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-Story 3
I can't control my HIV status but I can control my quality of Life.
I got the diagnosis on the 29th January in 1996. I contracted HIV in the middle of 95. I had a boyfriend who I believe knew he was positive. But, he kept telling me he wasn't and that he'd been tested a few months before we started going out, and he'd tested negative. I'd only had two long-term relationships before this guy. I found out in around 1997 that the whole time we were together he was a male prostitute. All of his clients were male and he wasn't using protection with anybody. The person who infected my boyfriend apologised just before he died. He had been living with this guilt. It was someone that I'd not been a good friend with, but we had a really good repartee with each other when I was working at the bar. I never blamed him: it wasn't his fault. You know, my ex, made his own decisions, he made his own choices.
Before I even went for my test my ex stopped coming around. He couldn't cope. He started telling everybody that I was positive and that he wasn't, and he only went out with me because he felt sorry for me. After I was diagnosed I told one friend. There was obviously something wrong with me and I was crying all the time. She came across as being very sympathetic and I'm there for you sort of thing, and then she went running off and told everybody in the room what I'd just told her. So, that was pretty devastating: the choice was taken away from me to tell people. Within about a month everybody knew that I was positive. I got some bad reactions from people who used to be my friends. People actually crossed the street to get away from me. People, who used to hug me, would shrink away in horror at the thought of me touching them. Yet, at the same time, there were people I didn't know very well who came to me and said: "I'm here for you".
I got very mixed reactions. The good reactions came from places I really wasn't expecting. Strangers would yell things at me from across the street. It all came to a head one Sunday afternoon. I was walking down the Corso, it was a beautiful sunny day and there were families everywhere: I walked past a restaurant with tables outside and someone threw a plate of food at me. It hit me square in the chest and then, not even ten seconds later, this guy rode up behind me on his bike with a surfboard and he hit me in the back of the head with it and rode off. It really freaked me out so I ended up moving. I couldn't bear to be there anymore. I was the butt of gossip. I didn't feel safe anymore. So I left and dropped out of society.
It was a really dark time. I couldn't actually look at myself in the mirror because I didn't see myself anymore. I just saw this really distorted version of me. I used to cover up the mirrors with sheets and blankets. I felt I was waiting to die. I felt like I'd been murdered but I wasn't buried yet. I was walking around having this half-life. I had a counsellor who didn't help me very much. I was actually told that I had ten years to live. She perpetuated that theory.
Negotiating my relationship wasn't easy...
Meeting my partner was a huge step for me. I'd actually lost my sense of my own sexuality. I felt dirty and I shouldn't be allowed to have sex. I was under the impression that I wasn't allowed to have children. It just all seemed really futile and pointless.
I met my partner in 1998 and we've been together for eight years. I was quite healthy when I met him because I'd been going to the gym and looking after myself.
When we first started going out he told me he wasn't going to use condoms with me. He didn't want me to feel any different to any other woman. I would actually avoid having sex. I would make excuses to not have sex. I didn't believe that I deserved to have a good relationship. I did everything in my subconscious to destroy the relationship. How he managed to put up with me for the first four years that we were together I'll never know.
I met a couple of positive women who don't have sex anymore. One of them hasn't had sex for 15 years because she cannot bring herself to open herself up to a man. So. I mean I dread it if we ever split up because I'd have to go through all that shit again. Not only would I be a single mother, I'd be a positive single mother and to have to go through all of that dating and explaining, I get exhausted just thinking about it.
A secret that I don't tell everyone
I have this secret that I don't tell everybody. An example of that is the mothers' group that I go to. When my son was born in 2000, when he was three months old, the local baby clinic rang me and said: "We've got a mothers' group, do you want to come along?" I said: "Yes". I was really scared of the mothers finding out. Gradually I made really good friends with a few of these women. . However, I constantly avoided meeting them and going out with them. They'd invite me places and I wouldn't go. I'd make excuses not to go and then it occurred to me one day; it was because I had this secret that I was hiding from them. I wasn't being completely honest with them. One day I'd had enough. I thought to myself, I have such a great deal of respect and love for these women and I really want to be friends with them, but I cannot keep this to myself anymore.
