‘I didn’t think a white woman in her 40s would get HIV – but I’ve learnt it’s not a death sentence’

Sue Hunter, 62, from Farnborough, has lived with HIV for 15 years. She now campaigns for better sex education and early testing. Here, she tells her story of being diagnosed and the journey she has been on since…

‘As a teenager, I remember the AIDS awareness leaflets coming through the door and my mum picking one up. “That’s nothing to do with us,” she said, throwing it away. I too assumed I’d never get HIV – I wasn’t gay. But 35 years later, I caught the virus through having unprotected sex.

After my divorce in 2004, I re-entered the dating world. By then I was 47, with a six-year-old daughter. When I met someone new, and we moved in together, we never discussed getting tested. I was menopausal so wasn’t worried about pregnancy, and I wrongly believed STDs were something younger people caught. The relationship didn’t last, but we stayed friends.

When he came to tell me, in 2006, that he had AIDS, I was horrified. “How dare you bring HIV to my door?” I accused him angrily. I went to get tested – I was fit, healthy and had no symptoms, so when the results came back positive, my world fell apart.

I thought it was a death sentence, that I wouldn’t get to see my daughter grow up. Then, just a month later, my ex died of an AIDS-related illness. I was in a terrible, dark place, I was put on medication to suppress the virus and had counselling for a year which helped me come to terms with the diagnosis and accept my positive status.

Sue around the time of her diagnosis
Sue around the time of her diagnosis

Eventually, my anger towards my ex turned to forgiveness. He didn’t know he was positive when we were together, and I was grateful he’d been honest. I turned my back on my job in fashion retail as I couldn’t face telling people. I took a different part-time job and began volunteering at HIV charity the Terrence Higgins Trust.

I now work for them full time, mentoring other positive people – especially women – and I speak to healthcare professionals, schools and communities to educate about HIV. There remains a stigma, which is heartbreaking for those affected. Once you’re diagnosed you have to tell people, like your doctor, dentist and family, which I did in stages. My mum had passed by then. The hardest person to break the news to was my daughter, who I didn’t feel ready to tell until she was 14, and interested in boys. It felt like the right time.

Explaining that I’d been living with HIV for six years was the hardest thing I’ve ever done. “Are you going to die, Mum?”
was her first question. She didn’t tell anyone for two years, which led to some mental health problems. It was just awful,
but we got through. She’s now 23 and we’re very close. She worries about me, but I reassure her I’m well. HIV is manageable. I take one pill a day, and have full health check-ups and blood tests twice a year. I have to be cautious, I always have the annual flu jab and frequent smear tests. But otherwise I live normally.

Sue now teaches others about HIV
Sue now teaches others about HIV

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Telling new partners has been challenging. I had one good experience, where he said, “So what?” And one which made me feel worthless, when he responded with, “I value my own health too much to enter into a relationship with you.” I explained that now, within a matter of weeks of taking medication, the virus in your body becomes undetectable, meaning you can’t pass it on. But he wouldn’t listen. I was devastated.

There are many dating sites specifically for positive people; it was through one of those I met my husband, who I married in 2019. With HIV, the “H” stands for “human”. No one is exempt. If more people went for testing, it would be possible to eradicate new transmission by 2030. It’s within our reach.’

Florence Obadeyi, 50, is a bisexual social worker from Hull. Passionate about breaking HIV stigma,she wants more kindness shown towards peoplewith a positive status.

‘I only learnt I was HIV positive during my pregnancy, in 1999. When the midwife first suggested I get tested I was offended, but thank goodness I did. It meant I took preventative measures to ensure my son Tyrone, now 21, was born HIV negative.

I was shaking, sweating and slightly hysterical when the result came back. “I’m going to die!” was my only thought. But support groups changed my outlook. I worried they would be full of frail, sick people, but there were normal, healthy-looking women, with jobs, husbands and nice nails and make-up. It sounds silly, but it reassured me that life carries on.

Florence had no idea of her status, until she took a test when she was pregnant
Florence had no idea of her status, until she took a test when she was pregnant

I lived in Nigeria until I was 27, growing up there meant my sex education was limited. I knew about condoms, but sadly didn’t always use them. But I’ve never taken drugs or had a blood transfusion, so I know my virus was sexually transmitted. I had only slept with Tyrone’s dad twice, we were not in a committed relationship. When I told him I was HIV positive he cut off all contact with me and his son.

Because my sister worked at the hospital where I was due to give birth I told her, and then my wider family, about my status. While outwardly they were supportive, I started to notice that I wasn’t getting invited to family gatherings and spontaneous visits to my house came to an end. My family were distancing themselves from me. That hurt.

Florence with her son Tyrone
Florence with her son Tyrone

Even worse was telling an ex-boyfriend. “If you’ve given me AIDS I’ll come and shoot you,” he threatened. Luckily, he was negative. But I felt so sad. When I had Tyrone, HIV expectant mums were given C-sections and told not to breastfeed, but in 2021 you can have a normal birth and safely breastfeed – after you’ve spoken to your doctor – with no fear of transmission, thanks to effective HIV treatment.

