Staying Negative

For most of my time at high school I went about trying to convince the larger student population that I was straight. This involved a couple of girlfriends and occasionally kissing girls at weekend parties. By year 12, I had most people pretty well convinced. And, ironically, that’s when I finally came out. But I didn’t go public about being gay, choosing only to share it with a small, more open-minded circle of friends. (Coming out)

I was fortunate that I had some really supportive friends at school and, because I kept a low profile, I didn’t experience much direct homophobia. I would only get it from a few people who were probably gay themselves and were just in denial. I admire young people who are openly gay at school because they’re pioneers; they’re raising awareness and setting an example. But back then I wasn’t prepared to do that. Despite the fact that my family are open-minded relative to the Catholic Church doctrine, I couldn’t get over the feeling that being gay was something wrong, inferior and immoral. (Religion and sexuality)

Being in a completely Catholic environment constantly reinforced that sense of shame around my sexual orientation. Fortunately, my parents could see beyond that. They didn’t see it as immoral and had made that fairly clear to me as I was growing up.

Not because they thought I was gay, but because they didn’t want me to feel it’s wrong if I happened to be gay, or to judge other people for it. This made an enormous difference. If I’d had parents who really toed the Catholic line, it would have been much harder.

But it was still difficult, because the Catholic institution is so big and so influential that, despite my family’s views, those conservative values still bore down on me. While there are many Catholic values I admire, there are also too many that I find oppressive and contradictory. In the end, it was really a matter of me having to grapple with that, right up until I chose to let go of the Church and Catholic religion after leaving school.

The year after I finished school I started doing a Commerce/Arts combined degree at Melbourne Uni, but I soon realised that Commerce was not really my thing. So I embraced the Arts side and got into the humanities and cultural studies. It was very mind-opening because my education up until then was religious and therefore narrower, whereas at university it was much more open. It allowed a big leap in knowledge and awareness, something that I really welcomed.

At uni I was keen to expand my social network because it had been so limited to people at high school, which meant that I had very few gay friends. The queer community on campus was something I immediately gravitated towards. It was a broad community with a radically political edge. At first I found this overwhelming, because I’d come from a conservative background and many of my views were being challenged. But then I began to transform, to let go of some of the conditioning and start thinking for myself more. Some of the things I was studying helped me with this too.

I had my first taste of the gay scene in my first year of uni when I wasn’t yet 18 years old. The most symbolic of these first experiences was going to the Xchange and seeing my first drag show. It was one of the most confronting examples of a drag show I could have seen and I was quite disturbed by it. Not because it was drag; I like the idea of drag. It was just so dark and vulgar that I couldn’t relate to it. I guess I was still a bit conservative. But I also really didn’t feel safe in that environment. It certainly wasn’t an empowering experience. (Getting out there)

I realised that this wasn’t a side of the gay community that I wanted to have much to do with. I was aware, because of the queer community on campus, that the gay scene isn’t all there is to the gay community. I think a lot of people get on the scene and they think that’s all there is. That’s why they latch onto it, not because it actually empowers them. After that and a couple of other experiences, I was more inclined to the alternative queer scene, which was better represented on campus and also at queer nights like Q&A. That became my social network.

It was the end of my first year of uni and I was 18. I’d had a year in a more open environment, meeting more gay people and gaining a level of support from them and other people around me. It was what I needed to feel ready to tell my parents I’m gay. When I eventually came out to them they were very supportive. They only wished I’d told them sooner, especially because I’d told so many other people. I tried to explain that it’s harder to tell your parents than anyone else, which is why it took me so long, but they found this hard to understand. I guess I have to see it positively that they wanted to know earlier, because it’s a sign that they really care and support me with it.

