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HIV

Learning to accept HIV

'Now I have a new life... I feel more happy and I feel more strong.'

Acceptance

A number of people thought that coming to accept their diagnosis and the fact that nothing could be done to change the fact that HIV was in their body was an important step towards gaining power. In a similar way, many people concluded that blaming someone else for their diagnosis was pointless and only ended up hurting themselves emotionally.

 

Explains why it is that people must accept their HIV.

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Age at interview: 39
Sex: Male
Age at diagnosis: 18
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But I think it's just the fact that you need to realise, no one's out there with an easy fix. And you've got to realise that life is worth living. You can't just go through life with a complete chip on your shoulder or a downer or something saying to you that, 'Oh why's this happened to me?' It's happened. Get on with it. It's happened, you've got to live with it. There's nothing in this world is going to change it.

Gaining power

Gaining power is about increasing your confidence and strength to get things done. Clearly, one of the major breakthroughs in increasing people's confidence is the way treatments improve health. Feeling physically stronger was linked to feeling mentally stronger. It was difficult for people to feel positive and strong when ill' 'As soon as I got ill, that was where I opted out,' said one man. Some people undertook physical training programs after illness to improve their health and confidence (see 'Holistic health').

Some of the people we talked to were frequently struggling with pressing life difficulties like poverty, housing and some people from a Black African background were also dealing with immigration issues (see 'Dealing with difficulties, finances and benefits'), and so sorting out these problems was a key to their gaining power. People often turned to professionals (e.g. social workers), community organisations, religion and support groups for help (e.g. see 'Dealing with difficulties, finances and benefits', 'Spirituality and religion'). White gay men were generally (but not always) financially better off than Africans. Gay men tended to focus more on individual issues like personal development, making the right choices, becoming experts in their condition, being assertive about their needs and gaining support (see 'Becoming informed').

 

Links her gaining power to a favourable immigration decision. (Read by an actor.)

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Age at interview: 43
Sex: Female
Age at diagnosis: 39
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I was always panicking of this immigration thing, that I will be deported if I go back home. What am I going to do? My relatives back home, they are old and the situation back home, it's very, very depressing now. What am I going to do if I am deported? And fortunately I was given discretional leave to remain. That was leave to rem… that was three years to remain in the country. 

And from that time, I start developing more… I, I start being energetic. My, my stress was going down a bit now, because I said, 'Oh, really the, the government is dealing with my case.' 

If they give me this discretional leave to remain, my daughter will have more time to go to school, because she is interested with schooling, so if she, if I am deported back home how is she going to go back to school? Where will I go, where will I go and get the money? Where will I go and live? 

Because all people back home they are told that I am HIV positive, and how my future is going to be like? And I start getting more… I start getting more power. And my, I was self extended really, because I was empowered when I get the discretional leave to remain.

While getting support was important for everyone, the stories people told showed that some things we do in life we largely do alone (e.g. getting motivated to get out of bed, grieving for our losses, facing death). One man said, 'You don't need to be alone. But you have to fight alone most of the time.' As such, people talked about needing inner 'strength', a positive attitude (see 'Dealing with your thoughts') and a 'fighting spirit' to get on with life. But people also said they didn't always feel like fighting. And this meant they needed willpower and hope at these times: 'You've got to get up in the morning and think you've got to get up basically. You can't just lay there. You've got to get on with life. Because otherwise life is just not going to be worth living.' Breaking down big problems into small steps that could be tackled 'one at a time' could be helpful.

 

Explains that when things seem terrible things do tend to get better.

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Age at interview: 35
Sex: Male
Age at diagnosis: 31
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And we all need a bit of sympathy sometimes. But I'm not the most sympathetic of people, me. I just go, 'Just fucking snap out of it' [laughs]. Do you know what I mean? You know. That's all I can say, really, is keep going. It might seem terrible now, but in a year's time you might' well, you will, you'll think differently. Because time's a great healer. And you come to terms with things within yourself even, you know, even' It all just works itself out in the end, I think' 

So you can change even it you don't think you can or you think your'?

I never thought I'd snap out of it' the position my head was in a year ago, I'd never thought I'd ever snap out of that. I thought that was it. It was all doom and gloom and it was all down hill from then, but sometimes you have to hit the bottom to go up

And you can only go up when you hit the bottom. Only' The only way up' The only way to go is up. You know. And sometimes when you have nothing, you have the freedom to do anything.