At playgroup one morning I gathered them all together and said to them: "Could we get together tomorrow there's something I really want to have a talk to you about?" Anyway we got together the next day at the park. We must have been there for about an hour and a half and I finally worked up the courage. I said to them: "You're probably wondering why I asked you all here" and then I started to cry. After a while I said: "There's something I haven't been completely honest with you about for the last three years, I'm HIV positive." They went dead silent and I couldn't look at them. Then one of them breathed the loudest sigh of relief and she said: "Thank God for that, we thought you were into network marketing." We all burst out laughing and it really broke the ice. Then they asked me questions and I told them a bit about myself and what HIV was about. I came away feeling like a million bucks because they accepted me, and it hasn't changed how they've been towards me. They've told their husbands and they don't treat me any differently. They're all very respectful of my life and my privacy and they haven't told anyone else. So that was a huge turning point for me because I realised, after having lost so many friends in the past, there were people out there that would still accept me.
HIV changes everything in your life. It affects every single aspect of your life
HIV has become normalised. I don't believe scare tactics work anymore. We're too numb. We see horror on the news: we see horror on TV shows. I think now, it's about showing people the other side of HIV. Yes, I'm living with HIV. In fact, if this hadn't happened to me, God only knows what sort of life I would have had. I wouldn't have these beautiful kids, I wouldn't have this fantastic relationship, I wouldn't have any of the things that I have. But, on so many levels I cannot appreciate or enjoy these things because there is always this level of fear I live with. Having this thing hanging over me where if I get sick, if I get a cold, the whole time I'm terrified. You know, is this the point in my life where I'm going to start deteriorating?
These days, it is no longer so much of a physical deal but it is still an emotional parasite. It completely and utterly destroys you emotionally. The fact has not changed that there are still people out there who will treat you badly because you have HIV. There is still discrimination and that's a global thing. I mean there are countries in the world that I am not allowed to go to. I have to lie to go to these countries. You know, I can never go on a reality TV programme; I can never be on Survivor.
I'd love to be on Survivor. but, you know what I mean, there are so many doors that close in your face because of this one little change in your physiology. Regardless of how well you live with HIV, it still has such a great affect on your life. There are so many areas where it has an impact. I think we fall flat now because of the focus on the medical side of it. HIV is the most emotional disease. It has such an emotional impact. You know it is so much more effort to see the joy in life. It is so much harder to make an effort to motivate yourself to do things. Most human beings are emotionally fragile to begin with and then you add this into the mix and it can devastate you.
Telling my children - how do I know when they're ready?
I'm at that point now that HIV is not the first thing I think about when I wake up. I don't think about it too much during the day and it's not the last thing I think about before I go to bed. But, at some point I'm going to have to tell my kids about it and I don't know how.
I mean that's why we go to Camp Good Time, so they're exposed to talk of it and eventually at some point they'll either ask me why do we go to camp, what is this HIV thing that people keep talking about when we're there? How do I know when they're ready? When do you tell your children? I still sometimes struggle telling people close to me.
Living with HIV - how do we do that?
The underlying message is that people are no longer dying: we are living with HIV. But, how do you live with it? Who gives you a map? Who gives you support? Who do you go to when you need help or a shoulder to cry on?
I've found two positive women who I've become very close to. I can ring them at 2 o'clock in the morning if I am upset and they can do the same to me. One of them is a bit younger than me and we complement each other. Having her in my life has made such a difference because I know that no matter how I'm feeling she can empathise. She knows what I'm going through. There isn't a single other person on the face of the earth that I could say that about, except for these two people.
I think one of the hardest things for a lot of positive people is there are times when you need nurturing. You go to somebody you know and you end up being the comforter because that person falls apart because you're upset. That's happened to me quite a few times. There are times when you just want somebody to hug you and tell you everything's going to be okay. Peer support is important. It is up to us as positive people to get off our arses and give of ourselves. Be there for each other especially in the heterosexual community. I mean the gay community's got that, they've got that sussed. They support each other. The straight community doesn't have that as much and it needs to be worked on.
