Friday, May 4, 2012

Truth about HIV: Disclosure

Part 2 of my Truth about HIV series is all about Disclosure.  If you don't know the background of our story, read this post about how God is leading us to adopt a little boy who will be HIV positive.  You should also check out Part 1 of the series about Transmission if you haven't yet.

Disclosure refers to your decision to share or keep private your HIV status.  Some people choose to share only with family and close friends while others, like us, choose to share with the world through the modern marvels of a blog and facebook. :)

Legally, a person's privacy concerning their HIV status is protected by US law.  You don't have to tell anyone about your HIV status (except your doctor).  You don't have to tell a school, a coach, an employer, your church, friends, or family.  No one has to know because no one is at risk through casual contact with someone living with HIV.

However, we are choosing to set down our right to privacy and to share openly about adopting a child with HIV. 

Now this does not mean that we will be putting a bumper stick on our car that says "HIV On Board" or that we will feel the need to share Easton's status with every person we meet.  We are disclosing to our family and friends and people who read this blog.  Aside from that, we will be asking God for discernment in our daily interactions regarding disclosure.  

**Disclaimer**

I have learned that disclosure is a very sensitive subject among families living with HIV and even among people who just have an opinion on the issue.  People feel very strongly on both sides.  (And by very strongly I mean that these conversations can get heated.)

I am sharing why our family is choosing to disclose.  Not what I think every family should do.  

I am not attacking families that don't disclose or trying to make it seem like they don't hope for all the things on my list below.  I know and appreciate that each family has to make the decision that is best for their family in their specific context . . . there is no right way.

So please don't send me hate mail if you think that we shouldn't disclose.  Refer to reason #1 below!

**End of Disclaimer**

10 Reasons Why We Are Disclosing

1.  We are seeking God in every step and have been led by the Spirit to disclose.  We did not make this decision quickly or lightly, but spent much time in prayer and seeking wisdom from others.  It feels right to us, but we didn't even want to make the decision based on feeling.  We asked God to speak clearly to our hearts so that we would know that this is the right choice for our family.  And He has!

2.  The timing of our disclosure is purposeful as well.  We wanted to go ahead and disclose now, even before we know who our sweet Easton is.  This allows our family and friends to begin now to learn correct information about HIV, to let go of misconceptions, and to process their fears.  Our hope is that the fear, stress, and anxiety that disclosure can bring will be greatly reduced by the time Easton comes home.

This will also put the focus on our precious son instead of HIV when we are able to joyfully share that we have been referred a child.  HIV doesn't define him and we want it to be that way from the moment we can share about him!  We'll get to focus more on his cute little cheeks and handsome smile instead of at the same time shocking everyone with news that he is HIV positive. 

Sadly, disclosing now also gives people the opportunity to back away from our family if they won't be able to handle being around our son.  We would rather this happen before he gets home.  As one mom said, "If you can't handle the heat, then don't even come in our kitchen!"  We pray that this doesn't happen, but it would be easier to handle rejection now than when I'm holding my sweet boy.

3.  We I can't keep a secret!  If you know me or read my blog, you know that I don't hold too much back.  At times I can over-share, especially when God is at work!  So it seriously stresses me out to even think about having to keep this a secret.  I would be overwhelmed at trying to keep such a big part of our life hidden from those around us.  Not to mention trying to figure out how to explain all the doctor visits and daily medication.  Bottom line . . . I just don't know that not disclosing would have been possible for our family (and with my big mouth!). :)

4.  There is NO SHAME in living with HIV!  Let me repeat that . . . NO SHAME!

In our situation, Easton will have most likely gotten HIV from his birthmother during childbirth or breastfeeding.  This is through no fault of his own.  And before you look at birthmothers as villians, know that they often have no choice in how they contract HIV, some don't know they are infected, and most have no access or money to get the treatment that could stop HIV from being transmitted to their child.  They are victims too.

We will not for one moment be ashamed to have a son living with HIV!  He is precious, valuable, worthy of love and respect, and a child created in the image of God!

HIV is a manageable chronic illness, but it is often treated as modern day leprosy.  People living with HIV should not be shamed into hiding or treated as untouchable.

Again, just to be clear, no one should be ashamed of HIV, but it still might be the best decision for some families to not disclose.  I'm not saying that families who don't disclose do so because they are ashamed. 

5.  We want to be a voice for those who aren't able to speak for themselves. There are millions of orphans who are infected with HIV and have no hope unless someone speaks to the world on their behalf.

I also know that families who choose not to disclose do it because it is the best decision for their family, but they would no doubt LOVE to scream the truth about HIV from the rooftops!  We will be their voice and will scream it loud! 

6.  We want to share TRUTH and FACTS about HIV with anyone who will listen!  Awareness and correct information is key to ending the stigma and fear associated with HIV.  We feel blessed to be advocates for those who are wanting desperately to not be made to live in shame, or discriminated against, or ridiculed.  We hope that you'll join with us in sharing the truth about HIV!

7.  God has surrounded us with people who are supportive.  I can't think of a better scenario in which to disclose.  Our families are incredibly encouraging and so ready to love sweet Easton.  We have a faith family at Edgewater that truly desires to make disciples of all nations and to display God's heart  for "the least of these."  We have no doubt that our church and friends in New Orleans will embrace Easton and walk with our family.  We also have tons of friends and even strangers who are encouraging us through facebook, the blog, email, and most importantly through prayer.

We don't take this support lightly.  I've heard of families that have had to leave churches and even move because of the rejection received after disclosing.  We are blessed!

8.  We don't want to walk this journey alone.  The road of adoption is already a tough one and adding HIV into the mix will likely increase the stress emotionally, spiritually, socially, physically and financially.  We will need prayer, support and encouragement.  We will need people to cry with us when Easton is sick or when someone is rude.  We will need people to rejoice with us when the virus becomes "undetectable" in his blood.  We will need people to walk with us through the good and the bad.  Jesus is enough for us, but people being His hands and feet can sure make a difference in our lives!

9.  We desire God to use this road not only to refine us, but to refine others as well.  We pray that by sharing all that God is doing in our family, the Gospel will be made clear to those who do not know Christ.  We pray that by being transparent with our lives, God will challenge and encourage His Church to live as biblical disciples of Christ and show His heart to a needy and lost world.

10.  The purpose of Easton and our family living with HIV is so the works of God might be displayed.  We've held tight to John 9:1-3 since God spoke to us about HIV.  We trust God's sovereignty and truly desire for His name to be made know through Easton's life and our journey.  Because of this, we want to share openly how God is at work in our family.  We want to lift high the name of Christ and declare His works to any who will listen.  To Him be the glory!


Again, we realize that there are some who disagree with us on the issue of disclosure.  But we are thankful to be able to share why our family is choosing to disclose about this road God is calling us to walk!

4 comments:

  1. May God bless this little child that you are in effect blessing and saving. May God grant his full healing to this child and may His blessings pour out on you for your faithfulness!

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  2. SO well said (as always)!! Love your heart !!

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  3. Very well said, we our adopting a little boy who is HIV+ and have decided for pretty much all the same reasons to disclose as well.

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