I was just 24 years old when I was diagnosed with HIV and hepatitis C. I was diagnosed with HIV over my lunch break from work, then a week later I was told I also had hepatitis C. It came as a complete shock, and this double whammy had a huge impact on my life. I felt fear, shame, grief, and anger.
I had no physical symptoms of hepatitis. I had been accessing STI testing from the age of 17 and always aimed to have safe sex. Because I was tested regularly, this meant that the viruses were diagnosed early on and I was able to access treatment as soon as possible.
Emotionally, though, hepatitis C had a huge impact on me and I felt the stigma of my diagnosis acutely. Having been diagnosed with both HIV and hepatitis C, I had to deal with the dual stigma of being co-infected. I felt alienated from HIV negative men on account of my HIV, and I felt alienated from HIV positive men on account of my hepatitis C. I didn’t know where or how to fit in. I felt isolated. I really did feel that I was alone.
The year of my diagnoses was particularly difficult. During this time, I contemplated taking my life on three occasions. What pulled me back was thinking about the impact that this would have on my family and friends. I attended support groups where I met with other people living with HIV and hepatitis C. Hearing about their journeys really helped me come to terms with being HIV and hepatitis C positive, and I was able to gain objectivity and learn more about the viruses. This objectivity allowed me to slowly gain more acceptance around my diagnoses.
Though it took me a number of years to come to terms with my hepatitis C, once I had achieved it, I really wanted to speak out because there is a real lack of awareness around the virus. In 2014, I started writing for the Huffpost (a popular online magazine) and in 2015, I left my job as a lawyer in the City of London to concentrate full time on my activism. I’m now a gay rights, and human rights activist and a writer. Ultimately, my diagnoses empowered me and I really wouldn’t be the person that I am today if it hadn’t been for them.
I am very privileged to have the voice that I do around HIV, hepatitis and human rights issues. I have magazine columns where I frequently write about hepatitis, and I discuss it on radio, and on TV. I try to be as candid as possible about my own journey with hepatitis C. We need to raise awareness around the virus and educate people. Being an activist doesn’t just mean taking part in protest marches. I would encourage anyone who has the confidence to do so to speak about their own experiences with hepatitis – personal stories and experiences are very compelling and help to break down stigma. After all, hepatitis doesn’t discriminate and people from all walks of life can have it.
I accessed treatment for hepatitis C in December 2016. I found the 12-week treatment to be side-effect free and it was an amazing feeling when I cleared the infection. It felt like a huge weight had been lifted from my shoulders. I no longer had to worry about the potential health consequences of hepatitis C.
I think that it is really important that we find the many people who are living with viral hepatitis but are undiagnosed. We need to dramatically increase testing and, in my view, we need to aim to move testing beyond prisons, beyond substance misuse services, beyond sexual health clinics. It needs to become the norm that people are tested. This would help break down stigma surrounding the disease, too.
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For people living with a hepatitis condition, it really helps to know they’re not alone. That’s why we’re inviting people to share their stories.