Telling people about being HIV-positive

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…

Age at interview 34

Gender Male

Age at diagnosis 33

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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.

Age at interview 39

Gender Male

Age at diagnosis 34

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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 [HIV]-positive is actually as difficult, if not more difficult, than coming out as gay.”

She is very open about her HIV status.

Age at interview 43

Gender Female

Age at diagnosis 42

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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.)

Age at interview 45

Gender Male

Age at diagnosis 40

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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 [HIV]-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.

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

Age at interview 48

Gender Male

Age at diagnosis 29

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

Age at interview 40

Gender Male

Age at diagnosis 30

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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.

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

Age at interview 30

Gender Male

Age at diagnosis 27

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