Straight people now account for almost half of new HIV diagnoses, and are far more likely to be diagnosed at a later stage than gay and bisexual men, who have benefited from targeted awareness and prevention work. Here Louise Vallace, 53, a mother of three from London, tells Sarah Graham how she’s learnt to thrive as an HIV-positive woman.
Before my diagnosis, I believed HIV was something that affected gay men, and people in other countries, and would never happen to me. As a good Catholic girl, who went to a convent school, sexually transmitted infections weren’t even on my radar. I thought it was only a “certain type of person” who got those, so I didn’t see myself as at risk at all.
I got married in my twenties and we had three children – two boys and a girl. In my thirties, though, our marriage broke down and we divorced.
After a few years, I was enjoying dating again: I looked great, I felt great, and I was really confident. My career was going well – I worked in leadership for the local council, managing programmes to improve residents’ quality of life, and I’d won awards for my work. My children were busy with school clubs and activities, we were going on holidays and eating in nice restaurants.
I’d been sterilised after the birth of my third child, so I no longer needed to worry about falling pregnant. But at 37, I went for a full STI screening, really just as a tick-box exercise – in the same way I went for my smear test and my regular dental check-up. I wasn’t concerned at all, it just seemed like a good idea to get myself checked out. I had no symptoms or reason to believe there was anything wrong.
When they told me I was HIV positive, the ground opened up. I went numb. I was only 37 and immediately thought I was going to die, and thought about my children growing up without me.
My doctors told me HIV wasn’t a death sentence, and talked to me about the treatments now available to manage it. HIV (human immunodeficiency virus) damages the cells in your immune system and weakens your ability to fight everyday infections and disease.
If left untreated, it can lead to late-stage HIV or Aids. However, thanks to modern antiretroviral treatments, very few people in the UK now develop serious HIV-related illnesses.
I started taking daily medication, which allows me to live a healthy life and means my HIV can’t be passed on to anyone. I tolerated the medication well and didn’t have any side effects – in fact, I felt great physically. But I felt such deep shame that I didn’t tell anyone about my diagnosis for over 10 years.
When visiting the clinic, I didn’t see anyone I could relate to. It was mostly white men, maybe a few asylum seekers. I didn’t see many women, certainly not professional women, or black Caribbean women, like me.
I felt unbelievably lonely, and so depressed that I completely dissociated from my body. I just pretended it wasn’t happening, because the shame was too much for me to bear.
I was terrified my friends and family would feel ashamed of me, particularly my daughter and two sons. How the hell do you tell your children that their mum has HIV?
It hit my love life too. It’s hard trying to meet people and start a new relationship when you’re divorced and have three children; disclosing you have HIV makes it even worse. I just completely closed up. There’s really nothing worse than disliking yourself, and that shame and isolation had a huge impact for a long time.
I felt the same unbearable stigma at work and didn’t disclose my status to colleagues. There weren’t many other black women in senior positions. I was always concerned about being judged and stereotyped, so I didn’t want to give anyone ammunition to use against me. I’d worked very hard, and was thirsty for more career progression, so I worried that HIV would be seen as a weakness.
Eventually, 10 years after my diagnosis, I did tell my kids, by which time they were young adults. They were amazing, so supportive and so loving, and gave me the strength to open up to the other people in my life. That’s really when I found my voice and started to speak out more about life with HIV.
Now it feels so important for me to talk about it, because I want everyone with HIV to know they’re not alone, it’s not a death sentence, and you can’t transmit it if you’re on medication. You can still have relationships and live a good life.
Five years ago, I met the love of my life, Adrian. By then, I was a completely different person. I’d done a lot of work on learning to love myself again. I was looking after myself, doing yoga, meditating, reading, and I had a personal coach and a therapist.
I’d really invested in myself and was feeling much more confident again. I knew I was an amazing catch, so disclosing my HIV status to him wasn’t an issue. I thought, if this is an obstacle for him, he’s not the kind of person I want to be with.
I was right not to worry; it didn’t bother Adrian at all, and we got married last November. I’m the healthiest I’ve ever been, and I now run my own business as an intersectional wellness coach, helping to support others living with HIV. My podcast, Aunty Lou’s Hour, has featured people from all over the world talking about their experiences, so that people living with HIV can feel seen and understood.
I’ve also committed to educating others on the reality of living with HIV by joining Terrence Higgins Trust’s Positive Voices programme, where I will deliver talks to audiences across the UK, including schools and the corporate and public sector.
I’m particularly passionate about raising awareness among heterosexual people – research shows testing rates among straight men and women are down by a quarter compared to before the pandemic. Another survey, by Newfoundland Diagnostics, found that one in five straight Brits believe they are unlikely to contract the virus.
However, the number of new diagnoses among heterosexuals surpassed those in gay and bisexual men for the first time in a decade in 2020 and have continued to be higher each year since. Straight people now account for almost half of new HIV diagnoses, and are far more likely to be diagnosed at a later stage, when damage to their immune system has already begun.
This disparity is largely down to the success of work targeting gay and bisexual men. Regular testing, use of PrEP to protect against HIV, and fast initiation of treatment to stop HIV being passed on soon after diagnosis have all contributed to falling rates of new diagnosis among gay and bisexual men.
I want everyone to know that it is possible to thrive with HIV – but the first step is getting tested. Putting off testing won’t change the result, but undiagnosed and untreated HIV can harm your health. Knowledge is power, and I’m living proof that HIV doesn’t have to dictate your future.
Free HIV testing kits are available to order via https://freetesting.hiv/, and you can find more information and support at https://www.tht.org.uk/