One knock on the door changed Sue Mason’s life for ever as an unexpected caller triggered shock and terror – followed quickly by heartbreak.
On the doorstep was an ex-partner with devastating news... he was HIV positive.
The man urged Sue to undergo testing and just days later she, too, was diagnosed with HIV.
Mum-of-one Sue was 47 at the time and believed it was a death sentence.
For her ex, tragically, it was – he died just two weeks later. But 13 years on, Sue is alive and well and is one of 30,000 UK women living with HIV.
Far from dreading her lot, she now oozes positivity and has become an ambassador for a charity which helps remove the stigma and fear around HIV.
Sue talks about a “new lease of life” – she has remarried, thrown herself into campaign work and is relishing many more years with her 22-year-old daughter.
Speaking on World AIDS Day today, Sue, 60, says: “I thought I was going to die and didn’t think I’d see my daughter Danielle grow up. I started thinking about who would look after her when I’d gone.
“At the very least I thought my life would be cut short. I’d read about stars like Queen’s Freddie Mercury and actor Rock Hudson, who died of AIDS, and I was terrified.
“It was a really dark time. Not only was I dealing with having HIV but someone who I had cared for deeply had lost his life too. He was only 43.”
HIV was linked to 428 deaths in the UK in 2017. Sue lived through the 1980s when there was no treatment for the virus and TV ads from the Department of Health warned of a “deadly disease” – and featured a tombstone.
She was also under the misconception that women didn’t get HIV and it was confined mainly to the gay community, in which it was first recognised in New York in 1981.
When her GP said medication would keep her alive and she would “feel differently in a few months”, Sue struggled to believe it.
Now two tablets a day suppress the virus, ensuring it won’t attack her immune system and cannot be transmitted through sex.
Sue met the man who would give her HIV in 2005 after her 12-year marriage ended. She never considered the prospect of a sexually transmitted disease and, having been through the menopause and unable to fall pregnant, she didn’t use protection during sex.
The pair dated for 18 months. It was barely eight weeks after splitting up that he called to reveal his grim news. But Sue, of Worthing, West Sussex, holds no animosity and even praises him for alerting her.
She says: “He was diagnosed at such a late stage that it was too late for treatment to help him because his immune system was so depleted.
“I was quite angry when he came to see me. He didn’t tell me how he had contracted it and I didn’t ask because I was just so incensed. But one of the last things he said was, ‘Please, go for the test’. I didn’t have any signs or symptoms so was so shocked when I got the diagnosis. I will be for ever grateful he found the courage to tell me.”
Sue’s early diagnosis was vital. Advances in medication mean sufferers are treated effectively with antiretroviral therapy, a combination of medicines.
Sue says: “I take two tablets a day, which is incredible when you think about past treatments when people had to take handfuls of pills.
In the 1980s I saw all the leaflets and TV adverts, which were horrible. They were so stark they helped stop the transmission, but created a lot of stigma.
I honestly didn’t think there was a major threat to heterosexuals.”
Sue kept her condition from her daughter until she was 14. She says: “Telling Danielle was one of the hardest things I’ve had to do.
“I sat her down and told her my former partner, who she knew quite well, died of something I hadn’t told her about. I said he’d had HIV and that I had been diagnosed too.
She looked at me and said, ‘Mummy, you’re going to die aren’t you?’ I said ‘I’m not going anywhere. I’m going to live a long and healthy life’.
“Of course she struggled with it, and that is natural. I had to educate her and the wider family about how HIV no longer kills everyone.”
Sue says her condition did not put her off dating – and she remarried last year.
She goes on: “If I liked someone I’d simply have an honest conversation with them. I told my husband I was HIV positive early on and he said okay and we spoke about it and what it meant.
It wasn’t easy but it’s something you have to disclose. I had two partners between my ex dying and my husband and they were fine once they realised I couldn’t pass on the virus.
“Of course there are people who will walk away. One person told me he valued his health too much to be with me. This is why education is so important.”
Sue now works as a Positive Voices advocate for the Terrence Higgins Trust, educating young people in schools and universities about HIV and AIDS.
She says: “I don’t want anyone to go through what we went through. The aim is to stop transmission but also remove stigma surrounding the condition.
“I want my daughter’s generation to grow up with a different view of HIV. The diagnosis changed me.
“Discovering I could live a long life with the condition meant I wanted to tell others that was the case. I gave up my job in retail and started to work with Terrence Higgins. I’ve never looked back.
“When I was first diagnosed I felt suffocated by it because I was scared and isolated and afraid of what people might say about me. But my life has been empowered by what I do in the community.
“It’s given me a new lease of life. This weekend is very poignant because I lost someone very dear to me and I feel grateful because he found the courage to tell me.”
