Before we talk about disclosure, you must understand a few things. One, that the world (as a whole) has already built its position towards the HIV/AIDS subject. Every culture and every race, religious group and creed and ethnic grouping has its view of this disease. And each and every person comes to the table with their opinions and preconceived notions about how you get it, what you did to get infected and how things are going to be now that you have it. Before you even open your mouth to disclose, your head is already on the chopping block.
I knew many years before how things were going to be with my parents. Before I ever knew that “gay” was different, I had already seen and heard everything my parents thought, believed and taught their children about homosexuality, so I knew when I called the family meeting to “disclose” my diagnosis to everyone, I knew already what they thought of “us” as a community, and I as their son and a gay man. My battle was all uphill and ended in contempt, resentment and eventually silence.
Let us begin.
Disclosure is the $100,000 dollar question. Who do I tell, When do I tell them, and How do I tell them. You know what? In the beginning, don’t tell anyone, until you have had time to “hear” what has been said to YOU, and you have taken ample time to let your diagnosis sink in to your head, and make damn sure that you have made the decision that you are going to either wait to die, or that you are going to fight to live. There is only one decision you have to make right now, and that is to live, and fight, and hope and learn.
My advice to you, in the beginning is this, “Tell only those you must!” If you follow that train of thought, then the rest will come in time. You do not have to rush into telling the entire world that you have just been diagnosed, because if you do, whatever comes back at you – you will have to deal with and you know what, it isn’t worth the trouble. Because when the chips fall, this disclosure will show you just who really cares and who doesn’t and if you are not ready to deal with this fact, then keep your mouth shut. Disclosure is fodder for the local gossip mill, so if you don’t want to be the center of the coffee clutch folk, then don’t tell anyone you don’t need to.
I was diagnosed in the mid-nineties, and ignorance was bliss, and people were reacting because of the fact that people were not educated, and rationality was practically non-existent and people were gripped by such “fear” that it was impossible not to be affected by those around you or by pressure from religious groups telling the world that “Aids was God’s punishment for our sick sexual practices.” But we know that AIDS is not just a gay disease. This fact will be repeated throughout this reading.
In those years, disclosure was always preceded by speculation and gossip. I used to be able to “see” people with AIDS at fifty paces, these days that ability is not as easy to apply, because the signs of AIDS have changed, because we are living better, and with the progression of drugs in this field, the pall of death is not as prevalent as the one signifier that foretold the general public that you were sick.
Recently, well, in the last little while, I have come to know some people who are inside their first year of diagnosis and this question has come up. One has to be very careful about who you tell from the get go. Because you know, that people talk and gossip is a very hurtful aspect of human societal existence. Most of the world functions on the misfortunes and sexual practices of the every day human and no one is immune to this fact.
If you tell one person in the beginning, you can be rest assured that from that one telling is that at least 10 people will get this news from that one person. As you know people love to gossip, with no forethought about the person they are talking about. Not many people think about the emotional and social damage they do to those of us who really are sick, and are looking for a foothold after receiving this news from doctors. This gossip line will extend itself exponentially, depending on how many people you tell to begin with.
I watched families fall apart after learning that their sons or daughters were diagnosed with AIDS. I watched landlords toss tenants out on the streets because they would not rent to people with AIDS, because of peer pressure and sheer stupidity. I saw people shrink back from hugging friends and lovers and distance became the norm between people. This is the worst case scenario, and I saw this occur with my own eyes.
When I told my boyfriend that I was diagnosed he had a nervous breakdown, the men and women I called my friends, became strangers, and my family began to exclude and punish me personally. And my mother was a health care worker for years before this ever happened, which totally blew my mind, and broke my heart.
My parents were children who never grew into the world; they were victims of the “brainwashing” of the American social gospel of the time. Homosexuality was a sin, and was an abomination in the eyes of God, and those diagnosed with AIDS got what they deserved. Like I said in the beginning, AIDS knows no boundaries, or social class, or racial grouping. It is no longer a “gay” disease; it is a world “EPIDEMIC.”
It is sad because of the fact that the straight community suffers the same “stigma” that we did and still do. And I have to say it is only fair for you to understand what we felt, because of the way the heterosexual community treated the gay populations all over the world. The heterosexual community judged us and treated us badly and you did not take the high road, many of you took the low road, and you caved to the social and religious gospel of your communities and societies, and you burned bridges where you should have been building them.
This problem did not only come from the heterosexual community, it also came from within our own community. The Gay men and women who were diagnosed also suffered ignorance and exclusion by our own brothers and sisters. I would hope that this ignorance has been replaced by education, compassion and understanding.
