A sorry tale of struggle

HIV can impact on people’s lives in a number of ways and, as Peter Archer discovers, diagnosis often causes major personal problems which make HIV seem a cruel and lonely illness


When Geoff moved to Birmingham to start a new job in senior management, the future looked bright. Work was going well, but he developed a persistent cough which his GP thought might be asthma. “HIV didn’t come into my mind, it just didn’t even enter my brain for a second,” he says. “My GP never asked if I was gay, if he had it might have led to an HIV test. That said, I’m not stereotypically gay, which probably threw him off track.”

Geoff’s health continued to deteriorate until he was admitted to hospital and diagnosed with tuberculosis (TB), pneumonia and HIV. “Despite everything, I was lucky – this could have killed me,” he says. “It came close because no one had thought of testing me for HIV.”

Prescribed life-saving medication, Geoff was keen to get back to work. He had told the personnel manager of the electronic games company he worked for of his HIV status, but asked for this to be kept confidential.“Looking ack now I see a complete difference in tone once I’d told them about my HIV,” he says. And when Geoff went back to work, bad news was waiting for him. “I returned and, no word of a lie, within ten minutes I had left for good,” he says.

He was made “redundant” and, two months later, discovered that someone had been hired to do his former job. The Equality Act 2010 offers protection to people with HIV from discrimination in employment. It is illegal to dismiss an employee because of their HIV status.

‘UNSOCIAL’ SERVICES?

Stephanie and John were a young couple whose lives were turned upside down by HIV. Theirs is a story of struggle, and a lack of social and psychological support after John’s health declined.

“I guess the impression was that because he was a typical young, white, heterosexual man, there was no need to test him for HIV,” says Stephanie. But her boyfriend’s “mystery” illness turned out to be HIV and hepatitis C. Stephanie also tested HIV positive.“In the beginning it didn’t affect me physically, not like John. However, my life focus changed completely – caring for John became my main concern,” she says.

Stephanie had to leave her job with a London law firm and took more flexible work in sales so she could care for John. Not long after, with John’s health showing little sign of improvement, they decided to get married.

There was a complete difference in tone once I’d told them about my HIV

With Stephanie as the sole earner and John receiving disability living allowance, the couple were told they did not qualify for assistance with John’s care. But then Stephanie began her first HIV treatment regimen and suffered severe side effects before switching to an alternative scheme.“It all took an abrupt turn for the worse when John had a brain haemorrhage and suffered a stroke during surgery,” she says. “I tried to get social ervices involved, but I was told he wasn’t ill enough to warrant it.”

Meanwhile Stephanie was holding down a job and studying for an MBA. However, by now John was in terminal decline and, after being re-admitted to hospital, was moved to a hospice before returning home to die.“I didn’t know what was going to happen to me,” says Stephanie. “I tied up my grief in years of hard work. I ended up seeing an HIV counsellor and finally found my way to a support group.”

Funding for a number of support services for people living with HIV has been cut since 2010.

WOMEN WITH HIV

With the benefit of hindsight, Louise knows she took a risk having unprotected sex and now she is living with the consequences. “And that’s exactly what I plan to do – live,” she says.

Louise is one of the estimated 7,700 heterosexual women in the UK living with HIV. She discovered she was HIV positive during her second, successful pregnancy. Her supportive partner John tested negative.Hannah was also diagnosed with HIV during pregnancy and discovered she had been infected by her haemophiliac ex-partner. “I got flashbacks to things that my ex had told me and it all started to click into place,” she says.

Unlike Louise, Hannah gets less understanding from her partner. Their baby son was given the all-clear from HIV after a year, but the strain began to tell and Hannah suffered a breakdown.

“I’ve really only ever met gay men with HIV and a few African people,” she says. “I know there are other women out there, but it’s difficult to meet them because so many people don’t want to talk about it.

“My partner still won’t talk about HIV. He originally thought you got it through pregnancy and then it goes away. It is never discussed in our house. My tablets are kept in a locked cupboard so he doesn’t have to look at them – and he refuses to test. “We always use condoms when we have sex, but I still feel pressure that my partner might get it and my son could end up with two parents with HIV. I want my partner to get tested, but I don’t know how you cope with the guilt if he does become positive.”

Hannah has joined a support group, but its membership is all-male. “It’s nice to feel that connection with other people and it’s made a real difference to me,” she says. “But it still feels like it’s a very lonely existence being a woman with HIV.”

CELEBRITY FILE

Fame is no protection against HIV and, in its early days, Aids claimed the lives of top celebrities whose deaths hit the headlines.Hollywood movie star Rock Hudson, who died in October 1985, was the first major celebrity victim. His death gave HIV and Aids a face, and opened up discussion of the condition and its relation to sexuality, which were both strangled by stigma.

Hudson had been diagnosed with HIV in June 1984 but, when the signs of his illness soon became apparent, ublicity staff and doctors said he was suffering inoperable liver cancer. It was not until July 1985 that the film star went public and confirmed he was dying of the disease. Freddie Mercury was the first major rock star to fall victim to Aids. The Queen vocalist hid his HIV status for several years but, following widespread speculation in the press, issued a statement confirming his condition a little more than 24 hours before he died in November 1991.

Other high-profile victims include Jacques Morali, creator of music icons Village People, Psycho actor Anthony Perkins, actor Denholm Elliott, sci-fi writer Isaac Asimov, tennis star Arthur Ashe, ballet dancer Rudolf Nureyev, DJ comedian Kenny Everett and Frankie Goes To Hollywood singer Holly Johnson.

HETEROSEXUALS

_ 5,900 heterosexual women in the UK are diagnosed HIV-positive
_ 1,800 are living with the virus without knowing it
_ The proportion of heterosexual people who become infected with HIV in UK increased from 24% in 2007 to 32% (1,100 people)
_ 63% (2,240) of heterosexuals diagnosed with HIV in the UK were infected in sub-Saharan Africa

GAY MEN

_ 80% of newly diagnosed gay men probably acquired their infection in the UK
_ 71.6% said they had been tested at some point in their lives
_ 46% had tested in the last 12 months

MOTHERS AND BABIES

_ 11,500 children have been born in the UK to HIV-infected mothers
_ Risk of passing on HIV from mother to child can be reduced from 20% without HIV treatment to less than 1% with treatment