Table of Contents
- Letting Your Children Know You Are Living with HIV
- Telling Children About Their HIV Status
- Taking Care of Yourself
When you think about talking to your children about your HIV status or your children's status, you may feel many different emotions. It may help to discuss your feelings with someone you trust, such as a health care provider, counselor, family member, or friend. You may want to talk with that person about how and what you will say. You may also want to share your disclosure (telling someone) plans with those who already know your HIV status, so they will be prepared to give accurate, reassuring, calm responses if your children bring it up with them.
Remember what you already know about your family: how your children learn new information, what your children may already know about HIV, and what feels most supportive to your family. Use this knowledge to decide how to talk about your and your children's HIV status with other family members. While there may not be an exact best way to disclose, there are some steps you can take to prepare.
Telling your children that you are living with HIV can be really hard. It can be helpful to prepare yourself by thinking about how your children will react and what they will want to know based on their age and maturity. You may also find it helpful to talk with other parents who have told their children about their HIV status.
Your children will probably ask about your health. If you are taking effective HIV drugs, it may be a good idea to explain to them about how well the drugs work, and that people can live long, full, healthy lives with HIV. Parents with well-managed HIV can do all the same things that other parents without HIV do with their children. One of the main concerns that may come up during the discussion is what will happen to them if you get sick. Be prepared to provide reassurance that they will be taken care of if something happens to you. They may also find it reassuring to know how you will be cared for if you get sick. For more information, see our fact sheet on Making Plans for the Future Care of Your Children.
Children may also want to know how you got HIV and if they might get it too. Depending on their ages, they will have different questions. They may not have any questions at all or ask questions later as they arise. Regardless of when they begin asking questions, it is best to provide them honest responses based on facts. Telling them things that are not true can damage your relationship with your children and affect their trust in you.
If your children have already learned something about HIV at school or through the media, you can use that as a chance to build on and reinforce what they already know. Older children or teenagers sometimes learn about HIV in school. Regardless of their knowledge about HIV, children may already suspect something. They may see you taking medications or going to your health care provider more often than some of their friends' moms. If your children already suspect something, they may feel angry that you have kept this from them. Telling them may help them talk about HIV openly.
Let your children know whom they can talk to about your status. Tell them who else you have already told. Be prepared that they might feel disappointed or angry if a lot of people knew before they did. Your local AIDS service organization (ASO) may have a children's or youth group where they can talk with others in similar situations. Your health care provider may also have a counselor who can talk with your children, or facilitate and provide support during or after the discussion. To find ASOs and HIV services in your area, use POZ's directory.
Before telling your child that he or she is living with HIV, think about why you want your child to know. Perhaps your child has been in the hospital, taking medications, or asking questions. Whatever your reason, make sure that you are okay with your child knowing. If it is not okay with you, your child may sense that, and find it more difficult to be okay with it her/himself.
It is important to have some HIV-related information ready before you begin talking. Look for materials that have an optimistic tone, and are appropriate with your child’s learning level. Children may want to know if they are going to die, how they became HIV-positive, or if they will become sick. It is important to know in advance how you will answer these questions. Also, consider your own feelings about these concerns. You may choose to wait with the conversation until you get some emotional support or talk through the answers to these questions with a friend.
Children need different types and amounts of information depending on their age. Begin with some simple ideas that you think are most important. Very small children may be too young to be told the name of the disease or many details, but try to be as honest as possible. You can tell them more and more in age-appropriate ways as they get older and can understand more details.
Young children need information mostly about things that affect them right now. School-aged kids may need some basic information about what to do if they bleed (all children should be taught that it is not a good idea to touch anyone's blood). Teenagers will require more information about how HIV is transmitted and how to prevent this from happening. It is important that all children know they cannot transmit HIV to friends or family through casual contact (e.g., hugging, kissing, using the same toilet).
It may take some time for children to take in the information. Let your children know that they can always speak freely with you. It is important that your children see you as a trustworthy adult so they will feel comfortable coming to you with questions.
Your children may feel isolated, angry, scared, or depressed by knowing their HIV status. It may help if there is someone else with whom they can talk about HIV. Even before you tell your child that they are living with HIV, you can arrange a support network consisting of heath care providers, trusted family and friends, and other parents with similar experiences.
While some countries' laws protect people living with HIV from discrimination, you may not want your children to let everyone know their HIV status. You can tell your children that HIV is a private family matter and that you will decide as a family whom to tell and how they should be told. Some US states require disclosure to health care providers before receiving services. This may mean that you have to tell a school nurse or pediatrician about your child’s HIV status.
While it can be extremely difficult to disclose information about HIV to children, it is better to tell your children as early as you can, especially once they start asking questions. It is usually easier to tell the truth than to try to cover up the diagnosis. Once children are aware of their HIV diagnosis, the family can start discussing things openly and dealing with the feelings that may come up. Here are some tips that may help make disclosure easier for you and your children:
- Deal with your own feelings first. Understand your own emotions about living with the diagnosis (yours or theirs).
- Build a strong parent-child relationship
- Seek out support for yourself both before, during and after disclosure from friends, social workers, counselors, and others
- Prepare by gathering HIV-related information, creating an appropriate environment, and arranging support for your children
- Find a time to disclose that is free from interruptions and appointments
- Try to be as relaxed and positive as possible before the conversation begins. Even if you feel anxious or sad, being relaxed and OK with your own feelings can help your children trust you and be open to their own feelings.
- Disclosure is a process. It will likely involve several conversations. Even if your children do not respond the way you hoped right away, with time, support, and information, they may be more accepting.
- Know that your children may respond differently from what you are expecting. Understanding the HIV diagnosis may take some time, particularly with children. Continuously give them space, support and information; in due time, they may be more understanding and accepting.
- Encourage your children to ask questions as they come up.
- Give reassurance and hugs! And make sure you get some, too!