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Telling people about being HIV+

People tell others about their HIV in different ways and at different times. The desire to keep the diagnosis secret can be very powerful - one man even briefly thought about suicide as a way of avoiding having to tell people. Another man said, 'I'm used to keeping secrets. I do that all the time… It's a private matter and I view it like that.' 

 

He does not pose a risk to people in everyday life and he does not feel he should tell everyone...

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Age at interview: 34
Sex: Male
Age at diagnosis: 33
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I don't normally get worried, otherwise I just feel maybe if I become so worried I can die earlier… leaving my kids, not anyone who can support them. So I just feel like I am just like anyone who is negative, yeah… I am saying I am, I just feel like I am just like someone who is HIV negative… yeah, who is OK, who is not HIV positive, just feel like that. 

Unless… that's why you see, I always try to keep my status private, in privacy, because once the other person hear about it people… some of them, they, normally they don't want to associate with the people like that. But they've never read or hear about anything concerning people who are HIV positive. 

Yeah, that disease, if you have actually attended everything, the disease is not spread by, like sharing… cups, toilet seats, eating together on the same plate, no. That's not… you cannot get that disease. So there are certain people who just don't know. So for you not to let know about your status, for you to live with them quite normally, don't have to tell them. So we don't have any problems. You can live long… won't be thinking about anything.

Some people told only one or two other people they really trusted. There is no rush to tell other people. In fact, clinic staff often advise people to stop and think before they tell anyone about their HIV. The best advice is to take time deciding who - and how - to tell (see below).

 

Delaying telling people about your HIV diagnosis has benefits.

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Age at interview: 39
Sex: Male
Age at diagnosis: 34
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And I, I think, having that gap between the diagnosis and when I started telling people was very important because it also enabled me to' I think it's also important for the, for other people because it enables you to' to rationalise the whole sort of situation in your head enough so that when you do tell people' well you, first of all you have gathered enough information about it so that you can explain it to them. Because one of the things, when I told my parents is that, you, you realise that there's quite a lot, you, there's quite, there's quite a lot that you have to explain actually. Whereas if I'd told them the day after my diagnosis, I wouldn't have been able to explain anything in terms of' you know the implications on my health, on what was going on medically, or anything like that so' I think it's, I think it really is important to' to take great care to prepare yourself mentally.

A few people come to the decision to be more public about their HIV. Indeed, appearing on the Healthtalk website was a way of going public. One woman told everybody about her HIV status so that people could not gossip about her. She also felt powerful: 'Because I get people off guard. A few people who had retired from work found they could also be more open about their HIV: 'Leaving work does empower you,' said one man. Some gay men noticed that telling others about their HIV status was like 'coming out' all over again'. 'Coming out as positive is actually as difficult, if not more difficult, than coming out as gay.' 

 

She is very open about her HIV status.

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Age at interview: 43
Sex: Female
Age at diagnosis: 42
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Because' My children don't like it. For the simple reason is they feel that I should only tell people who need to know. I feel that I would rather tell you, let you make your decision, whether you want to talk to me, whether you want to be my friend, than for me to become friendly with you. And to have a relationship with you and then later on you're pulling back. And it's because you heard via the grapevine what my status is. So I come out straight, tell people, you know. And give them the option. If you want to still come to my house and have a cup of tea with me, then you may. But if you don't want, I would rather know from the onset where we stand.

People said you should consider some of the following things before telling others about your HIV status:

Delaying telling people

Delaying your decision to tell others about your new diagnosis gives you time to adjust and prepare to deal with any consequences. Some people also used this time to prepare, or educate, the people they were going to disclose to.

 

Prepared himself and his wife before he disclosed his HIV diagnosis to her. (Read by an actor.)

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Age at interview: 45
Sex: Male
Age at diagnosis: 40
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I'll tell you one thing. When I was told it was a week before Christmas. Yeah I was actually told on 14th December 2000. That's when I got the results. Now I had two things in mind. I went home, I didn't tell to my wife, because that's the immediate person I had to tell. I knew she was expecting the worst from me, but I didn't tell her. 

I said, 'Well the… what I did is that some of these tests which they have to do the second round so I haven't got the results.' So I had to wait until after Christmas. Yeah. So after Christmas then I tell. And obviously the other thing was to prepare her… And I, I just talked to her and said, 'Well, this is the situation.' And I knew the way she looked at me she, she wasn't shocked as such, but she just said that she suspected that was the outcome so… And again what I did was, because obviously I had expected that she may be in shock or something. But what I did was say, 'OK. I mean if it's…', I advised her actually, I said, 'If it's something you find very hard for you to take it, I wouldn't be sort of surprised if you think of leaving me, because I know HIV is something...'.

And, and then she said well, basically, because actually before we came, we had lost her mum from HIV. So basically, her mum and her young sister. So we lost from our family too, yeah. So basically what she said, 'Well, I've been this, I've been through this before, so why should I run away from you?'

Asking yourself questions

People said you need to examine your reasons for telling people about your HIV:

  • Why are you telling this person right now? 
  • What will you get out of telling this person? 
  • What are you hoping to achieve if you disclose? 
  • What could you gain, and what could you lose? 
  • If they tell others, how will you cope? One man said, 'The word trust should not come into it… you reveal it [only] to somebody who you know can give you help and support.'

Real consequences

People said you had to think carefully before telling others because you can't undo it once you have told someone: 'It's a genie you can't put back in the bottle.' Telling people has real world consequences. For instance, a few people said you open yourself up and 'make yourself more vulnerable' by letting others know about your HIV. One man pointed out that the way people see you does change when they know about your HIV: 'Now you are a positive person.'

