HIV/Aids 40 years on: The real battleground is fear and shame

Since its discovery in 1981 HIV/Aids has become an entirely manageable illness; the biggest challenge now is stigma and shame

Fionn Kidney: HIV is now among the most manageable long-term health conditions you can live with.

Fionn Kidney: HIV is now among the most manageable long-term health conditions you can live with.

 

On Christmas Eve five years ago, I got a call from my doctor to tell me that I had tested positive for HIV. As a gay man, this diagnosis was my deepest fear come true, and it was devastating. But since then I have come to understand that much of the way I felt about HIV was rooted in an outdated stigma, rather than a medical reality.

Barely 24 hours later, still shellshocked, I found myself chopping carrots for the family Christmas dinner, doing anything I could to avoid conversation as I processed the news. The knife slipped. And I will never forget the sight of my own blood in that visceral moment – it felt foreign and scary. 

My mind was racing. Had I contaminated Christmas dinner? Had I endangered my family? I was experiencing the greatest trauma I had imagined possible, and though I was surrounded by a warm and loving family, I felt I couldn’t ask for help.

In the two years after my diagnosis, my thoughts and behaviour would continue to be deeply affected by fear and shame. I was not okay. Even despite having open, loving, compassionate family and friends all around me, I didn’t feel comfortable disclosing what I was going through. 

I was afraid that I could never be happy again; that I was unlovable. That no one else would ever want to have a relationship or sex with me again. And so I withdrew from the world, with a deep anxious pain in my stomach, constantly. 

A little known fact is that Aids is the leading killer of young girls and women all over the world right now... in Ireland in 2018, one of every five new cases of HIV were female

However, thanks to the huge medical advances in the treatment of HIV/Aids since its discovery 40 years ago, I have since learned that the real issue I was dealing with that Christmas Day was an outdated stigma. HIV is now among the most manageable long-term health conditions you can live with. Since my diagnosis I take just one pill a day, experience no symptoms or side effects, and can enjoy a normal life expectancy. 

And thankfully, like anyone who is living with HIV on effective treatment these days, I will never develop Aids. In fact, the medication eliminates so much of the HIV virus in my bloodstream that it can’t even be detected and is completely untransmittable. This means that I can never put anyone at risk or pass HIV on to anyone – perhaps the most important breakthrough around HIV since it was discovered. This transformative fact is known as “undetectable equals untransmittable”or “U=U”.

This means that along with people who have received a negative HIV test result since their last partner, in terms of avoiding the virus those living with HIV on effective treatment are the safest people you can have sex with.

Stigma

Despite this fact, there is deep residual concern around HIV. I feel lucky to have been able to banish my own feelings of fear and shame, for the most part, thanks to a combination of time, science, love and therapy (not to mention hugs from my mum and dad). The pit of dread in my stomach has withered. But I can still see this outdated stigma all around me. 

This is hardly surprising, as society has endured significant levels of fear and shame around HIV for the past 40 years. For a long time, it was untreatable; shrouded in mystery. But the stigma attached is now outdated and shrivelling with the help of contemporary medicine. And now it’s time to move out of the culture of isolation and secrecy that surrounds the virus. 

We all have encountered this archaic stigma through storytelling, whether on television, in the movies, in our lives or the media. However, it lives within us too. For example, ask yourself honestly, do you think any less of me because I’m living with HIV? If so, the stigma may still exist inside you. But you can choose to dispel it, by choosing science over fear and empathy over shame, in a way that you will be proud of in years to come.

This outdated stigma often pits those most affected by HIV against ourselves. It isolates us when we most need help. While our general health or lifespan is not adversely affected by the virus anymore, HIV is now widely acknowledged as having a hugely detrimental impact on the mental health of people living with, or at risk of HIV.

Despite this new era of living with HIV, in 2017 17 per cent of people surveyed by HIV Ireland had experienced suicidal thoughts in the previous 12 months – far above the national average. However, this mental health impact of HIV is not caused by the virus and cannot be treated by medication – that particular cure lies within you and me. 

As much as I am partial to the story of a fabulous gay man in the 1980s, we need to ensure that a broader range of the contemporary global experience of HIV is represented

We can start with the stories we tell. While often beautifully made and emotionally compelling, mainstream on-screen representations of HIV invariably trace the devastating impact of HIV as it emerged in the 1980s. They’ll often come with fictionalised, white gay male protagonists, for whom HIV/Aids is terrifying and terminal. There are no happy endings. 

Let’s face it – it’s distressing. But if we are going to represent these historical experiences, why not include information at the end of these programmes about the current reality of living with HIV/Aids?

It is vitally important to remember and celebrate the lost lives of those who went before. These historical representations should exist – but as part of a spectrum of stories spanning time and place – detailing the most devastating virus that humanity has experienced in the past 100 years. As much as I am partial to the story of a fabulous gay man in the 1980s, we need to ensure that a broader range of the contemporary global experience of HIV is represented. 

A little known fact, for example, is that Aids is the leading killer of young girls and women all over the world right now. According to the HSE, in Ireland in 2018, one of every five new cases of HIV were female – daughters, sisters, mothers, aunties. I want to hear their stories, too. But even in these final throes of its existence, the stigma around HIV is still so powerful that it limits the telling of the very stories which could help to eliminate it. 

It’s also important to say that no one living with HIV in Ireland has a duty to disclose their status. But much like those of us who canvassed for marriage equality saw first-hand, sharing the human stories behind a marginal experience can have a transformative impact and dispel outdated views. 

Open discussion

A significant, mindset-shifting moment in my own journey with HIV was encountering the story of activist Robbie Lawlor and his partner, and hearing him speak openly and confidently about his experience living happily with HIV. I joined Robbie and co-host Veda Lady two weeks ago on their pioneering podcast Poz Vibes, in which they have created a new platform to share stories of people living with HIV. 

We need to normalise and encourage this type of open discussion about the current experience of HIV. Forty years into an epidemic that has taken the lives of 33 million people, we need to be able to share and hear these experiences expressed safely, with room for both tears and laughter, without fear of judgment. 

After 40 years, the outdated stigma around HIV has overstayed its welcome. But there is one final way you can use it as a free and powerful tool to pinpoint fear, shame and latent homophobia that might live inside you. It may be that those parts needed a good spring clean anyway – they did in my case, even as a gay man with HIV.

Fionn Kidney is a social and cultural innovation consultant