Talking about HIV
The people we talked to felt that chatting about concerns - especially with other HIV positive people - was vital to living well with HIV. Keeping things 'bottled up' just led to confusions. As one woman said, if 'you ask yourself questions… you never answer them.' People also said they 'felt much better' when they talked. The act of talking seems to chip away at problems so that they can be better dealt with. While you may not always feel like talking, one man said, 'Talk. Talk. Talk. Talk until you're blue in the face. Then talk again!'
The general feelingof those we interviewed was that the benefits of opening up far outweigh the advantages of staying silent. As one man said, 'If you do not say something, that kills you more.' Benefits of talking included:
- 'lightening the load' and feeling stronger
- knowing you're not alone: 'That's one of the best medicines.'
- giving words to experiences that might be hard to express
- helping you find the answers to questions you might have
- examining the 'baggage' you bring into your current experiences
- overcoming a sense that you are bad or wrong, or that there is any shame or stigma involved in having HIV
- stopping you skipping over issues that are important to you (see 'denial' below)
- finding out from others who have more experience than you how to cope
- helping you to find a way to talk about yourself in a manner that is helpful rather than disheartening
- getting practical advice
- getting a referral to the person or organisation that can really help you sort out your problem
- accepting that you are HIV positive
Explains that talking to someone with HIV can be inspiring. (Read by an actor.)
Yeah I mean it empowers you by oh… expressing this feeling the way I feel. They have passed through the stages I've passed through and yet he is making it... why do I have to hold back?
Then I try to emulate them and do what… do those challenges they are doing, which I have, I just think that oh, because my, because of my illness because of my condition, I'm not able to do that, so I try to push myself to do those things.
Talking to other women with HIV gives her courage to approach her doctor about sensitive concerns...
One other thing is to get the support, because sometimes some of the things that you feel you cannot discuss with your doctor sometimes… I would say specifically, say things like maybe… things which might be caused by the side-effects. If you have a relationship and then you sometimes… the medication sometimes makes you loose your sexual feelings. So such things, it's always best to talk to other women, just to find out from them how they feel.
You know, when you are married or maybe you have a relationship, after taking medication at some stage you just feel you are not as active as you used to be. So you don't whether… is it the medication, or is it the HIV itself? Or is it just the depression of being HIV? So when you talk to other women it helps a lot, because that's when you will discuss this whole issue. If someone has experience of the same thing, that's when I will have courage now to go and approach your doctor and tell him about it.
It was not until he talked to a psychiatrist that he could consider his drug use as anything...
Who to talk to
It helps to put a lot of thought into finding the right people to talk to, since not everyone will be helpful, and some people may be quite hostile (see 'Secrecy and telling people'). For instance, some people's friends did not want to know about HIV, or became so distressed that the HIV positive person ended up supporting the friend.
It helps to talk about HIV, but it can sometimes be difficult to anticipate other people's...
People agreed that there are always helpful people around to talk to about HIV. They turned to other HIV positive people, supportive friends, telephone counsellors, HIV specialist nurses and doctors, social workers, support groups, Internet chat rooms and email lists, psychologists and counsellors associated with HIV clinics, private counsellors, and even church-based counsellors who were well informed about HIV. Some people reported great benefit in talking to their notion of a 'higher power' through prayer (See 'Spirituality and Religion')
Prayer can be like talking to somebody about your problems. (Read by an actor.)
As a Christian, we always say prayer's the answer. That's, that's one of the mottos in Christianity, to say prayer is an answer. I think when you pray, usually you feel relieved that you've talked to somebody… Because you've talked to God. You haven't talked to anybody, but you've talked to God… He's above all, and he's going to give me an answer… I've got my communication with God.
You know, communication line is open. And I say, 'God, you are in control of everything.' And that's also what faith in God talks about. That when you have faith in God, you leave everything in control to God. Even sometimes when you know it's beyond your control… If you… When you know things are beyond your control, you just say, 'God, you are in control of everything.'
People appreciated others who really listened to them, rather than those who told them what to do. People also wanted to talk to those who were non-judgemental and understanding, and they liked professionals whom they came to trust over time. People (e.g. psychologists) did not have to have HIV themselves to be understanding. However, people who showed that they genuinely knew something about what it was like to have HIV and 'walk around in their shoes' were particularly welcomed.
Talks about the difference it makes to talk to someone who has been through what you are going...
Getting professional help
While talking to others can help us to deal with issues that are difficult and that we would rather forget, sometimes problems can be so buried, confusing or distressing that professional counselling is needed (see our Depression website 'Considering talking therapies', 'Finding a therapist', and 'Experiences of talking therapy'). Counselling is not for everyone, but most of the people who had tried it found that talking about their problems helped.
Talking freely in counselling can lead to changes, such as taking control of decisions.
Talks about how counselling allowed him to sort out feelings he previously avoided. (Read by an...
I mean I think for the first time in certainly a year, and probably a little bit… possibly a little bit longer, possibly, I really viscerally felt… sad at my diagnosis. And then got over that. I let out a lot of feelings, I suppose, that I hadn't let out. And that enabled me to move on a little bit. You know, to, to acceptance.
So I think I'd got stuck in this sort of knuckle down, all hands on deck, sort of thing. And then counselling helped me to sort out priorities in terms of what I wanted at that moment. What I wanted out of life in the future, what I want out of life in general… And the thing that changed it was this thing. But that was… That, and the sort of feeling issue and the direction.
And the sort of coming out issues from childhood. And the sort of self-confidence issues from growing up. And sort of, sort of repressed anger.
When people dug deeper with the support of a skilled counsellor, they sometimes discovered that their problems arose earlier in life, rather than with HIV. For instance, one man discovered an unspoken 'psychological abuse in his family', and another discovered that it was far too important to him that whatever he did in life was something that his mother would approve of.
Of course coping with our feelings and experiences can be difficult. Sometimes it seems easier to try to forget them (e.g. through drinking or drugs). At one point or another, many people we talked to put difficult issues (like feelings about being HIV positive, grief, early childhood abuse, anger) 'in a box' and stored them away in 'the back of the mind.' These stored away issues could sometimes seem like they were forgotten, but they could also become like 'skeletons' in the cupboard that created problems for you. The advice was that it was better to 'exorcise skeletons' and talk it through with skilled help, rather than leave issues to fester in the back of your mind.
Describes how difficult experiences may be buried in the mind and how talking helps.
And it's the talking about it and how it made you feel and why you went down a particular route, using your logic. Whether it was correct or not is really irrelevant, it does help in talking to an individual' a counsellor. They will not have the answers. You have the answers. And it is getting at those answers.
Counselling validated the anger he had previously skipped over, and he realised the seductiveness...
Last reviewed May 2017.
Last updated September 2010.