Today’s Stigma Story is written by Kay and Lance of 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.