Disclosure is the "biggie" in HIV. It's a big discussion on HIV adoption groups, because it's a big decision. Unfortunately there is still a LOT of ignorance on HIV and how it's spread. If you haven't seen Project Hopeful's pandemic video... you're missing out! :) We're not in the 80's as it's so aptly put, but unfortunately that is still where many people's information lies. They haven't progressed past the "You have HIV and it will soon turn to AIDS and you will DIE and HIV is easy to catch" idea of the decade.
Let's make it clear:
1. The prognosis for living a life with HIV (that is well-managed with proper medication) is almost exactly the same as anyone else.
2. People with HIV are not contagious. HIV is almost impossible to "get." In the last 15 years not one person has contracted HIV by living with another person with HIV. It won't happen. You can contract HIV only through sex, sharing of blood (and I mean a lot of it), or from mother to child during pregnancy, delivery, or breastfeeding.
Disclosure is a hard place to understand when you are a parent. On one hand you may be thinking why keep it "secret", there is nothing to be ashamed of, my child has done nothing to hide, HIV can't hurt anyone, and by sharing information we are only helping people's knowledge. BUT, on the other hand, it's not your own disclosure but that of your child. And your child would bear the brunt of any negativity as they got older, not you.
Unfortunately there are families who have received incredibly hurtful comments and actions from friends and family, have lost relationships with friends and family, all because they were honest and told people about their child's HIV.
Amazingly it's not just every day people who have misconceptions and misinformation, but those even in the medical profession as well. There have been numerous doctors who, upon hearing a family in their practice is bringing in a child with HIV, has said to them, "How are you going to protect your other children and keep them from getting it?" Ummmm.... really???? They can't get it! I know people who are great with sarcasm and have turned around and said, "Well, we're pretty strict with our kids on not having sex with one another and not sharing needles when they do drugs, so I think they'll be ok." I mean, come on, these are doctors. They're the ones who should know better. They should know best of all, and yet many of them are just as ignorant themselves.
So disclosure, who to tell or if to tell, is a hard topic. And just as every child and every family are different, every decision about disclosure is different too, and as long as it works for you and your family and you are doing what you deem best, I don't think there is any one right way to handle it.
For us, as I think many have seen on our blog, Olivia's HIV is not a secret. Her story was a little different than many though in that she was adopted through foster care. The first years she lived with me I didn't have the option to disclose or not to disclose. She was a ward of the state and they didn't allow the sharing of this information. Once her adoption was looming, disclosure was something I had a chance to look at and think about. At first it wasn't a question, I just was going to leave this "as is." Things were fine, why rock the boat? But as Olivia got older and we talked and she learned more about HIV and who she could tell or talk to about it, the more it seemed like some big dark scary secret. The more it seemed like I was saying there was something very "wrong" with her. I decided to ask her what she thought and when we talked about not keeping the secret, there was almost an immediate sense of relief that seemed to wash over her. It was as if her body heaved a great big sigh, saying, "Finally..." I knew then that I could no longer shelter her from this, that she had HIV and there was nothing wrong with that, and the only way to help people's perception was to start showing them there was and is nothing to be afraid of. While her HIV is now not a secret, it's also not broadcast. If people ask, I will tell them, and possibly hand them a brochure. :) But many don't know. Nothing wrong with that, they're not at risk! :)
On the day of her adoption I sent out many many letters to friends and family. I decided to just do it all at once. There was a letter explaining that there was a piece of Olivia that they didn't yet know, that I wasn't at liberty to disclose this information as her foster parent, but that now that she was adopted, I wanted them to be aware. I explained that she has HIV and that I know they are educated people who know that this does not pose a risk to them and that they have never been at risk while around her. That she was still the same Olivia they knew from before they read this letter. I went on to explain some of the basics of HIV education and then included an entire second sheet that was full of facts as well as questions and answers such as "Can my child get HIV if they bite someone with HIV or are bitten?" "Can HIV be spread by mosquitoes?" And other questions that have been asked.
I admit I was worried. I sent this out to many, and some were older relatives. But let me tell you we received not ONE negative response. Not one! I talked to some higher ups at church, no negativity (There are churches who have asked families to leave based on HIV, so don't discount the fact that I was surprised at this, you just don't know...). My reason for telling people at church wasn't to encourage them to use Universal Precautions or to prepare them in case of Olivia's bleeding, honestly it was more that many of my friends work in my school district, where Olivia goes to school, and go to our church and I really didn't know how this information was to be received by some. I more wanted the church to be prepared, and still do, in the case that a member comes to them and says, "I heard so and so has HIV, what are you going to do?" or something similar. I gave them some brochures and fact sheets... in case... but there hasn't been one single issue. HUGE blessings!
Many however choose to keep disclosure to a minimum or choose not to tell a soul. They believe that they are protecting their children and want the child to make the decision who and when to tell in their own time. Again, I totally "get" this and there is nothing wrong with this decision. It's completely up to the family. I also know families who have told, have gotten lots of negative responses, and now wish they hadn't told. And that is why this is such a hard decision... once the information is "out" you can't get it back. I think I made the right decision FOR US. It's such a hard choice and hard place to be. If you do disclose, be prepared to become an advocate. Lots of misinformation still is running rampant.
2 months ago