Preparing others

A few people found it useful to first tell other people who were also HIV positive, since they know what it is like and are more likely to be able to offer emotional support (see 'Support groups'). For all others, greater preparation is needed. Do you feel emotionally strong enough to cope if people react in a way that you don't want them to? One man did not tell people at first because he could not deal with it if people were not supportive. Another ended up having to comfort his friends about his HIV, rather than the other way around: 'You got bored having to deal with everyone's reaction.' Even people who eventually turn out to be supportive can initially react with shock, and this is quite human. People need time to accept the news. One black African man said the reaction of 'hysteria' was not uncommon.

Telling who?

Finally, you need to consider different things when you tell different kinds of people. For more details, see 'Telling children and parents' and 'Telling sexual partners'.

Some experiences of telling people

Telling others immediately

Some people told others about their HIV diagnosis immediately: 'Immediately I was on the phone to everybody telling them… it was a gut reaction… It was difficult for me to accept the fact that I was now a patient and not a member of staff,' said one health professional. But some of these people wished they had not rushed into it, since you can't then 'un-tell' people.

Needing to tell

People can find it hard to keep their HIV secret. It takes a lot of work to hide your medication and cover your diagnosis up, particularly when you are feeling emotional. Some people get to a point where they just have to tell someone else: 'I just couldn't contain it any longer,' said one man. But these people said that you still need to be careful who you tell (see 'Skills in telling people' above). One man put it this way: 'I think still be careful about who you talk to, but find someone you can talk to… Somebody to hug, a shoulder to cry on and someone who will listen to you is important.'

Being forced to tell

A few people we talked to felt they had been forced to disclose. One woman's sister had found out from hospital staff. A man said his work colleagues found out about his HIV without his permission. Another man said his clinic 'Insisted that the GP really ought to be informed, so I signed a consent form rather grudgingly and the GP was informed.' Another man who lived in a village outside of London had his diagnosis splashed over the front page of the newspaper following a car crash in the 1980s: 'Ambulance men in AIDS scare,' said the headline. 

 
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He was under enormous stress when his HIV diagnosis became public in his village.

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Age at interview: 48
Sex: Male
Age at diagnosis: 29
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That was one of the most difficult days in my life, in sitting down and explaining to my brother and my parents' because one of the reasons I didn't want to tell my parents was that A. there was nothing they could do for me and B. they would only worry about me, that I was going to die and a parent doesn't want, actually want to hear that, that one of their children is seriously ill. So, after I did that, a week later the nurse came to take my stitches out. And she brought a letter from the managing director that said basically, 'Sorry yeah to hear about your accident but you've caused a little bit of disquiet within the company and before we consider whether we can let you back to work we want you to go and see the doc, the doctor.' I thought shit, they're going to get rid of me, I'm going to lose my job. How am I going to pay the mortgage, just bought this house, so how am I going to pay the mortgage? Who's going to employ me? You know things had taken a nosedive and that was probably the same time I thought about suicide as an option. You know that I couldn't see a way out of it you know. 

 

Hospital staff outside the HIV clinic told his GP about his HIV status. (Read by an actor.)

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Age at interview: 40
Sex: Male
Age at diagnosis: 30
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They told the GP, they wrote a letter from my hospital to the GP, oh this person he is infected. Maybe his children might be, his wife might be also, you know, that kind of a thing. 

So it's a lot of a confused bunch which I don't really trust again, I don't actually agree with them yeah… it makes me very sceptical, when I go to see health professionals. I now deliberately refuse to open up to them because they're just sniffing for information from you. The little thing they hear from you, they write it down you know, put it on paper. 

You know when you tell them you don't want it on record let it be off record, they just secretly put it down and then by the time you get back to them... you don't know where they pass the information to you don't know. Yet they will tell you there and then that number one this information is just within, it's not going out… but nobody knows what happens to it thereafter.

In a few circumstances, telling people about your HIV status is advised (e.g. to GPs) or even necessary (e.g. getting life insurance, being a member of some health care professions). See also 'Telling sexual partners'.

Other people's reactions

It is difficult to predict how people will respond and sometimes it is hard to pick the right time and mood for a private, uninterrupted conversation. Good responses to telling people about your HIV were where they listened, they did not judge and did not try to offer solutions: 'You are telling them because you want to talk about it yourself, and make things clear.' 

Friends, partners and family were sometimes supportive, even if upset at first: 'Knowing that you have support, it's the best medicine,' said one person. But black Africans were usually cautious about telling their loved ones because of the stigma that surrounds HIV. Some people who told others about their HIV felt like targets of strong emotion or were even rejected: 'That was the beginning of the break-up of the relationship,' said one man. Some people were mistreated by family members who they told or suffered from gossip about their HIV status: 'News can spread like wildfire.' One man said, 'Even if you think you can probably trust them on the surface, you have to think about well, what are they going to be like if they do have a bad reaction? Are they going to go around telling everybody?' Sometimes partners, friends and family had different ideas about who else should be told. These people may want to be more secretive (or more open) than the person with HIV.

 
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Felt that a friendship that suffered because of his HIV was trouble anyway. (Read by an actor.)

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Age at interview: 30
Sex: Male
Age at diagnosis: 27
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I mean I think one friendship that suffered was probably ill-fated anyway. But one non-sexual friendship suffered. This particular friendship suffered because my friend was very distressed that I had left it a month to tell him. That I hadn't shared. Which I can understand actually. That I hadn't shared my initial shock, horror, numbness, whatever, with him. And hadn't felt that I'd been able to pick up the phone. Maybe that he hadn't been the one that I'd told on that first day. And got to come down with me. And meet me. And take me out afterwards and whatever. So… But That actually was very difficult to… The, the sort of… I suppose, in a way… I mean retrospectively the acknowledgement that that friendship may not have been all I thought it was anyway.

Last reviewed May 2017.

Last updated January 2013.

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