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

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. 

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')

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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.

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.

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.

Last reviewed May 2017.

Last updated September 2010.


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