A mother has broke the ice and disclosed how she had been diagnosed with HIV after having unprotected sex with apparently ‘lovely family man’ she was dating post her divorce.
Sue Riley, 58, from Shoreham, West Sussex, said she had never thought of herself to be at the brink of HIV, adding that she never used contraception as she was a menopausal then.
She realized that she was very ‘angry’ at first on finding out about her man’s diagnosis after the split, but now says he ‘probably saved her life’.
Sue further said, how she had kept diagnosis a well-kept secret from her only daughter, who was only eight that time, for as long as six years – but eventually gathered the courage to tell her.
Her ex-partner, whose name she does not want to disclose, had tragically died of a HIV-related disease days after she was confirmed a HIV positive.
Sue did not think about using any contraception while dating the man, as the chances of her getting pregnant were zero.
‘I was a heterosexual woman, I didn’t use drugs, I wasn’t a sex worker – I never thought HIV would happen to me, but it can affect anybody from any community,’ she said.
‘As I was going through the menopause when I started dating again, there was no chance of me getting pregnant, so we didn’t use protection.
‘Now, I realise unprotected sex is the biggest risk factor for HIV. Back then, though, I didn’t know much about the condition, so I was one of those people who had misconceptions.’
She was tested positive in 2006, after she broke up with her partner.
Days after their split, he had been suffering constantly from the infection, when he was hospitalised for pneumonia and tests for that led to his HIV diagnosis.
‘By then, we weren’t together, but he came and told me what had happened and urged me to take a test,’ Sue said.
‘At first, I was really angry with him, but I realise now he probably saved my life. He didn’t have to tell me, but he did because he was a good, decent person. He was a lovely, family man.’
She underwent a medical examination immediately, Sue faced a three-week moratorium for her positive result, which was supposed to be and indeed, was, worsen by her ex-partner’s death afterwards, following another attack of pneumonia.
‘Not only was I dealing with my own huge news, but I’d just lost someone very close to me,’ said Sue.
‘After my diagnosis, the doctor told me I could live well, and manage things with medication – but everything he was saying just washed over me.
‘I assumed I’d just been given a death sentence.’
When she realized the gravity of situation she took the medication regularly to manage her fitness. Though she was successfully maintaining a good health still she worried about how she should break the news to her 8-year-old daughter back then.
Her daughter, who Sue does not wish to name, kept asking her mother about the tablets she was taking, but Sue decided she was too young to be told the truth.
‘At first, I told her it was to help me with the menopause. She was so sweet about it, she’d remind me take my medicine,’ said Sue.
‘It would make me almost crease with tears. I hated lying to my child, but I didn’t think she was ready to know what was really happening.’
Sue became very lonely afterwards by her condition, so she joined other trusts and organizations working for HIV patients to learn more about it like Terrence Higgins Trust etc.
After meeting other people undergoing the same experiences, especially women, she started accepting her condition more, and felt much more empowered to reveal the truth to her loved ones.
‘My daughter was around 14-and-a-half when I decided to tell her,’ said Sue, adding that she has since told the rest of her family, who have been not only very understanding but supporting too.
‘I sat her down after school, and said, “Sweetheart, I need to talk to you.” Then eventually I explained that I had been diagnosed HIV positive, and that’s what the tablets were for.
‘Her face dropped and I immediately thought, “What have I done? I can’t unsay this now.” She looked back at me with tears in her eyes and asked me if I was nearing the death.
‘I told her no, that I’d have a normal life expectancy. It took a long time to reassure her I’d be okay.
‘She asked if she could tell anyone, and I said yes, but felt I also had to warn her that some people may not understand and act judgemental because there are so many misconceptions.’
Initially, Sue’s daughter did not tell any school friends about her mother’s diagnosis.
But, when she heard her classmates’ misconceptions while taking about HIV, she request her mother to visit her school and deliver a talk.
Sue said: ‘My daughter grew so tired of hearing people say things like, ‘HIV automatically turns to AIDS,’ or that it is found only among drug users and people from the gay community.
‘She wanted to scream and shout that wasn’t the only truth and that I was back home living a very normal daily life, as an HIV positive woman.
‘So, when she was in her last year of school, I delivered a talk to the students about the realities of life with the condition.’
Now, Sue is a part of the Terrence Higgins Trust team, who visit schools in Sussex and educate students about HIV, quell common hearsay and myths urging them to be mindful of their own sexual health as well as to take a good care of it.
Sue has been telling her story to connect with the disclosure of a new joint report, Women and HIV – Invisible No Longer, by the Terrence Higgins Trust and Sophia Forum about the women being HIV positive and living in the UK.
Discussing the report, Sue said: ‘I was shocked by some of the findings.
‘They showed that that almost one third of female HIV sufferers have experienced abuse while accessing healthcare services. A further 42 per cent have had a mental health issue since their diagnosis.’
It was quite fortunate for women, like Sue, the report had also revealed that almost half of women living with HIV considered their life as ‘good’ or ‘very good’ on a quality scale.
‘I do truly understand why some women are afraid to speak out, for fear that others – especially their children – will judge them,’ Sue said.
‘A woman with HIV positive is a very unique situation, but I also want people to realise it isn’t death. It has been a long road for me, and I still have days where I hide under the duvet and question why this happened, but then I move on from that moment and try to create some positive change.
‘I sound upbeat now, but I’ve only got here by being empowered enough to talk about it.
‘HIV can happen to anybody, but it doesn’t mean you can’t live a healthy, happy life. I’m in a relationship myself, with a man who is also HIV positive, and we’ve just got engaged.
‘These sorts of connections – love, marriage, a family – are all still absolutely possible.’