"Never, no time, not ever." That was Mary's reaction when asked if she had considered telling her three children she is living with HIV. Mary and her oldest daughter, Lydia, emigrated from Sub-Saharan Africa to Canada when Lydia was an infant. Learning that she was HIV positive in the early 2000s was an extremely difficult time in Mary's life, but she was enormously relieved to discover that her baby had not contracted the virus. After settling in Canada, Mary got married and had two more children. Her HIV was well controlled and she was active in her family life and in her community.
When Mary first came to The Teresa Group [an organization that serves families affected by HIV], the only person she had told about her HIV was her husband. But Lydia, then 14, had started asking Mary about her medications -- what were they and why was she taking them? -- and Mary needed some help. The family support coordinator encouraged Mary to bring her daughter in to assess how ready they both were for a disclosure conversation.
When Lydia subsequently spoke to a counsellor, she asked, "Why does my mother lie to me? She says she's fine but she takes pills every day and she won't tell me why. When I ask her, she avoids the question. Is she sick? Is she going to die?" The girl's imagination was running wild.
Parents are often reluctant to disclose their HIV status to their children and many say that they intend to never tell. But as kids grow older, they can often sense that something is up, and start to wonder what's going on.
What Concerns Parents?
At first Mary said her children were too young -- to understand what HIV is, to keep it a secret and to know about sex. These were things Mary felt she never wanted to get into with her kids, no matter how old they were. She also didn't want to worry them. They were doing so well at school and in sports and with their friends, and she didn't want to disrupt their lives.
After a longer conversation with a counsellor, Mary began to voice some of her deeper and more troubling fears. She also didn't want her children to know about something that had filled her with pain, shame and guilt. She had contracted HIV in a context of violence and trauma and had done a lot of work to come to terms with that. She didn't want to dig it all up and tell her children about it.
Like most parents, her instinct was to protect her children. She didn't want to see the look on their faces as she passed her "burden" on to them. She was also afraid that they would judge her. She feared that they would look at her and think about her differently and she didn't know how she would deal with that.
What Are the Experiences of Children?
By the time she was 14, Lydia had become angry and confused. She knew her mother was taking medications for something but whenever she asked why, she felt brushed aside or her mother changed the subject. Lydia grew resentful -- and scared. "It must be something really bad or she'd tell me," Lydia speculated to the counsellor. "Doesn't she trust me? Maybe she has cancer like my friend's mom. Maybe she's going to die. I can't think about her dying, I can't."
This kind of situation is not uncommon. Although it might seem easier to not talk about HIV with your children, research shows that generally there are some definite benefits to disclosing for both parents and kids -- provided that the way children are told is planned and age-appropriate and that the person disclosing is well supported and feels confident enough to deal with whatever issues and questions might emerge.
Several studies have suggested that disclosure can benefit an HIV-positive parent's mental health, adherence to HIV medications and family relationships. Research has also shown that disclosure can improve a child's emotional and social well-being. Children report feeling better prepared for the future, more involved in family decision-making and closer to their parents. While they might initially be worried, sad, shocked or angry, these feelings tend to diminish over time and younger children, in particular, seem to experience no significant long-term problems as a result of learning of their parent's HIV status. HIV tends to become normalized in their lives, especially if the parent's health remains good. The literature suggests that few parents regret disclosing, and that doing so often leads to a stronger parent-child relationship.
Overcoming the Fear
There is no right age for a parent to tell a child about their HIV status. Every child is unique and reacts differently. There are various ways of disclosing that are appropriate to the child's age, including partial telling (for example, saying you have a health condition without naming HIV specifically), and later disclosing more fully.
Here are some things to consider before disclosing to children:
- Talk to someone who can help. It might be another parent living with HIV, a counsellor, healthcare professional or support person who works at an HIV organization.
- Think carefully about when and how you want to tell your children. Do you want to tell only the oldest for now or all of them together? Consider their ages and maturity levels. Together with your support person, take time to plan the conversation carefully -- who and how to tell, when to tell and what to say.
- Practice what you will say. Rehearse it with your support person. Practice it out loud on your own. Try to anticipate the questions your kids might have and how you will answer them.
- Be prepared for your kids to hear you, shrug it off and move on. Sometimes kids do that. It could be anticlimactic! Or they might listen and need time to digest the news.
- Who will support you afterwards? Make sure there is someone supportive you can talk to and debrief with after you tell your kids for the first time.
If and when you decide to tell:
- Try to be as relaxed and present as possible when you talk to your child(ren). Staying calm and connected will help set the tone of the conversation. Kids can be quick to pick up on facial expressions and body language and may take their cues from you.
- Choose a time and place when you won't be interrupted. You might want to turn off your phone and make sure there is ample time for questions and conversation.
- Stay open. Listen to their questions and insights. Try to understand how they might be feeling. Ask your children to repeat back to you what you've just said. This will allow you to see what they have internalized and how they have understood it.
- If confidentiality is an issue, talk about why you want to keep this private and not tell everyone. Tell your kids how you'd like them to handle the potential telling of others. Explain who knows, who doesn't and who you're OK with knowing.
- Remember that your child(ren) will need someone to talk to about this other than you. Maybe it's an older sibling, a peer who is also affected by HIV, a counsellor, teacher, healthcare professional -- someone the child trusts who can support them.
- Check in regularly with your kids. Ask them how they're feeling and if they have any questions. But also remember that it is OK to just get on with life and not talk about HIV all the time, if that's where they're at.
- Keep them informed about your health and your doctors' visits to allay any worries or fears they may have.
- Keep in mind that disclosure is an ongoing process, not a single event. Commit to an ongoing open and honest conversation with them.
Tools for Telling
Videos about kids and youth living with or affected by HIV can be inspiring and useful tools for both parents and children. Check out these YouTube videos:
These booklets offer additional info about disclosing to children:
An HIV organization can provide a supportive environment that normalizes living with HIV. Friends and peers can help too if they are OK about being out and identified to your children.
Nicci Stein is the executive director of The Teresa Group, a community-based organization that advances the dignity and well-being of families affected by HIV in Ontario.