Without actually mentioning HIV, they also asked me to be careful with my health. I didn’t take their concerns very seriously, believing that they stemmed from a persistent stereotype that all gay men end up with HIV. I didn’t think that it could happen to me. (Safe sex)

Around this time a gay friend I used to work with introduced me to an older friend of his. I was 18 at the time and this man was 51. He had me in his sights from day one and within a few weeks we were sexually involved. I was still very sexually naïve and therefore thirsty for new sexual experiences. I’d become more open to older men because guys my age were equally inexperienced and it always felt clumsy. At the start I was happy to keep it casual but he immediately wanted more than just a friendship with benefits. So he got quite emotionally involved and, being young and impressionable, I couldn’t help but get emotionally involved too. Especially because this was the first person I’d had an ongoing sexual relationship with.

Our relationship continued for a few months and, under increasing stress, there came a point where I felt it was too much for me. I wasn’t comfortable being with someone so much older. It just didn’t feel balanced. I tried to end it but he begged me not to. I was and still am a sensitive person who doesn’t like to hurt people so I relented and we continued.

An important fact about that relationship is that it was the first time I ever had anal sex and with minimal negotiation we began and continued to have unprotected sex from the beginning. It was during this relationship that I did the Young & Gay group at the Victorian AIDS Council and got my first proper education about safe sex. It was the first time I became aware of the importance of negotiation. By that point though, unprotected sex was already the norm in our relationship and continued to be so, even though there came a point where we were both sexually active outside the relationship. I was practising safe sex, and I assumed and trusted that he was too. It was so much about trust. I trusted him from the beginning when he first stuck it in me without even asking. The whole time we were together I trusted that he was HIV negative. (Anal sex)(Sex outside the relationship)

Towards the end of that year another friend of mine invited me to go with him on a trip to India over the summer. My lover didn’t want me to go, probably because he knew that it would be a coming-of-age experience for me and that I wouldn’t want to be with him anymore. But I was determined and I went. It was a coming-of-age experience going to India at that age. I was 19 and it gave me the first opportunity to experience a totally different culture and to really step outside my own bubble. It was a chance to see the way most of the rest of the world lives, and to realise what an extremely privileged life I’ve had here in Australia.

I spent the first month travelling with my friend before we went our separate ways. I went on my own to Kolkata to do volunteer work. It was really confronting and quite lonely as well, especially as it was my first time alone in a foreign country. So I was really open to meeting anyone on any level. I met an American guy and we were instantly attracted to each other. He moved into my room the night we met and stayed on. (Isolation)

We had a fleeting but intense relationship. My intention was to use condoms and practise safe sex but there were a couple of instances of unsafe sex. Generally we were having protected anal sex, except the first time, and that was un-negotiated. It basically happened before I even knew it was going to happen. I didn’t have an opportunity to say, “I want to use a condom.” On another occasion I let him come in my mouth. I was still unsure about the risks involved in that. I didn’t realise that there could be significant risks with oral sex and ejaculation so I wasn’t aware of how unsafe what I was doing was.

After a few weeks the relationship fizzled out. At that time I got really sick. I felt sicker and weaker than I ever had in my life. I ended up spending more than a week feverish and bed-ridden with no appetite and unable to do anything. I didn’t have a clue what was wrong with me and I felt very isolated without the support of my American friend. (Seroconversion illness)

I was very sick for a while and, although I recovered somewhat, I still had some health issues when I went back to Australia. That was clear to my parents straight away. So they sent me off to our GP who thought that I had a post-viral, neuropathic syndrome that’s very rare, and these days in younger people is generally associated with HIV. That was when I started thinking that maybe I had HIV. I was referred to a neurologist who was the first person to directly question me about the possibility of HIV. I’d had HIV tests before and they turned out fine. I assumed that because I was fine then I’ll be fine now, even though there were so many indications that something was seriously wrong. (HIV testing)

I don’t think my neurologist had ever tested anyone for HIV before. But he believed it was a strong possibility and insisted that I immediately get tested. I’d been planning to get tested but preferred to go back to the Melbourne Sexual Health Centre where I’d been tested before. I gave in to him though because, being a specialist, he had a strong sense of authority and I was easily intimidated. So I ended up getting tested without any pre-test counselling. A week later I went back not expecting to get the test result yet. He came in late. He was clearly stressed out and his face was very pale. Before I knew it he’d sat me down and said, “You’re HIV positive.”

