When I was first diagnosed with HIV, I was advised by a social worker to be silent. To not tell people for fear of the prejudice, discrimination and rejection that was possible. At the time I was shocked. My instinct was that the last thing I needed at that time was social isolation. Upon reflection, I understood that my priority was to focus on myself and building the strength and security to face other people’s potential responses.
After diagnosis it took a few years for me to gradually tell my friends. It would take me eight years before disclosing with my family and 15 years before disclosing at work and even then, only to a very few.
It was not until recently, that I have felt more comfortable to share my status more openly, including participating in this year’s Mardi Gras parade – my first time on a float, representing Positive Life NSW. It took many years, therapy and personal growth to learn that silence and shame are bedfellows and that my silence was feeding the shame within me.
I found myself asking, “who values from my silence”?
Yes, it is true, if no one knows my status I can avoid stigma and discrimination, but I found my own shame eating away inside of me. My silence was hurting me more than it was hurting anyone else.
I am fortunate enough to have a wonderful support network, and today I feel I owe it to myself and the HIV community to be more open about my status. After all, it is a disease and there are many diseases. There is no reason that HIV should be treated like we do with most other diseases… with care, compassion and support. Knowing that I have support through friends, family and my connection in the HIV community has helped to give me the confidence to find my voice in recent years.
We live in a very different time to the early days of the pandemic, and in the age of PrEP, PEP and ‘treatment as prevention’ (TasP), coupled with the improved quality of life and the life expectancy that many of the HIV community now enjoy, it is tempting to avoid discussing HIV.
Yet, who benefits and who loses from a world where HIV is silenced? Not everyone enjoys the same support or wellbeing that I might enjoy today and so I feel I also have a responsibility to develop my voice, not just for my benefit, but for the broader community.
The transition from shame to pride in HIV had me asking many questions. How would it feel to be proud of the strength that it takes to receive a diagnosis and navigate the challenges that result for our emotional, physical and social wellbeing?
What would my late father say if he saw the son who faced his diagnosis alone but was able to pick himself up, show resilience and become a better person through the process? What is the worst thing that can happen if I tell this person? And does their opinion of me matter more than the opinion of those I love or the opinion I have of myself?
Everyone deserves love and belonging, and whilst HIV does not define me, it is part my story and who I am … and I want to be loved for who I am – not loved for how I might try to fit in.
That is what has given me the strength to start being more open about my status and I have found it liberating and rewarding to starve my shame of the silence that it so badly craves.
– Phil
Published in Talkabout #209 June 2024
