CHANNEL 4’s It’s A Sin returned HIV to the national conversation – but most people still don’t realise that women account for one-third of the 101,600 cases in the UK today, and heterosexual men one-fifth.
Here, two women share their stories.
‘HIV didn’t stop me having a family’
Emily Cawston, 32, is an administrator and lives in Bristol with her partner Ben*, 38, and their three-year-old son.
“The nurses were talking to me, but all I could hear was muffled speech, as though I was trapped inside a bubble.
“I sat in a small room at a Bristol sexual health clinic in July 2016 and struggled to understand what I’d just been told: I was HIV positive.
“I’d always taken my sexual health seriously and had yearly STI tests.
“I’d only had one relationship since my last all-clear in 2013, but it ended in late 2015 when I suspected he’d cheated on me.
“I moved out of our flat into a house-share, and it wasn’t until the next summer that I went for my next test – and received the devastating news that, aged 28, I had HIV.
“I should have been furious with my ex, but all I felt was shame, disgust, and disbelief.
“A week later, I was back at hospital. The nurses reassured me that with treatment – two daily antiviral tablets – I could live a long and normal life, but nothing felt normal any more.
“They asked if I wanted them to get in touch with my sexual partners, and I gave them my ex’s details. I wanted no contact with him myself.
“At work as a motor trade administrator, I put on a brave face, but at home dark thoughts descended.
“I was offered counselling through the hospital, but the waiting list was over three months long, during which time I spiralled into a deep depression.
'I WAS CONVINCED NOBODY COULD LOVE ME'
“I hid my tablets from my flatmates, and didn’t tell friends or family, fearing they’d think I was dirty.
“I was convinced nobody could love me again and stopped dating.
“Within six months, I was suicidal. Terrified, that November I went to see my GP, who put me in touch with local HIV charity Brigstowe.
“Through them, I met up with Maria*, a woman a few years younger than me who also had HIV.
“She was in a happy relationship and showed me that HIV wasn’t a social death sentence – maybe I could find happiness again, too.
“The next month, I told my two closest friends. To my surprise, they weren’t horrified, and reassured me I was still me.
“Just before Christmas, I plucked up the courage to go on a date with Ben*, an old colleague who’d just moved to live nearby.
“By that point, treatment meant my HIV viral load was undetectable and couldn’t be transmitted by sex – which meant that legally I didn’t have to tell Ben. But after a few dates, I knew I couldn’t lie to him.
“I was prepared for him to run a mile, but instead he said: ‘You’re still Emzy’.
“The next day, he went quiet and I didn’t hear from him for a week.
“I was terrified he’d ghosted me, but he got back in touch and said he’d had a chat with a professional at a clinic to educate himself, and he wanted to make a go of things.
“Just like that, my biggest fear of being unlovable was conquered.
“It still took us a while to become physical.
“There was fear on both sides, but mainly from me, as I had to convince myself it was safe. When we did sleep together, everything felt right.
“We knew we were safe in terms of STIs and HIV and stopped using contraception.
We were shocked but thrilled when I became pregnant a few months later
“With hindsight, we should have taken more care but, irrationally, I had it in my head that I couldn’t have children – so we were shocked but thrilled when I became pregnant a few months later.
“Doctors reassured us that our baby would be safe, with just a 1% chance of the virus being passed on, though we were warned that HIV can be transmitted through breastfeeding, so I decided it wasn’t worth the risk.
“I still hadn’t told my mum Sally, 61, about my HIV, but when she found out she was going to be a grandma, she wanted to be at the hospital and I couldn’t hide it any longer, blurting it out during a phone call.
“Initially she panicked, recalling the ’80s AIDS epidemic, but I reassured her I was healthier than ever.
“I was so proud when she started joining me at events in support of Brigstowe.
“In January 2018, our beautiful son was born. When he’s old enough I plan on being open with him about my HIV.
“I’m comfortable talking about it with anyone, and I’ve had no negative responses.
“Every time I look at my son, he’s a reminder of how far I’ve come.
“You can have HIV and be happy and healthy – I’m living proof.”
‘My husband was given two years to live – that was 36 years ago’
Rebecca Osborn, 45, is a personal assistant and lives in Derbyshire with her 20-year-old daughter and husband Matt, 52, an HIV campaigner.
