In conversation: Women living with HIV on what they want clinicians to know

As part of this year’s National Day of Women Living with HIV, we spoke with two long-time advocates, Del Batton and Kath Leane, about what women living with HIV most want from their clinicians. Their messages are clear: women living with HIV want healthcare workers who listen, stay informed, and recognise that women’s experiences of HIV are unique and multifaceted.

Why is this year’s theme, Herstory: Unique and United, meaningful to you?

Del: Every woman’s experience of living with HIV is different. We are unique in its challenges, its context, and its emotional impact. But when we come together, we learn from one another and build strength. This theme captures both truth, our individuality and our unity.

Kath: I’ve been part of the National Network of Women Living with HIV for 15 years, and this day was created to give women living with HIV a profile. In Australia, we roughly represent 10% of the HIV positive community, so may be small in numbers, but we are mighty. This theme speaks to that strength and to the importance of connection.

For me, it’s also about sisterhood. When I was diagnosed, I felt like the only woman with HIV in Australia. People could only talk about women in Africa. That loneliness pushed me to help build a peer network so no woman would feel that way again. Hearing another woman’s voice, someone who understands what you are going through and what is important to you, it can be life-changing.

If your regular clinician was in front of you today, what is one thing you would say to them?

Kath: I don’t just have one regular clinician. I have a strong care team who all support me in different ways. The one thing I would say to all of them is that ‘I’m more than a walking virus. I am an individual and treat our relationship as a partnership’. Those doctors, specialists and nurses who have truly made an impact to my care take the time to get to know me and my life. I feel heard and not just spoken to. The impact it has when someone listen to our voices, learns about our lives, and consider our ideas, it’s really powerful.

Del: As someone who is living in a remote area, I have minimal choices with the health care providers who I see. My message to all clinicians is very simple, please stay up to date with current research, especially around the -long-term impacts of HIV medications on women as we age. And please talk to newly diagnosed women about peer support. Diagnosis can be incredibly isolating, and that hasn’t changed enough.

What do you want other healthcare professionals to know about women living with HIV?

Del: Women get HIV too. Unfortunately, this isn’t widely understood and until it is women will continue to be diagnosed late and face stigma and discrimination. I was diagnosed in the late 90’s in a remote part of Australia and until recently I was not open about living with HIV. I want all healthcare professionals to know that stigma and disclosure concerns are unique for women, and these challenges shape our health outcomes and our experiences in the system. Awareness across all healthcare settings, not just in sexual health is essential to support us to thrive.

Kath: I want healthcare professionals to understand the full human experience behind the diagnosis. Living with HIV is an emotional rollercoaster. Some days I don’t think about it; other days it’s all I think about. I’ve built up resilience over 40 years, but even now, one negative experience can shut me down. If I feel judged, I won’t return. Ask questions in a way that educates and supports, not shames.