We never thought we could get HIV. We were wrong: These eight heterosexual British women show how pervasive HIV has become, but it's no longer a death sentenceRachel Dilly, 48, contracted HIV after unprotected sex with a new partnerA further seven heterosexual British women have spoken out about their condition for exhibition
Stand Tall Get Snapped exhibition features 30 HIV-positive Britons
09:07 GMT, 17 December 2012
At first, Rachel Dilly was simply flattered by the attention from the handsome stranger. It had been almost a year since she had separated from her partner of 20 years, with whom she had three children, and, like so many middle-aged and newly single women, she had started to explore the world of online dating.
The man who had contacted her seemed interesting and articulate. ‘We just clicked, so I agreed to meet him for dinner,’ recalls Rachel, a charity worker from Harpenden, Hertfordshire.
'All went well at first and romance ensued. But after a few months, things ‘fizzled out’. However, for Rachel, the brief affair would have a grave legacy.
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Devastated: Rachel Dilly, 48, discovered she was HIV positive after unprotected sex with a new partner
She began to feel ill, losing her sense
of taste and smell and suffering from swollen glands and mouth ulcers.
‘My doctor thought it sounded like malaria but I hadn’t been abroad.
When I found an ulcer on my body, I was referred to a GUM [genitourinary
medicine] clinic. I wasn’t all that worried – more surprised than
Rachel was screened for all sexually transmitted infections (STIs), including HIV. ‘I really didn’t think there was any way I could be HIV-positive. To me, it was just another blood test and I wasn’t worried.’
A week later, she returned for her results. The nurse was matter-of-fact. Rachel recalls: ‘She told me I was HIV-positive. It was like running into a brick wall. I don’t remember anything apart from terror.
‘How could something like this happen to a person like me Yes, I had unprotected sex with a partner, but I never considered at my age that condoms were necessary. I had contraceptive injections, and that’s all I’d worried about. I realise now just what a huge mistake that was – I was incredibly naive.’
Hope: Rachel thought she was going to die, but now, eight years later she knows HIV does not mean the end
At first, understandably, Rachel was bereft. ‘I was terrified about what would happen, and I became depressed and had panic attacks. I was also very ashamed. A health adviser at the clinic talked to me and answered all my questions.
‘I went back to her to talk a few times. I was reading lots of stuff on the internet which terrified me, but she reassured me.’
told her children – then teenagers – about her diagnosis immediately.
They were devastated. ‘They cried a lot and were convinced I was going
to die. Even though I was very down, that made me want to fight, to
prove them wrong.
weeks after diagnosis, I went out for a drive on a sunny day and decided
I wasn’t going to let HIV kill me because I couldn’t leave my children
without a mother.’
eight years on, Rachel, 48, has agreed to take part in a groundbreaking
exhibition featuring 30 HIV-positive Britons whose photographs appear
beside personal statements about living with the virus.
The show marks
the 30th anniversary of the death of Terrence Higgins, the first man to
die of AIDS in the UK.
The images illustrate just how
pervasive HIV has become. The first documented cases were in gay men
but it is now known to affect both genders, regardless of race,
sexuality, age, religion or class.
participants include a former policeman, a truck driver and a law
student. The youngest is 23, the oldest is 71, and they span the UK.
the portraits, taken by London-based photographer Edo Zollo, make a
vibrant statement: that it is possible to live a full and normal life
with HIV. They are in stark contrast to the doom-laden messages of the
early Eighties when the virus first emerged.
Perhaps most surprising is that eight of
the 30 are women. ‘HIV is increasing year on year in the UK
heterosexual community,’ says Lisa Power, head of policy at the Terrence
‘You don’t need a lurid past to get it, or to have had
contact with a drug user.’ Twenty years ago, it was unusual for women to
be infected. Today, a third of all those living with the virus are
female – double the figure seen a decade ago. '
Amanda, 42, Glasgow: 'I call my “visitor” Betsy as we had to share the same body. I'm in a happier place because of my journey with her'
Samantha, 45, Bournemouth: 'The light that is at the end of most tunnels continued to shine – I chose to travel towards it. I am proud of who I am'
‘The nature of sex and the female
anatomy means it is easier for a man to give HIV to a woman than the
other way around,’ explains Power. ‘The majority of women diagnosed have
picked up the virus from a single sexual contact.’
of those newly diagnosed are, like Rachel, middle-aged, recently out of
a long-term relationship and resuming sexual activity with new
partners, not realising they are at risk of contracting HIV.
