Supporting the health and wellbeing of children and young adults living with HIV

Many young people we work with say that having a family member, close friend, or someone else in their lives who knows they have HIV and treats them the same has brought huge emotional relief. It has given them a space where they can fully be themselves. 

But telling someone new about your HIV is completely up to you. 

If you decide to tell someone about your status, it’s worth thinking about who and why, and carefully planning for the conversation and its possible outcomes. This will help you feel more prepared and less nervous.

Who to tell

Telling others about your HIV status should first and foremost be of benefit to you. Think about who you’re planning to tell, and if it’s the right decision. Consider:

• Why do I want this person to know about my HIV status?
• What would it be like if they tell other people?
• What does this person already know about HIV? Can I start up a conversation about what I’ve read about HIV online and see how they react?
• Have I ever told this person a secret before? Did they keep it? 

If you feel like you’re not ready to tell anyone yet, you could speak to other young people who have shared their status. Listen to their experiences and ask what worked for them. You might be surprised how many people have had positive reactions.

How to tell them

Once you’re sure about who to tell, start preparing for the conversation. Here are a few things to think about:

1. Time and place. Decide where you want to tell them. Pick a place where you feel comfortable talking openly. Also think about the right time for the conversation. Don’t bring this subject up when either of you is stressed or in a rush, for example.
2. Know your HIV facts. You don’t need to know everything, but understanding what HIV is, how it’s passed on, and how treatment works will help you feel prepared for any questions. Find information about HIV here.
3. Think back to when you were told about your HIV. Is there a way you would have preferred to be told? What questions came up for you at the time? This should help you decide how best to say what you want to say and think of possible questions in advance.

Questions to prepare for:

Questions to prepare for:

1. What is HIV?
2. How did you get HIV or how does a person get HIV?
3. Can you pass it on to others? How?
4. Are you going to die?
5. How does your medication work?
6. Are you undetectable? How do you know you are undetectable?
7. Why didn’t you tell me before?

4. Plan how to start. Think of the first few sentences of the conversation as this is often the hardest part. You could say something like: “I want to tell you something important. I live with HIV. It is a virus that makes my immune system weak so I cannot fight off infections as easily as other people. So I take medication which makes my immune system strong.”

5. Explain why it’s important they keep the information private. For example, not everybody has the right information about HIV and can hold negative attitudes. Say that you have chosen to tell them because you trust them and value your relationship with them.

6. Ask if they have any questions. If they ask you a question you cannot answer, just say you’re not sure. Don’t try and explain something you’re not sure about. You could get in touch with Chiva, other support services, or your doctor or nurse to find out the answer. There may also be questions you don’t want to answer, and that’s okay. You have the right to share only as much information as you feel comfortable with. 

7. You don’t have to do this alone. There are many people and organisations who can help. These include Chiva, your clinic team, or someone else at the hospital who supports young people to share their HIV status. You could even arrange for someone to be with you when you have this conversation.

Preparing for possible reactions

Even though we all hope for a good reaction, there is no telling how the other person will respond. It’s important you feel well prepared for all possible reactions.

If someone does not respond well, it says more about them than it does about you. It will often be because of a lack of understanding about HIV. 

Work out how you will keep calm if they get emotional or angry, and who you can turn to for support if it doesn’t go as well as expected. It might be wise to leave the conversation, and return to it at a later date when they’ve had time to process things.

What next?

Having a conversation about HIV is rarely a one time thing. Think about what’s next and how to follow up with the person you’ve told.

People process things in different ways. Some may fully understand the information immediately while others might need time to take it all in. 

Even if someone reacted badly at first, they might just need a bit of time to think everything through. You may also need time to process things after telling someone you have HIV.

• Check-in with yourself. Think about what you’re feeling about the conversation. Perhaps you could talk it through with someone who already knows about your HIV status.

• Ask if they have any more questions. Find out if the person you’ve told has any concerns or uncertainties. Try to keep the conversation going.
• Send them further information on HIV they can read or watch in their own time. Life Growing Up is a useful video showing the unique perspectives of those who have grown up with HIV. There is a lot of misinformation about HIV on the internet, so make sure you’re sharing trusted sources like aidsmap or the National Aids Trust websites.
• Ask if they would like to speak to your doctor or nurse, or someone from Chiva. If they have difficult questions or you would like them to hear the information from another person, there are people available to support you.

Emphasise what you would like them to keep private. Remind them that you are trusting them with the information and they should not share it without your consent.