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-Story 2
Being openly positive will hopefully encourage other people to talk about HIV. It might even prompt some guys to get tested.
Positively Positive
I had partners who were diagnosed whilst I was going out with them: when I was negative they were positive. That would have been back in 1985 or 1986. We really didn't know a lot about HIV and AIDS. It was at a time when I was going out to all the nightclubs on Oxford Street. I was also trying to have relationships that worked. Everything was new and experimental.It seemed in those early years anyone you knew or that you'd been close to died. I remember when I'd gone back to England I used to lie awake at night thinking about these people and feeling really guilty that the medications available to us now weren't around then. Why am I alright and why wasn't the medication there for them?
I was diagnosed in 1996. I got HIV from a short relationship with a guy who was passing through Sydney. He had what I now recognise as a sero-conversion illness: so he was highly contagious. It wasn't from not using condoms properly because I always practiced safe sex. I honestly to this day cannot fully understand how I was infected, unless the condom had broken and I had not noticed. I went for a routine test which showed up positive. So I was a bit shocked because I wasn't expecting it: it was just a routine test. I had always gone every six months for an HIV test.
Treatment
It was when HAART had just been introduced in October 1996. My doctor said although it's really not a good thing, it's probably the best time to get HIV because at least there're treatments available; there's something we can do. I went straight onto HAART.
A friend of mine booked me in to see a doctor who I thought was a counselor at the time. I went and about three hours later came out with scripts for all these pills. My doctor was away so I couldn't go and see him to ask his opinion on the treatment that had been prescribed. I was told if I didn't take the pills I'd die. So I started the tablets and because it was when all the protease inhibitors had just come out, they put me on massive doses. I was on the Ritonavir, Saquinavir, d4T, 3TC and a heap of pills for side effects. I was working at the time and because of the really chronic diarrhea I had to stop working.
I know there are a lot of different ideas about starting treatment early or not, and there's still not an exact 'right' answer that can be applied to everyone. Everyone's individual and unique: some things work for some people and some things work for others. I think in my case it was good because nearly ten years on I've still got a really high cd4 and my last cd4 was1600: I've never gone down below 350 and that was only when I had pneumonia.
Dealing with HIV
I got HIV but it opened these doors to doing something constructive and something that felt really valid.
Initially I was too numb to think about what it meant to live with HIV. It was actually getting a grasp on what I'd been told and letting it filter through. I certainly did, at times, think I wasn't going to be around in ten years. What if these drugs don't work and what do they know about these drugs? That's why I wanted to find out as much as I could about all the trials that were going on.
I wanted to tell to my parents. They live in the UK. I told my sister first to see how she gauged me telling my parents. She said they'd want to know. I told them over the phone and they wanted to see me. They wanted me to go back. Because I couldn't work at that time I decided to go back for a couple of months just to show them I was okay. When I went back I still had the side effects so I ended up staying in the UK in a semi-rural area called Worcestershire.
I hooked up with the health care team there and was put in touch with an HIV charity: a very small one with two people employed. Because I wanted to learn as much as I could about HIV I started volunteering. I also went on as many courses as I could. I became the representative for the area for people with HIV and started traveling around the UK on the back of the Terrence Higgins Trust working with other independent HIV organisations, giving talks to nurses and students: very similar to the Positive Speakers.
I ran the Positive Empowerment Group for people living in rural areas. They were all very isolated. There were no opportunities for social interaction available and there was very little information on HIV. I also did some fund-raising, which I'd never done before. It was like learning all these new skills and I enjoyed it! I got HIV but it opened these doors to doing something constructive and something that felt really valid.
This would have been from 1998 until about 2002. During this time the charity grew. We started getting a lot more people coming in. There was a cross section of people. A lot of heterosexual women with children and quite a few older gay men who were not out as gay men. Some also had mental health problems like bi-polar depression. I didn't have the background to work with these people but I had the personality to bring them together and to listen and from listening to people's stories to act on whatever I thought they might need. That's how the whole group grew. I left Britain in 2002 or 2003 and came back to Australia because I was ready to come back. I now work in the HIV sector in Sydney and love my work and have a great respect for those whom I work with. I don't think that people can work in this sector without having a passion, a driving force and that in itself is a healthy situation to be in.
Sex, relationships and me
I look at relationships very differently now. When I was young, I was experimenting and the whole gay scene was exciting and new. I had lots of boyfriends but did not really know who I was at that time and so looking back, wasn't ready for commitment.
I have been single now for about eight years and have matured along the way. Would I consider a stable relationship with someone now? You bet!
I would love to have a healthy relationship with another guy. By healthy, I mean one that is rewarding to both of us, where we learn new things together but also bring our experiences to the relationship. And it doesn't matter if they are positive or negative. Most of my relationships have actually been with negative guys in the past.
