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HIV

HIV and thinking about the future

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.'

 

Living with a life threatening illness helped him to focus 'on the present' and what he needed to...

Living with a life threatening illness helped him to focus 'on the present' and what he needed to...

Age at interview: 37
Sex: Male
Age at diagnosis: 24
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And then when I got the (Aids) diagnosis I thought okay I have spent these last three years learning how to live with something that is life threatening. And how to have a good life and I had, I had a fantastic, you know they had been the best three years of my life ironically. 

And why was that?

Because I lived I was so present in my life.

What do you mean by present?

Well when I was at college, and I was drinking and clubbing and having fantastic fun, the focus of my attention was going out getting drunk and dancing all night. That was where my attention was' Secondary to that was trying to get a bit of study done so that I could finish my degree. No concept about what I was going to do with that, or why I was really doing it, because it was just what was done. College was what you did after you finished school for me. Whereas once I'd stopped drinking, and I'd made a few decisions when I've stopped drinking that all of the money I used to spend on my cigarettes and on my drink would be put towards things that I wanted for myself, whether it was holidays, theatre, opera, cinema, galleries anything that inspired me and made me feel good and enriched my life. That was what all of that money was going to do for me now. And that is how I lived my life, on a daily basis that you know everything was for my advancement, everything was for my enrichment, that really you know' if I was going to have a good quality of life for what ever time I had, it had to be done there and then. And you know I can recommend it as the best way to live, with responsibility, not thinking that this could be the last day I live, but to think of well if it was, how would I want today to be for me. I would want to be productive, I would want it to be enriching, I would want it to be happy. So what is the point in living through a crappy day that gives you nothing, that only gives nothing to anybody. There is no point in that' it is a waste.
 
 

Talks about how people need to live life in the present, but responsibly.

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Talks about how people need to live life in the present, but responsibly.

Age at interview: 46
Sex: Male
Age at diagnosis: 27
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(It's about) enjoying the moment now as opposed to thinking well, if I work hard until I retire and then I'm going to have some fun, right. It's a case of do the things you want to do now. Because you don't know what's going to befall you whether it is another disease, being HIV positive is no protection from acquiring another disease. 

Being HIV positive is no protection from being, being involved in a car crash or being in a fire or whatever. You don't know how long you've got so, you've got to say' live life for the moment (but not) to hell with the future, because you've still got to plan for the future. As we did in the early days saying, max your credit cards and enjoy yourself because when you're dead you've got nothing and they can't take it away from you. I remember one consultant was saying to one particular guy, you've got six months, and so he had a fantastic time, thoroughly enjoyed himself, maxed his credit cards, and of course two and a half years later, he's still alive. With a big debt that had to be dealt with. 

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.

 

Talks about how people can focus on - and enjoy - the present moment.

Talks about how people can focus on - and enjoy - the present moment.

Age at interview: 57
Sex: Male
Age at diagnosis: 39
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If you're so busy wondering about the next pair of new shoes, well, enjoy the ones you're wearing now. Yes by all means think about who you are going to send Christmas cards to. Or who you are not going to send Christmas cards to. But only actually worry about it when you're doing the writing. Plan next January's holiday by all means. But enjoy the planning, because now is the time you're doing it. The holiday might never arrive!

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'.

 

Hopes a cure for HIV could help him with his current health problems.

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Hopes a cure for HIV could help him with his current health problems.

Age at interview: 63
Sex: Male
Age at diagnosis: 51
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My hope for the future is… if I could regain my hope for the future, it's to get my sight normal, so that I can do what I want to. Because it's depriving me, not only my… my eyes. I need, I need to get my voice back because they may… I don't know whether it is a side effect of the medications I'm taking, I've lost my voice. And I'm not singing well, I used to be a very good singer. I used to write very well but if I write now you would think I was just somebody, who was just beginning school. I cannot write, my hand shakes a lot. 

So if I can get treatment to get my hands OK, nothing will stop me from being what I want to do. In fact the sky would be my limit because I am a very prospective somebody. If I want to do things, yeah, I do what I want to do, you know... But my health, the HIV is costing me a lot, to me. Now they are saying that unless a cure of HIV comes, I am not… I've tried to visit most, you know health organisations or establishments. And they come to tell me that the, the, the solution to my problem… my eyes my brain or whatever, is the cure for HIV. That's what they say now, until that comes… But I don't even know whether that could come and then my problem will still be there. So if they could do anything possible to… so we have this thing as soon as possible... I mean everybody would be happy and this problem would go away.