I've reached the 10 years and there's a light at the end of the tunnel
I'm in my tenth year. I mean I've spent this entire time waiting to die. This year has been the biggest turning point for me because I've reached the ten years and I'm still here and I show no signs of going anywhere.
The way the news was broken to me was I'm sorry you're HIV positive, you've got ten years to live and you can forget about having kids. Those were the exact words. They rang in my head constantly. But, I'm still here and I have two children, they're both negative and they're both beautiful. I have a partner who loves me and respects me and treats me so well. The ten years in between have been hell in so many ways. I wouldn't wish what I've gone through, mentally and emotionally on my worst enemy.
I took HIV medication for about a year and then I stopped taking it because I wasn't feeling well and within a week I felt better. I now have to take medication again because my t-cells are low. Medication has such an impact when it becomes a necessity rather than a luxury. The decision now is to take pills and live longer or don't take them and get sick and die.
The fear is still there: what if they don't work? What if I become resistant to them? It's frustrating because I don't look or feel sick. But, I 'm just tired all the time, not just a little bit - ALL THE TIME!
I now have to take medication to keep the light burning at the end of the tunnel. I am looking forward to feeling better and moving on again!
Most important memories. I'm a survivor. I'm living with HIV
I never want to forget the hard times because they've shaped who I am. They've made me the strong person that I am and I have to remember that I am strong. It's very easy to get bogged down in your every day life and forget that you can actually cope. Some days you fall to pieces and you don't feel like you're coping. So to actually remember I've survived, I'm a survivor. I'm living with HIV. Make friends with your hitchhiker. Start a dialogue with your hitchhiker: "Yes, you can come along with me, but you're not driving."
For me, the most important memory is of the bad times. I mean I still have them but they're nowhere near as intense as they were. I don't have those feelings as intensely as I used to.
I remember the birth of my children: the differences and experiences that I had the first and second time. By the second time I was no longer afraid that I was going to have a positive child, because I knew that I wouldn't. Whereas the first time even though I was told I wouldn't, I still had the fear that it was going to happen. Remembering all of the difficulties in the initial years of my relationship with my partner. A lot of it is about remembering the bad stuff because when you remember how bad it was back then and you look at how things are now, they're nowhere near as bad.
Facilitating change for positive women . You can't control your status but you can control your quality of life
I'd like to be part of facilitating change for women but I guess I have to really understand what it is that needs to be changed. I need to understand what the issues are for women, what we need. But it can't just be me. Other women have got to step up as well. They might think: " I do not want to be the public face of HIV but, this is what I can contribute." It's so cathartic to get involved. The message we need to get out to women is: you can't control your status but you can control your quality of life.
We all want a safe space to get together and somewhere that's child friendly. Rather than making it all HIV positive related, give us some other things to focus on that have relevance to our real lives, our dayto- day lives. I mean I went to a time management workshop and it was fantastic. It wasn't about HIV but day-to-day living.
A lot of us don't want to talk about HIV all the time. We want to get together and be normal. None of us feel good about ourselves if we're constantly reminded that we're HIV positive. Make it women focused rather than HIV focused.
HIV visibility
Getting involved with the 'HIV doesn't discriminate' campaign in 2002 was definitely another good step towards the building of my self-esteem. There was no negativefall-out from the poster or postcard. In fact, whenever I went and did talks I took the postcards with me, the kids came up and asked me to autograph them. It was really touching that I'd had such an impact on these young people, that they actually wanted a memento of me. For that moment in time it was really empowering.
I think it's important for me personally to be out there, to be visible because there is such a huge burden of shame that comes along with being an HIV positive woman. I personally want to get rid of the shame.
Still, after ten years, positive people live with the fear that other people are going to find out. I want to make people think, just for one minute, about something as serious as HIV, how it affects people and that it doesn't change who they are. It doesn't change who I am. There is still a huge level of ignorance. But, the thing that frightens me more than anything else is the huge level of complacency now. "Oh it's alright, people aren't dying from HIV anymore, it's not as bad as it used to be." That pisses me off because the nature of the beast has not changed. I feel now is the time for me to come forward and slap the world in the face.
photographs: Jamie Dunbar
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