“I watched in disbelief as the nurse backed out of the hospital room in a panic. ‘Shall I get hazard tape for the door?’ he asked the consultant.
“Matt, who was recovering from a routine ankle operation, joked: ‘You’re fine unless you have unprotected sex with me.’
“A year into our relationship, in February 2012, this was my first insight into the stigma Matt had faced since he was 16.
“I met Matt in 2011, when we were both volunteers with Samaritans.
“The first time I saw him, he was sporting a skinhead and a T-shirt with ‘HIV Positive’ on it.
“I’d just started a new life with my daughter, then 10, after leaving an unhappy marriage, and I was struck by how kind and funny he was.
“I don’t recall Matt disclosing his HIV status to me, but I do remember late nights at the pub talking about it.
“I learned that he has severe haemophilia – a life-threatening bleeding disorder present from birth that means blood doesn’t clot properly – and was infected with hepatitis B and C, as well as HIV, from contaminated blood products during the ’80s.
“Around 1,300 people with haemophilia – almost all men, as women are only carriers of the disease – were infected in this way, and only around 290 remain alive. It has been called the worst treatment disaster in NHS history.
“When Matt was diagnosed in 1985, the AIDS epidemic was at its peak and stigma and shame were rife. There was no treatment and doctors told him not to tell anyone.
'SERIOUSLY ILL'
“Then they said that he had two years to live and he should never have sex. He told me it was like living with a stopwatch round his neck.
“By the time he was 34, Matt had fallen seriously ill, but thankfully new treatments were emerging.
“He was put on anti-retroviral medications that stopped the virus replicating in his body – and saved his life.
“Matt’s incredible parents have supported him endlessly.
“However, he only told a few friends and kept his HIV secret from everyone else until he started volunteering at Samaritans in his 40s.
“Lying to people for over two decades had been a heavy burden and something just kicked in – he thought: ‘There isn’t any shame, I’m done living a lie’.
“Thankfully, he has only ever had a sympathetic reaction from friends and family.
“Hearing what Matt had overcome made me fall for him more.
“Within six weeks we were engaged, and in June 2012 we got married at a registry office in Derby. It was the happiest day of my life.
“As my parents are very religious and conservative, it took me years to find the guts to tell them about Matt’s HIV.
“In 2019, after 40 years of campaigning, a public inquiry was launched to discover the truth behind the NHS blunder and the story was being covered on the news.
“As we watched it unfold on TV one day, I told my parents that Matt was one of the people infected. They were shocked, but more concerned about his health, which was a relief.
“Dealing with such stigmatisation at a young age has taken its toll on Matt.
“He’s formed defence mechanisms and deals with everything using dark humour, but this means he often pushes aside his emotions, and it’s taken him years to process what happened.
“He struggles with planning more than a few weeks ahead, which I’ve had to be patient with.
We are so grateful to the gay community for all the work they did by not staying silent
“Sex has been difficult for him, too. I was never worried, as I knew Matt’s HIV was undetectable and therefore untransmittable, but he’d often clam up, thinking he could kill me.
“For that reason, we’ve always used protection and never had kids.
“Sometimes I think it would have been nice to have a child, but for years Matt was told he could never have kids for fear of passing on the HIV.
“He can’t get life insurance and hates that there’s no safety net if he dies.
“The public inquiry into how Matt and others were infected is still ongoing.
“He has never received compensation, though the Department of Health has recently started giving him small payments in recognition of his ‘difficult situation’ – but there is still no acceptance of blame.
Matt couldn’t watch It’s A Sin – he said it was like dodging a bullet and then seeing the corpses of people who weren’t so lucky.
“We are so grateful to the gay community for all the work they did by not staying silent – treatment and attitudes changed because they were so vocal.
“I’d be lying if I said I never worried about him, but Matt’s looked after by a brilliant team of specialists, so any deterioration is picked up straight away.
“For now, there’s no reason why he can’t live a long, full and healthy life.
“Matt feels lucky to be alive – and I feel lucky to share my life with him.”
- For help or information, contact the Terrence Higgins Trust (Tht.org.uk)
*Names have been changed Photography: Gareth Iwan Jones, Fabio De Paola, Fiona French
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