Even though I’d considered the possibility of HIV nothing had really prepared me for this. It was a huge shock. What made it harder was that he really didn’t have the skills to provide proper post-test counselling. Even worse, he gave me a prognosis of 10 to 15 years.

This was in the year 2000 when people weren’t actually sure how long life expectancy with HIV might be. But I didn’t know any better, so it was just as much of a shock as the diagnosis. The neurologist then put me in a taxi and sent me off to the Alfred Hospital.

I was living at home with my family at the time. I hadn’t told them I was getting an HIV test but they knew I was getting a whole lot of tests done. The HIV specialist at the Alfred immediately wanted to confirm the diagnosis with another test. So I had to go home and say that I didn't know all the results yet.

Later that day the specialist called me back and told me that yes, I definitely did have it. It was a Friday afternoon and the working week was over. So when I finally got the confirmation of the diagnosis over the phone, I had no one around me who could support me apart from my family. It was a very messy process.

I told my brother that day and the rest of my family the day after. I think my mum had already guessed. My dad was more shocked and reacted with the outburst “But we told you to be careful!” Although he quickly retracted it and they were both very supportive, I still felt ashamed, like I’d failed them.

After my return from India I’d reconnected with my previous lover on a friendship basis. I think he would’ve been very open to resuming a sexual relationship and wouldn’t have hesitated to have unprotected sex. I don’t think he believed I could actually have HIV. And I was pretty certain that he didn’t have HIV and still believe so to this day. It made much more sense that I would’ve got it from my American lover in India. So I had to be really firm and say “No I don’t want to have sex”, in an effort to protect him. Even when I’d go and stay with him for the weekend I’d have to lay down the boundaries. Fortunately he respected that. I guess he had to. But then when I got tested and I got the result he was angry. He said to me bitterly, “If this had happened to me, I’d be worried about who I can’t support, but you’re just worrying about who’s gonna support you,” as if to suggest that I was selfish for wanting his support.

I was empowered enough to see that he was being irrational, especially because he then half apologised for it. I’d seen his true colours and I realised I probably deserved better. But I also started to question, “Is there some truth in what he’s said? Is it fair for me to seek out support? Have I done something selfish here?” It was that whole idea of blame around HIV. It ingrained that more. And that’s something I think everyone who has HIV has to struggle with continually. Nonetheless I chose never to speak to him again. I haven’t regretted that. His words were the straw that broke the camel’s back. I felt really betrayed and that ended it for me. (Relationships)

I had turned 20 by the time I got the diagnosis and my naïve response was to move forward and just get on with it. But I was really struggling emotionally. I started using recreational drugs more than I ever had. I’d only had minimal experience with drugs but the trauma of the diagnosis pushed me into a self-destructive binge phase because it was the only way I could cope. The partying and drug-taking only lasted about a couple of months but my health suffered considerably. I felt so ashamed. And as much as I knew my family could support me, I had to get space from them because the shame blocked me from really accepting their support. (Drugs and alcohol)

None of my peers were going through the same thing. No one else I knew had HIV. People tried to support me but they really didn’t understand what I was going through. They were young too; how could they know? It was painfully isolating at that stage. Coincidentally, in the year I was diagnosed, a youth group for people with HIV was launched. I was trying to make vague efforts to get in touch with the HIV community so I went along to the launch. But I found it so confronting that I didn’t go back to it for years.

During that first year I sought counselling at VAC/GMHC, but by the end of the year I decided it was too much to deal with. It was all just too confronting. I expected to go to counselling and leave feeling happier and better. I tended to leave feeling overwhelmed. But I realised later down the track that those feelings are actually part of the process when you’re facing major stuff. It’s not easy. (Counselling)

Ignoring many of my issues, I put my head down and went back to uni. I started getting really involved in student politics and decided to run for a position in the student union as Queer Officer. This was an essential outlet for me, as I had a lot of anger and I was channelling it all into the activism. Despite my involvement in theatre earlier on at uni, the politics pretty much subsumed any other creative paths; especially once we won the elections and I became an office bearer.

