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Reclaiming my time!

I was diagnosed with HIV at 21. I was just out of a three-year relationship. Because of my diagnosis, I was told that I couldn’t get a residency visa to Australia where I had a job waiting for me. I had to get biopsies of growths on my tongue. The side effects of my first HIV treatment were so bad that a psychiatrist wanted to put me on anti-psychotics.

In 2012, living with HIV in Ireland felt like living in a vacuum. No one talked about HIV. I knew no one living with HIV. I couldn’t run away from the idea that I was the only 21-year-old living with HIV on this small island. I was overwhelmed with a sense of isolation.

“‘No one will ever want to touch me again”’, was a recurring thought that I couldn’t avoid.

When you are diagnosed with HIV, and completely ignorant to what the virus is, you can dehumanize yourself. You can feel ‘dirty’ or ‘unclean’; words that are thrown around and about people living with HIV as if we are nothing but vectors. Back in 2012, it was so hard not to see yourself in that light. The last thing anyone living with HIV wants to do is to pass on a chronic health condition to someone.

One wintry night in Dublin in 2013, I sat across from the guy who I was then dating, Maurice. It was the night I was planning to tell him my HIV status. Telling someone about your HIV status is nerve wrecking. Every single time you do it, you are putting yourself in an immensely vulnerable position. You will never know how they will react.

In fact, one thing I am constantly asked by other people living with HIV is: “‘when is the best time to disclose your status to someone?”’. For me, I have had set a five-date rule for several reasons.

Firstly, they may start being rude to the waiters on date three. Red flag.

Secondly, maybe you don’t feel safe telling them or find out quickly they’re the town’s rumour mill and you would prefer to keep your status private.

Thirdly, people who are uneducated about HIV are more likely to be stigmatizing. Having 5 dates can give you time to bring up a conversation about STIs and you can gauge their reaction.

Lastly, people tend to dehumanize people living with HIV. Over five dates you begin to get a good feeling about what direction this relationship is taking. So, when you tell them, they know and see you as a person, and don’t immediately see you as an infection.

This used to be my golden rule.

That wintery night was my fifth date with Maurice. I was going to tell Maurice that, when a person living with HIV takes their medication and gets the virus levels in their body to an undetectable level, it was extremely difficult to pass on HIV, with or without the use of a condom. Well, that was what we were told back then anyway. From a public health perspective, a very small chance of passing on HIV is a big achievement. However, any little chance of the virus HIV being passed on, irrespective of how small that chance is, no matter how small, is always amplified in everyone’s head.

So, I told him. As I nervously waited for his response, I knocked down my glass of Pinot Grigio.

“‘I don’t know much about HIV but I can look it all up... anyways. I guess it’s just one more thing that fascinates me about you”’. I was stunned.

For so long, I thought I was untouchable and when I finally took the plunge and told someone I was emotionally invested in and got THIS reply, I was simply stunned.

For the first year and a half, Maurice and I wore condoms all the time. I took my medication every day and Maurice would get a HIV test every six months. Although it became the norm in our relationship, it was emotionally draining. Every time we finished sex, I would instantly check to see if the condom had broken, and let me tell you, that can really take away from the happy ending. A year and a half of great sex, but with an anxious ending can really change one’s relationship with sex.

Then one night in 2015, Maurice and I saw the preliminary results from the PARTNER Study that showed zero transmissions of HIV in serodiscordant relationships where the virus of the partner living HIV was undetectable. Better yet, we found out that they were still recruiting serodiscordant couples in Dublin, and that we fit the bill perfectly. After some pushing from Maurice and lengthy discussions with the research nurse at my HIV clinic, Maurice and I enrolled in the study  (Editor's note. Serodiscordant refers to a couple where one party is positive, one is negative).

What was expected of us in the trial? Nothing extraordinary if you ask me; have sex without wearing condoms, tally up how much sex we had over 3 months,  and then share the number with the nurse - always quite an interesting experience for any couple to share with a nurse - Maurice got an HIV test every 3 months and I got checked to see if I remained undetectable throughout the study. All of Maurice’s HIV tests came back HIV negative. Maurice and I were living proof of U=U (Undetectable = Untransmittable).

For over two years, I had felt that I could pass on a chronic health condition to those I loved most. Now, no more!

The most liberating thing about U=U is that you are no longer a risk, but a solution. Imagine if we got everyone living with HIV diagnosed, on medication and with an undetectable virus, we could effectively end new HIV infections, and AIDS related deaths.

For so long, my relationship with sex was complicated by a virus. Now I find my five-date rule slightly redundant even though it may, however, still be useful for others who are also living with HIV. Unfortunately, the level of knowledge around U=U remains low and HIV stigma remains high. Nonetheless those of us living with HIV have one of the most powerful tools at our disposal to fight against preconceived notions of HIV transmission: U=U.

Every time I take my medicine, it is an act of preventing transmission, and survival. Never again will I see myself as ‘unclean’ or ‘a risk to others’. The only time HIV plays a role in my life is when I take my medication before bed.

Maurice and I have now been are now together for five years, and believe me, when it comes to sex, I am definitely reclaiming my time.

Below is a short film about the remarkable impact of HIV treatment on people’s lives


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