Your Questions Answered: The Disclosure Decision

Written by: Jen Sloniger
Your Questions Answered is a blog series which addresses Project HOPEFUL blog readers’ most burning questions. Please submit your questions to:

Today’s question is always a hot one. Several people wrote to ask us:

QUESTION: How do you decide whether or not to disclose your child’s HIV+ status. Who should I tell; who shouldn’t I tell? What is it like to be a disclosing family?

Disclosure is a very personal thing. Many families choose to disclose or not to disclose based on factors like the type of community they live in, the strength of the support system of friends and family around them, their personality type, and many other things.

Of course, Project HOPEFUL is an organization which is filled with advocates, the overwhelming majority having made the decision to disclose our children’s status. If you asked our disclosing staff members I think they’d tell you that a main impetus for disclosing is the desire to flush out stigma. HIV/AIDS is no one’s dirty little secret. The issue of whether or not a family should hide their child’s leukemia, or diabetes, or down syndrome is a NON issue. I’ve never heard anyone talk about it being that child’s story which only they should share. Kids are born with many diseases yet it seems that HIV/AIDS is the singular chronic disease everyone wants to shame kids for having or at least quiet everyone from talking about. No one bats an eye when a mother blogs about her child’s congenital heart defect. No one condemns her for sharing such personal information about her child without her child’s consent…. See my point?

Those of us who have disclosed did so knowing there were risks. We realized it might cause our children pain. There is an ugly side to disclosure and that’s stigma. Though I can say our family has only faced blatant sigma once. And that was by a medical provider who should have known better!

Families that disclose will naturally take on a bit of an advocacy role. Because, with disclosure comes questions. One has to weigh how willing they are to answers those questions, because – WOW! – do they ever come.

I will say that some friends of mine (he’s a pastor of a small rural church) have chosen not to disclose because they do not feel their community is educated or mature enough to handle that information responsibly. I would NEVER fault them for their decision. Only they know what is best for their family and child. And, in their case I truly believe they are right. I believe they would be placing their daughter in the line of fire in their small town. For that family non disclosure is the best kind of advocacy they can do for their daughter.

For our family the idea of not disclosing seemed ludicrous. We’re an extroverted family anyway. Plus, we had 4 other kids. We couldn’t imagine educating our kids all about HIV/AIDS, telling them we would be adopting a brother who had the virus, and then trying to keep them from sharing that news with anyone. In our family the surest way to make our kids want to squeal is to tell them they can’t talk about something. haha. Honestly, we thought the secrecy would create an atmosphere of shame. And we didn’t want our HIV negative children feeling sorry for our positive son as if he were a pity case. Nor did we want them to feel like their brother’s differences were bad; so bad that they had to be kept secret.

We ended up telling our kids that they could share the news with people they trusted. We told them that it was like anything more personal to our family. We just don’t need to broadcast private information to any old person we meet. And while I’m a very vocal advocate for HIV/AIDS, it’s not like I run around my community with a megaphone telling every Jane and Joe we meet my son’s status. I am careful to create stricter boundaries with real-life people, simply because people in our neighborhood have more access to my family.

Being that we are disclosing family I will say the issue of privacy and what is or is not socially acceptable has come up. I’m not going to say it is always easy being a disclosing family. It can be difficult sometimes to navigate people’s curiosity in real life with my son standing right there. Sometimes people (or their children) don’t always know that some questions don’t need to be asked, what is appropriate, and what can be intrusive.

I’ve had some tough lessons in my new role as mom/advocate. I’ve had to redraw some boundary lines in close relationships. And that hasn’t been easy to do. It’s hard to explain to people – and even harder to navigate through – this concept of being open to discussing HIV and adoption while NOT being open to discussing my son’s PERSONAL health. People around me haven’t always understood that the topic isn’t open for conversation all the time, any time they’d like. (Especially while my son is present).

When in person, any conversation about my son needs to happen under my terms. Some people don’t love that.

The line can get blurry sometimes even for myself. While I always want to be an advocate, I am a mom first. I have to consider how my son may feel about disclosure.

As my son ages and develops his own preferences and level of comfort with disclosure I have to consider that he might want to go private. My husband and I have discussed this and both agreed we’d be willing to do whatever it took to give our son anonymity should he desire it when he’s older. If that means selling our home and moving far away, so be it. We feel that is only fair. But, for now, while he’s young, we do the best we can. We disclose because we believe it makes the world a better place for our HIV+ son. We believe the more people we can reach with the truth about transmission, etc., the more likely they are NOT to discriminate against our son as he grows.

Carolyn’s daughter Selah is a great example of a child who is totally comfortable in her skin and absolutely willing to talk to anyone anytime about HIV. She’s her own advocate at this point. I believe this is because their family has always been open about her status. But, again. I could see some children with different personalities wanting their privacy no matter what.

In the end there are great arguments for and against disclosing. It’s such a personal decision.

When it comes to disclosure there is no wrong decision, only the decision a family comes to after much thought and discussion – and, for our family, MUCH prayer.

Join the discussion. Share your thoughts. What are the benefits/challenges on each side of the disclosure decision.

One response to “Your Questions Answered: The Disclosure Decision

  1. Hello. I really enjoyed your post. I agree it’s a personal decision. However, I would question a parent blogging about their child’s congenital heart defect, or leukemia. Perhaps I am just a SUPER private person, but I wouldn’t want my health being discussed online, in 2012 without my knowledge or consent. If the blogger was using real names, I would not want that knowledge about my child living on forever in cyberspace. IMO children do have a right to medical privacy; and I think most parents, although acting with the best intentions, sometimes forget that now, what is placed on the Internet lives on forever.

    Plus all the ignorant people asking me a gazillion personal questions would drive me batty!! 😉

    Again, I’m not a parent, and I trust that whatever decision a family makes is made thinking of the child’s best interest rather than a dogma of “advocacy”. HIV advocates are wonderful, however not every HIV positive person desires or is equipted to be one. As I’m sure in your family the well being of the children should come first. 😉

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