Positive Life NSW Blog

Reactions to working in the HIV sector

Posted by on in Communications

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.

Image: Youth people sitting on steps

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 (PLHIV) 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 PLHIV 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.

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  • Guest
    Bazzamgee Monday, 23 May 2016

    Good article! Older people need education too, they are often sexually active and don't think about sexual health. You're right, there needs to be education in the wider community...but your organisation and acon have focussed on the gay community almost exclusively. They should be advocating for a wider education campaign. When is it going to happen?

  • Guest
    Amy Friday, 20 May 2016

    Absolutely agree !!

  • Guest
    Anonymous Tuesday, 17 May 2016

    Beautifully written! I hope the positive education about HIV gains more movement.

  • Guest
    Garth Tuesday, 17 May 2016

    Wow.... The accuracy of this is perfect.... I cannot agree more!!!

  • Guest
    Ted Tuesday, 17 May 2016

    Well said!

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Guest Wednesday, 12 August 2020

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