Even more so than drugs, political activism was the ultimate distraction from what I was facing. But it started to eat away at me. I developed such a negative view of the world, choosing to focus on all the injustice, ugliness, violence, oppression and inequality above other things. I was feeling negative about myself, which I guess is why I was becoming so negative about life. I felt a sense of deep injustice that my invincibility had been taken away from me at such a young age. It seemed so unfair that my world had been turned upside down, that my future wasn’t certain and that I had to do this alone.

By the end of 2001 I had burnt out. After a year I couldn’t wait to walk out of that office bearer position and leave it forever. Once I did I was forced to reflect, “Well, where am I at? I’m 21 and I already feel burnt out. And what do I really want in my life?” This was me realising that the lifestyle I had was unsustainable.

It took a lot of soul searching to recognise that not only did I need to change my priorities but that I’d lost my sense of spirituality. I began to realise how important spirituality is to me. I’d already decided the Catholic Church wasn’t for me. In fact, I was quite against it on a political level. But I was also aware that the religious upbringing I’d had wasn’t all negative; that it was actually what helped me establish a solid spiritual foundation. I think, at the beginning, it’s also what helped me to cope with the reality that I had HIV.

When I was diagnosed, the friend I went to India with said to me, “Well, everything happens for a reason.” It made me angry at the time because it felt like a shallow platitude. But it was true and deep down I knew it. I had the spiritual awareness to know that nothing is really an accident. Many will beg to differ, but that’s my experience and the way I choose to look at it. It’s a view that has helped me enormously in dealing with HIV.

Despite the fact that I was better coming to terms with my condition, I was still young and naïve. I wasn’t yet 22 when I decided to drop out of uni and quit my job. Feeling I needed to be free to explore, I let go of all my commitments. This was mainly to focus on my health, which had never really been a priority, as it isn’t for most people in their early twenties. I had to grow up much more quickly than I would have otherwise.

For a lot of people around me, my decisions were quite controversial. It was hard to stand my ground because I felt so much pressure to be active in the world, to be working, to be studying, to be “doing something”. But what seemed more important for me was to focus on my health. I became interested in natural and holistic therapies and also wanted to explore different forms of spirituality. (Complementary therapies)

So I went up north and spent about four months in the Byron Bay region. It was a mixed experience. At the time I was disappointed. I’d hoped to go there and find my niche, but it didn’t turn out that way. I felt like I was just drifting around. But I did get to meet some amazing people and, in retrospect, that made it truly worthwhile.

I travelled a bit more in Australia and then eventually went overseas. I left Australia not really knowing if or when I would come back because I didn’t really feel like I had a place here anymore. I went to South East Asia for four months and then back to India.

Going to India again felt like going home, yet at the same time I felt I was running away. I wasn’t happy. In fact, I was quite depressed a lot of the time, and my physical health wasn’t good either. Before the trip I’d made the decision not to have my blood monitored anymore. I wanted to put off taking medications for as long as possible and ideally I didn’t want to have to take them at all. I felt that the stress and anxiety I experienced every time I had my blood tested was compromising my health. (Anxiety)

But after more than a year in exile, I realised that there was no longer any point in running away. I was never going to escape what was within me - this fear and inability to feel secure in the world. I’d also formed a habit of idealising other cultures. At first a place always seemed so dazzling and beautiful and wonderful, and then I’d start to see the dark side. I was in the Himalayas, which is one of the most beautiful parts of the world. But even there I began to see that nothing’s perfect. I realised that my deepest connection is to my family and to the place I was born, and with a desire to honour those connections I decided to go home.

Although I continued to believe that I could make it on my own without HIV medication, I decided I wanted to integrate into society a bit more. I tried going back to work. I was attempting to be “normal”, and it didn’t work out because I wasn’t physically strong enough.

