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Enhancing the health and social wellbeing of children and young people living with HIV

Getting Ready

Telling others about your HIV status should first and foremost be of benefit to you. If you decide that you do want to tell a person about your HIV status, here are some tips to help you prepare and think about what to say:

  1. Decide where and when you would like to tell them. Pick a place where you feel comfortable talking openly. It could be somewhere special for you or somewhere where you will both be relaxed and comfortable. Think about when you want to tell them. You don’t want to do it at a time when either of you is stressed or busy – like around exams or with a big event coming up. Feeling calm and confident can help you to handle however they react. 

  2. Be prepared with basic information about HIV. You don’t need to know everything, but understanding what HIV is, how it’s passed on/how it cannot be passed on, how treatment works etc. can help you feel prepared for any questions the person may ask. The Young People HIV information area is a helpful place to look to brush up on your HIV knowledge.

  3. Think about what they might ask you or how they might feel. Think back to when you were told yourself or how you would like to have been told. This should help you think about the best way to say what you want to say and think of any questions they might have. Think about what questions you feel comfortable answering and if there are any you may not want to answer or would want to be answered by someone else (like your doctor/nurse, CHIVA or someone else in your life who is comfortable talking about HIV). You have the right to share as much information as you feel comfortable with. Questions the person you talk to might ask include:

    1. What is HIV?

    2. How did you get HIV?/how does a person get HIV?

    3. Are you going to die?

    4. How does your medication work?

    5. (If you tell the person about undetectability or U=U) Are you undetectable? How do you know you are undetectable?

    6. Why didn’t you tell me before?

  4. Try not to make telling someone about HIV a big deal. Think back to how you felt when you were told. Were you told by your parent/carer or a doctor/nurse? Think about what they said and the way they told you and how it impacted how you felt about your HIV status in that moment. You could say something like “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 without HIV. So I take medication which makes my immune system strong. HIV doesn’t stop me from doing day-to-day things like sports, swimming.”

  5. Explain that you would like them to keep the information private. You could explain that not everybody is understanding or has the right information about HIV. Say that you have chosen to tell them because you trust them and value their friendship/your relationship with them etc.

  6. Ask if they have any questions or concerns about what you have shared with them. If they ask you a question you cannot answer, just say you’re not sure. Don’t try and answer or explain anything you are not sure about. You could get in touch with CHIVA, other support services or your doctor/nurse to find out the answer, or ask them to speak to the person you have told. 

  7. Remember: you don’t need/have to do this on your own. There are many people or organisations who can help you. These include: CHIVA, your clinic doctor or nurse can also help you or refer you to someone at the hospital who works with young people to support them around telling/sharing your HIV status with others. They can be with you when you are telling your trusted person about your status.

  8. Remember: if someone does not respond as well as you would have liked, it says more about them than it does about you.  Most people have a good response to telling someone but it is always good to be prepared, and remember, even if someone reacts badly, they probably just need a bit of time to think it all through. 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 you hoped. As difficult as a negative reaction might be, it does not mean that you won’t have positive reactions in the future. If this does happen reach out to people who can support you. Perhaps you could let someone know, someone who already knows about your HIV status, that you are planning to tell. That way they can check-up on you after you’ve had the conversation.

If you are not sure that you are ready to tell yet, please speak to other young people you know who have told others about their HIV. Listen to their experiences, and also ask them what worked for them. You might be surprised by how many people have had positive reactions. 

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