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HIV/AIDS Blog Central

Enclosed by Disclosure

By Tree Alexander

May 12, 2010

Should we disclose 100 percent of the time?

In the HIV community disclosure is a controversial topic right now. "Tell. Tell. Tell," they say. I feel before we can tell our status we must consider three things: Why am I telling, who am I telling and am I ready to tell.

People reach out for many different reasons. Some for support, some for sorrow. Some for prayer and some for pity. No matter the reason, if it is important to you then it is indeed valid. Should you tell your partner as soon as you find out? Should you tell your bed buddy before you lay down? Should we disclose to our partners 100 percent of the time?

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I say yes because of the person that I am and the work that I do. You may put someone's life in danger; silence really can equal death. Don't think that I have always been so forthright about my status. Stepping out of the "HIV closet" was a huge process and if it wasn't for my support system I don't know what I would have done.

When I found out my status, it was right after my partner (at that time) found out about his. He was completely afraid of HIV and wanted to keep things just between us. I told my sister before I got tested and after I found out, so already I had two people to talk to.

I remember being asked did I want to attend any support groups. The last thing on my mind was going to sit in a room filled with people crying about something that I wasn't fully ready to admit to myself. It wasn't until I broke up with my ex that I start to tell my family and friends.

Some people enter this fight alone, and have no one to talk to. No one's shoulder to cry on and hear the words, "I'm here for you!" Many times these people have little knowledge of the culture that comes along with the red ribbon. Now that I have experienced support groups, I tell everyone I know about some in their area. They are a great resource to find out how others deal with everyday life and disclosure.

When I started to date, disclosure brought a whole new nervousness into my life. I wondered should I tell right away. Should I tell on the third date or should I wait until we are ready to take our relationship to the bedroom. Will they stay regardless? Would they stay because they feel sorry for me and wait for me to "kick the bucket"? Or would they completely dismiss me and tell everyone my secret?

I took a step back and had to think long and hard about disclosure. The main reason why I wanted to tell everyone is for LOVE. I am accepting to everyone and had I met someone and we dated without disclosure -- Falling in love as the months rolled past, until I build up the courage to tell. Thinking they would love me forever with no doubt because we have developed the love for one another -- but I find out that they no longer want to even look at me? I feel in order to find a true person I need to be truthful and throw fear of rejection out the window.

I tell 100 percent of the time. I actually saw one guy toss my number less than 15 feet from me. It didn't hurt, because no matter what his status was, if he or anyone else couldn't handle me being so straightforward about mine, then they wouldn't be the kind of person for my life, period.

In terms of anyone disclosing to family, I think that this should be done when you're mentally ready for their reactions (whatever that may be). Also if you don't trust your family or feel they can handle it, then you should search for support elsewhere. If you feel like an outcast because of your sexuality, just telling your family about your HIV status would not create the balance of acceptance you may be looking for.

You would need to have a long conversation with yourself before you can do that with those you want to know. Let them know that HIV is a part of you and not who you are. Remember self-love comes first.

Thanks for reading my blog -- and if you want to help me get to Vienna for the International AIDS Conference in July, check out my fundraising page!

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See Also
TheBody.com's Just Diagnosed Resource Center
Telling Others You're HIV Positive
More Personal Accounts of HIV Disclosure

Reader Comments:

Comment by: HAGGAR (douglasville, ga) Wed., Jun. 12, 2013 at 3:17 pm EDT
Wow, you put just what I have been say and feeling for a long time.What impressed me was when you talk about dating..it's hard as HECK!! I disclose when I find a moment in the conversation and tell..and being a lesbian is even harder!!! But I never thought of this your way..if a person can't take the truth, why even have them in your life! I just love this. Now I have had long term relationships with women in the past and not it just seems that the well has dried up and I am meeting women who have no idea about HIV and lesibanism and really don't want to find out either.
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Comment by: Marco (Bologna, Italy) Mon., Jan. 30, 2012 at 3:16 pm EST
After being diagnosed positive in October 2010 I told my parents my status but soon I discovered that my mom didn't respect me and told everything to her boyfriend...it was shocking, now confidence and disclosing are very difficult with everyone, even dating and going out with friends aren't easy. Another poz guy did the same speaking of my status with his friends(all hiv negative), I was expecting more solidarity from other poz guys... I'm extremely wary my social life is half destroyed and I'm only 25... Thank you for your post, it gives me hope for the future!
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Comment by: Mike (Jackson, MS) Tue., Jun. 1, 2010 at 10:54 am EDT
"I tell 100 percent of the time. I actually saw one guy toss my number less than 15 feet from me. It didn't hurt, because no matter what his status was, if he or anyone else couldn't handle me being so straightforward about mine, then they wouldn't be the kind of person for my life, period."

