Feelings about HIV diagnosis
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.
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.
He relates to the virus so that he feels he has the upper hand over it.
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.
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.
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.
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.
The advice she received from a lady in a support group in Africa helped her to remain optimistic...
Even though he lacks the energy to work full time he has found many interesting things he can...
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...
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...
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.
People need to live life in the present, but responsibly.
Talks about how people can focus on - and enjoy - the present moment.
Last reviewed May 2017.
Last updated January 2013.