Learning to accept HIV
'Now I have a new life... I feel more happy and I feel more strong.'
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.
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.)
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.
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.
Talks about what it is like to get your life back on the new HIV treatments after facing death.
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.
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.
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.'
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.)
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...
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...
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.
Talks about how he has had to struggle and fight in life.
Last reviewed May 2017.
Last updated January 2013.