My name is Matt Cater and I have been living with HIV for over 22 years, five of which I was unaware I was positive. It wasn’t until 2002, after getting quite sick that I found out I was living with HIV.
I can clearly remember being told I had a T-cell count of 11 and a viral load in the millions. In plain English, this means I had only 11 cells in my body to defend my immune system and the HIV virus was multiplying at a frightening rate! The average healthy person has somewhere between 500-1500 T-cells.
I literally thought I was about to drop dead. 11 T-cells! Really! How was I even still alive?
My biggest initial fear, other than dropping dead at any given moment, was that I had passed it on to my partner. Thankfully, he was quickly tested and the result was that he was still negative. It was my partner at the time, my HIV specialist and the nurses at St Vincent’s who became my first ‘community’ upon whose support I relied.
For at least 11 years after my diagnosis, it was this small community that allowed me to talk about my fears, shame and self-stigma I felt after being diagnosed. I felt I’d let myself, my partner and my friends who had died from AIDS-related illnesses down. It was support from this first ‘community’ that started me on my HIV journey and without them I don’t know what would have become of me. Today I am living with a T-cell count around 1200 and a much desired undetectable viral load (UVL), which means I have such a low measure of HIV virus in my blood, it is undetectable and therefore I cannot transmit HIV to my sexual partner!
When I think back, I realise that I had already been part of a community reaching out to others also living with HIV. In the late 80’s and early 90’s, I remember how my chosen gay family and I rallied around our sick friends, many of whom lost their battle for life. It was the women who were the core of that community, both straight and gay, and I think that deserves a special acknowledgement. I know that my friends who are no longer with us, were extremely grateful for the love and support we showed them.
For many years I lived with my dark secret of having HIV and it wasn’t until the breakdown of my relationship, 16 years after we met, and 11 years after I was diagnosed that I felt the need for community once again.
At first, I found my others like myself, who were my peers living with HIV, both online and face-to-face, who gave me the courage to ‘come-out’ about my status. Without contact with my peers living with HIV, I would not have found the courage to be the man I am today. They offered me education, perspective, love and support and it has been my peers who have supported me to become a more confident person and, dare I say it, a better person.
From the initial outbreak of this so-called ‘gay cancer’, to today’s reality that HIV affects anyone regardless of sexuality or gender, community has been a main reason we celebrate the life-saving advances we have today.
There are so many communities that have been important in the response to HIV/AIDS over the past 40 years. Communities of researchers, scientists, clinicians and peers have bought us a range of solutions and tools such as combination antiretroviral (cART) medication; pre-exposure prophylaxis or PrEP, which is a medication to prevent people from contracting HIV; treatment as prevention (TasP) which restricts HIV from passing to our sexual partners and the science behind undetectable = untransmittable (U=U), along with crucial social and emotional support from many organisations both peer-based and service-based.
From the activists in the early days of the epidemic to the mums and dads who in the face of stigma and fear still loved and supported their children who they were soon to lose, to the medical community and researchers who have and still continue to do everything they can to make this virus a thing of the past, including the gay and lesbian community who fought governments to address this insidious virus and rallied behind people living with HIV (PLHIV) offering love, support and hope, to the sex-worker community, injecting drugs community and even governments. It was all of these communities that have helped us to reach the place we are today.
A place where HIV is a chronic and manageable disease that is no longer the death sentence it was (at least for us in Australia) and where people like me are able to look forward to long and fulfilling lives.
In conclusion, I want to say thank you and I love you, to all of the community that have supported me and others in similar shoes, over the years and who continue to do so. I am confident that with the support of communities, one day in the future (hopefully the near future), HIV/AIDS will be something we only remember rather than live with. Until that day comes, all we can do is fight for, love and support those living with HIV to thrive.
Matt Cater
