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Feelings about HIV diagnosis

"There is light at the end of the tunnel, but you have got to live life positively."

Positive attitude

One thing many people told us was how important it was to try to find a way to think more positively to support your health: 'For me, 90% of… getting well, it's in your brains. It's in the mind,' said one man. 'You need a positive state of mind, you need to be optimistic basically,' said another man. 'I think if you have a positive mind, you're determined not to let it get to you and get you ill,' said one woman.

 

Believes that being optimistic can help people to cope with health problems if they arise.

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Age at interview: 52
Sex: Male
Age at diagnosis: 44
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I mean it helps if you're an optimist basically, as opposed to the opposite. I mean, if you're too much prone to sort of giving in too easily and doom and gloom and nothing easily and nothing else is on your horizon, then you're going to have more of a problem with these pills because there will inevitably be days when one of the pills is upsetting you in some way or another. There will be problems with occasional side-effects from them, or indeed some of the HIV symptoms may themselves blow up, and it takes you a little while to get treatment for the individual symptoms, and for these' for the treatment to take effect upon those things. So there's no point being worried, you just have to accept that' 

I mean if you, I mean I occasionally get the KS, the Karposi's sarcomas. I mean there's no point panicking, if one turns up, you just wait until the next time you see the doctors, and then advise them and if there's anything to be done about it, then it's done at that stage.

People found many different ways to shift the way they thought and think more positively. There was no right way of doing it: in the end it is about doing whatever works. One common way of thinking positively was to view HIV as a 'manageable illness'. Many said things like 'Life could be a lot worse,' and 'I really do not think I will die because of HIV.' Some talked about not blaming others for HIV because: 'It's so self-destructive it doesn't result in anything,' and '(I try) not to think of the past, because if I think of the past… you get very depressed and get sick.' 

Another way of thinking positively was through faith: 'What faith teaches you is to stay positive,' said one woman. Being grateful for good fortune was another way of being positive 'I just thank God for relocating me to this country (UK). I am getting medication and everything… People back home (Africa) did not get the opportunity I had. They are already dead.' Some people talked their problems through with other people or joined support groups so they could feel more positive.

Staying positive meant working out how best to relate to the virus. For some people HIV was central to who they were (e.g. those who were ill, those who worked in HIV charities), while other people preferred not to think too much about HIV, or made efforts to avoid hearing about the disease.

 
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He relates to the virus so that he feels he has the upper hand over it.

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Age at interview: 39
Sex: Male
Age at diagnosis: 28
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I have embraced the virus. And I have become friends with the virus. I'm befriending the virus.

What does that mean?

We can live together. The virus can be part of who I am. But it is not going to destroy me. But I can try to destroy it [laughs]. Because I'm great [laughs]. I can do this. Let's share something. I talk to my virus. There are many evenings or nights I would lie in my bed, by myself, with the quietness of this place. And I would literally talk to it. I would visualise that I would get rid of it. Or for every tablet I take, I imagine that the tablet is killing the virus' releasing' if I'm having a pee, if I'm'

So you're peeing out the virus?

I'm peeing the virus (out).

 

He has tried to live like people without HIV and explains why he can't.

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Age at interview: 26
Sex: Male
Age at diagnosis: 17
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Being young at 17 and then going through this huge experience, does impact as you get older your views of relationships and how do you go about it. You know like recently I've wanted to do things perhaps other young people have done and go out and have fun and party. Meet someone, not worry about HIV but' reality is I just can't, you know I can't live a normal life. That's why I say it's not a manageable illness. Because it does place restricting, you know restrictions on the way in which you live or go about... You know you can't, you can't be like your friends. But part of me wouldn't want to be either. But it is extremely difficult and lonely. You know trying to be honest and find someone that's going to be honest with you. Because if I'm going to sleep with somebody then they need to know I have HIV, and that leaves you automatically open and vulnerable and all of that stuff. But, you know it's, it's worth just being yourself, I can't be anything more. But it doesn't always go into my favour and, you know, that can be quite difficult dealing with some people's reactions.

Treatments were frequently so successful that people were only reminded about HIV when they took their daily medication: 'This illness is virtually non-existent to me,' said one man.

 

Because the medication works he can get on with life and not think so much about HIV.

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Age at interview: 41
Sex: Male
Age at diagnosis: 38
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I started to, I, I started to tell myself there was no point in, in unnecessarily getting yourself down and into a, a quagmire of frustration, anger and hopelessness. You know, I know it's, I know it's an incurable illness. I know it, it's a virus that lives in, in the, in your bloodstream. It does reproduce. But I mean the medication I'm taking blocks the action of the reproduction of this virus. Now with that in mind, that's enough for me to be able to live as a normal life as possible. If I do become unexpectedly ill or if my cell count drops to such a low level and the viral load becomes detectable again and descends to a limit that is unacceptable to any member of the medical profession, a specialist, someone who works an HIV treatment, then that would create cause for concern. But until then I'm just going to live as normal life as possible.

There were lots of comments about HIV like: 'I don't bother thinking about it'; 'It's almost like it's not part of my life'; 'I feel more or less like any other person'; 'It doesn't enter my consciousness… It's not that I'm suppressing it'; 'You don't have to go to bed with the virus, wake up with the virus, dine with the virus, shower with the virus.' People were talking about wanting to live as others do and balancing their lives' 'You can't neglect (HIV), but you can't let it dominate your life.' 

Those who felt they were at risk of thinking about HIV too much found ways to distract themselves and 'Pay more attention to other things'. One woman said that looking forward to having her child and then caring for her child was a welcome distraction from thinking about HIV. One man said, 'I go to a little bar down the road here and have a latte and I'll play PacMan… and that's something I can control.' Others found things like doing courses and physical exercise to be a welcome diversion from HIV.

