Living HIV positive

Living with HIV for 25 years, Heather Ellis knows all too well about the stigma and shame that accompanies the diagnosis, particularly for a woman. It’s something that as the chair of Positive Women Victoria, she’s fighting to stamp out. She’s this week’s Changemaker. 

When Ellis was diagnosed with HIV in 1995 it was a death sentence. 

A cure for the disease was yet to be discovered, and what’s more, the stigma it carried meant she was isolated from any kind of support through the illness. 

Working as a journalist for a number of years and coming to terms with the illness led Ellis to Positive Women Victoria, an organisation providing support, information and advocacy for women in Victoria living with HIV. 

She is now using her lived experience of the disease and communication to educate women and the public on what living with HIV actually means, and to break down the stigma that she faced for so long. 

In this week’s Changemaker, she discusses how the landscape has changed for women living with HIV, what she wants to achieve as chair of the organisation, and how being at the helm of the organisation has changed her outlook on life.  

Was it your diagnosis of HIV that led you to Positive Women? 

I was diagnosed in London at a time when there were no effective treatments. It was a very scary time to be diagnosed because it was basically a death sentence. I went on one last journey, travelling by motorcycle across the Silk Road. I was then hospitalised with AIDS in Cairns, but by that time there was a treatment I could undergo.

It was when I moved to Melbourne that I began to engage with Positive Women, which was fantastic because I was living very much in isolation with my disclosure and seeking support. 

What skills have helped you most in your role as chair of Positive Women? 

When I moved to Melbourne I worked as a journalist for a number of years, and then after a couple of years moved on to the NGO sector. I worked for Plan International as a media officer and advisor for six years. That was really great because I was able to work on a lot of HIV projects, and I was able to disclose to my bosses about living with HIV. It was a hard thing to do because there is a fear that your employer will just overlook you for any kind of promotion, but that wasn’t the case. They were in fact very supportive and I was able to develop my communication and policy skills a lot in that job and use my skills in journalism and my passion for health to make the situation better for women living with HIV.

How would you say the landscape has changed for women with HIV since you first got involved? 

It has improved, but women are often diagnosed with HIV too late and may have had the virus for many years without knowing because doctors don’t always test for the disease.  When you go for a sexual health checkup, you actually have to opt-in for an HIV test. That’s something that we are trying to change so that women need to opt-out for the test. 

It’s so important to be tested early before the damage is done to your immune system because once you start to take the antivirals, which for many people have minimal side-effects, it can protect your health in the long-term. A big problem is that women don’t know anything about HIV, they don’t see any information about it and they don’t know about new treatments. The first time they’re diagnosed is the first time, really, that they receive all this latest information, and that’s something that needs to change. 

What are you hoping to achieve as chair of the organisation? 

My aim is to really promote u=u [undetectable equals untransmittable] and fight the stigma that still surrounds the disease. For me, the underlying problem for a lot of women is people’s fear. Fear of getting support, telling their family and friends, and even fear of being tested.

We’ve got this new project, Women, and HIV: Tell the Story, and the aim of that is to raise awareness of stigma and really build resilience in women living with HIV, to feel confident, to speak out publicly or even just to speak out, to talk to family and friends and not feel that fear of being rejected. 

How has the experience of being a chair of an organisation like Positive Women changed your outlook on the world or changed the way you live your life?

It has really enriched my life. If I wasn’t diagnosed with HIV I wouldn’t be involved with this to the high level of governance and actually be able to contribute to improving the community in that form. I’d be completely oblivious to the whole thing and the need for Positive Women otherwise.