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Deciding whether to tell people that you are living with HIV

Because of stigma, many people living with HIV think quite carefully about whether to tell people that they have HIV or not. One way that some people avoid experiences of stigma and discrimination is by not telling others.

In a great many situations, HIV simply isn’t relevant and is unlikely to come up in conversation. Many people living with HIV decide that the majority of people they come into contact with have no need to know about their health status.

On the other hand, making someone aware of their HIV status may be the single most powerful thing that a person living with HIV can do to fight stigma.

Deciding who to talk to about HIV is a very personal decision, and what is right for one person won’t necessarily be right for another person.

“In my church, I’ve never really alluded to having HIV, because I don’t know how they would think.”

There can sometimes be advantages to telling people you trust or people who will be able to help or support you in some way. If they understand what you are going through, they may be able to give you the love and support you need. Sharing a confidence can sometimes make a relationship stronger.

“I understand the stigma, and people also think it’s a private health issue, so that’s why people do keep their status to themselves because it’s a very confidential matter, I can appreciate why. But to me, I just think the power of being very public and unashamed of your HIV status is quite an empowering thing. It helped me with dealing with my diagnosis, to be completely up front and public about it, in the most public way possible, which was putting it on Facebook.”

Sometimes people respond in an unkind or hurtful way. But this probably happens less often than many people think. Most people living with HIV find that sharing their HIV status with someone they trust is a positive experience.

“I can’t give it to anyone, so why would I need to tell anyone?”

Telling people that you are living with HIV is more likely to be a positive experience if you are careful about who you choose to tell and how you have the conversation. Here are five questions to ask yourself each time you are thinking about telling someone that you have HIV.

Why do you want to tell them?

It’s easier to be sure that telling someone is a good idea if you have a clear idea about what telling them could achieve – what benefits are you hoping for? You might think that if they knew, they could give you some help or support. Think about whether these expectations are realistic.

There may be some people you are very close to who you feel ‘should’ know. But think through the following questions, and check that it still seems a good idea.

How will they react?

Try thinking about how this new information will affect the person. Imagine the best way they could react – and the worst.

You might find yourself needing to reassure someone who is upset. You could be asked how you acquired HIV, and the news could tap into someone’s prejudices and attitudes about sexuality, morality or illness. You might find it helpful to have factual leaflets about how HIV is – and is not – transmitted at hand to provide reassurance.

Or you may want to tell this person because you are confident that they will be calm, supportive and trustworthy.

What are your options if they react badly?

In some situations, while it would be very disappointing if a person reacted badly, it wouldn’t have serious consequences. For example, you might want to stop seeing the person, but this may be okay if there are other people you can turn to.

But in other cases, you might be considering telling someone that you are financially or emotionally dependent on, or who is important to you in some other way. The consequences of the person reacting badly would be more serious.

For example, if you are thinking about telling someone you live with, what would your options be if they reacted badly and you couldn’t go on living with them?

Can they keep it to themselves?

When you tell people, it may be worth telling them clearly your feelings around who, if anyone, they can and cannot talk to about your HIV status.

Is this a trustworthy person who understands the importance of confidentiality? Although you can ask someone not to tell others, once you’ve told them, you won’t have much control over what they do with the information.

People you are close to might find the news worrying or upsetting. They may want to get support for themselves. But if they’re not meant to talk about it with anyone at all, this will be hard for them. 

How will you tell them?

You might want to think about how you’ll bring the subject up, as well as the best moment to do so. Choose a time and a place where you’ll be as comfortable as possible.  It is your discussion to have.

“People’s reactions reflect how you feel about yourself when you tell them.”

HIV, stigma & discrimination

Published January 2018

Last reviewed January 2018

Next review January 2021

Contact NAM to find out more about the scientific research and information used to produce this booklet.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.