Reactions to working in the HIV sector

In May 2015 I started working for Positive Life NSW, a non-profit community-based organisation, which is the voice of all people living with and affected by HIV in NSW. There are two reactions I get when I mention to someone that I work in the HIV sector.

The first is one of genuine and/or mild interest in the sector and the reasons behind my move to this sphere of work. This response, for the most part, usually comes from people aged 35 years and up. The second reaction comes in varying degrees of shock, concern, and confusion, and it’s usually coming from people in my generation – Generation Y.

Some of these responses have played out as a wide-eyed query of whether I’m working in the HIV sector because I have HIV, or if it’s just because I’ve always wanted to get into the not-for-profit sphere. Each time I mention that the organisation is peer-led, and that I work and socialise with people living with HIV on a daily basis, their response is a variation on “Oh! So they’re all going to die soon!” This is accompanied by a horrified but well-meaning gaze. They usually follow this up with the assured belief that, “no one I know has HIV”, as if the disease comes with a red identifying stamp on the person’s forehead.

The young people that I’ve spoken to about the work that I do are intelligent, empathetic, rational, caring humans. They just know next to nothing about HIV. Our education system fails us, major news sources fail us, and information dissemination systems fail us in the message about HIV. I personally believe it goes deeper than that. For many young people today, HIV is an unknown quantity, and it’s scary. Because it’s scary, my generation don’t want to think about it, or learn more about it, or understand that we’re also at risk. Many of us are still young enough to blindly travel through life like we’re invincible.

Most of my generation have only heard about HIV from bogeyman-type stories told to us by older relatives or acquaintances to deter us from leading a “risky lifestyle”, or from remnants of the Grim Reaper ads back in the day, or from a solitary sex-ed class in high school. For some of us, HIV has become colloquialised in jokes that people tell, where HIV is used as a punchline. For others, especially if we’re in established or straight relationships, we genuinely believe we have no risk for HIV.

We urgently need to resume educating our young people about HIV, and sending positive, accurate information about the risk of transmission. We are a young demographic coming into adulthood with a huge gap in knowledge on how to remain vigilant about our sexual health. The lived experience of people living with HIV should never be minimised or reduced to a punchline. We must educate young people about HIV, which will not only reduce the stigma associated with living with HIV, but also reduce the potential for a dramatic increase in HIV incidence in my generation.