Positively Adopted

Life with children who have HIV

What about disclosure?  Private or public?

Every parent of a child with HIV inevitably wrestles with this question at some point or another. Ultimately the decision of disclosure is purely personal and entirely up to the family. Different living situations call for different choices and it is the right of every family to do whatever they feel is best for their child and their decision should be respected.

Here at Positively Adopted, all of our contributing families have obviously made the chose to be public with their child's status... and that's why you're reading this page!

One of our contributing adoptive families of an HIV positive child writes:

"Without being able to see how healthy another blogger's kids looked, and read about the actual realities of living with someone who has HIV (and how safe it is), sadly there's just no way we would have done it ourselvesWhen our daughter is older we plan to explain that sharing openly about her HIV was a way to 'pay it forward' and help other children's lives be saved just like hers was saved by the openness of others."

Some families feel the stigma is just too risky in their area, that their child already deals with enough being 'adopted', or that their child's medical information should be left up to them to choose whether or not to share when they're older. 

It should be noted that there are different levels of disclosure that can be taken into consideration. For example, some of the families who have shared their stories for this website have chosen to use full names and locations. Other have chosen only first names and some have shared only pictures without faces (from the back), etc. There are many different ways to be an advocate for children with HIV by sharing about your family's experiences.

To talk with other families about this decision and read more on the subject, visit our Family Blogs page or join the Yahoo group for families with children who have HIV.

Also check out this article written by a teenager with HIV and her thoughts about disclosure.

How have you handled disclosure?

"I am very open about my daughter's status. It's not a big deal and I don't want to teach my kids to keep secrets. The stigma around HIV is ridiculous. I don't run around telling people, but it's clearly part of our lives and I treat it like any other illness."  -Debbie

"If a child is an orphan, they are alone and they and their information are on an island, so to speak. They are in complete command of their “story”. Once they become a part of say, our family, it is no longer just his story or her story. It is now “our story.” I am the mother of adopted children. That is how I became a mom. How do I not disclose that this 3 year old from Africa, who clearly did not come out of my belly, is adopted because that’s his story? You see? It’s my story too. I am the mother of an HIV+ child. It is now part of who I am because it is part of who we are. Because she is my daughter, her HIV is mine too. Currently I manage it. I administer her medication. I deflect comments from the uninformed through sharing truth. I am responsible to cultivate her self worth because I am her mom and she is my daughter. If we choose to keep a fact like HIV secret rather than private, we give a whole lot of power to something that doesn’t deserve it. Lots of energy must be poured into guarding a secret. This leads to discomfort, deception and fear; always wondering what will happen if someone finds out."    -Traci

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