Very straightforward and truthful, not only to this jerk, but more importantly, to yourself.

I agree wholeheartedly with disclosure as soon as any part of an encounter starts heading towards sex. I've had those walk away. I've had those say, 'It doesn't matter', only later to discover they has unsafe sex with as many people as possible, a Russian Roulette of sex and hiv.

Luckily, I met my husband on Poz.com personals. From day one, we were in full disclosure. Our relationship did NOT start out with sex. We both wanted something different, something long lasting. We just celebrated our 3rd anniversary of our commitment service, 5 years together.

Being honest is being respectful and loving of yourself. Only then can you handle the relationships of the future. For those not wanting anything permanent, it's still a personal responsibility, if they love and care for themselves, to disclose their status to sexual partners, and do everything possible to practice 'safe sex'. With routine testing, full disclosure, and prevention, one day we'll get a grip on this disease.
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Comment by: WILLYWONKA (Netherlands) Sat., May. 29, 2010 at 5:19 am EDT
I think - of all this, what scares the hell out of me is this comment by (Dan in Australia).....
"If you make the choice to have sex with someone then you're liable for anything you catch - not the person who gave it to you..."
I'm not at all sorry to say; "THAT IS A STUPID IDEA TO SPREAD and comment to make" (even if it were said in jest, which it is not) especially since the community is so full of arrogant men just looking for a nice little mental appetizer (excuse) like that to run a muck and spread their disease more then they already do.
I've actually heard POZ men SAY just that. "if that dumb SOB is stupid enough to let me BB him, then it's his fault if he wakes up POZ!"
Is it any wonder the struggle for respect is so difficult to overcome and attain!?!?!?!
And now, it's broadcast for the world to see!
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Comment by: Dan (Melbourne, AU) Fri., May. 28, 2010 at 9:31 am EDT
I dunno. A survey was done about this here and something like 85% of people expect their hook-ups to tell the truth about their status, while 80% then said they would ditch the guy if he was positive. Anyway, "negative" is so last week - literally. No one can be totally sure they're negative unless they've had no sex for x number of months since the last time they did it, or unless they had a viral load test done since the last time they had sex. And how many presumed HIV negativers get viral load tests?
Finally, the guy who infected me didn't tell me he was positive. But do I blame him? Not for a second. It was my own stupid fault for getting drunk and having sex without insisting on a condom. If you make the choice to have sex with someone then you're liable for anything you catch - not the person who gave it to you - has always been my philosophy.
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Comment by: Habs31 (New York, NY) Tue., May. 25, 2010 at 11:26 am EDT
@Greg

You have a great attitude that will serve you well. The last guy I dated was HIV+. I will never forget the day he told me. I was so proud of him for being open early in our relationship. In addition, once I learned he whole story, I was very touched and still respect him very much. Thus, when you meet the right person, disclosure actually moves the relationship forward.

OTOH, since when meeting someone the early days are so important, by being guarded about your status can really put a lid on things. When I first met Jamie, I remember him being seeming very nervous at times. Interestingly, our second date was on Worlds's AIDS Day. His lack of disclosure also meant he had to continually tell small lies. For example, he literally walked out of a restaurant on me because I merely asked him back to my place. He was "offended." He made excuses for me not to visit him at his place. I even thought he was seeing somebody else but this was not the case. All very sad.
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Comment by: Greg (Chicago IL) Sat., May. 22, 2010 at 7:34 pm EDT
Excellent article. Great responses! Disclosure is a very difficult thing for me, but I find that, if I want to move forward with bigger issues surrounding the possibilities of navigating a developing relationship, I prefer to get HIV status out of the way very early on--especially with someone that I think I'd like to really date, and whom I hope I can build a relationship built on trust. If the other person can't handle my poz status, I'd rather know up front, so that neither of us waste our time and energy under false pretenses. I have a small group of close friends (extended family) who know my status and who provide a great deal of support. And, despite having known I'm poz for 5 years, I've only recently begun to get acquainted with local poz organizations/ advocates who are really amazing. That helps too! I think deciding whether to disclose in general is a process that everyone has to work out for themselves. However, I also think that disclosing to someone that you're in a close intimate (sexual) relationship should happen soon after you find out. It allows them the same opportunity that you have to take it all in, get educated, shed a few tears, and then move forward with their lives and their health care.
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Comment by: Rich (St. Louis) Sat., May. 22, 2010 at 8:12 am EDT
Thanks for the timely post. For me anyway. I will celebrate an anniversary this year with a coming out. In August of 1985 I tested positive. 25 years ago.

