Florence Obadeyi, 50, is a bisexual social worker from Hull.
She wants more kindness shown towards those with a positive status:
‘I learnt I was HIV positive during 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 they 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.
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.
I had only slept with Tyrone’s dad twice. 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 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.
Even worse was telling an ex-boyfriend. “If you’ve given me AIDS, I’ll come and shoot you,” he warned. 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.
When Tyrone was little he used to ask about my medication. I told him they were vitamins to keep me well. When he was five, I told him the truth. 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 found 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 with HIV. That’s why challenging the stigma and educating people is so important.
I met my husband, Chris, through a support group. He’s lived with HIV for 30 years; I have for 21. 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.’
‘I thought it was a death sentence – but now I’ve lived with it for 15 years’
Sue Hunter, 62, from Farnborough, has lived with HIV for 15 years. She now campaigns for better sex education and early testing.
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 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 and we moved in together, we never discussed getting tested.
I was menopausal, so wasn’t worried about pregnancy, and I 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 accept my positive status. Eventually, my anger towards my ex turned to forgiveness.
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 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. 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 awful, but we got through. She’s now 23 and we’re very close.
HIV is manageable. I take one pill a day and have full check-ups and blood tests twice a year. I have the annual flu jab and smear tests. Otherwise I live normally.
Telling new partners has been challenging. I had a good experience, where he said, “So what?” And one that 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 weeks of taking medication, the virus in your body becomes undetectable, meaning you can’t pass it on. But he wouldn’t listen.
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 transmissions by 2030. It’s within our reach.
‘They panicked and ran away when I went for my Covid jab’
Niamh Millar, 45, is single and lives in Glasgow. The former theatre worker was 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 to 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.
In March 2011, 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 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.
I finally told my mum three years ago. She shrugged and said, “Well, you’re not going to die and you’re not going to pass it on.” 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. It’s fantastic when TV normalises these things.
I would like more women to know about PrEP (pre-exposure prophylaxis) – 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 I was told I’d have to wait an extra four hours so they could “deep clean” after me. That was medically unnecessary and 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, she panicked and ran away saying she needed gloves. We had a frank conversation about her ill-founded fears.
There’s nothing to be ashamed of about having HIV. The virus won’t kill you. With medication you can’t pass it on. I have a reminder on my phone at 7.30pm to take my three daily pills. That’s it. The worst part is 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.
Sue, Florence and Niamh all share their stories in schools and workplaces as part of the Terrence Higgins Trust 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