Where to find information about HIV
People learnt about HIV from television, leaflets, newsletters, books, attending support groups, the Internet, academic publications and talking to health professionals and friends. Clinics often...
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.
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 and 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 (see ‘Dealing with difficulties, finances and benefits’, ‘Spirituality and religion’). White gay men were generally, but not always, financially better off than Black. 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.)
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 also be helpful.
Explains that when things seem terrible things do tend to get better.
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 he the weaker of them, said “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.”
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.)
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…
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 taking their own lives (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.
HIV, spirituality and religion
Spirituality means different things to different people. For instance, it can mean believing in a higher power, trying to find a higher purpose in life,...