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.

 

Believes that the high level of service he gets from the NHS will not last.

Believes that the high level of service he gets from the NHS will not last.

Age at interview: 38
Sex: Male
Age at diagnosis: 24
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I mean I think one thing that strikes me is how good my services are, HIV services, HIV medical services. I mean I don't use' and very rarely use any of the other services that went along with it. And they are very good, I mean contrast it to the chronic, other chronic disease areas, like my parents have both got heart disease and just like' they treat you a load of rubbish you know, because the services just can't cope. And, but on a' I've never had to wait more than half an hour or so for' I mean two hours once because they lost my notes and they didn't know I was there. But you know, I'm seen very promptly, I've always had an appointment available, I've got the latest drugs, you know, everything met to my needs. And I just don't think that that's going to be sustainable, that' you know, the number of people with HIV in this country is rising exponentially and that's not a failure of prevention campaigns actually. I think it's how remarkable how steady the number of infections in this country is you know. And who's going to pay for it? It's going to become an issue sooner or later that so much money is spent on anti HIV drugs, it really, really is.

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'.

 

How he thought about his future when first diagnosed.

How he thought about his future when first diagnosed.

Age at interview: 41
Sex: Male
Age at diagnosis: 38
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One of the things I thought' that first occurred to me straight away was that, that I'm going to spend probably the rest of my life going into hospitals, you know? And because I'd already heard of stories of people who are infected with the virus and, and the exper-' you know like the sort of lives that they were leading and, and, you know, the sort of problems that they were having with it. So I could only expect that the same thing was going to happen to me. At first I wasn't too' It hadn't hit me straight away' What I'm trying to say is that it, it took a, a, 2, a couple, a few weeks for it to sink in.
 
 

How HIV has changed the way he understands and manages his time.

How HIV has changed the way he understands and manages his time.

Age at interview: 41
Sex: Male
Age at diagnosis: 34
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I guess HIV's made me more aware of time. Every minute of the day is mine and how I choose to spend it is mine. It makes you a little selfish. I don't waste my time or if I do waste my time it's because I have chosen to waste my time. But it's like if I make an appointment with somebody to do something at sort of ten o clock and they don't turn up until eleven, then I'm really annoyed because they've wasted an hour of my time. And I consider my time precious because it's limited you know. So, like if I chose to waste an hour, that's my decision, I've consciously decided that I'm going to do nothing for the day or whatever but' I sort of pretty much only do what I want to do really. You know, if I spend time with you it's because I want to spend time with you. It's not because I feel I have to or whatever, because again, it's my time and it's limited.

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 out-living 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 40s, and so things like finding someone for a relationship could be difficult. Others talked about 'mid-life 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.' 

 

What it was like to end a relationship and go through a 'mid-life crisis'.

What it was like to end a relationship and go through a 'mid-life crisis'.

Age at interview: 48
Sex: Male
Age at diagnosis: 32
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So it was difficult adjusting. I went through a very bad time. I got very depressed, because a second relationship of 10 years' the first one died, the second one I decided' [name of partner] yeah, that was enough. And you know it was the right decision, we shouldn't be together, but we are best friends now. It was just at the time it was very difficult. I was you know 44 or something 43, 44. I am thinking oh no I just don't want to go through this whole scene of going to the bars and trying to meet people and all of this. And you know I just thought a bit of a mid life crisis, it was a very strange time for me. And you know health wise I am thinking well what have I got to do, here I am, I'm you know I am not working. I'm you know feeling better now with the medication. I don't know you know, it has its benefits in one way, but I couldn't go back and do the [type of work] work.

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.

 

He does not know anymore what it means to feel physically or mentally normal.

He does not know anymore what it means to feel physically or mentally normal.

Age at interview: 39
Sex: Male
Age at diagnosis: 20
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I mean one, one of the things that I was talking about with' to somebody recently, and this is very pertinent. You get to a stage' Certainly I've got to the' this stage. And my friend has got to this stage. And my friend is a, a consultant psychiatrist. Where you don't know what is normal. You don't know how you should be feeling. I, I have no idea what I should feel like at 40 years old, without hepatitis, without HIV. I have no idea. I've forgotten what normal nerve function feels like' I, I will know if it gets worse, or if it, if it changes. But I don't know what it feels to, to feel normal' Either physically or psychologically.

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 40s 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.'

Last reviewed May 2017.

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