In Ireland we all know the difficult relationship we have with sex. Our bodies and desires tell us sex is a natural thing. Sexual health education tells us that we are tools for reproduction. Our parents rarely tell us anything. Male friends boast about their sex life to make themselves seem higher on the popularity totem pole. Our female friends hide their notches on a bedpost in fear of being slut shamed. Porn can make you feel inadequate and Irish society tells us that sex is something to be ashamed of. It’s no wonder things are fucked up.
I am also homosexual. These days we have full equality but there’s a huge swathe of society that is still put off by the idea of gay sex.
Now give a gay person HIV.
I was 21 when I was diagnosed. I was fresh out of college and was going to work in conservation in Australia. Job waiting. Money saved. Life sorted.
When the consultant turned in her chair and told me that my HIV test came back positive I felt nothing. I immediately asked if I could still go to Australia. The answer was no. I could not receive a residency visa because of my status. Then I asked would I survive? All I knew about HIV was AIDS. The image of the person living with AIDS was bright in my mind. Was I going to become that? I was reassured that the medications are so good these days that I would live a long and healthy life.
They never said anything about quality of life though.
It wasn’t until I was in the car home from the hospital with my mam that it fully hit me.“I am the only 21 year-old living with HIV in Ireland. No one will want me now.” This feeling of being dirty was overpowering. I felt alone, unclean, and ashamed.
I have never heard HIV spoken about in an Irish context. I knew no one living with HIV. Did it even exist in Ireland? How did someone who was constantly in long-term relationships, was fresh out of college, and was about to achieve his dream, get this diagnosis? What became really clear to me then was this immense sense of Other. I’ll always be different. I will always be put in the face of judgement. Being gay was one thing. Being HIV positive was another. It is like being queer squared. Queer inception. A queer within a queer.
At 21 I was a walking embodiment of the shame our society attributes towards sex. Saying people living with HIV are walking embodiments of shame may feel like a bold or dramatic statement. One only needs to live a day in the life of someone who is “poz” to understand the truth of this statement.
HIV is probably one of the most manageable chronic conditions you can have if it’s caught early. The medication that’s available isn’t toxic, it’s easy to take (1 pill a day), and gives you a normal life span. Medically we are sorted. On top of that, once you take your medication everyday and get the HIV virus so low in your body – a term we call undetectable – studies show the chances of you passing on HIV (with or without condoms) is closer to an absolute 0! So we’re going to live long, healthy lives, and we aren’t infectious.
Where is the problem?
The problem arises every time you tell a potential boyfriend. You are constantly putting yourself in the face of judgement.
Personally, I’ve always had this fifth date rule. No sex till the fifth date. That is also the date I tell them about my status. I do this because I want people to see me as Robbie, not Robbie who has HIV. It may seem like a small distinction but it is massive. You’re not labelled as a virus. You are seen for who you are. Thankfully I’ve never had someone get up and leave when I told them my status. I did experience a relationship where I was seen only as a vector. We got along amazingly. It was all going great. Then the thoughts just couldn’t leave his mind. “What if I get it? Should we be having sex so much? Is this a longterm thing?”
HIV can make you feel ashamed because sometimes people make you think that you are a vector, an infection. Every sexual act could potential give your loved one a virus you hate. The science says differently. In fact, it’s safer to be with someone who’s living with HIV and taking their medication every day, than sleeping around with people who are unaware of their status. Science tells us one thing – society tells us another.
There is also this sentence that is thrown a lot in Irish HIV society - “Once you say it, you can never take it back.” I was told this countless times. There is truth in it. This is certainly a reality in Ireland. If you tell someone, they could tell other people, it can always get back to close family and friends. What does this advice tell us though? While it is practical in many ways it has also frustrated me to no end. It makes us ashamed of ourselves for having a manageable chronic condition that cannot be passed on. We don’t tell anyone because society will see us as ‘deviant’, ‘unclean’, ‘unfit parent’. If it gets out people will know your secret.
“Once you say it, you can never take it back,” has influenced the lives of many people I know.
A woman who has not told anyone, not her partner, child, friends, family, no one. She writes to me on a fake profile and we talk for hours. She’s been living with HIV for the past 15 years. A heterosexual man who’s been living with HIV for 10 years. His wife left him. He hasn’t dated another woman. He has only told his best mate. He doesn’t want to face rejection after his last marriage. He also doesn’t want to justify his sexuality to anyone. He is heterosexual and not bisexual. Heknows it shouldn’t matter but he fears it will be another reason for a woman to reject him.
The stories go on and on.
One day I got a text from a very close friend of mine who’s living with HIV. My friend sent me a screenshot of a message he received from someone because of his status. The message was awful. I couldn’t comprehend how someone could be sent something so horrible. The message of hate was shrouded in fear and ignorance.
I’d had enough.
I decided I couldn’t go on being an idle spectator in a society that sees my friends and I as less. In that moment I made the decision to talk openly about my status and experiences and become an activist. Every time I heard people say stigmatising things it came from a place of ignorance about HIV and the anger I feel motivates me everyday.
Right now my vision is to reach zero new HIV infections, zero AIDS-related deaths, and zero stigma and discrimination in my lifetime. We have the resources to end AIDS and stop new HIV infections but we can’t achieve these goals without addressing the stigma and discrimination.
And It’s not all doom and gloom. The power of telling a story and giving a face to a statistic is amazing. I’ve seen so many people courageously admit their ignorance and apologise for how they perceived people living with HIV.
We need to start implementing change. What kind of society allows thousands of their citizens to live in shame and silence? It’s my wish for people not to be walking embodiments of shame but walking embodiments of freedom.