Which brings us back full circle to the one hundred thousand dollar question? Who do you tell? Let me ask you a question first? Are you ready to cope with your diagnosis rationally? Are you ready to play 20 questions with each and every person you tell, because you know damn well, they will start with these off the top?
Who did you have sex with? Do you know who infected you?
- Why were you so careless? Hence it was your own fault!
- How did you know you “had it” before you went and got tested?
- Should I worry about my own health, (if you had been involved sexually)
- Did you use dirty needles?
- Did you infect anyone else?
- What will “the family” say! Oh the drama!!
- What are you going to do now?
- I don’t know if I can be friends with you any more!
- I think we should break up, God Forbid my friends and family find out.
You see, my husband has chosen NOT to tell his parents this little secret about me and we live with this secret each and every time we go to visit, you know, the hidden pill bottles in the suit case, the sidestepping health questions, we NEVER discuss my family at all, lest I tell them the entire long drawn out story! And that is one thing that I don’t want or need to worry about, let alone my husband. Sometimes, things are better left unsaid, you know.
What happens if your parents don’t know about you, if you are gay? That opens up many possibilities of resentments, in today’s day and age, gay men and women and successively the youth of the world live under veils of secrecy with their families because of the “toss out” factor. Parents still treat their gay children with contempt, anger, frustration and some parents even send their children to “reassignment camps” to try and “change” them into heterosexual boys and girls, because still in the year 2006, “gay” is still unacceptable.
People are forced to deal with the silence then say anything about being gay and then God forbid you get sick. I have known men who have gone to their graves with that secret because they could not bring themselves to disclose their homosexuality and add to that an Aids Diagnosis to their families.
There were a few funerals that I had attended that were scripted down to the burial to make sure that the parents and family never heard the word AIDS come from anyone’s mouth who had attended that particular funeral.
I have a friend who is straight; he is a young and beautiful boy, who made some serious mistakes with his life. He never crossed the sexual line, he is an addict and alcoholic, and on a bad day, he shot up, and his life turned on a dime. He called me the day before he left the country to say goodbye.
A few months later I got an email and in that email I read these words “Hello, I am sick, I was just diagnosed with HIV, and I don’t know what to do, please help me.” He told his mom and his tight circle of friends, to this day, he still struggles.
Disclosure also carries with it the fear of breaking the unspoken social, ethnic and racial taboos. I have found across the racial divide that AIDS is something that “we just don’t ever talk about!” We still practice guilt by association. Racial groups still treat their own with a perfect execution of racial exclusion and separation. It was always believed that AIDS was a “White, Caucasian, Gay disease.” How wrong that belief “IS.”
If you belonged to a racial grouping, there was only one way you “got it!” And if you “had it” then you were ostracised from your community and family. Sad, that families would rather kick their sick family members to the curb, rather than love them and care for them, as if they were human and created by God. But, I would be remiss, if I did not say that there are “miracle families” who did not turn their backs on some. And I would hope that this was becoming a norm and not statistical speculation.
When one is diagnosed with HIV or AIDS, there is so much to think about while you begin to learn how to cope with your own illness. That is why one has to first take care of themselves, before you can begin to look at the bigger picture.
Disclosing the news to the world around you is like throwing a rock into a pond of flat water. Each ripple moves outward from the center in varying degrees of impact on the shores that they will eventually hit.
It is important to keep this all in perspective, lest you fall into the pit of insanity and taking care of yourself becomes a path of self destructive behaviour, which could lead to addiction, pain and suffering and in the end, a very miserable death.
Fear is the path to the Dark Side…
Fear leads to Anger
Anger leads to Hate
Hate leads to Suffering
(Master Yoda – Star Wars)
You are the focus of this writing, what goes on within your social circle will follow its own evolution. You are not responsible for anyone else’s life but your own. You are not responsible for how people will react to you with the knowledge that you are sick. We are not responsible for other people’s choices. We all have a choice, which is why it is important that you make wise choices from the beginning.
Once again we come a recovery thought that “what people think of me is none of my business” and once again you say that this is easier said than done and once again, you are correct. Behaviour is learned and can be unlearned if you work diligently at it one day at a time.
You must have at least one ally in your corner that will stand with you, as you venture into the disclosure stage of your personal evolution. And some people don’t even have that, which is truly sad. It takes a village to care for someone who is HIV positive or has AIDS. I truly believe that I could not have done this alone and I will tell you right now that you will not survive if you try to conquer this mountain alone.
