In 20 years living with HIV, my sanity has often been pushed to the limit

I was diagnosed HIV positive nearly 20 years ago, and living with the virus has changed a great deal. It’s not a death sentence and we’re living much longer. The panic that once held us in acute fear has thankfully dissipated. Infection rates are reducing and we hear proclamations that “Aids is over” in this country – but thousands of us are still living with HIV, its complications, stigma and prejudice.

HIV/Aids has impacted my life more than anything, and it continues to challenge me each day. I’ve lived with the virus for most of my adult life. As a teenager coming to terms with my sexuality, I faced violent homophobia. The attacks came from teachers and students, and from within my own family. I was beaten, bashed and bullied out of high school. I had chronic anxiety and contemplated suicide countless times. Queensland in the 1980s was a hostile place for LGBTIQ people. It was the era of Joh-Bjelke-Petersen and the grim reaper. The media was saturated with reports that demonised the gay community, and the thought of contracting HIV and dying of Aids terrified me.

I felt like I had no place in Queensland, so I fled to Sydney when I was 20 and got swept up in the drug scene. I was rebellious and having a wild time but I was also numbing the self-hatred about my sexuality. I took a lot of risks and put myself in danger. On some level I was punishing myself. I contracted HIV because I couldn’t accept my sexuality. Under the influence of so much drugs and alcohol, it was a crash waiting to happen.

Thankfully I eventually turned what felt like a death sentence into something constructive. I stopped using drugs and started to face myself – I accepted who I was. In many ways my life was just beginning. I became a healthy, conscious person with hopes and dreams. I studied social science and creative writing at university. I travelled to India, Europe, the US and South America. The virus was transforming me and my life for the better.

Few conditions have the same consequences for a person in terms of their self-esteem and relationships
I don’t want to gloss over the reality of living with HIV. There’s been plenty of physical and emotional struggles. My sanity has been pushed to the limit by humiliating bouts of illness and hideous experiments with toxic medication. At one stage that meant swallowing 26 pills a day and throwing my guts up on city streets. I’ve had two lengthy stints in hospital with Aids, and I’ve been socially isolated for long periods due to poverty, illness and a sheer lack of self-worth that can afflict many HIV positive people.

A twist in my journey with HIV came earlier this year. I had moved to a regional town and studied a short course to be a support worker, and the first man I was partnered with just happened to be living with HIV as well. Like myself years before, he had also suffered a bout of cerebral toxoplasmosis (an infection that attacks the brain). While I was demolished by the experience, I responded to antibiotics and was discharged from hospital a month later. This man wasn’t so lucky. He was not given antibiotics, and after a botched surgery to remove the infection, he had a stroke and was semi-paralysed down one side of his body. He spent nine months in hospital and was discharged in a wheelchair with severe cognitive impairment, stammered speech and restricted movement. He now requires weekly assistance and has difficulties with simple tasks like eating, walking and getting dressed. We meet for the gym, social outings, shopping and casual banter at cafes. I’m always impressed by his skill with crosswords, and how tidy his house is compared to mine. We muck around with his cat and talk about our love of Amy Winehouse, Blondie and Orange Is the New Black. His health and fitness improves a little each time, as does his speech and his will to survive.

While living with HIV in 2019 has improved, it’s far from easy, especially for those of us with a history of trauma from Aids-related conditions. There are ongoing struggles with medication side-effects and prejudice and discrimination. Few conditions have the same consequences for a person in terms of their self-esteem and relationships.

As we face another year, I wish I could believe a cure was in sight but unfortunately I cannot. My experience living with HIV and working in the HIV/Aids sector has shown me what we’re up against – a monolithic pharmaceutical industry that thrives on us swallowing pills for the rest of our lives. To compound this, I’ve seen Aids organisations slash services to people living with HIV. I’ve seen corporate figures within these organisations disregard the people they’re supposed to represent, while they masquerade as “activists” and forge lucrative careers.

World Aids Day has become a public relations exercise where Aids bureaucrats and the pharmaceutical industry merely pay lip service to stopping this epidemic. Almost 40 years since the first cases of Aids, a cure is still nowhere in sight. I hope they can move past their profit motives, egos and “brilliant careers” and give some thought to what it’s like for people who are living with HIV. Thousands of us still endure high rates of poverty, mental health issues, social isolation and prejudice and discrimination in this country. Thousands are still dying of Aids around the world.