Belfast Telegraph

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'I'd never dreamt of going for a test as I didn't ever think I'd get HIV. My girlfriend is supportive, but it's hard to live with'

As new figures show HIV cases rising faster in Northern Ireland than in any other part of the UK, Stephanie Bell talks to three people here about what it's like to be diagnosed with the disease.

More people have been urged to come forward for testing as new statistics reveal that the number of HIV cases are rising faster in Northern Ireland than any other part of the UK.

Last year 700 people were treated in the province for the infection but the Public Health Agency and support charities are concerned that many other cases are going undetected because of the stigma still associated with the disease.

Releasing the latest statistics on World Aids Day on Monday, the PHA's Dr Gillian Armstrong issued a direct plea to those too frightened to get tested.

"There will be people in Northern Ireland who are living with HIV who do not know," she said. "We'd really like to stress the importance of coming to get tested if you think you've put yourself at risk.

"Early testing and getting a diagnosis helps you get treatment that you need - and the treatments are very good these days - and also helps you to protect your loved ones and your sexual partners."

Since HIV can now be successfully treated, enabling many to live normal lives, a diagnosis is no longer the death sentence it once was. But the stigma remains, preventing people from coming forward for a test. And, crucially, without treatment the chances of survival are dramatically reduced.

Jacquie Richardson, CEO of the charity Positive Life which is dedicated to supporting people with HIV, says: "The new statistics show that of those diagnosed over half - 52% - were late diagnosis. "People are fearful of being tested because of the stigma which unfortunately is still associated with HIV.

The reality is that the later the diagnosis the poorer the prognosis so early detection really is very important. It is a manageable long term health condition if diagnosed early and people can live a good quality of life."

The heterosexual couple

John (not his real name) is a 51-year-old heterosexual man from Co Antrim and the perfect example of why everyone should be regularly tested. In 2011 he was literally at death's door as baffled doctors battled to save his life unsure of what had made him critically ill.

No one had suspected the infection was the cause of his serious illness.

By the time John was diagnosed his immune system had broken down and he was left with permanent damage on his lungs forcing him to give up work.

He says: "I'd been going back and forward to the doctor for about seven to eight months - I was sweating at night in bed, I'd a dry cough, I felt tired all the time and was losing weight. Finally, I went to A&E and they put me in a respiratory ward.

"The doctors couldn't understand what was wrong with me, and after three days in hospital they rushed me to intensive care where I spent five weeks fighting for my life. They had done all sorts of scans and tests and then a doctor asked me had I ever been checked for HIV - I vaguely remember saying no.

"A couple of days later my girlfriend and my family were told I had Aids and was suffering from pneumocystis pneumonia."

John has no idea when he contracted the infection as he was in such late stages of diagnosis he was told he had been living with HIV infection for many years.

"I'd never dreamt of going for a test because I'd always thought it would never happen to me. My family and my girlfriend have been very supportive but it's a situation you can't talk about to anybody - you withdraw yourself from everyone. It's hard to live with - there's a stigma about it.

"No one outside my family knows. Positive Life is the only place you can go and talk to ones that are in the same condition as yourself. There's no stigma there - the staff are very good, always helpful - and there's counselling and aromatherapy. There's things to do.

"It's bad enough being diagnosed, never mind having a late diagnosis. I never thought it would happen to me and I'm sure there are many people who feel the same but it is so important to have regular tests.

"My lungs are permanently damaged and I can't work and had I got treatment earlier I would never have been like this."

'My mum and sister made me realise it was not a death sentence... they've been incredible'

It is in the hope of helping in the ongoing battle to smash the social stigma that local actor Matthew Cavan took the brave decision on World Aids Day four years ago to talk publicly about his experience of living with HIV.

Since then he has become a huge supporter for thousands of people who are unable to tell anyone they have the disease.

Matthew is now working as a drag act called Miss Cherrie on the Top, with a residency every Saturday night in the Cabaret Supper Club in Belfast and on Wednesday in the Maverick Bar, also in the city.

His own journey has not been easy and he readily admits that he has considered suicide many times since his diagnosis in 2009.