There was something important about overcoming earlier life difficulties that was linked to being strong now: 'I was never prepared to be a victim. When I was in school, I was victimised. But I didn't like being in that position, and as an adult, I was not prepared to be in that position,' said one man. Another who said, 'I enjoy being strong', talked about how his early strength developed.

 
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Talks about what it is like to get your life back on the new HIV treatments after facing death.

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Age at interview: 37
Sex: Male
Age at diagnosis: 24
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What threw me almost as much as having the choice taken away. When I was in hospital, was the sudden realisation that actually, I am going to have to live a life again, and I don't know what I am going to do with it. And that was terrifying' Certainly for the 6 months before I did anything, when I was just recovering from illness, I was thinking, what am I going to do here, you know what what can I do with my life? Am I well enough to' To do anything. Should I go to work? All of those fears about if I start to work will it make me ill again like it did before. I don't know it was really scary. It's one thing to slowly accept that actually my life is being taken away from me, and I have no control over it really, all I can do is choose how I feel about it. But then to have that all given back to you' completely let go of it in the end. And then to have this happen for you to be told, actually now you are going to live, and now you have got to decide what you are going to do with your life. That is one the only way I can think of it. I have been doing my best not to swear, but it is one hell of a mind fuck!

Many people told us of living by the motto 'What does not kill you makes you stronger.' Indeed, people showed they could endure considerable suffering and problems, and still survive.

 

He became empowered following a HIV diagnosis that was difficult to cope with at such a young age.

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Age at interview: 26
Sex: Male
Age at diagnosis: 17
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I can't go back in time, you know and put right what went wrong and to stop the virus. But the only thing that' the only thing that made it easier for me to regain my confidence and move on from this diagnosis at a young age was realising that you know I, I have the power to kind of deal with it. Talk about it, you know get help, you know access the agencies and do something about it. Because I couldn't change that I had HIV. I couldn't take a magic pill and it'd be gone. But you know by confronting it and dealing with the fact that I, that, there are real political, financial issues that come with being positive and that a lot of people are not educated about you know what's it really like living with the disease. That, that was how I slowly got, you know got my power back and found more, you know more happier, and realised that I could do something really good you know with this. And it not be this destructive, bad, evil, thing around me, like a cloud that used to hang, hover over me at a young age. It was actually seeing that I could turn it around to my own advantage. Instead of letting it beat me, it made me stronger, it built me up and I think that's the right attitude that you have to have no matter what you cope with in life.

As one man said, 'I'm just resilient. You know, I've had to fend for myself since I was a kid.' Only one person said that having HIV weakens rather than strengthens you as a person.

People can surprise themselves and others with the strength they have to get through difficulties. One man who became very ill with HIV said, 'I shouldn't be doing this (physical exercise). Everything that I was told, I shouldn't be capable of doing this, but I am.' Another man (whose partner thought was the weaker of the two) said that you don't really know your own ability to cope with something until you are in the situation.

 

He found he had the strength to deal with life difficulties like the death of his partner.

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Age at interview: 48
Sex: Male
Age at diagnosis: 32
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(My partner) said something very strange to me that it is going to sound wrong. He wished it was me that was in his place, and not the other way around. But what he meant was that he wanted to look after me because he felt that he was the stronger of the two characters, and he wanted to look after me if somebody was sick, not that he wanted me to be sick you know' but as it turns out I have always dealt with everything that has been put in front of me, although I give the impression' because I am a bit theatrical' flighty' that I am not going to cope with something. But I always do you know, and always have you know. In actual fact, probably better than some of the people you think that are going to cope you know. Until you are in that situation you just don't know.

At various times though people wanted to give up: It was 'hard to fight all the time.' While giving up could be because of depression (see our 'Depression' section) one man said, 'I don't think I was depressed or anything, I just couldn't… I didn't want to live the rest of my life either in hospital or at clinics.' People also said there was the risk of becoming 'hardened'. One man who lost many friends to AIDS said, 'Not only does it make you stronger, it makes you… bitter is the wrong word… it's almost like somebody's saying to you don't get too close to them because you're going to lose them. You become hardened to it.' Nevertheless, people found ways to remain open to life and still be strong. One man said that if he was down or wasting his life he could hear his partner who died from AIDS, 'Screaming "get on with it!" It is like you have got the opportunity to get on with it, so it gives me enormous strength.'