So I let it go and started dreaming about travelling again, which is how I ended up studying Spanish and beginning the dream of travelling to South America. That was good for a while, but my body was really struggling. I tried other, stronger forms of natural healing, like detoxification through a therapeutic diet. Then I travelled again, this time to Japan to visit my sister who was living there. I went to Korea as well, and got through it all despite my poor health. I was always able to bounce back enough not to feel like I was going to slip into the abyss. (Complementary therapies)

It was 2006 before the wheels really started to fall off. I’d been going through a deep process of questioning the whole theory of HIV. I questioned if it even really existed, because I felt like I had no proof that that’s what I was really living with. It was a form of denial. By then my immune system was deteriorating to the extent that I was getting a lot of skin conditions like eczema and psoriasis. I’d never had them before. Something wasn’t right and I had to face the reality. It took a friend of mine with HIV to be hospitalised because he was also avoiding medication to realise that this could happen to me too. Finally, I decided to get my blood tested.

It had been at least four years since I’d last had my blood tested. I had 35 T-cells, which means my immune system was nose diving. I’d also been having counselling for more than a year at that stage, which really helped me start to look at things more realistically. I started to change my perspective of my own life and not see HIV as a death sentence. Because I’d had such a dire prognosis from the person who diagnosed me, I’d never really believed that I could live a full and satisfying life with HIV. It took a lot of counselling and a long process of soul-searching to believe differently. It was about embracing life and finding my passions. That was what motivated me to try going on medication and start believing in my own future. (T-cells and viral load)

In late 2006 I started taking medication. I was still only 26 and I nonetheless had to face the fact that I might be taking them for the rest of my life. It was really tough at first. Some of the fears I’d had were founded because the side effects were so strong. I was also a bit unrealistic when I first began them, going from seeing them as a curse to be feared to seeing them as a quick fix. I expected that within a few months I’d feel like I did before I got HIV. (Treatments information)

It’s not that easy though. Because my immune system had deteriorated so much, it was going to take a while for me to build it back up again. Also, it often takes people with HIV some time to find a combination that is sustainable and manageable. For me this was definitely the case, because I‘m fairly sensitive. The first combination I was on I could only manage for about four months. It had side effects on the central nervous system, which affected my mental health. It was at a time, in the beginning of 2007, that I’d decided to go back to uni to finish my Arts degree. But that first combination made it hard for me to study, so I had to change it. I’ve had to change my meds again three times since then, but every time it becomes a little easier and I’ve managed to become more active in life.

I managed to finish my degree by the end of that year, which was a big milestone for me. I did it not only for the sake of learning but also to achieve a symbolic sense of completion. It helped build my confidence and give me a better sense of what I was capable of. I’d never have thought it would be so difficult for me to finish a degree. Life had proved to be a lot more complicated than I’d ever anticipated as a 17 year old starting out at uni.

In 2008 I started studying social work. I wanted to work in the community and, more specifically, I wanted to do counselling and work directly with people. This is how I started working in the mental health sector. Going out and working again felt like a risk for me, but it was a healthy risk because it allowed me to prove to myself that my skills could benefit the community.

Looking for a more distinctly therapeutic vocation, at the end of that year I decided to stop studying social work. In the following year I instead took a new risk and did a diploma in transpersonal counselling, which is a holistic form of counselling. Being experiential, it was a completely different style of learning. In order to learn, I needed to explore my own story and background to get a sense of how to work therapeutically with other people.

I got many insights through that experience, including an understanding of my own journey with HIV. I also learnt about the importance of having a creative life. This was something I’d neglected for a long time, even though when I was at school I was into music and theatre. I realised it’s a key to better health, encouraging my sense of vitality and passion for life. Strengthening and deepening my creative paths is an ongoing process. It was one of the rewards of doing the counselling diploma, as was the dream trip to South America that followed it.