I have burried many friends and my soul mate but I am still here, and I'm healthy. I'm finally at a place in my life that I feel capable of coming out to my friends, my church and even my family. Not only capable but obliged. Today, all these years later, there is still so much stigma attached to this disease.

I have surrived so much. I have accumulated so much experience. I feel obliged to share it. If I don't I feel it will go to waste and there in lies the real tragedy, for me anyway.

I agree with you 100%. Timing is everything. And my timing is all that matters. I have to know I'm in a safe place to do this and be absolutely sure of my reasons.

Thanks again.
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Comment by: Habs31 (New Yrk, NY) Wed., May. 19, 2010 at 9:53 am EDT
@John - I did not let my experience with one person affect my attitude towards all Poz persons. In fact, after Jamie, I dated several Poz individuals, including one for whom I still have the greatest respect. That relationship ended primarily because I was living overseas and needed to return home for open-heart surgery. Thus, my own health issues, while different, are severe and keep me connected with all those facing health issues f any kind.

Regarding Jamie, I haven't spoken to him, although on several occasions I started emails that I never sent. One person whom I respect very much gave me some great advice. Basically, the real issue was not the disease, but the person. I was very open, kind and considerate toward him, yet when I was facing a serious life crisis, he cold-heartedly rejected me. Plus, since online I accidentally learned more about him than ever in person is telling of deeper issues. I still care for him and pray he finds peace.
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Comment by: John (Long Island, NY) Tue., May. 18, 2010 at 1:33 pm EDT
While I am guarded in work and social situations, I fully disclose early in romantics ones. Trust and honesty are the foundation of a relationship. Hab31's story is a lesson for all. A budding relationship ruined by lack of disclosure. Too often we focus on our own suffering forgetting those without HIV have there own issues. To Habs31, don't let one bad experience affect your opinion about all of us. You did the right thing when confronted with an HIV scare. You honesty obviously scared him. To the rest of us, think about the effect of our actions. Being HIV+ is no excuse for hurting others. Habs31, did you ever confront the guy?
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Comment by: A friend in need (Memphis,Tn.) Tue., May. 18, 2010 at 9:44 am EDT
Thak you brother for that kind and honest blog,Ifelt the same way when I first found out,but I had to get over that stigma and realize this is my life andI want to live and be happy.Thanks a buch for those kind words your blog is what keeps me going strong daily
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Comment by: liz (kenya) Tue., May. 18, 2010 at 7:42 am EDT
It takes a lot of courage and soul searching to disclose one's status kudos. You have given me the courage that i needed especially when it comes to relationships.
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Comment by: GermanStudent (Hamburg, Germany) Tue., May. 18, 2010 at 3:05 am EDT
Dear Tree,

thank you so much for your blog! That's exactly how I feel lately. It is hard to get rejected, but the earlier you know, the less you get hurt, i guess. Life hasn't been easy lately and it is hard for me to figure out, when to disclose and to whom. Should I tell people about my status, when I don't think there is more than friendship coming up, instead of a relationship? How will they take it? That's what I ask myself always. But my biggest fear is to be alone in my life. I want friends and a pratner. And right now, that I just moved here, I don't want everybody to know about my status. For example, when I was dating that one guy, he was doing ok with it. But when his closest friends found out, they were fighting while we were out and everybody was down after that. I went home crying. Now I want to wait until I disclose. But I'm always unsure about that. So, right now I'm trying to find the right way to handle things. Your blog made me even more think.

