I am 28. White. A Female. And a former Peace Corps Volunteer. I am HIV Positive. This is my story of how a few months, a few people, and a few events in Zambia changed me and my life forever. This is the story of how I contracted HIV and brought my Peace Corps Journey to a crashing halt... and how I am working now to pick up and put back together the pieces of my life as a newly diagnosed person living with HIV. This was not the journey I had originally planned... my path has traumatically and dramatically changed... but it is the one I am on now. There is no going back. There is only forward. I welcome you to follow along with me as I attempt to explore this new life ahead of me, whether you are someone from the Peace Corps community, or someone living with HIV. I welcome your comments, questions, suggestions, and opinions. Let us go forward together. To start from the beginning, click here He Gave Me More Than A Bracelet.

Wednesday, May 2, 2012

To Disclose or Not To Disclose?

So, there seems to be this growing trend of families adopting HIV positive children, which I think is totally awesome! Many of theses families also seem to be blogging about their experiences, and becoming Educators and Advocates for HIV, which again, I think is awesome! I have posted a few of the blogs/adoption sites on here before, and I continue to hear about more, mostly because my sister and her husband are currently on the road to adoption (not necessarily for an HIV positive child).

But, today, I just want to look at this whole situation a little more and try to express some of my feelings about it. To be honest, I keep finding myself continually torn as I read these families' blogs. On one hand, I applaud their efforts to raise and spread education and advocacy about HIV. I think they are doing a great job of it too. But, on the other hand, I keep finding myself having an unsettled feeling about the fact that they are choosing to disclose their child's HIV status before or without that child having any choice in the matter. I really can't quite make up my mind on whether I agree with this or not. Let me try to get some of my mixed feelings out about it here, and then maybe others can join in and give their input also...

Some Pro's of Disclosing
  • The family becomes instant advocates and educators for HIV.
  • Family, friends, and strangers learn more about HIV, and learn to better accept people with HIV.
  • The child may be raised feeling totally accepted and normal, and not have to be ashamed of his/her disease.
  • More people learn that HIV adoption is an option.
  • Maybe it will lead to more widespread acceptance, and help to end stigma and discrimination.
Some Con's of Disclosing
  • Sometimes it is solely the parent's choice, and the child is being afforded no power of his/her own in making the decision to disclose.
  • This could lead to unwanted discrimination for the child... in schools, activities, friendships, relationships, and even jobs in their future. 
  • Once this child's name is linked to HIV, in full site of the public eye, he may never be able to go back and erase that. 
  • Not all individuals (adults or children) are made to be advocates. This child may not want to disclose and become a life-long advocate. MANY people with HIV feel more comfortable keeping it private, and that is totally okay.
  • If a child isn't involved in this decision-making process to disclose, it may later become an area of resentment or issue within the family.
Some Other Random Thoughts I've Had About It:
  • Choosing to disclose your child's HIV status as a baby is a bit like baptizing them as a baby... making a huge life decision for them, before they are even ready to learn, understand, or form their own opinions about it.
  • What if my mom, months ago, had decided that she had the right as a parent to disclose my HIV status to whoever she wanted? (Or maybe people will say this is different b/c I brought it upon myself whereas these children were just born with it?)
  • Does this issue/situation change at all depending on whether this is an adopted or a biological child?
  • Many professionals (social workers, doctors, etc.) in Pediatric AIDS Units often discourage families from disclosing to schools and other places unless absolutely necessary. Should we trust these professionals, or just make our own opinions of what is best?
  • Is there a way that families can still be HIV Advocates and educate about the disease without disclosing the child's status?
  • We would share with family and friends if our child had another disability, so why not HIV? Is it or should it be different?
  • Couldn't families just hold on to the information for a bit, and then once the child is old enough, let them be a part of this huge decision making process... at which point the family could still become the advocates they so desire to be?
So, yeah, there are my ideas. I know they won't necessarily sit well with everyone, but that's the point! We are all entitled to an opinion! Please feel free to share yours. I think I'll even make a poll question about it (haven't done one of those in a while).

Here is a link to a blog post discussing a mother's feelings about disclosure that I thought was pretty good.


  1. Hi Jess. I commented on the post you linked to. I wanted to add that while I think disclosure is a personal decision, choosing to keep your status (or the status of your minor child) private doesn't mean you are ashamed. Although I wouldnt want to go back to the "hushed whispers" of the olden days, sometimes I feel that we live in a culture of "over sharing". Again, in 2012 what is placed on the Internet lives on forever, so IMO it's better to have a higher standard of privacy online. I thought about your "baptizing" analogy, and the buggest difference is that one can choose another religious belief when one grows up; one cannot go back and "un-do" the disclosure. If my child had diabetes, or cancer, I wouldn't blog about it although that doesn't mean other parents can't.

  2. Also, I don't think it matters as to whether the child is adopted or biological. To me it matters if the parent is HIV positive as well. My thoughts are that an HIV positive parent has "walked the walk" so to speak, and KNOWS what it's like to live with HIV, to live with stigma etc. IMO they are more informed as to the real life ramifications of disclosure or non disclosure than someone who has an HIV positive child (either recently born or adopted).

  3. Here are some of my thoughts. I completely understand why people would choose to disclose, and why some choose complete privacy. We are kind of in the middle. We've told select family and friends who will keep it confidential. We are planning on what you mentioned toward the end--just holding onto it for now until our child is old enough to understand this himself and we'll just go from there! And yes, families who choose some level of privacy still can advocate a LOT! We have had so many chances to educate and we are open in saying that we would gladly accept an HIV+ child, and here's why ____. Opportunities arise all the time to spread awareness, probably as often as I talk about adoption in general. Thanks for your thoughts on this matter and all that you've shared on your blog. Voices like yours are important and helpful.

  4. I would not disclose my child's health status to anyone outside of the family - not on a blog, not with neighbors, not with strangers on the street, until s/he was old enough to make that decision for her/himself.

    I think it has less to do with keeping it quiet and more to do with my child's autonomy (or eventual autonomy as an adult). I have no right to make that decision for my child - just as I would have no right to disclose any other illness s/he may have.

    Yet, I do not have a child, and I will never judge a parent in this situation who has a differing approach...

  5. We're in the thick of this decision right now. We just adopted an hiv positive child who is currently 3 years old. This is after a long adoption journey - in the middle of which we moved from the United States to London! Through our adoption journey - especially when we first learned the truth about HIV adoption - we were very open about our willingness to adopt a positive child. I know this has helped at least 3 other families decide to adopt HIV positive children - and probably has influenced others.

    With moving overseas and being in a new community, however, we have the opportunity to have a fresh start. In the states, everyone in our community assumed our first adopted child was positive - even though she was not - because of our advocacy. We faced no discrimination and found only support. But living in a new country and community, we're not sure how people will respond.

    We've told a few people close to us and they have all been awesome. I think we will probably take a middle road - telling people when their support matters to our family and our little girl, but not broadcasting it online. That said, I am a writer and my blog has thousands of readers (most of whom I do not know in real life). My online advocacy and my real life sometimes intersect...so even if I never say "our daughter is HIV positive" people may read through the lines of what I've written online or in print.

    We're going slow with disclosure as we move into our new community, but in the end I hope that we can be very open. I don't want to make it a big issue now - I mean our daughter has no idea that she is HIV positive. I think it's fair that she knows before we tell the world - and we will not fully explain it to her until she's about 8-12 depending on her maturity.

    My two cents...

  6. Travel to the U.S.A. with HIV: http://plwha.org/travel-to-u-s-a/