Show and Tell: How to Disclose Your HIV Status to Your Kids
"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.
This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
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