Public Speaker, Community Advocate
“I am a Hep Hero because I want to speak out against discrimination, stigma and judgment wherever I see it”.
Like many others, I did nt know I had hepatitis C until much later in life. When I was 30 (in 1990), I had a blood test to hopefully confirm my first pregnancy. Without pre or post test counseling I was also informed of my hepatitis C status.
It was a big shock. I deliberately chose to disclose to people about having the virus and noticed that generally, my disclosure reduced respect towards me. I found my community to be seriously misinformed yet judgmental to hepatitis.
I resolved to speak out against discrimination, stigma and judgment wherever I saw it.
It was not till 2008 that I was rushed in treatment. I was Genotype 2 facing 24 week treatment on weekly injected Pegalated interferon and daily oral Riboviron.
Although I thought I was prepared, I was about to be physically and mentally devastated and soon became too unwell to work or to organise support for myself. I did not have sufficient awareness of the physical and neuropsychiatric effects of the drastic treatment I was undertaking. I was isolated, alone and frighteningly unwell.
It was 12 weeks into a 24 week treatment when my limit was reached. It was the most dreadful night, my blackest night. I was at the edge of the abyss leaning into the seductive darkness of despair. ‘I must be mad’ I told myself as I sharpened my biggest kitchen knife to wield on those responsible for the diabolical drugs enraging my mind and a system that did not support me.
Desperately seeking help, I called several telephone services. Help was hard to find but it came when a man spoke gently to me on the Hepatitis Victoria Infoline.
He talked me away from my murderous thoughts and steered me to hope through his calm understanding. He called me back from the abyss and saved my life. It was the blackest night of my life but I was now not alone.
Although it took me another 2 years to physically recover from treatment, emotionally I had been traumatised and devastating psychiatric symptoms have persisted to this day.
The enormity of my experience and impact could not be left there so I sought ways to make change. I now speak out and advocate to improve access to, and experience of, treatment.
Every talk helps to increase understanding, reduce stigma and may be the encouragement people need to get virus free.