When Tyrone was little he used to ask me about my medication. I told him they were vitamins to keep me well. When he was five, I told him the truth. He’s always been accepting of it. Now he’s an adult he’s told his friends. He’s protective of me. The Terrence Higgins Trust supported me while I studied for my degree and I now work for them and am a qualified social worker.

The charity’s research recently found that just three in 10 people are aware that those living with HIV on effective treatment can’t pass it on. Nearly half of UK adults still think HIV can be passed on from kissing and over a third would feel uncomfortable going on a date with someone living with HIV. That’s why challenging this stigma, and educating people, is so important.

I met my husband, Chris, through a support group many years ago. He’s lived with HIV for 30 years; I have for 21. That proves it’s not a life sentence. We married 10 years ago and we’re happy and healthy. I want people to treat those with HIV with kindness, not fear. We’re human.’

Niamh Millar, 45, is single and lives in Glasgow. The former theatre workerwas diagnosed 10 years ago.

‘It was May 2010 when I first showed signs of illness. I was a regular 35-year-old woman who worked in a theatre and enjoyed socialising. There was a cold going around at work and I remember joking to colleagues, “Stay away, I don’t want to catch your bug.”

I came home from work and couldn’t eat because my throat was so sore. By the next morning I’d lost my voice, my face started swelling, and my breathing changed. I went to the GP who immediately referred me to hospital. There, I was told I either needed an emergency tracheotomy, or be put into a medical coma and transported to another hospital.

They warned I might not survive the ambulance journey, so I went for the tracheotomy. No one seemed to know why it had happened, but life went back to normal. In hindsight, my body had been under attack from the virus, yet at no point had anyone suggested an HIV test. I think doctors are nervous about bringing it up.

Niamh was diagnosed ten years ago
Niamh was diagnosed ten years ago

That incident made sense the following year, in March 2011, when a guy I’d been seeing on and off for four years told me he’d tested positive, and that I needed to be tested too. When I learnt I was indeed positive, I didn’t blame anyone. I kept calm but began therapy with an HIV specialist, which helped enormously.

I told just a few close friends initially, then while working on a youth theatre project about HIV I felt hypocritical not to be honest about my status. Now I’m single and not looking to date, but I’m lucky never to have experienced any negativity with new partners. I finally told my mum three years ago. She shrugged, “Well, you’re not going to die, and you’re not going to pass it on.”

Niamh wants more women to be aware of the precautions that can be taken to avoid getting HIV
Niamh wants more women to be aware of the precautions that can be taken to avoid getting HIV

I was amazed this Northern Irish woman in her seventies was so clued up! But as a Coronation Street fan she’d been educated by a storyline, which made me laugh. It’s fantastic when TV normalises these things. I would like more women to know about PrEP (pre-exposure prophylaxis, see box, below) – it’s a pill you take to protect against HIV.

Ironically, the worst times I’ve suffered prejudice have been with healthcare professionals. A few years ago I went for a routine internal examination, and once I declared my HIV status (which is no longer compulsory), I was told I’d have to wait an extra four hours until the end of the day so they could “deep clean” after me. That was medically unnecessary and it made me feel stigmatised.

When I went for my second Covid jab, the person administering asked what my underlying health condition was. When I told her my status, she panicked and ran away saying she needed gloves. She was terrified of touching my skin. We had a frank conversation about her ill-founded fears.

Terrence Higgins Trust is a charity which supports those with HIV and AIDS as well as educates and challenges stigma.
Terrence Higgins Trust is a charity which supports those with HIV and AIDS as well as educates and challenges stigma.

There’s nothing to be ashamed of about having HIV. The virus won’t kill you. With medication you can’t pass it on, and it won’t impact on your life. I have a reminder on my phone at 7.30pm to take my three daily pills. That’s it. The worst part is having to put up with the stigma. The government hasn’t run a major HIV campaign in 35 years. So many developments have happened since then, and it’s time people knew about them.’

What preventative treatment is available?

PrEP (or pre-exposure prophylaxis, a pill to protect against HIV) is highly effective when taken as prescribed and now available from sexual health clinics across the UK. Terrence Higgins Trust is campaigning to make it available via GPs and pharmacies.

Always use condoms.

Did you know?

A third of all people affected by HIV are women

Sue, Florence and Niamh all share their stories in schools and workplaces as part of Terrence Higgins Trust’s Positive Voices programme to educate about HIV and challenge stigma. They’re sharing their stories to mark World AIDS Day on 1 December. For support, advice and to ask any questions, you can contact Terrence Higgins Trust’s free helpline THT Direct. Call 0808 802 1221 or visit tht.org.uk/thtdirect.

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