Being told he was HIV positive was a complete shock to Matthew (25) and, in coming to terms with it, he says he has had to endure rejection not just from strangers but many people he knew well, especially in the gay community.

Only the support of family and close friends has helped him cope during the worst of times.

He says: "I was very prevalent on the gay scene at the time and after my diagnosis a lot of people ran to the hills and didn't want to know me or speak to me again.

"To this day I still get that - just this week I got an anonymous message on my Facebook saying how disgusting I was, that I should be dead and that my family should be ashamed of me.

"It takes its toll. No matter how strong you are it still hurts to know that there are people out there who think that of you.

"I am such a people pleaser and I don't like people not liking me. I still live with a lot of internal shame about HIV. I still have a virus and that's hard to deal with some times. Suicide is never too far from my head.

"Lifeline is one of the most incredible services we have in Northern Ireland and they have talked me down from the ledge on a number of occasions. I owe them a lot."

Matthew grew up the youngest of four in a devout Christian family in Carrickfergus, where the church was very much the focus of their lives - his mother, Kathy, was an elder and his sisters, Sarah and Vicky, were Sunday School teachers in the Downshire Presbyterian Church.

He was nine when he first suspected he might be gay after watching the Channel Four TV show Queer as Folk and finding himself connecting with the homosexual characters.

More interested in the arts and drama than PE and football at school, he became the victim of intense bullying throughout his teenage years.

"I would say from first year to fifth year, there wasn't a single day when I wasn't taunted and called names such as gay boy, faggot, queer or poof. I don't think I was particularly camp, but I was more effeminate than the average boy. It was so bad that it made me feel that being gay must be the worst thing in the world and it made me feel horrible and dirty."

He was 16 when he told his family who immediately accepted his sexuality.

He first plucked up the courage to tell his brother David, who then supported him in telling his parents and sisters that he was gay.

Their acceptance meant the world. "After six years of receiving absolute hell, I had now told the people who love me and it was ok. The relief was immense."

Matthew says he was always cautious about his sexual health and was tested every six months for sexually transmitted diseases and HIV.

It was during a routine screening in 2009 that HIV was picked up. Matthew knows exactly when he contracted the disease as it was the only time he had unprotected sex from the age of 16.

He recalls the shock of being told he had tested positive for HIV: "I didn't know anybody with HIV and I didn't know much about it. My head just went into a spin. All I could think about was that I was going to die.

"I went straight to my mum and sister, who are both midwives, and they got me down from that level where I thought I was dying and made me realise it wasn't a death sentence. My family has been incredible; I wouldn't be here today without them."

Matthew has been encouraged by the number of people he has been able to help since he first spoke out.

Thousands from all over the UK and Ireland have contacted him through his Facebook page.

He, too, is concerned about the many people he knows who because of the stigma have kept their diagnosis a secret and also those who are too frightened to get tested.

"The biggest killer is the stigma and people's attitudes," he says. "Words can ruin a person's life. On gay websites people would ask you if you are clean and the notion of having HIV and being dirty is not nice.

"Simple things like that which people don't think about are hurtful.

"I've had hundreds contact me saying that no-one apart from their doctor and me knows they have HIV. Speaking publicly is not for everyone, it hurts like hell, but it is really important that people find someone to talk to - be that a family member, a friend or a support group.

"We need to stamp out the stigma so that people can get help and get tested."

'Someone I knew was diagnosed so I realised I should get tested'

John Carchrie Campbell, from Ballymena, moved to Gibraltar earlier this year when his civil partner, Andrew McFarland, who works as a technical writer for a games company secured a job there. John (36) was diagnosed as HIV positive in 2009 and just eight days later started a blog to record his journey.

Called "HIV Blogger: living positively", it has had over 52,000 hits and helped break down many barriers for people living with the disease.

A former communications officer, John is a volunteer with the Scout Association and St John Ambulance in Gibraltar. He is also studying for an Open University degree in Spanish.

He has spoken in a number of schools and further education colleges about his life and this week on World Aids Day was featured on TV and in newspapers in Gibraltar talking about living with HIV.

John had always been aware of the need to get tested, but kept putting it off because he simply couldn't find the time. He says: "Somebody I knew was diagnosed and it made me realise that I would have to get tested. I just kept thinking 'I'm okay, I have nothing to worry about' and when the test did come back positive it was a bit of a shock.