Post-menopausal women, who no longer
worry about pregnancy and so think they don’t need contraception, are
particularly vulnerable. They are also more likely to be diagnosed later
women discover they have HIV when they have an HIV test as part of
their routine ante-natal screening,’ says Power. ‘Older women don’t get
this screening so they don’t know they are infected until they show
Julie, 50, Leicester: 'I once wore a blanket of make-up to hide my feelings. Now I am photographed with no make-up, no pretence… and no fear'
Angelina, 45, London: 'I was offered a job the week I was diagnosed. I decided to take it, to keep myself busy while I waited to die'
Young women who do not remember earlier AIDS-awareness campaigns are also putting themselves at risk by having unprotected sex.
for HIV is now so advanced that the virus can be suppressed to levels
that are almost undetectable. But in some cases even this kind of
therapy is ineffective, and patients are still likely to die of an
this, perception in a younger generation can border on nonchalance.
Power says young people are more sexually active and change partners
more frequently, putting themselves at risk.
never considered herself at risk – indeed she had barely considered the
concept of HIV at all. She says: ‘When my relationship ended in 2004, I
didn’t have much confidence and was flattered to be getting attention
from men again.
‘I had two
short relationships and didn’t use condoms a few times because I really
didn’t think I was at risk. I thought HIV was an African disease, or a
gay man’s one.’
Rachel doesn’t know who infected her. ‘Both of my partners denied there was anything wrong with them and refused to get tested.’
Early diagnosis is crucial. According to the Health Protection Agency, those diagnosed late are ten times more likely to die within a year of diagnosis than someone who is tested in good time. Early diagnosis could add more than 40 years to the life of someone with HIV.
Professor Jane Anderson, chairman of the British HIV Association, who runs clinics at Homerton Hospital in London, says combination therapies (a mixture of different chemicals, which act on the virus at different stages of its life cycle) are now so effective that most people with HIV need to take only one or two pills a day.
‘We have powerful and effective drugs that don’t cure HIV but are able to suppress the virus. But they need to be prescribed early in order to prevent damage to the immune system occurring,’ she says.
Positive and proud: HIV positive Gemma, 39, from Bournemouth shows joy, hope and happiness in her photo for the exhibition
Even though HIV is controllable, the stigma surrounding the disease remains. ‘HIV is unique because it wraps up all of society’s fears and issues in one hit: sex, sexuality, race and death,’ says Genevieve Edwards, director of health improvement at the Terrence Higgins Trust.
‘It’s crazy that we have come so far
in medicine that you can now get diagnosed on the spot, take a pill a
day to treat the condition and live into your 70s, but still be afraid
to tell your friends you have it.
'People like to believe that HIV is
something that happens to people who aren’t “like us”, but people who
get HIV are no different to anyone else.’
Edwards says the stigma of HIV means that many of those diagnosed are marginalised at work, and even by the Health Service.
heard of cases of dentists turning away patients with HIV because
they’re afraid of infecting other patients and would have to thoroughly
disinfect their equipment, which they should be doing anyway.
Stand tall, get snapped: Anca, 29, left, and Memory, 46, both from London have bravely stepped forward
‘An older lady told us she couldn’t get any home helps to see her. People are still scared to touch those with HIV, even though there’s no risk of contracting the virus that way.’
Indeed, Rachel has had problems getting dental appointments and has faced bigotry from strangers. ‘I went to a wedding with a friend and got talking to a woman there. Because I’m so open about my HIV, I mentioned it to her. The next day, my friend told me that the woman had called him to ask him not to bring me to anything again and she didn’t want me anywhere near her children.’
Rachel believes she is lucky to have the support of her family and friends. As a volunteer at her local HIV support group, she has met many women like her. ‘There are several other British women, my age, who’ve been just as surprised as me to get HIV. The awful thing is that some of them were infected by their husbands, who were cheating on them.’
Edwards says that education is the key, both to preventing the spread of HIV and to counteracting the stigma. ‘If people have knowledge, some of the fear drops away. Don’t assume you don’t know someone with HIV. They might just not have told you.’
VIDEO: Stand Tall Get Snapped: The voices of 30 HIV positive Britons…
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Stand Tall Get Snapped is at the Reading Room Gallery, Frith Street, Soho, London, until January 3, and will tour the UK next year.