I always disclose my HIV. I don't find disclosure difficult. I mean I have had some shocking experiences telling people I'm positive. I remember once cooking a meal for a guy and I disclosed my status when he came over to my place. This was the second date: we'd had a drink somewhere and I thought right I'm going to tell him. I told him and I said: "are you okay with this?" He said: "oh yeah, that's fine". He then said: "can I use your bathroom?" I put the food out on the table and was waiting: he was taking a while so I knocked on the bathroom door. He'd gone. He'd slipped out the front door. I think discrimination among gay men is worse now than it was then.
I would like to be honest about safe sex and I know that there are many who condemn anyone else for not always wearing a condom. I had always been safe with other men after my HIV diagnosis up until about a year ago. Then after several men chose not to practise safer sex and it ended in no sex I decided to make decisions on what my needs were. Because the other person was positive we came to an agreement to have unprotected sex. Our choice, but one that I feel needs to be discussed between the two participating adults.
I was nervous about this because I'd always understood there are different strains or resistant strains of HIV and you could get re-infected. Apart from that I didn't want to get STIs like syphilis. It made me think afterwards because a year ago if you'd asked me would you have unprotected sex I'd have said never. So I shocked myself that I actually agreed to it. But then I suppose its circumstances and situations. As I said, disclosure and discussion with each other is a must. It also doesn't mean that I have unprotected sex with everyone I meet now, it has only been twice.
HIV is largely invisible: for me to be openly positive is a healthy thing. You get people within the gay community that think HIV has bypassed them and it's an older person's disease. HIV is largely invisible: it's not talked about.
Awareness
By telling my story I am making HIV visible. Talking about our experiences is a good way of describing what it is really like to live with HIV: how HIV is transmitted and that it's not just in the gay community. I worked with a lot of positive women in the UK. Not just black African women who've migrated but Caucasian women as well. A lot of women have got it from holiday places like Ibiza and the Mediterranean. It stands to reason because everyone's having unsafe sex and sharing partners. There are a lot of bisexual men or married men who are having unprotected sex. We saw a lot of heterosexual men who had sex with men but identified as heterosexual. These men had had very risky, unsafe sex in toilets and other places.
To start the discussion I think campaigns should be aimed at individuals. They should be specifically targeted. For example: to target awareness and to grow support groups in the rural areas, it would be best (in my opinion) for someone who has knowledge and experience of what it is like to be both positive and to have lived in a rural area, to honestly and frankly discuss topics that are relevant to that group of individuals. I have always found that people respond much more effectively with each other when this is the case. When I was in the UK I was asked to help organize a woman's only support group for HIV, but although I am positive and understand some of their issues I cannot possibly fully understand how they feel or what their real needs are. Although living with HIV is a similarity that many of us share, it is as diverse as each of us is individual. Long-term survivor's have a totally different outlook as do newly diagnosed people. People from different cultural backgrounds would benefit from information that is relevant to them. So, in brief, peers can help with campaigns and target individuals effectively.
I know there are these target groups but in these groups people are very individual. In a way using positive people's stories is a good way of reaching people. They may be very close, if not very similar, to what someone has experienced and it makes it more real. I know it's very hard but I think those are the more effective campaigns.
HIV is not something to be ashamed of. I think there are quite a few reasons why I should be visible. For me to be openly positive is a healthy thing. Hopefully it will encourage other people to talk about HIV. It might even prompt some guys to get tested: guys who may be worried about being tested.
Receiving a diagnosis in 1985 was like being handed a death sentence for a lot of people. They didn't have any options: there was little support and treatments were being trialed. There was more activism in the 80s. Activists fought for access to treatments, care and support. In late 96 we had HAART. There were options all of a sudden where there hadn't been before. We still didn't know what was going to happen but there was a hope. When I was diagnosed, there was at least some understanding that you were in a better position than ten years before. For people who are diagnosed now doctors have more knowledge on how to treat HIV and the side effects. There's a lot more support now, opportunities for networking and other community services.
Now we have to be very careful that we're not just focusing on the medical side of things. This may be disempowering for some people. There needs to be a balance between empowering people with emotional support, hands-on help and medical support. People have been dependent on our community support and services and we're now turning around and saying it's not good for you to be dependent, you need to be self-sufficient. What we've got to be very careful of is treatments are still extremely new. We've seen all these side effects like lipodystrophy and increasing cholesterol levels. As a worker within the sector, I'm aware of several of my clients going into hospital. You don't hear about this. I think we've just got to be mindful of those things. I think people get carried away sometimes in the successes and these successes are new. People need to be aware HIV is not easy. It's not just a question of taking a pill. There can be side effects and treatments may not work for some people. On a more positive note, living with HIV today is not the same as living with HIV twenty years ago, we are much luckier having treatment options and organisations that exist to support people living with HIV and AIDS. We now at least have choices. It is up to us to support each other and make informed choices. I choose to be positive in my approach to being positive. Positively Positive!
Photographs: Jamie Dunbar
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