Choice

Many said that an important part of being empowered was making choices that were right for yourself. It was not enough to just act on the advice of others, because, as one man said, 'People have their own way of dealing with things. And it takes different people longer. Or, you know, you need a different route.' Others talked about the issue as 'following your instincts'. People talked about finding out about your options and making choices for a better quality of life.

Making your own choices means you can feel uncertain about your decisions, and you are also responsible for the consequences! One man gave up work because he was convinced that the stress would kill him, and he then had to deal with his guilt for not working. Others decided they would not to take time off work following a diagnosis or illness because 'that could make you even worse' or 'you could end up on the scrap heap'.

 

Says a fighting spirit to get on with everyday life is a secret of his success. (Read by an actor.)

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Age at interview: 33
Sex: Male
Age at diagnosis: 28
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I knew people who were rumoured to have been positive and even knew a couple acquaintances that died from Aids. But it wasn't like I knew what life entailed on a daily basis for a person living with the disease. I had a fighting spirit and decided I was not going to let this rule my life. 

I didn't miss any work in the first few weeks. What was I going to do sit and mope or deal with it head on? I think in the long run that has been the secret to my success in fighting the disease. I have a positive attitude and tried not to tell many people - partly out of shame but partly out of not wanting sympathy. 

I think finding a few select people who will give good advice or just listen helps but being treated differently by co-workers or friends only adds to the negative forces that play a part in mental defeat.

While some people talked about following the advice of doctors, others believed that you need to be the one who ultimately takes charge of - and responsibility for -your life and health. With this attitude, trusted health professionals provide advice to assist you in making treatment decisions.

 

Talks about how he chose to integrate into UK society and gather support for his immigration...

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Age at interview: 38
Sex: Male
Age at diagnosis: 36
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But I don't anticipate any problems at all, because I've integrated in this society. And there's… everyone around me would like to support that… in my asylum claim. From the church, from the political party. The Labour Party, from the MP herself. I've talked to her and I've told her. I say look, I'd like to remain here, the children are here. They'd love to be here and I can't go anywhere. 

And so she has written a letter to the Home Office to support that. I belong to the Labour Party so I, so the integration part is, can be proved. Because I mean at the same time it's not about sickness. It's about wanting to stay where you want to stay… I need to stay her. Just like the other people who, other people who belong to this country. Who wants to stay in my country. They're there, we left them. And they feel comfortable there. So you can't just go and remove them. Just like I feel I want to be here and I can't be removed from here. So it's about choice.

 

Explains that you can take responsibility for treatment decisions using the advice of trusted...

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Age at interview: 39
Sex: Male
Age at diagnosis: 34
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You have to take responsibility. I leave the like the medical expertise' to my doctor in a way, I mean I, I kind of understand how it all works, a little bit but' Usually when I, when I'm, in, in doubt about anything or I, having to make a decision about something, I will ask my doctor's advice. And then I, I will make my own decision based on his advice. But, my God if you start obsessing about, about understand, understanding the minute detail of the medical things' Not only, not only is it extremely complex, but I think that, I found that in the initial months after being diagnosed is that if you' you know so you look things up on the internet and you, there is a danger that you fall' in a way you fall in the wrong hands.

Taking charge of decision-making in this way can require considerable assertiveness, and some people told us about doctors who could be unhelpful in response.

Some said that you still have a choice under all circumstances: 'The one thing that can never be taken away from me is the choice of my response to something.' Some talked about the possibility of committing suicide if they were very ill and this allowed them to feel in control even when things were really bad. However, while being very ill or approaching death can greatly restrict choices, the new HIV medications have meant that some people have had to face life and its sometimes difficult choices all over again.

 
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Talks about how he has had to struggle and fight in life.

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Age at interview: 39
Sex: Male
Age at diagnosis: 28
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So that's the kind of personality I always had. I was born in [country]. And my parents were divorced. I became' My father was what we could consider a playboy, who basically gave us a very hard time. I had a very' My mum was, a lovely lady. But she was born and bred to be married and looked after. It's part of her generation. By the age of 14 our money basically finished. My mum always refused to work. So I had to embrace the family responsibilities. Juggling work, studies, caring for her. So I became the husband, the son, the partner, the friend. I've got a sister who is 2 years younger. So life in general has always been not a' a struggle as such, but I always had to fight. I always had to' keep going. Which I did.

Last reviewed May 2017.

Last updated January 2013.

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