Relationships have always been a challenge for me. I’ve had a few intimate relationships since I was diagnosed, but none have been long term. Most of them were with HIV negative guys. Fortunately, serodiscordancy has never been that big an issue. Most of the guys I’ve met said they were cool with me having HIV, so the challenges have come more from my own lack of self worth and an inability to communicate my needs. (Pos-neg relationships)

Still, there have been a couple of instances where guys have been scared off when I’ve told them I’ve got HIV. It’s most often the case that they do have an issue, but want to appear to be cool with it, so they pretend they don’t. It’s an irrational fear that can’t easily be gotten rid of. I understand that, because I might have been in the same boat if I wasn’t positive myself. I also think sometimes their fear is a reflection of the insecurities that I have over being HIV positive.

As much as I’ve wanted to believe over the years that I’m empowered enough not to feel a sense of inadequacy because of HIV, I still think it’s there. And there’s nowhere it gets tested more than in an intimate relationship.

The feeling that I’ve had to just take what I can get means I haven’t always been overly selective about who I get involved with. Although many gay guys don’t have much of an issue with HIV, the longer I live with it the more I realise there are many guys out there who are indeed uncomfortable with it or prejudiced about it.

It seems that the online community is where these prejudices are most openly expressed. I’m not as sensitive as I once was, but it still affects me as it does a lot of positive guys. If we’re mutually responsible and practising safe sex, then unless I’m actually trying to get to know him in a more intimate way, I don’t see the need to tell a sexual partner that I have HIV. I may feel more relaxed if I disclose, but if he’s not comfortable with it things can become very awkward. For this reason, disclosing is always a risk. And it doesn’t matter how well I know someone because it can still feel like a risk. Of course, it’s always my intention to practise safe sex because I know what it’s like to contract HIV and I wouldn’t wish it upon anyone. I also want to protect myself against other sexually transmitted infections. I think that is an important message to get out there; that safe sex isn’t just about HIV, it’s also about other STIs. (Disclosure dilemmas) (STIs)

There are plenty of people with HIV who have more of an issue with it than people who don’t have it. It really depends on the person. I feel that I would be limiting myself if I were only to seek relationships with positive men. For me being gay can be limiting enough, as we have less of a pool to draw from. This issue has come up for me recently when I decided to be open about my HIV status online. I have face pics on my profile, so I’m choosing to be totally up-front. I wonder if it means that many people who might have been interested in me won’t be. My hope is that it’ll attract people who can face their fears, see beyond HIV status and acknowledge the kind of courage it takes to be that open, recognising it as a sign of strong character. It’s an experiment based on my belief that the more authentic we are with ourselves, the more likely we are to attract an authentic person.

Since 2009 I’ve been telling my story of living with HIV as a public speaker for the Positive Speakers Bureau of People Living with HIV/AIDS Victoria. I think it’s important for all communities, including the gay community, to read and hear stories from people with HIV. We need to debunk the persistent myths surrounding it. Despite the level of awareness that now exists, there’s also a lot of ignorance, often leading to stigmatisation and discrimination. I therefore want to tell an honest story of how HIV can happen and demonstrate that it can happen to anyone.

I believe that everything happens for a reason. In my case, I feel that my lack of self-worth combined with my naïve sense of invincibility led me to contract HIV and that through living with HIV I’ve had to confront those aspects of myself. This has been a positive process because it’s allowed for a lot of growth. But I hope that people could begin this process without actually needing to contract HIV. As I said before, I wouldn’t wish it upon anyone. But for myself, I don't see it as a bad thing to have HIV, as it’s helped me to evolve into the person I am now. (Self esteem)

I‘d like to encourage people to be more reflective. We’ve all seen the health promotion campaigns around safe sex. We see so much of it that perhaps we become immune to it. But it’s more a matter of questioning yourself: “Why would I do that? Why is that important for me?” And it’s a matter of being honest with yourself about why you mightn’t be practising safe sex. Having the courage to admit this and question it doesn’t make you a bad person. It’s not a question of morality. It’s about your self worth. I encourage people to seek the courage to look at it as honestly as they can without judging themselves, so that they can enjoy sex responsibly and genuinely protect themselves.