Thank you so much! Wish you best of luck for Vienna!
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Comment by: Habs31 (New York, NY) Fri., May. 14, 2010 at 12:14 am EDT
About a year ago, I began dating a guy of whom I became very fond. I sensed some issues about him, but to be quite honest, my own situation was complicated due to health and other problems.

Work stress led to major depression, from which I was finally free. However, I was bother by all other health problems. I was rapidly losing weight. I had just gotten over an upper respiratory infection but was still bothered by nearly constant diarrhea. I was straightforward about all this.

Sexual activities were on the damper, but both of use wanted to more slowly anyway. I felt I was getting to know somebody.

When my health became an emergency situation, he was there for me and provided support. Naturally, he was concerned about the diagnosis and I was faced with a problem, since the doctor's real concern was that I had an HIV infection.

Since "Jamie" and I talked about openness, I decided to tell him what the doctor told me. I assured Jamie that as of my last test, I was negative and apologized for dating him without absolutely knowing my status.

The next day, I received and email from him saying that he only wanted to be friends. I was taken by surprise and very hurt. I was also angry at myself for telling him, thinking I should have waited for the test results. My last email to him was never meant to be such, but fate intervened.

I was never much for online dating, but being bed-ridden, I needed something to do.

A friend recommended a mainstream dating site. There, I was surprised to find an active profile of Jamie's. From it, I realized Jamie was HIV+. I was crushed.

I really cared for Jamie. His withholding his status from me meant a relationship was doomed from the start. He also shattered all my values as an AIDS activist. My depression returned; only now am I fully recovered.

I have no idea why he did not tell me, given my openness. All I know is that his status would not have mattered.
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Comment by: Mike (DC) Thu., May. 13, 2010 at 3:12 pm EDT
Yes, it's best to disclose up front. Yes, it feels like outright rejection, but it's better sooner than later.

I'm there all the time. I disclose perhaps too much, but I switch (mentally) and use it to protect myself.

Be at peace with yourself.
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Comment by: Thu., May. 13, 2010 at 2:39 pm EDT
Tree,
As always, this is a wonderfully written blog and worthy of consideration. I agree that self-love is the motivation of "disclosure 100% of the time". I mean, particularly, to a conceivable partner or someone who one is going to engage in sexual activity. I do think, fear of rejection is a major factor that hinders this. I also believe that having the 100% disclosure mindset mediates that fear of rejection. So, I am hopeful that many will decide to disclose before engaging in sexual activity. I am so glad I disclosed to the man I am very interested in.
Keep up the great work!
kirk
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Comment by: Mimi (Long Island, NY) Thu., May. 13, 2010 at 2:03 pm EDT
I like what I have read here!!! Congrats on finding your place in the world!!! I choose to disclose only if I feel my relationship is going to go beyond friendship....if you are going to be just friends I fell there is no need of discolsure. I have told my family because without the support of my family it would be very difficult to deal with the HIV. There is a catch 22 in disclosure...you really have to discern very carefully when letting people know of your status. I have gotten reactions of all kinds. I don't take it to heart because many people cannot handle the news. I am doing quite well. I take my meds and go to every single doctors appointment. I love life and I love me so I plan to be around for a long time. For those that are not sure of how to disclose get with someone you can trust or speak to your doctor and get some light shed on this issue. Your life and the person you plan on being with life depends on it. I enjoyed this blog. Have a Blessed Day!!
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Comment by: Linda Phillips (Charleston, SC) Thu., May. 13, 2010 at 1:53 pm EDT
I acan truly identify with what you are saying there are still times when I struggle about when to disclose. Rejection is still a very sensitive and touchy subject although I may not want to admit it, but then I thought what if you become attached to someone and then disclose it seems easier to be up front from jump street rather that prolonging and proccarstinating about disclosing. I have found an HIV/AIDS Positive site and taken the chance of trying to meet someone special although I dont belive that it is necessary that I date someone Positive, who knows what the future holds
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Tree Alexander

Tree Alexander

Tree Alexander, born in Chicago, Illinois, now living in Brooklyn, New York. HIV-positive AIDS activist and Case Worker. "I am the change I wish to see." Motivational speaker and youth advocate. Tree's target is to empower the youth and reduce stigma. Tree found out his HIV status one month after he turned 20 and HIV has changed his life completely. Tree travels and tell his story, letting people know that if we continue to conceal and fear this disease, we shall never overcome.


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