Many people we talked to agreed with those psychologists who say that it is our negative thoughts that create our unhappiness, and that managing or even challenging these thoughts was a way to feel better: 'I try not to let it (HIV) dominate my life or sort of depress me,' said one man. However, having a positive attitude is not as easy as flicking on a light switch. Many people struggled with difficult thoughts and feeling down. For some it was a long, slow road and struggle to be more positive about themselves. People could not always be positive in their thoughts, and when they talked to themselves in negative ways they sometimes got depression. People also said that those with HIV could choose to give up and HIV could become 'an excuse for all the ills in their life.'

 

He has struggled to be positive in mind and be at peace.

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Age at interview: 49
Sex: Male
Age at diagnosis: 28
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Well I still, I still' I use the word positive mental attitude, but I think that my philosophy is I don't' I might sound angry with the system, and angry with society and the way they are treating people with HIV, but I'm not really angry with them. I am part of you know, I am part of that same society. However, I think that I would rather be angry with the virus.

How do you do that?

I have done lots of things over the years, and obviously I have participated in lots of complementary therapies' aromatherapy, massage, Reiki. I have even been to spiritual lessons' spiritual classes. Basically just to find some inner peace if you like. And in some cases' although I use the term positive mental attitude, deep down inside I am actually quite a negative person.

For some people getting on with life in an optimistic way, and doing things that they enjoyed helped them to feel happier e.g. going to the cinema, walking in the park, shopping, doing courses, keeping busy. 'Live life to the fullest. Enjoy it,' said one woman.

 
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The advice she received from a lady in a support group in Africa helped her to remain optimistic...

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Age at interview: 37
Sex: Female
Age at diagnosis: 26
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So when '94 came in I started work' in '95 I moved to a different office and I carried on. Not a word to anybody, I even started doing my own project, I started building my own house. And yet at that time, you would think why should I do it, I am going to die anyway. Everybody thinks that, you have it and you are going to die. As long as you know that you have AIDS the only thing is death. But I said I am not going to die because of what advice that lady was giving me, you are not going to die. But I do need a house, and I got a plot of land and started building a house. I started doing business as I am doing my office and being happy, getting friends and being happy all the time. Party together. But in my mind I know what I am.

 

Even though he lacks the energy to work full time he has found many interesting things he can...

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Age at interview: 39
Sex: Male
Age at diagnosis: 20
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I do get very frustrated that I don't always have the energy to do what I want to do. I haven't been able to work full-time for a few years. Which, again, I find that frustrating. But' I've thought, well, OK, if I can't work full-time I'll do stuff that interests me. So I do independent work as a clinical nurse specialist. I've worked in a' recently in a psychosexual clinic, which was very interesting. I was having hypnotherapy at one point. And I thought, ooh, this could be useful. And at the same point in time my hypnotherapist said to me, 'I think you'd make a good hypnotherapist. Would you like a scholarship? I think I can arrange it.' So I now do hypnotherapy. I'm a qualified hypnotherapist. So the spare time that I've got through not working, I've actually put to fairly good use. I decided' I, I helped to set up a hydrotherapy unit. And I was working in a hydrotherapy unit. And that has now closed, unfortunately. But I decided to formalise the massage experience I got. So I did a massage diploma. So I'm now a qualified masseur as well.

Distraction and denial

Many people said they were not denying they were HIV positive by not thinking about HIV or trying to think positively. They genuinely felt they had 'dealt with it.' But others acknowledged that trying to avoid HIV could mean they skipped over things that were difficult or scary. Not thinking about something can help us to cope by allowing us to fantasise that things are better than they are' A 'kind of lovely denial,' said one man. But equally the things we deny can also make it difficult to cope, such as when we get ill. One man said he 'clung to the fact that it took ten years… to progress from initial infection to AIDS,' but was shocked when he became ill much more quickly than this. One man who tried to be positive that he would not die from AIDS (before the new treatments) got an AIDS diagnosis and then realised he had walked the thin line between 'denial and healthy scepticism,' but was probably more on the denial side.

 

He was shocked that he progressed to Aids so quickly but he found ways to avoid thinking about...

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Age at interview: 38
Sex: Male
Age at diagnosis: 24
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And when I'd seen an HIV consultant for the time he'd said to me looking at your immune profile I wouldn't expect you to get in the least bit sick for five years. And I can remember saying, thinking it's only three years, this is wrong, it's not fair, it's only three years, it's only three years. So anyway, after two weeks I was discharged with TB and you know, which again I thought' I remember these jokes I made about it, I actually made light of it, oh I've got to write a great novel now, I've got consumption you know. And because I was historically minded, you know oh God, you know, as long as I had consumption rather than TB you know. But I thought it was quite a glamorous AIDS defining illness to have, and it was also an AIDS defining illness as well. And that was another' you know it was this kind of thing that I thought that means that I'm' well I know it sounds, again it's, it was such a' it means all my benefits are secure and things like that you know. And there's nothing, you know, my little world is walled off now. It's almost like a trigger for the next set of you know' OK it's got its bad implications but I sort of found these things that could go with it you know'
 

Living now

HIV helped some people to think about the value of the present moment: '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.' That is, people started to think about their quality of life right now. Focusing on 'now' had all sorts of results for people like taking responsibility for their lives, doing things that were good for them, making better choices to look after themselves, feeling more 'alive' and enjoying life: 'If I am going to live now, it has to be really worth living, because it has been really hard work to get to this point.' So for some people focusing on the present moment (including the good and the bad), and trying not to judge or run away from things, was an important way of managing the mind. 

 

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

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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.
 
 
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People need to live life in the present, but responsibly.

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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. 

 

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

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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!

Last reviewed May 2017.

Last updated January 2013.

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