Disclosure Dilemma: When You Want to Tell

Today’s Stigma Story is written by Kay and Lance of preciousandpositive.wordpress.com. Stigma Stories is a short series the week of World AIDS Day (Dec 1st) to highlight the need for education about HIV/AIDS. The Truth Pandemic Campaign was created to help combat social stigma through ongoing educational initiatives.

Lance and I have three precious children through adoption.  We are proud of that.  We cannot imagine loving them more than we do.  Two of them are of a different ethnicity and we love that about them.  We can’t imagine our family any other way.  We want the world to know what a blessing adoption is.  We hope God will use our example to further adoptions in our community.

Though, we have a secret we’re afraid to share.  At least that’s what it feels like.

Our three-year-old daughter has HIV.  Her disease poses no risk to our family, to our church, or to our community.  She takes medicine twice a day.  One day she can attend school, get a job, marry and have children.  For now she plays with dolls and likes to read in mommy’s lap.  But it feels like we are hiding something.

My husband and I have long since accepted her HIV.  We learned everything we could about the disease early on in the adoption process.  But we knew most people in our community still had old stereotypes and misconceptions about HIV/AIDS.  How would our community react if we told them we were adopting a child with HIV?  How would our friends and relatives treat us?  What would they think of our daughter?

We decided to keep her HIV status confidential because we wanted to protect her and our family from stigma and criticism and ostracism.  Honestly, we do not care what people think of us.  But we do care what they think of our daughter and how they might treat our family.  We have heard more than one story of families disclosing their child’s HIV and facing mistreatment – from extended family, friends, neighbors, and even from their church.

Would this happen to us?  We do not know and we are afraid to find out.  This is a struggle for us on many levels.  We don’t want our children growing up with a “family secret” they can’t tell.  We don’t want our daughter feeling ashamed of her HIV and afraid of people finding out.  We don’t want to go through life without the support of friends and Christian brothers and sisters.  We don’t want to be cowards or live in fear or fail to trust God.

When we told our parents about adopting a daughter with HIV, they expressed a desire that only immediate family know.  They were afraid how grandparents and aunts and uncles and friends in the community might respond.  When we contacted our local health department and the nearest pediatric infectious disease doctor for help completing adoption related paper-work, they refused.  One state health professional who works with the HIV population counseled us to keep our daughter’s HIV private for fear of being “run out of town”.

Complicating the issue is that my husband is the pastor of our small rural church.  Here are the people we should expect the most acceptance and support from.  But if we chose to disclose and it turned out that they did not accept our daughter’s HIV then the entire church could be affected, as well as my husband’s position as pastor. Now we find we are at the point where it is possible that our delay in disclosing could cause some to feel betrayed somehow by our long silence. Disclosure is a tough situation no matter which angle it is approached from.

The decision to keep our daughter’s HIV confidential has not been easy but that’s how unsafe we feel about disclosure.  We want to tell.  We want to be an advocate for our daughter and other children like her.  We want the world to know what a blessing it is to adopt a child with HIV.  But, at least for the time being, we are choosing to leave our daughter’s HIV out of it.

This is why we are so excited about Project HOPEFUL’s Truth Pandemic campaign.  We are a family who feels like we can’t speak up.  We need the help of others to spread the word and help eradicate the social stigma and ignorance surrounding HIV/AIDS.  We long for our daughter to grow up in a world where she feels accepted and free to disclose her HIV status with whoever she wants without rejection.

7 responses to “Disclosure Dilemma: When You Want to Tell

  1. I am advocating for the adoption of two HIV girls from Ethiopia. They are like granddaughters to me.
    I tell everyone the girls are HIV. So far no one has expressed anything but positive.
    I think attitudes are beginning to change.
    Thank God for the Twietmyers and Project Hopefull.
    When the girls come to their “forever family” I pray there will be no stigma.

  2. We adopted a little girl that is 4yrs. old (she was two at the time) that is HIV+. We have told very few for this same fear. I had to end up telling my sister who felt that she had to tell her daughters and now the youngest one will not come around. She has two daughters right around our little ones age and she doesn’t want her little girls around ours. Which hurts because we use to be close and my little one would LOVE to play with her little ones, she will NOT even talk to me on facebook and that is sad. We too feel bad because we are keeping this secret that we should be able to share with our loved ones but can’t because they would close the door on us like she has. We haven’t talked in two years (since we adopted our precious one). We haven’t even told our oldest son who has a sone for fear we will never get to see them again. It hurts me deeply. I am not ashamed of our daughter, she can not help being born with HIV.

  3. Greetings to all you brave people! Only love and respect is pouring out of my heart for all of you. Our family adopted our sweet son from Russia 7 years ago. He was healthy — very malnurished — but otherwise no complications. We have 3 older bio kiddos. Kaleb is now 14 and a joy to our home. There is no shame and no condemnation in JC — you all know that full well! Twietmeyers — thank you for providing a forum for moms and dads to express their hearts. Kari Gibson is one of my best friends and put me in contact with your web site and ministry. I am a grant writer/free lance writer. Be encouraged today and know you are loved and supported!

  4. What really gets me the most is how people can turn their backs on these sweet innocent children!

  5. This is truly a “Dammed if you do, Dammed if you don’t” situation. there are also no easy answers.
    I think you raise valid points about your husband losing his job. If the congregation fears catching AIDS there is a real possibility many members of the church will defect to another church or start a new one. I’ve been in church splits before, but it was over doctrinal issues not AIDS. They are never pleasant.
    If you are in a church and the church is failing there is a possibility your husband can face being replaced by another pastor (fired nicely) so he’ll lose his job or you would have to move from your friends and family.
    I don’t know how conservative or enlightened your community is but I personally wouldn’t want to find out. I f your own family doesn’t want your relatives to know then maybe they are telling you something about the uncharted waters that you face.
    Fear of AIDS and the stigma attached is still very real, but getting better. Putting yourself out there in the forefront requires a bravery I personally don’t have. I also understand you wanting to be an advocate for your daughter and others like her is commendable. But at what cost? Will you really change deep-seated fears or make your family a target of mass hysteria?
    Only you two can decide what is best for you and what makes the most sense for the long-term. So, good Luck to you, “Dammed if you do, Dammed if you don’t”. I’d love to have a follow-up on your story. since ultimately it is your decision and you will live with he consequences of it for decades to come. The answers have to come from your heart and not outsiders opinions. GOOD LUCK TO YOU ALL.

  6. I just wanted to thank you all for sharing your insight into this issue. My husband and I are just beginning the process of adopting our first little one from Uganda and I can’t tell you how much of an encouragement your stories been to me! Thank you so much for sharing!

    Blessings, Karly

  7. Great thoughts! Praise God for loving your daughter so well!

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