Positive Life NSW

Rob on being 26 and living with HIV for seven years.

Modern life is so hectic, and free time so scarce, that it’s rare we get much chance to actually take a moment and reflect on the years passed and what we have learnt along the way. So at 26 years old and after seven years of living with HIV, that’s what I find myself doing.

I guess every person living with HIV will vividly remember the day they were diagnosed; it’s not something easily forgotten. For me it happened in a suburban medical centre at Brookvale in 2000. It’s the day I was first faced with my own mortality, and that’s not something easily faced at the age of 20, having contracted HIV a year earlier at the age of 19. It’s also the day I awoke from the naivety and cocoon of youth and started to grow up very quickly.

Sheltered, happy and secure

Having lived 20 years of a very sheltered, happy and secure life on the Northern Beaches it’s the day I awoke from that slumber and came crashing head first into a new reality. One filled with uncertainty, fear and what seemed like insurmountable challenges. Because of a real lack of awareness, sickness and death after several years was my initial understanding of the diagnosis. I couldn’t believe how quickly life could change from being near perfect, having just ‘come out’ to, and being accepted by family and friends, to sitting in this clinic being told I had a disease that I knew nothing about, other than the fact that it would kill me. What can only be described as the most acute sense of panic and fear, soon gave way to numbing shock.

HIV was never even on my radar as a 19 year old guy on the Northern Beaches of Sydney, having just ended a two year relationship with my first girlfriend. I attended an all boy’s Catholic high school in Manly and despite that fact was not sexually active at school. I very rarely ventured to the city and hence had no contact with the gay community or scene, I hadn’t even a single gay friend at the time I contracted HIV. It was a casual encounter, my first with another guy. Yep, 19 and the first time I had sex with another guy. I had no comprehension at the time what impact a drunken one night stand could, and ultimately would have, on the rest of my life. To be honest, when it happened I was more preoccupied with the fact that I was actually having sex with another guy than I was about using a condom.

Hating doesn’t bring comfort
When hearing of my experience, people often ask whether I’m angry towards the guy who infected me. My answer to that is simply no. My dad was the first one to tell me that there is nothing to be gained from dwelling on the past, on what has been done and cannot be changed. I soon realized that I still had a life to live and because I now perceived it as shorter, I had more to pack in than most. Hating someone for passing on something they may or may not have known they had, doesn’t help me. It doesn’t bring comfort. It only takes up time and energy that I would prefer to invest in other things. I have certainly learnt the hard way that life really is too short.

So much angst to be simply who we are
When it comes to my diagnosis, I was more annoyed that I live in a society where young guys (and girls) who are questioning their sexuality need to go through so much angst, self loathing and rejection to simply be who they are. When asked about the factors implicit in me contracting HIV, I always first acknowledge that I’m the main factor as I accept responsibility for my own decisions. I’m the only person responsible for my own body and health. But are there influencing factors, yes. My youth? Yes. Alcohol? Yes. But just as much of an influence and a reason cited much less commonly is society’s influence.

From birth every single major influence we are subjected to and that helps shape our concept of ourselves, especially in our formative years is based on a norm of heterosexuality. This includes the traditional family experience, what we are taught at school, what is preached to us by religion, and what we are exposed to constantly by the media. So that when I reached the stage where I started to realize that I didn’t fit into this norm, for the first time in my life I saw myself on the outer. I felt like there was something fundamentally wrong with me. For someone who was always somewhat of a ‘golden child’ – being school captain at primary school and high school and always performing well at sport and academics, this had a significant effect on my confidence and self perception.

And so, because I had been conditioned to think that these feelings were wrong and dirty, I wasn’t open about them, instead having to explore my sexuality on my own and without support. This took me places I was not yet familiar with and yes I did things I was probably not all that comfortable with. So that when I found myself first having sex with a guy, I had never even really had a discussion about gay sex with anyone, how to negotiate sex or even about what was and wasn’t safe. I didn’t feel I could talk to my family or my mates (all straight) or work colleagues. I couldn’t easily meet other gay guys to get to know and socialise with or form friendships with, like I could easily do with girls my age. I couldn’t bring guys home like I could a girl because I was terrified what my parents would think. This is despite them being a wonderfully supportive and accepting family.

I think it’s pretty obvious why young gay and lesbian people suffer worse health outcomes than their heterosexual peers and it’s a fairly sad indictment of society. When young queer people are unable to be open and frank during their years of sexual experimentation and development it doesn’t place them in a good position to make healthy and informed decisions.

But if HIV has taught me anything, and it certainly has - I consider it one of the most influential teachers I’ve had, it’s the value of positive thinking. It’s the main thing that got me through the first few years after diagnosis (the other being my family). From thinking I had infected my 18yo boyfriend when I was diagnosed (we ditched condoms in the relationship after several months, without being tested), to talking publicly about HIV in talks to school students and various media, disclosing to new partners (which for me never gets much easier), to dealing with the impact this has had on my family. Positive thinking and an optimistic outlook has underpinned it all. I’m a great advocate of its value.

An easy life isn’t necessarily a good life
There is no doubt that for me HIV has made life that little bit harder. I’ve now had HIV for seven years and my health has remained good and I am yet to take medication. But it’s the uncertainty around what lies around the corner. Every runny nose or cough I get still makes me wonder whether it could be the HIV. When I’m tired and run down and find it hard to get out of bed in the morning, I wonder whether it’s HIV or is it that I’m just tired.

I guess the hardest thing though, has been the effect it has on relationships. I had a boyfriend of a year (my first) when I was diagnosed and that relationship fell apart because of it. He was only 18 and thought the whole scenario too overwhelming to deal with. It’s at that moment that I knew relationships had just got a whole lot more complicated for me. But hey an easy life isn’t necessarily a good life I kept telling myself, and I was determined to have a good life.

It certainly hasn’t stopped me from having relationships but it does add another dimension to those that I do have. I have never been in anything other than a sero discordant relationship; my partners have always been HIV -.Because I never actively sought out other HIV + guys, all my friends, guys I meet socially, and those that I have dated have all been HIV – (or at least none are openly positive). That’s a lot of disclosure to negative guys and at times it does wear me down. Every time I have a casual sexual encounter or start dating someone and consider disclosure, it’s a reminder that HIV is still a big issue for many guys. Particularly younger guys who are less likely to know someone who is HIV +. As a younger HIV + guy I have found it difficult to create any kind of network amoungst my peers simply because most guys living with HIV are older. People often find it strange that at 26, having lived my entire adult life with HIV, I have never really had an HIV + mate or lover. I guess I have been lucky enough to have had a great family, bunch of friends and partners who have been empathetic and supportive enough for it to not matter so much.

One example of this is when I disclosed to my current partner earlier this year. Immediately he reacted with total support and understanding, despite the fact he was only 19 years old, not being ‘out’ and this being his first gay relationship. Whilst disclosure on such a personal level is still a big challenge, it’s times like this that renew my belief that generally people are accepting.

So for me, HIV has totally reshaped my life and taken me on a road I never thought I would be traveling. It’s now so clear to me to value those things that really count in the end – health, family, love and moments with those you care about. I appreciate life and how fragile it can be. I live more for the moment than I probably otherwise would. It’s given me a more accepting and open view of life, people and the world in which we live. It’s been a huge part of shaping the person I am today and I know I’m a better person because of it.