an affront to them. No it wasn't, it was the truth. I didn't think that at the time, but I do now.

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.'

 

As a self confessed 'control freak', there was something liberating in facing death.

As a self confessed 'control freak', there was something liberating in facing death.

Age at interview: 37
Sex: Male
Age at diagnosis: 24
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On the other hand, it [facing death] was in some ways liberating again because actually well there's nothing I can do now. There was nothing. I had already taken the medication I had said okay now I'm going to do this because I think it is the right time and it did and I suddenly felt better but then this happened and it was worse. It's like well actually I have no options here now, it is not like I have not taken the medication and I could say do you know, I know its late, this is really last minute to say this, but now I am taking the medication. Too late, you are already taking it.

 

When facing death he comforted himself that an early death was not unusual in human history.

When facing death he comforted himself that an early death was not unusual in human history.

Age at interview: 38
Sex: Male
Age at diagnosis: 24
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Were you afraid?

Yeah, definitely. I mean, well also... an anchor as well, and the anchor of human experience I suppose. And also I was looking for something that provided a structure for the insecurities of life. And that's another thing as well with studying history, was' very aware of how' it was unusual for my generation for me to be very ill in my mid 20s, but it wasn't unusual in the human experience. That only you know' 50 years before they didn't have antibiotics you know. And even, you know I don't' that within my parent's lifetime, there were no antibiotics. Within my parent's, both my parent's lifetime a war was fought which killed significant numbers of people of my age group kind of thing. So it is this sort of thing that you know, we have lived a very unusual' and in sort of human experience, a very unusual' or we've been encouraged and we've developed these set of expectations which have been that illness' that haven't accepted mortality first of all. Which haven't accepted illness' and we have actually grown up with an expectation of health, of happiness and of beauty actually you know. And I mean these all feed into other sort of' I think a lot of people's problems with self esteem as well, things like that you know. But' and it did actually help ground me about that, that how' what I was actually going through wasn't unusual in human experience.

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.'

 

Facing illness and death helped to motivate him to do what he wanted to do in life.

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Facing illness and death helped to motivate him to do what he wanted to do in life.

Age at interview: 26
Sex: Male
Age at diagnosis: 17
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You know very early on I got the brunt of it. I wasn't, yeah I didn't just have many years of good health and lived a normal life and then went onto Uni. It was like, no I was, I had so much HIV in my body it affected all the nerve endings internally, so I wasn't even able to pee. I sat my A level exams with a catheter bag under my jeans and nobody at school knew about it. You know and then being discharged from hospital in order to sit the exams then go straight back to hospital. You know that, it was extremely difficult and when you see what the virus can do to you, physically, emotionally and psychologically you, you're, you're even more aware that OK I need to get cracking. My time is short and you know I need to make the most of what I want to do as quickly as possible. 

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.

 

People in his community expected him to die from Aids even though HIV is not discussed. (Read by...

People in his community expected him to die from Aids even though HIV is not discussed. (Read by...

Age at interview: 63
Sex: Male
Age at diagnosis: 51
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And I don't know, some people have been… a bit patronising you know sort of. You can feel that you know there was a time certain people were ringing up you know. Checking on me, 'Are you all right, are you all right?' You know people become overbearing because you know they have something in mind that this guy is going to die and they were expecting bad news you know. 

And then after some time that it's not going that way they tend to ease off… Yeah they don't contact me as before, you know. Whereas at that time that I was sick certain people were ringing you know, some even twice a day. You know 'Are you OK? Are you eating?'… Without telling me you know… without me telling them that I've got HIV or… But I know that they know, and they're expecting me to pass away quickly or something… 

But since they've found me fairly well now, they don't seem to have that sort of interest or don't show it, yeah so...Yes I think they're confused, and they are scared or… you know Thought that I would pass away, you know that sort of thing. Because a lot of them there was no future as far as they were concerned. It's a question of the time I'm going to die, you know. And some of them I think, the time they expected is well past now. So one or two I was told started talking that, maybe he hasn't got it?

 

It can be hard to maintain friendships when people expect you to die early.

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It can be hard to maintain friendships when people expect you to die early.

Age at interview: 46
Sex: Male
Age at diagnosis: 27
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They might perceive that because you're HIV positive there is no time to' what's the point of investing any effort into getting to know you. Because you're going to die, you know so you still have that to deal with. I remember [name]... that's one thing [name] said to me after [name] died, that she has a great deal of difficulty in dealing with death. And she said, 'You know, I've, I've, I have problems.' She was honest about it, 'In, in that if I don't want to get too close to you, because I can't deal with you dying.' And I must admit, in my last email I sent her I said, 'Went for an MOT today, doc says I've got 30 years... God.' Question mark you know. To say that I'm still around and' That was in '85 so 90, ten years ago, ten years ago, so I'm still here.

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.'

 

Knowing people who are dying from HIV has changed her outlook on life. (Read by an actor.)

Knowing people who are dying from HIV has changed her outlook on life. (Read by an actor.)

Age at interview: 33
Sex: Female
Age at diagnosis: 27
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But people still sometimes are dying, and I've lost more than 10 friends since… more I am sure, up to 15 [from HIV]. Yeah. I mean even just recently someone I know died two weeks ago, not two weeks ago, yeah, I learnt she died two weeks ago, she had died before then. 

In December someone I know died. Before then someone I… this year again, so I'd say between November and now about four people I know have died, no five now, just last week I learnt that someone else died. So, and before then again, it's been like that since the past five years, people I know have passed away. 

People that have been really close to me, it's just that they had complications before they were diagnosed. And then recently it's been heart attacks actually, heart failures, which I feel is to do with people being on protease inhibitors, yeah. 

Yeah so… so now I realise that life is fragile, I might not be here tomorrow, and all that kind of thing. 

So I… so I'm not going to, thinking so much about the future because I might not be here in the future so I'm not worrying so much about the life, I'm living. And being materialistic, thinking I need to work hard to get money so I can get that very big car and have this really nice home. I just feel, my personal happiness is most important, even if I have very little, as long as I'm really happy you know.

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.

 

In facing death and grief he developed deeper connections with people.

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In facing death and grief he developed deeper connections with people.

Age at interview: 48
Sex: Male
Age at diagnosis: 29
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And then they got to the stage where they're no longer there' they just died, you know. You'd go to their funeral, you had' you would have very deep conversations, you'd hardly know' I mean I only knew [name] for about nine months, by the time I'd' Towards the end visiting him in hospital and things, it looked like I've known him all my life. There was that friendship that was, that was there that we'd been through so much together, even though it was only nine months and he was longer there. And then there was somebody else in the group that came along that was, that was positive. And you'd build that relationship up again with somebody else and, for the grace of God, I could go there, you know, I could be the next one.

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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