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Talking about HIV

Why talk?

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.)

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Age at interview: 40
Sex: Male
Age at diagnosis: 30
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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...

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Age at interview: 49
Sex: Female
Age at diagnosis: 47
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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...

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Age at interview: 48
Sex: Male
Age at diagnosis: 32
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So I started to use drugs more than I had, and not just recreationally, but just for every day. And I was using Speed, and Cocaine just to get through the day. I had never used this before, and I was using it as an anti-depressant' You know to try and function, so stupidly then you know continued that. And friends were concerned they got very concerned because I wasn't acting in the right way, and I was acting badly you know. Just, just unreliable, irresponsible and so I then started to see' I was recommended to see a psychiatrist at [hospital] that was through my consultant and did. And I just changed all of a sudden. First of all I had to deal with the fact that I was taking the drugs, which I did. And they treated it as if I was an alcoholic. Which was brilliant because I can't understand' I thought yes, I am taking drugs but I am fine you know. I'm thinking well, you're not fine you idiot you know. You're just doing these drugs, why do you need to do this you know. 

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...

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Age at interview: 63
Sex: Male
Age at diagnosis: 48
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I' it helps me to be able to talk about it, but some people do find it difficult to cope with I think. I haven't had anybody' no hysterical reactions, nobody's run away, or not wanted to know me any more, ever. But some people have been more, more distressed than I might have anticipated I think. Of course in those days, people did expect you to die, and indeed most, almost, most of our friends did die, it was appalling carnage, I was very lucky. 

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.)

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Age at interview: 44
Sex: Female
Age at diagnosis: 44
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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...

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Age at interview: 57
Sex: Male
Age at diagnosis: 39
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The difference is actually being there and saying, yeah I remember how it was. That's how it was and this is what it has become, which is a damn sight better. So hang in there and you'll be fine. Because the rash will go away, the headaches will stop, the night sweats will change. Because until you've had night sweats, and I'm not talking about the odd bit of perspiration, I'm talking about wet soggy sheets that you cannot possibly sleep in. If you're in a double bed, you could always roll over the other side, but if you're in a single bed it means you've got to get out of bed, change the sheets. And who needs that at 3 o'clock in the morning when you are hurting, when you're tired and you just want to die. And if you're living by yourself, well it wo' what's the option?

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.

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Age at interview: 39
Sex: Male
Age at diagnosis: 34
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I suppose where' what came out is that, is that... I had to take charge of, you know of my health. I had to take charge of treatment decisions, but also I suppose I had to take charge in other aspects of my life like my, my relationship, my sex life and, and all that. So it was in that way that it that it helped. I think, somehow, I reached' it was, it was a fixed period of three months of therapy and somehow by the end of the three months I reached a point where I was ready to, to make a decision. I think a part' perhaps the way in which it helped is that, is that it was a structured process in a way, because I knew there were, I knew I had these three months. I was seeing the' the therapists once or twice a week and I can't remember now how, how often it was, but there was, it was, it was a structured process. And I, I, knew at the end of it my aim was to, was to make a decision about treatment. That's right, I had two aims. One aim was to make a decision about treatment and the other aim was to make a decision as to whether I needed to, to look into doing longer term therapy. And the' and at the end of the period the decision about treatment is that I would go on treatment, and the decision about the long-term therapy is that I didn't feel that it was essential for, at this stage.

 

Talks about how counselling allowed him to sort out feelings he previously avoided. (Read by an...

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Age at interview: 30
Sex: Male
Age at diagnosis: 27
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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.

 
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Describes how difficult experiences may be buried in the mind and how talking helps.

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Age at interview: 46
Sex: Male
Age at diagnosis: 27
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But as human beings we do things in our lives and we have interactions, some good, some bad, things happen to us and we don't deal with them, right. We store them in little boxes and we bury them in our subconscious' Whether that, that could be break up of a relationship, as complex as that can be, or it can be something that you perceive as being very embarrassing. Which might not be embarrassing to anyone else, but it's embarrassing to you and, and you bury these and they're like skeletons. And you need to exorcise them. You need to expel them' 

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...

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Age at interview: 38
Sex: Male
Age at diagnosis: 24
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And also I realised yeah, actually I do have things to feel sorry for myself about. It's actually perfectly alright for me to be furiously angry about the way I was treated at school' about having HIV. You know that these are' but I mean how unfair it is as well' it was this you know. I had a number of friends I would talk to' I was talking to about that time and you know they've had loads of unsafe sex and they hadn't got HIV and I did! And then there was this sort of thing it always happens to me doesn't it. I got bad luck. Actually it can be very seductive place to be, self-pity actually. 

Last reviewed May 2017.

Last updated September 2010.

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