At 2pm on 21 November 2013 – ten days before I was to coordinate and host JOY 94.9’s award winning global conversation about HIV, World AIDS Day Worldwide, I was diagnosed HIV positive. How could this be?
A close, HIV positive friend was my first phone call. I came straight out with it, expecting him to comfort me in my time of need with gentle but reassuring words of love and support.
‘Right,’ he said loudly and firmly down the phone.
‘Absolutely under no circumstances are you to reveal your status to anyone for the next three months. YOU GOT THAT?’ he yelled.
‘Did you hear me? Three months – not anyone!’ he reinforced.
While I certainly didn’t understand his unorthodox approach at the time – and boy, did I let him know that, too – his advice was perfect, enabling me to focus on my huge workload.
I had been silenced.
Being involved with the AIDS 2014 conference was both a blessing and a curse. There was always plenty of work to keep me distracted and avoid dealing with my situation. The conference itself meant being surrounded by the world’s best scientists, doctors, researchers and community leaders, so I couldn’t help but be inspired and energised. What better time to reveal your positive status than when surrounded by more positive people in one spot than ever before? My secret remained.
Although my work continued unabated, inside I felt disconnected from the words I put to air. Somehow I felt inauthentic. A phoney.
The unique structure of the PLDI course reminded me of the AIDS 2014 conference, reflecting the diverse nature of the epidemic, the vast demographic of PLWH and the absolute importance of positive voices sharing their lived experience to the big wide world.
The Positive Leadership Development Institute course reinvigorates leadership and creativity within HIV communities, the HIV sector and beyond. My participation in PLDI has given me back my voice, enabling my authentic, active participation in sexual health communications.
Emerging from a ‘Decade of Silence’, people living with HIV are finding their voice again and this time their tone is empowered. TasP and PrEP are facilitating a new paradigm of personal responsibility and community protection. For me, the AIDS 2014 conference marked the beginning of a new decade in the global HIV response and the ‘Decade of Individual Empowerment’ has begun and I feel honoured to be a part of it.
Sadly I have witnessed too many good people self-destruct when negativity overcomes their will to live. In the 1990s I lost several friends to suicide. Unwilling to place their faith in science and exhausted by the endless stigma of living with HIV, they truly believed it to be the only option. Today our options are many but stigma remains, impacting all, regardless of HIV status.
There will be no end to HIV if we allow the stigma associated with it to exist. Stigma is manifestly unwarranted and grossly misguided. Stigma’s dehumanising impact is a poor reflection on us all. It extinguishes compassion, empathy and life itself.
Since disclosing my status publicly, I can honestly say my communities, colleagues, family and friends have been wonderful with their support, encouragement and love. They have enabled me to keep the conversation going.
Participating in PLDI has opened my eyes the needs of HIV communities beyond the gay bubble. My challenge now is to ensure their stories are heard too, their needs met and their lives made just that little bit easier.