There is a path to follow, and the only way that you are going to find it is to come and look for it. Don’t go out there into the world without some very specific information, because you not only have to deal with the reactions of who you tell, you will be forced to deal with their own baggage of religious, ethnic and personal beliefs on the subject. At the time of disclosure, this becomes an issue about “you” and not “them.” And they must understand that.
It is difficult having to tell someone that you are sick after spending years in a family building relationships, you make friends in the world, and as well at work and school, and at some point you come to a cross roads, you have watched these people live and react to other people and issues. You know, full and well, how they think and what they believe, and now you have decided to have “the discussion” with them. And if you are like me, in any way, shape or form, you have already had this discussion in your head before hand.
You have scripted your conversation and you think you have all the answers you need to have prepared, I did that. But, you never know, really, how they will react until you tell them, and you have a 50 – 50 chance at a positive, supportive response from them. So you go on your gut instinct and you hope for the best, and I warn you now, before you say one word to anyone, be prepared to have them walk away and not look back. This is a very sad truth I have to share with you.
You need to know the answers to questions about AIDS and HIV before you disclose to anyone, so that you can pain them a picture that is easier to swallow, and may help you strengthen the relationship you have with that person you are talking to, because they are going to have a hundred questions for you before you leave that meeting.
And if you get overwhelmed, then you may find yourself having to defend yourself to them. In some cases “what about them” becomes a discussion that I call “what about you?”
If I invest time and emotion into a disclosure discussion with someone and they go off on a “what about me” rant, then I know that I have to stop them and remind them that “this is not about you, this is all about me.” For the most part I find that people are not able to take that hard stance from the get go, like I said Behaviour is learned, the more you practice the better you get over time.
Once you disclose to one person, that ally that I spoke about earlier, you can talk about the next conversation you plan to have. I always err on the side of caution, and if you take that tack, then you won’t go into this next conversation without some support and all the ammunition you need to get across the battlefield of discussion. I make this out to be a war of words, and for some it is. Let us not gloss over the facts and the history of the thousands of stories that I have heard over the last 13 years, and blow them off as just “stories.”
So who do you tell? You tell only those you must. When do you tell them? When you have fully thought through the words you heard from your doctor or clinic worker, and you have made that One Very Crucial Decision, “that you want to live!” And finally, how do you tell them? You find a neutral place, DO NOT disclose in your “sacred space” that place that you call your own. Because that memory will haunt the place you live in if you do.
It is important to create for yourself a safe buffer zone where you reside and rest your body and soul. If you have to, write out what you want to say on a set of note cards, so that you won’t loose your place within the discussion and that will keep you on track, so to speak. First, before you do any of this, you must pray or meditate, and connect with the universe, so that whatever you believe in will stand with you. There are no atheists in the foxholes. I will speak more about this topic later on. Just stay with me here.
Bring your ally along with you, if you think that they will help you stand strong. And you just do it. Look, we need to talk, I have something to tell you… then you throw a Hail Mary pass and hope that someone “up there” catches it. There is no set script, for this discussion, it is going to change for each person you decide to talk to.
This discussion will set apart the men from the boys and the girls from the women. It will test your resolve and truly show you who your family is and who your family will become. And sadly, this will also show you who your real friends are, like I said earlier, be prepared to speak your news, and have that person or persons walk away and never look back. Better you be prepared for the worst, in the hopes that it will not happen to you, like it did me.
When you have decided that you have done what you need to do, and you find out who is still standing with you after the dust settles, then you gather your horses and carriages and you rally around each other, and you build your fort. You fortify your boundaries and you take your stance and you stand for what you believe in. You draw a line in the sand of life and you stand behind it and you may be standing alone, or you may be standing with a few fellows, in any case, you must stand up and believe that things happen for a reason.
And like I said we don’t always get the answers we want, but we do get the answers we need, and you have to deal with that fact, from the get go because expectations are just pre-packaged resentments. Just because you have disclosed some information, does not give people the carte blanche to start running your life, scripting your visits and or sticking their noses into business that has nothing to do with them. And I am militant about that. How many people do you know from the outside have any idea what you are going through and how many of these people are still going to be standing with you when times get rough?
When you disclose your sero-status to someone, you invite them into your world, so be careful who you invite into your social circle, because they may be friends and family, but, like I said, this about your life and the living of it. Even if you don’t invite the general public into your life, we as people with HIV and AIDS are already on the radar of many religious, opinionated, and socially repressed people. We are not immune to the words of strangers. You will find the longer you walk this road, you will have to choose your battles wisely, once you disclose. If you can’t stand on your own and defend the person you are, then you make sure that there are others in your circle that can and will.