In 2021, NAPWHA held consultation activities to give us a clearer picture of what drives good and bad quality of life for people with HIV. A surprising picture emerged. It seemed there might be a connection between meaning and belonging — a relationship between the stories people feel able to tell, and their sense of being connected and supported in their social world.

Greg Kelly at his book launch for "Start With Your Own Onion" in Sydney Nov 2022.

Greg Kelly at his book launch for “Start With Your Own Onion” in Sydney Nov 2022.

Before each workshop I would call participants to ask some preliminary questions. This gave me a sense of what stories participants can share — and what topics might be too painful to cover. Some participants who ended up having the most powerful stories found this process surprisingly difficult.

One participant, Greg Kelly, interrogated me at length on why I thought he might have something to share. Yet, on the day, Greg spoke powerfully about living with accumulated trauma, grief and loss from the early days of HIV. I felt bad having to move on to the next speaker when it was clear there was so much more to say. (Greg later spoke at our AGM, and copies of his autobiography, Start with Your Own Onion, are available to purchase from QPP.)

In the second decade of the epidemic, HIV organisations offered grief and loss workshops for people living and dying with HIV and people who cared for them. But trauma is a different substance from grief and loss. Trauma is experience that stubbornly refuses to become a memory, insisting instead on being relived. This can happen through flashbacks — re-experiencing the event in a way that intrudes on the present — or less obvious symptoms like dissociation, anxiety, nightmares, and persistent changes in worldview.

“Trauma is experience that stubbornly refuses to become a memory, insisting instead on being relived.

People with post-traumatic stress disorder (PTSD) often go to great lengths to avoid any reminder of traumatic experiences. For people living long-term with HIV this can include telling stories of the early days of the HIV epidemic. But many who lived through those years feel a profound obligation, as ‘the last of their number,’ to remember the dead and to recall both the dark times and the community response to the crisis. Many are feeling the loneliness of having stories that cannot be told and will not be heard.

This points to the importance — but also the difficulty — of creating opportunities for ‘HIV elders’ to share their stories while being supported in grappling with the symptoms this can trigger for them. In the long run, turning traumatic experience into a story can be therapeutic — it can mean you remember the story rather than having to relive the experience. But if the initial story-making process goes badly, it can be re-traumatising instead. This is complicated terrain and HIV organisations need to tread lightly. It is vital that our activities are culturally safe and trauma informed.

Feeling able to tell your story is only the first part of the equation — the second is feeling sure you can be and will be heard. HIV organisations have a crucial role to play in curating cultural events that allow diverse people and groups to develop the skills they need to hear and engage with HIV histories. We train people with HIV in public speaking, but I don’t think we recognise that every presentation by a positive speaker is training an audience in public listening. Public listening skills are necessary to make it safe for HIV elders to tell stories of traumatic experience, stories which rarely fit into a neat, linear timeline, often involve tangents, and stop and start as emotion momentarily takes over.

Greg’s story illustrates this. You can watch Greg’s contribution to the 2022 Beyond Resilience virtual congress on Youtube.

I started our interview with an easy question — why did you write your book? Almost as soon as he’s begun talking, Greg interrupts himself, to acknowledge the hundred-plus friends and lovers who died horrific deaths from AIDS. ‘They tried every experimental treatment possible, and the resulting knowledge gained by science is the reason I and we are here today.’ He changes the topic again: ‘one of the things I’ve noticed on social media, which I find of dubious merit, is the rewriting of history. I’ve been called by gay men a liar, for some reason lived experience isn’t validated, from my observations…’ Regarding the book, Greg says ‘It was very important for me to connect my story, essentially it was going to be for my 12 nieces and nephews, but it did have a broader approach, essentially, as a long-term person with HIV whose career was taken away from me — nobody ever wanted a vomiting diarrhea chef! So, my recipes were connected to my beautiful friends who have gone away so it was very important for me to capture what I had, because many of those people didn’t have families — their family was their small network of friends who organised their last wishes, their funerals and all of that sort of stuff…’

This isn’t easy to follow but we should not expect these stories to be easy. Greg is telling two stories simultaneously — the top layer is about how and why he wrote the book, but a second layer of narrative keeps bubbling up through it: the story of the friends he lost, their desperate fight for survival, and the debt he feels to them, as well as the career he gave up and his uncertainty about being heard and valued in the present.

“This isn’t easy to follow but we should not expect these stories to be easy.”

My sense is that young queer people today have a hunger to learn about HIV histories. That comes from my engagement with young queer people through my social media presence, my activism on PrEP and HIV stigma, and the PhD I am completing on the U=U movement. Everything is relative, of course. I’m comparing the young people I meet today with my own generation, which came out in the 2000s, when the public considered HIV a problem ‘solved’ by combination therapies.

The only time we saw HIV in the news was when AIDS councils were being castigated for rising diagnosis rates, or worse, when people with HIV were under prosecution for wrongful transmission. That generation could not have been less interested in hearing about the ‘bad old days.’ So, if HIV elders think young people are uninterested in their stories, that’s not ungrounded.

But I suspect that times have changed. While writing this article I asked around for impressions of young people’s interest in HIV. More than one person told me young people today are influenced by memories of the Grim Reaper campaign. That campaign aired in 1987. I saw it live in my living room, aged six years old, and I am now 42! Gen Z and most of Gen Y never saw it. There is an opportunity to engage young people in the history of the epidemic and this is, equally, an opportunity for HIV elders to feel heard and included. This is an opportunity we should seize before we lose more of ‘the last of their number.’

Beau Newham leads the Viral Stories project for LPV, a HIV positive storytelling night that aims to promote wider community engagement with the full diversity of experiences of people with HIV in 2023

Recent initiatives give me cause for hope. One is the Viral Stories project convened by Living Positive Victoria and led by my colleague Beau Newham. This initiative offers training to people with HIV of all ages to tell their stories — not just about HIV but about any aspect of their lives. The end product will be a story-telling night open to the public. It will challenge audience members to overcome their own fixed and frozen stereotypes of positive people and HIV lived experience. The initiative builds on smaller public story-telling circles, also facilitated by Living Positive Victoria, that allowed people with HIV to share their experiences with a diverse and supportive audience composed of other PLHIV. I have also been heartened by the strong audience response to events like Beyond Resilience and Finding Joy — webinars that emphasised personal interviews and story-telling as a way to connect with others around diverse lived experiences.

For years we have done a great job telling the story of HIV through Positive Speakers Bureaus to the general public. The time has come to build that connection between meaning and belonging — telling our own stories to our own communities of people living with and affected by HIV.

The Meaningful Involvement of People with HIV in Research

Positive people have a long history of involvement in research. Indeed, we wouldn’t be where we are today without the positive people that came before us, who participated in research even though they were sick, even though they often knew that research would not benefit them personally.

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Last year, HIV Futures 10 was released and heralded that smoking rates among its participants had dropped dramatically. While over 50% of the total sample were daily smokers in the early 2000s, the study showed that today only 20.8% of people with HIV report they are tobacco smokers.