Krishen Samuel: Real Stories from the AIDS Pandemic

Krishen Samuel, born in Johannesburg, South Africa in 1986, studied Speech-Language Pathology in Cape Town before pursuing a Master’s degree in Global Health, Public Health and Policy in London. 
 Despite being born after the AIDS pandemic began, he grew up in a country with some of the highest HIV infection rates in the world. Since being diagnosed with HIV in 2009, he has been driven to share his experience and ensure that the events of the 80s and 90s are not forgotten.
 He has written for The Huffington Post UK on HIV/AIDS and LGBTQ issues and is currently doing his PhD in Public Health on a Fulbright scholarship in the US. 

This podcast series features stories taken from our first book, a collection of essays, reflections, and testimonies also entitled ‘Love, Loss & Life’ which you can buy here.

An audiobook is also available here.

Visit the National HIV Story Trust website

Transcript

Christopher Ashman: 0:06

Love, Loss & Life: Real Stories from the AIDS Pandemic. This is Krishen Samuel's story read by Christopher Ashman with an introduction by Anita Dobson.

Anita Dobson: 0:34

Krishen Samuel was born in Johannesburg, South Africa in 1986. He studied Speech Language Pathology at university in Cape Town, then came to London in 2016 to study for a master's degree in global health, public health and policy. He has written for The Huffington Post UK on HIV AIDS and LGBTQ issues, and is currently doing his PhD in public health on a Fulbright scholarship in the US. Krishen Samuel was not even born when the AIDS pandemic began, but he grew up in a country which has seen some of the highest infection rates for HIV in the world. Since being diagnosed with HIV in 2009. He has become aware of the need to communicate his experience, and not forget what happened in the 1980s and 1990s.

Krishen Samuel (read by Christopher Ashman): 1:33

For a country, which traditionally had quite conservative religious ideals, South Africa is surprisingly progressive, especially in terms of gay rights. Perhaps because gay people played an important part in the struggle against apartheid. We are the only African country to allow gay marriage and gay adoption. However, because of the political changes happening in South Africa during the 1980s and 1990s, the country lost sight of the AIDS epidemic as it slowly took hold. AIDS was not spoken about openly, which may explain why it has inflicted such a huge toll on South Africa with one of the highest infection rates in the world. By the end of the 1990s, the situation was desperate. People were dying daily. Many children were orphaned. Many were left homeless, grandparents stepping in because both parents had died, and many children were themselves HIV positive. Perhaps a domestic worker might go home to the rural areas and never come back. And it would be whispered by her employers that she had AIDS. But it wasn't seen as a white middle class condition. It was deemed a condition that affected poor black people on the fringes of society. For a long time, the government was in denial that people living with HIV needed access to medication. It was only in the early 2000s, much later than in the UK and the US after the Treatment Action Campaign organised protests and marches that people could get the drugs they needed through the public health system. When I went to university in Cape Town away from home, I saw it as a wonderful opportunity to explore my sexuality in a famously gay city. My course was taught on the medical campus, so we were given lectures about the dangers of contracting HIV through sexual activity. A woman came in to talk about her experience of living with HIV, bringing along all her medication, eight or more pills a day. That gave me pause for thought. I was terrified afterwards of becoming infected, and always at the back of my mind was a voice shrieking I hope I don't get it. I hope I don't get it. Because the condition in South Africa was surrounded by stigma and discrimination. It was hard to open the right conversations, even within the gay community. How and when do you ask a new partner about their HIV status? How do you negotiate condom use? Being so paranoid, I did get myself tested regularly. In 2008, I had eight tests, all negative. Every time I went through the same harrowing process, realising I'd slipped up going for a test the anxiety as I waited for results, then a huge sigh of relief. The following year, my anxiety abated a little. So I had few qualms when I had a routine medical screening. A few days later, the doctor's office called to tell me there was a small problem with my white Bloods. They'll count. When I went in to see the doctor, she hadn't had a chance to go through my results, and was reading them as I sat there. She turned a page and her face fell. you're HIV positive, the room started to spin. I couldn't focus on what she said after that. It's a watershed moment, because you know, you can never turn back the clock and be the person you were before. These days with drugs that can hold the condition at bay, we often compare HIV to diabetes or other long term chronic illnesses. But it doesn't feel like that when you get the diagnosis. For me, it was like having to come out to my family all over again. But worse than coming out, because it felt more shameful. I kept berating myself. How could I have been so stupid? Knowing HIV was a huge problem in my country? How could I have let myself become infected. My sister managed to change the way I was thinking by saying, You're a sexually active young man, you live in a country with one of the highest infection rates in the world. Don't take it. So personally. Think of it as living in a war zone and being hit by a stray bullet. This isn't the end of your story, you're not going to die. reframing it like that was empowering. It helped me step back and stop blaming myself and consider instead how I would manage the condition. Because my CD for count had not yet fallen below 200 the level at which treatment was then deemed necessary. I didn't start immediately on medication. But my viral load was monitored, and I started treatment eight months later. Meanwhile, I used the internet to find and contact someone who had lived with HIV for 25 years, which helped reassure me. Medically, there have been amazing advances to keep the viral load in check. Now mine is undetectable, which means I can't pass on the virus. In South Africa, only my family and a few close friends knew I was positive. Bart's when I came to London to study for my master's degree, it seemed an opportunity to reinvent myself and be more open. I joined a group called Youth stop AIDS, a campaigning organisation active on university campuses. The group's slogan is it ain't over. And they are passionate about people getting tested and accessing treatment. It's not the HIV positive person on medication, and therefore undetectable that should be feared. It's the person who hasn't been tested and doesn't yet know they have it. In the UK, there is complacency, even denial of HIV, and young people often assume AIDS is a condition of the past, something that happened in the 1980s. Amazingly, the others on my course studying for a postgraduate degree in global health didn't think of HIV as close to home. straight friends would say they only used condoms to prevent pregnancy. Even if they did consider sexually transmitted infections. HIV was far down the list of those they imagined being exposed to the UK has been one of the biggest funders globally for HIV and AIDS related programmes. But now AIDS is slipping lower and lower on the agenda for the UK government. Although there are still parts of the world where every day people die of AIDS. The minute we assume it's over is the moment it will start creeping back. Looking back at the 1980s and 1990s. I feel touched by all those lives that were lost. For me as a gay man who is HIV positive. Those who came before me are part of my story too. As a community, we still carry the battle scars, and the unpleasant parts of the gay experience should not be whitewashed. Never forget those who died because their stories are part of the history that binds us and takes us forward into the future.

Unknown: 9:37

Thank you for listening to this story from Love, Loss & Life, a collection of stories reflecting on 40 years of the AIDS pandemic in the 80s and 90s. To find out more about the National HIV Story Trust, visit nhst.org.uk. The moral rights of the author has been asserted. Text copyright NHST 2021 Production copyright NHST 2022.