Why it’s so hard to tell you that I have HIV…

…because I am frightened of how you will react.

…because I risk so much by telling you.

…because it is very painful for me.

…and yet it is so hard to live with this ‘secret’.

…and I think you would find it hard too.

…because I am frightened of how you will react.

The majority of PLHIV that we spoke to did not want to tell anyone they were HIV because they were frightened of their response. How will they react? Will they no longer be my friend? Will my family disown me or kick me out of the home? Will you shout at me and reject me?
Most PLHIV take great care to protect others from infection. For these individuals it is the people who are not HIV positive that represent the threat: what will you do to me when I tell you?

Who knows how many people went through abandonment: by the family, school, workplace, who knows what else. After someone else’s experience that (telling someone) is always painful, because all of us have sometimes heard of someone else’s painful experience, there’s no one who’s a member of the PLHIV community and hasn’t heard of such an experience. So there’s this fear…(Saša)

I do understand human fear. If I was to test it and I don’t recommend it to anyone maybe out of them, I don’t know, 23 would react normally and would not reject me but I’m convinced that 17 would because I had an opportunity, amongst everything else to talk to them about these issues and when you mention it people are appalled, name calling. Among them are medical workers and they do most of the name calling. (Stefan)

…because I risk so much by telling you.

There are many people whose fears have come true when telling people:

I told her everything. I thought I’d tell her first, then she could tell mother, but explain it all nice, because I thought being a health worker she might give mother a gentler [introduction]… Actually no, she said to mother like: “Hey, he’s AIDS!” And my mother was in shock when she heard it. I mean, she didn’t help at all, but she did me harm. Then the rumours started, like I don’t know… like all sorts of things. (Ivan)

His ‘friend’ told many people about his condition. Afterwards his mother did not want him in the house. He had to leave home and his family.
When Branko told his family they made him move out of his home and live alone. He was fortunate to be given accommodation alongside them, but they would not share their lives with him.

My parents when they found out I had HIV, and we used to live as a family, my dad, mum, me and my younger brother, they separated me right away so that I don’t live with them, so as not to live in the same flat – not to have the same bathroom, not to have the same toilet, not the same kitchen... It’s [the situation’s] still the same. Since 2001, and now it’s 2007. (Branko)

There is also the risk that accidental disclosure will have negative social and employment consequences for the family. PLHIV often keep it a secret to protect those around them.

Look, my biggest problem is that people [would] point their fingers at my parents, my brothers. I knew from the start that I could not forgive myself if they suffered because of me. I would speak publicly about the problem, however here, no, no, no. I simply can’t do this to my family. (Nikola)

Dragana, on her way to the hospital for treatment told the bus conductor that she was ill with HIV. The response of the passengers on the bus was to literally run away from her.

I didn’t have enough money to buy the ticket for the public transport and the controller came in and I told him, “Sir, I’m sorry, but I really don’t have the money, I’d buy the ticket if I did. I’m HIV positive and I’m on my way to get treatment in XXXX.” He ran away from me to the farthest part of the bus, he didn’t come back, and suddenly, ‘cos I said it loudly the whole back of the bus was suddenly empty! I’m not saying I was alone, there were a few people left, but a lot of people either went out or went to the front, as far away from me as possible. Like: “Aah, she’s AIDS! Look who we’re on the bus with!” I hear people comment – “Buy a car and don’t be on the bus!” (Dragana)

Ivan was in a pharmacy collecting a prescription when he disclosed that he was HIV positive:

Yesterday I went to the Health Centre in Novi Beograd to get some pills, I forgot to ask the doctor who gave it to me if there were any problems because I’m HIV positive and I have tuberculosis, and I asked the girl at the counter like: “I’m sorry, is there any problem if I’m taking TBC treatment and I’m HIV positive?” Like, everyone’s looking at us as if we’d killed someone… (Ivan)

Telling people is seen as a huge risk. The response can be very unpredictable.
As Ivan says ‘You’re always scared… you never know the effect.’
The consequences can be devastating. Disclosure can result in losing your family, your home, your job and your dignity. ‘In 90 percent of the cases they don’t look at you anymore.’ (Branko)
Even so almost everyone we spoke to still fears the response when they tell someone. ‘They won’t even sit and have coffee with me’. (Nina)

However quite a few of the participants were pleasantly surprised by the response of those close to them. The subsequent support they have received has been invaluable.

…because it is very painful for me.

In addition, to worrying about how disclosure may change someone’s relationship and behaviour to you, telling someone else in itself can be very painful. Telling someone that you have HIV requires acknowledging your own loss and the losses for those you care about.
This is particularly so when they have been recently diagnosed, before someone has adjusted and come to understand that there can be a lot of living after being diagnosed.

It’s something very personal. You know, it is up to you. For example, if you lose a child it’s up to you if you want to tell to somebody who is very close to you about this loss. So it’s the same, it’s difficult to speak to you about my loss of normal physical and mental condition… You are not sure how you will react or they will react… so you can have this defence system, and you will be closed. (Mašan)

…and it is also so hard to live with this ‘secret’

For a few the risks are too high, so they do not tell anyone. This is not because they want to deceive anyone but because they do not feel they have any choice. It is important not to underestimate how hard it is to live with such ‘a secret’.

And they feel that- they have a secret. It’s very, very… can you imagine that you have to live now with some secret, you know? For example you work somewhere, or you go… if you are outside in this world then this secret is in front of your eyes much more, you have to be careful about it, you know. For example, if I could work in a school and among parents and children and my colleagues and everything, you know, and living in this fear every day that… someone will somehow find out what is going on with me. I hate secrets, it doesn’t matter what kind of secrets you know. I don’t have connections with people who don’t know about my illness, because I didn’t want to tell, I couldn’t tell everybody, I didn’t want to tell everybody… Maybe it’s cowardice or something like this, these are people which are very nice to me and I love them but it’s a… Not that I’m not so close to them, they love me, you know, but I didn’t want to complicate this situation which is complicated enough, you know’. (Neda)

What happens if I fall down in the street, why can’t I tell anyone what’s wrong?! Why do I need to hide, why?!… ‘I want to say what’s wrong with me, I want to say and I don’t have the possibility to tell people what it is! I have the possibility, but I don’t have the guts to be like that around people: “Hey, you know, I’m this! Now if you have the balls sit with me!” (Tanja)

…and I think you would find it hard too.

Imagine that you find out that you have a serious illness – and are dealing with your own reaction to that – then telling someone knowing that once you tell them they may reject or abuse you when you most need support.

When we have a workshop and training, I always tell all participants – go home, tell your husband and your children that you are HIV positive. Then you will start with one very hard period in your life and just feel maybe for a second what it’s like… they are very scared about this. They become very serious and they are very sad when I tell them about it. (Mašan)