HIV FAQ: How Do We Explain HIV to our Child Who Is Positive?


Shannon Dingle tells the story of how she talked to her child about HIV and shares the way she empowered her child to live unashamed.

Is your child aware they are HIV+? How do you approach the topic of HIV with your child, especially as they get older? I am not sure how old your child with HIV is but we are waiting to go to court to adopt [a child who is 15]. We have not talked to her yet about her illness and we are worried about that conversation. How she feels about it? Is she scared? Does she want to talk about it at all?! How did you do this? How do you plan to equip your positive child to face the world unashamed?  

Yes, my child is aware, as much as he/she can be at this age.

In Uganda, HIV was already a familiar term. Whenever we went to the doctor there, it was explicitly called "the HIV clinic" there. Our kids knew that HIV was the reason others in their family and community had died.

Did they understand what HIV was? No, not really. But no kid really can.

Early on, our biggest priority was explaining that the medication our child takes daily would lead to life. Our kids had the impression that HIV = death so we had to re-write that story for them to dispel fear.

As far as other conversations go, all six of our children are 7 and younger, so we talk about how one has booboos on the brain (cerebral palsy) that she needs therapies and another has booboos in the blood that require daily medicine. In Uganda, HIV was talked about openly, so they had been exposed to the term, and the head of infectious disease at Duke (where we go) recommends talking about HIV from an early age and adding more details over time. For now, we talk about how the medicine keeps the booboos from making our child feel sick, and the booboos can't make anyone else sick unless they share blood or private parts.

When it comes to helping our child live unashamed, that's part of why we chose to disclose about HIV instead of keeping it a secret. I feel like it's hard - but not impossible - to tell a child, "this is nothing to be ashamed of, but don't dare tell anyone."

More than that, though, we teach all of our children that differences are important. Differences - in health or ability or appearance or anything else - make the world richer, and different. does. not. mean. less than. 

Finally, we are clear that HIV does not define us. Our child is SO MUCH MORE than HIV, and that's a lesson we'll be teaching and re-teaching all through our parenting journey.

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