Disclosure

One of the most difficult things you can ever ask of yourself, is to find the courage and the words to tell a loved one that you are HIV positive. It is one of those things that often gets harder the longer you wait, it doesnt get easier.

So, how do you do it?

Well, the first thing to understand, is that disclosure is never going to be easy. You have to anticipate the shock, worry and possible anger that your loved one may display. And of course, always consider the worst case scenario: possible rejection. Prepare yourself for the worst but hope for the best. Understand that he/she has not had the time to digest and mull over the news, and their reaction may be a knee jerk outburst, and not necessarily a true reaction.

Secondly, don't judge your loved one based on imaginery scenarios. A patient once told me that she had been surreptitiously raising the topic of HIV with her spouse. She decided not to disclose to him, because in one of their 'hypothetical' conversations, he had stated that ' I would kill myself if I had HIV'. I explained that this was not fair to him. How many times have we stated things like, ' I dont know what I would do if I had cancer, I think I would die'. When we are dealing with a hypothetical situation, our supposed reaction is also hypothetical, and one that we propose without having to face the reality of dealing with the actual situation. And, so, it is not fair to judge your loved one based on a throw away comment made about an imagined scenario.

hird, work on yourself first. It will be much easier for you to deal with the fallout after your disclosure (be it tears, anger, shock or numbness) if you are at peace with your own status. Acceptance is not an automatic step in the process, for some, it comes quicker than for others. But, it sure will help you to provide the support to your loved one when he/she first hears the news.

To prepare yourself for disclosure, try and imagine the scene: do you want to do it at home or in a public place?
Who will tell them, you or someone else like your doctor?
Are you alone, or have you other people around you like your family or your pastor?
Is it day or night? What day of the week will work the best?
How will you open the topic?
What words will you use?
What reaction do you think is most likely and how will you deal with it?
What if he/she becomes angry or abusive - do you have someone you can go to, a safe place?

Are there subtle ways that you can begin to explore the topic of HIV? For example, watching a program like Soul City or mentioning a newspaper article or discussing a friend who is living with HIV? It is a good way to raise your loved one's awareness, and to get him/her thinking about the issue. However, dont hold him to his response in this hypothetical situation, remember that your question might be loaded, but his answer is not necessarily a true reflection of his reaction to your disclosure.

If it is your child that you are considering disclosing to (be it your status, or hers) it is hard to decide at what age to reveal the truth. In my experience, parents often have a false perception of their child's understanding of the illness. For example, a child who has been ill or is taking medicines every day will reach a stage when she will ask questions about the illness. Why am I taking these medicines Mama, what is wrong with me? When she asks this question, this often the first true indication that she is ready for the answer. We often see this questioning starts at around the age of 7 years, which is usually long before the parent thinks of disclosing.

Parents often don't give their child enough credit and underestimate their maturity and understanding. Children listen and hear, and often will be able to hear the unspoken truth in the silences and the pause. Children who are attending school or watching TV, have an understanding of ARV medications, and may even recognise them.

I had a 13 year old boy who had been on ARVs since he was about 8 years old. He was living with his aunt as both his parents had died. His aunt brought him to me because she could no longer deal with him, he was defiant and had even begun to hit her in anger. I sat down with him alone and asked him about his anger. It became clear that he was incredibly angry with his aunt but did not feel that he could talk to her about it, and suppressed rage was displayed through another channel - violence.

He had begun to suspect his HIV status a couple of years previously. When he had raised the question with his aunt, she had dismissed the topic, or told him it was nonsense, and had on one occasion told him not to worry because it was just TB. Over time, he became mistrusting of her evasive responses to him. So he stopped asking. But he carried the fear and anxiety and all the questions around HIV with him daily. But he could not talk to anyone about it and was aware that it was a horrible secret that he could not reveal. Instead of getting support, encouragement and true information, this young boy's fears and anxiety grew over this shameful secret. When he hit his teenage years he began to rebel by refusing to take his medication. He was angry and bitter and confused and violence became outlet for his frustration.

The above true example is just about the worst outcome a parent can imagine; the loss of your child's trust, the shame he feels living with the secret that is so terrible that no one will talk to him of it, the emotional distress and isolation he has felt while his suspicions have grown.

Disclosure to your child is important, and the earlier the better. When your child reaches an age and starts to ask probing questions, this is an indication that the child is searching for meaning and understanding, and that this child is ready for some, if not all of the truth.

Children respond to honesty, and are often more accepting than adults - they are often unburdoned by the emotional baggage that comes with a stigmatising disease. And they are more sensitive to dishonesty and half truths than adults give them credit for.

It starts with you and it ends with you. I wish you the strength, wisdom and peace you need to tell your loved one.

Disclosure to children : http://www.sajhivmed.org.za/index.php/sajhivmed/article/viewFile/197/135 Book about one woman's journey :http://www.openlypositive.com/what-we-do/books/umzala/ How to tell someone you are HIV+ http://www.safersex.co.za/fact_sheets/200/AIDS%20fact%20sheet%20204%20Telling%20others%20you%20are%20HIV%20Pos.pdf