"Without the support of Positive Life in Belfast I don't think I would be here now. I got very low and would have been in the centre every day because it was somewhere I felt safe and surrounded by people who were looking out for me."

John feels fortunate to have had the backing of family and friends, and he has never shied away from telling anyone he is HIV positive.

Meeting Andrew was something he was not expecting and, in 2011, the couple had a civil partnership service in Belfast City Hall followed by a covenant of commitment in All Souls Non Subscribing Presbyterian Church.

John says: "After I was diagnosed I thought 'No-one will ever want me now' and after meeting Andrew I just thought 'How could I have been so wrong?'. I had just stopped looking and it was a classic case of when you least expect it, it happens.

"I'm lucky because I can honestly say I never have had a bad reaction from anyone about my HIV status. I'm a very open book about it; I have never hidden it away."

John is sympathetic to those who feel they have to hide the fact they have HIV, but feels that until people are prepared to speak out about it, the stigma will linger.

He says: "I understand why people keep it a secret, but it is not helpful to them for their own self-esteem or in the long run in trying to combat the disease itself. Until some of us are prepared to step forward and put a face to, then it will remain self-stigmatising. The more it is hidden away, the more people will be ostracised."

HIV: the facts and figures

  • HIV/AIDS can be transmitted through sexual contact, sharing needles and syringes, and transmission from mother to child before, during, or shortly after birth.
  • While still largely believed to be a gay disease, the latest statistics show that 42% of the 94% of people who contracted the disease through sexual contact in Northern Ireland last year were heterosexual.
  • Compared with the rest of the UK, Northern Ireland had the largest proportional increase in new HIV diagnoses between 2000 and 2013.
  • In 2012, there were 95 people newly diagnosed in the province and last year the figure was 94.
  • The number of people living with HIV in the UK has doubled in the last 10 years
  • Around 100,000 people are living with HIV in the UK
  • One in five people with HIV are undiagnosed
  • About two thirds of people living with HIV are men and a third are women
  • Over half of all people living with HIV are aged between 30 and 49, but there are significant numbers of young people and older people now living with HIV

How the disease has hit the famous

Celebrities who have died  from Aids-related illness

  • Rock Hudson - the much-loved movie star of the 1950s and 60s died in late 1985 from an Aids-related illness, causing shockwaves around the world.
  • In a move that reflected the stigma of HIV at the time, his publicity team had covered up his illness by saying he had liver cancer
  • Freddie Mercury (right) - the flamboyant lead singer of rock band Queen tested positive in 1987 and died of Aids-related pneumonia four years later - just one day after publicly acknowledging for the first time that he had Aids
  • Elizabeth Glaser - the wife of Starsky and Hutch actor Paul Michael Glaser gained fame through her efforts to fight the disease. She contracted HIV in 1981 through a blood transfusion, but did not find out until 1985. As a result, she unwittingly passed on the virus to her two children. Her daughter, Ariel, died in 1988, but her son, Jake, is alive and well today
  • Liberace - the iconic pianist, once the highest-paid entertainer in the world, died of Aids-related complications in 1987, but the cause of his illness during his final years was kept secret from the public

Celebrities living with HIV

  • Andy Bell - the Erasure frontman publicly announced he was HIV positive in December 2004 and has been aware of his condition since 1998. His longtime partner, Paul Hickey, passed away in April 2012
  • John Grant - at a live performance with Hercules and Love Affair at the 2012 Meltdown festival, US singer-songwriter Grant publicly acknowledged for the first time that he was HIV positive. In the album Pale Green Ghosts, he sings about the condition on the track Ernest Borgnine
  • Holly Johnson - the Frankie Goes To Hollywood singer learned that he was HIV positive in December 1991. This triggered a temporary withdrawal from the music business and public life in general. His condition was made public during an interview with The Times in April 1993
  • Magic Johnson - the US basketball player, who was named one of the 50 greatest players in NBA history, announced he was HIV positive in 1991, helping to dispel the myth that it was a "gay disease" (Johnson is heterosexual)

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