No 200 December 2017
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Looking forward to change with HIV
Anth is an Australian community member with haemophilia and HIV
This is a transcript of Anth’s presentation at the 2017 Conference.
Photo right: Me, Jennifer and the kids in 2016
It’s great to be here with you, looking forward to change. I am a person living with a bleeding disorder and HIV. I’ve been asked to share some of my experiences of disclosure, survivorship and some of the financial issues of living with haemophilia, HIV and hep C.
Last year, on World AIDS day, December 1, I used social media to publicly disclose my status as a person living with HIV. For a long time I could not have contemplated doing such a thing. I felt compelled to hide what I thought was a weakness. It took me over 30 years to learn that it was in fact a strength and that I have something to offer by sharing it.
Treatment for bleeds at the children’s hospital
I was born with severe haemophilia A. By the mid-80s I’d acquired HIV and hep C from factor replacement made from human blood donations. My parents and I thought I was going to die from AIDS, and we were scared and bewildered. Our situation was repeated in many families and the majority of those of us who medically acquired HIV are gone. I want to acknowledge that the pain and grief continues right up to today. You can imagine how fortunate I feel to have survived through to this era where antiviral medicines are so advanced and effective.
It was frightening and confusing to be a child living with HIV with such a high level of fear in the community. People poorly understood how it was passed on. I heard the idea that God sent AIDS to punish certain behaviours. My parents and I heard the jokes and derogatory references. I feared bullying if my secret got out. To an extent, I began to internalise those negative messages about people living with HIV.
With another student on crutches at school
I missed a lot of school due to bleeds and I absolutely hated going on crutches. It meant revealing that I had something wrong with me. Haemophilia wasn’t easy to explain and it was now associated with HIV. In the photo of me at school on this occasion there just happened to be another kid on crutches.
My parents and I quickly worked out that my connection to HIV was something to hide. Secrecy felt like a pathway to survival. We feared being ostracised and we isolated ourselves from support by not telling a single other person.
It was really tough for Mum and Dad, but they did amazingly well with what they had. We could barely talk about HIV, even to each other, but I never questioned their love. They provided me with a safe place where I could be myself and where I felt valued. I had a happy childhood despite the bombshell of HIV. I believe they provided the best possible foundation from which to build resilience.
Graduating from Year 12
By the time I was graduating from Year 12, I’d made the conscious decision to be optimistic, and to fight HIV, and live the best life I could. But I was beginning to feel very lonely in my struggle, and desperate to take some control over the isolation.
I decided to tell my siblings about what I had been dealing with. It was honestly one of the hardest things I’ve ever had to do. I remember my palms sweating and voice shaking. I had to say “I have HIV” aloud. I realise now what an important breakthrough that was. It enabled me to begin a slow careful process of disclosing to others close to me. It was always difficult, but it was incredibly rewarding. I found that revealing that I had HIV allowed me to feel more connected to the special people who would love and support me regardless of HIV.
My partner Jennifer
One of those people was Jennifer. I disclosed to her when she was my friend and house mate, before we formed a relationship. Jennifer is a unique, wise and wonderful person. She is just one of many non-HIV positive partners of people living with HIV. Love overcomes HIV.
So why did I feel the need to publicly disclose? The best way to answer is to read some of what I had to say;
Dear friends, family, strangers, world,
Today is #WorldAIDSday and to celebrate I'm coming out of the viral closet. I am proud and grateful to be a long term survivor of HIV. I have been living with this virus for over 30 years and I’m in remarkably good shape. Now that is something to celebrate!
Until now I have concealed my status in fear of the judgement and stigma that comes with it. HIV stigma is complex, insidious and toxic, and it undermines the welfare of people living with HIV in many ways. But it does more than that. HIV stigma interferes with HIV prevention. It is a threat to the whole community, not just those living with HIV.
So, I have decided to own being HIV positive and to strike back at stigma. I’m sick of allowing others to feel more comfortable by hiding HIV. I have nothing to be ashamed of. I no longer feel vulnerable to judgement or shame. Whenever I have confided in a friend, I have been rewarded by the kindness they show. In my experience, most people on the planet are like that.
Please remember that people living with HIV feel the threat of stigma acutely, and often choose not to disclose. You just never know who might be silently living with HIV - I’m proof that not everyone with HIV fits the stereotypes. So please take care how you think and speak about HIV. Your words can be hurtful, and they can be healing.
Hitting post that day is one of the most satisfying things I’ve ever done. After years of fearing that others would disclose for me, I chose the time and means to make a strong statement. It felt great to celebrate in that way, and to free all those people who had kept the secret for me.
I was overwhelmed by the supportive and affirming comments that my post received. I still need to disclose from time to time, but life is easier now. It takes a lot of energy to hide a secret.
In 2013, I was very fortunate to clear hep C. I can’t tell you how joyful that felt. To get rid of a virus, rather than take one on. My co-speakers today, Dr Edwina Wright and Dr Joe Sasadeusz collaborated with me on that project for many years including three rounds of treatment.
Haemophilia, HIV and hep C would normally cause financial hardship. Thankfully, that is not my story. I received a financial settlement for damages in 1991, and because I resented it for the way it came to me, I refused to spend it, and it was invested for me by Mum and Dad. Wow, am I thankful for that now. Jennifer and I own our home outright. I have never been able to sustain full time work but I’m eligible to claim the disability support pension while working part time.
I put my survival down to the kindness and compassion shown to me in difficult times. As we look forward to change; while we hear about all the medical advancements, fresh new thinking and the role of technology at this conference, let's just acknowledge that underpinning our efforts is our ethos of kindness and compassion. It's a powerful thing. Days like this, and gatherings of people like you, who I know work from a base of kindness and compassion fill me with hope for a bright future.
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Date last reviewed: 7 December 2017