Bill

I was diagnosed overseas and I didn’t want to come back to Australia. I thought that if I got sick and it wasn’t too serious, I might be able to keep it from Mum and Dad, if I wasn’t in Australia. I thought I’d let them down a bit.

I never had to tell Mum and Dad; they went about four years before I really got sick. There was only my brother left and we hadn’t spoken for twenty years, couldn’t stand each other. When my parents got sick, he was so good to them and now he’s done such a turn around, it’s unbelievable.

There was a time when I had to go to hospital and I had to ring my brother and ask him to look after my dogs. We’d started just talking again. He asked what hospital I was going to. I said Fairfield. He said, “Fairfield, that’s where they send the AIDS patients”. I said, “Yes, now the dogs’ food is here and …”. And he said, “Well we better get a case packed for you and get you there, then you can let me know later what’s going on.” You think you know someone – I couldn’t believe it. He knows the situation now as much as he needs to know. He’s so supportive.

Sara

I had HIV for about ten years before I was able to tell my mother. I had told close friends and my brother, but Mum was the most difficult one. Eventually I decided to tell her. It took about a month. She used to come and stay with us and one weekend I wanted to tell her, but I couldn’t speak, I couldn’t get any words out.

About three weeks later she came down again. I sat her down and just told her, “I’m HIV positive”. Ten minutes later we were having lunch. My biggest worry was that I had taken so long to tell her. Obviously she knew something was wrong. She said, “I know that you would never do anything to hurt me.” It was so much easier than I had thought.

Daniel

I think people really feel a need to be able to talk to somebody else about it and so you automatically lose control of who’s going to find out because the person you tell then tells somebody else about it. Before you know it, in a small town, it’s common knowledge. I found that with my employers as well; that while I asked for it to be confidential, it was really hard for them to do that. I had to come to terms with the fact that it wasn’t out of anyone’s malice or evil; people will find out. It’s just human nature that we want to share and unburden.

Marie

In the beginning I blurted it out sometimes when I was angry, or at inappropriate times. That was always a bad mistake because the person would freak out and tell lots of people. To this day I don’t really know who in the family knows and doesn’t know. I don’t really care, but I feel like I’m not in control.

I realised then that when I disclose my status to someone I need to link them in to someone who already knows so that they can talk about me. They probably have questions they don’t want to ask me, or fears they don’t want to tell me about. I felt like I became this big HIV educator amongst family and friends, taking leaflets with me everywhere.

I’ve read that most discrimination has happened in the healthcare setting, as has happened with me. When we’re talking to healthcare professionals we believe that we have to disclose our status – but the only legal obligation in NSW is to disclose to a sex partner. And that’s your choice. We need to protect our own rights as well, every health care professional is taught safety precautions and it’s not our role to educate them unless we want to.

If someone really cares about you as a person it doesn’t matter what you have, even though HIV has such a stigma about it. It’s usually people who don’t know you who bring their own fears and stigma to HIV.

Tai

I didn’t tell my parents until about nine years after I sero converted, when I became sick the first time. It was easy because I don’t live in the same country as my parents [Malaysia]. I told my brother and sisters the moment I found out, they’re western educated and I thought they could take it, which they did.

My parents are quite traditional and I only told them at the very last moment. It felt like a second coming out. I had come out as gay to them very early. I think that’s very unusual for a lot of Asian gay people. When I came out I was willing to lay everything on the line. I was willing never to see them again. In my family we just didn’t like our parents very much really; I suppose if you felt more affectionate to them it would be harder.

My parents took about ten years to get used to the idea of my being gay, but they did. It’s not impossible. I told them I was HIV positive in a letter, so that was easy. Of course I was feeling a lot of pain with that as well. I knew that they would be very hurt, but I didn’t have to face them. But then in a way it made my parents more caring towards me. They would say, ‘oh, don’t work if you’re not feeling well’.
Jim

Most of my friends and my work colleagues know I have HIV, but then I’ve got other friends I’m hesitant to tell. These are gay guys who are out on the scene and make comments that ‘We don’t know any positive people’. That always gets to me and I’ve never told them for that reason. One couple had come into contact with hepatitis, through sleeping with a third party. Their reaction was, ‘It must have been so and so, because he’s a slut’. I thought that’s very strange and we had an argument about it. It takes two to tango.

Gavin

As an Indigenous person my issues are the same as any other positive person, but there are different issues around disclosure. In my home community I’ve started to identify as a positive person now, but I didn’t disclose earlier, basically to ensure that my family in no way would be subjected to any sort of discrimination. Fortunately there are more Indigenous positive people identifying as HIV positive and it’s making it easier for us to be more honest about who we are. Education is getting out to the communities and they are changing and young people are actually quite accepting of it all. All my nieces and nephews know about my status and they’re quite cool with it.

Harry

If I am in a chatroom or anything else, I am upfront about it within the first two sentences. If they don’t respond, I know it is not okay. Once I put up two similar descriptions in a chat room. In one of them I disclosed and the other one I took the HIV bit out. The one in which I disclosed didn’t get anything; the other one was flooded. That says something to me about the way even gay men don’t feel comfortable with HIV, they don’t have the skills to deal with a positive person, or they are frightened.

Telling the children

Marie

My daughter’s eight now and although she’s come to lots of HIV-related things with me and we talk about it, she has never asked me if I have HIV, or why I was on treatments. I’ve been wondering if I should sit her down and tell her, or wait for her to make the connections. I think I’m going to just wait for her to ask, as they do about lots of things and hope that she’s not too angry about it. I don’t want her to know before she’s ready. Children know the difference between good secrets and bad secrets and I don’t want her to feel that she has to keep it in.

Sara

My husband has been ill a lot. We’ve both worried about what would happen to our son if we were to die. He’s seven now. I don’t ever remember talking about death in front of him, but he picked up this fear that we’re sick and we’re going to die. It’s better now because we’re a lot healthier.

When he was smaller we had a dog that we lost. He was quite fond of it and whenever he saw a dog he would get upset and start crying. This happened over a series of a few months and I thought that really he was worried about us.

We’d tell him that we have a bug in our blood that makes us tired and often very sick, but that we are going to be around for a long time. We also talked to him about death and how it is a normal part of our lives: everyone is going to die. I’d tell him I’ll be around to see his children. He hasn’t been so worried for a while now. My husband’s health is better and we’re a lot more settled, so he doesn’t get that fear. He sees that we’re all right, we do okay.