WALES rugby legend Gareth Thomas recently revealed he is HIV positive and admitted the diagnosis left him wanting to “drive off a cliff”. HELEN MCGURK hears from one Northern Ireland man about his struggles with coming to terms with his diagnosis.
Seven years ago ‘James’ was convinced he had cancer.
He had lost four stone in weight and was breathless, even walking from the living room to the kitchen was a Herculean task.
The then 30-year-old went to his GP.
‘‘She did bloods and asked for permission to do a HIV test, just to rule it out.
‘‘HIV was never on my radar. Then I got a phone call from her saying ‘I need to see you, come in this afternoon’. To be told I was HIV positive was like being hit with a ton of bricks. It just completely, completely blew my mind. The bottom fell out of my world....why would this happen to me, why would HIV happen to me ?....’’
Speaking candidly, James, who is gay, added: ‘‘We all make choices, we decide who we are going to sleep with, or not sleep with, and I had multiple partners at the time.’’
In 1985 a prominent public information campaign to combat the growing AIDS epidemic was shown on television adverts. It featured portentous imagery of a headstone and an ominous voiceover from actor John Hurt, who intoned: “There is now a danger that has become a threat to us all. It is a deadly disease and there is no known cure.”
The word etched on to the blackened grave is revealed - AIDS. “Don’t die of ignorance,” ran the slogan.
James said it was this imagery that came to mind when he received his diagnosis.
‘‘I always remember that headstone campaign and that’s what went through my head.
‘‘Since then there had been no other mention or follow-up about it (AIDS)..it makes you think it’s not there - it doesn’t exist, it’s in the States or in Ethiopia, but not in Northern Ireland, not on your own doorstep.’’
In ‘‘total disbelief’’ at his diagnosis, James waited a week and then was sent for a referral to the GUM (Genitourinary Medicine) clinic at the Royal Victoria Hospital, Belfast.
‘‘That week was a very long week. You have all sorts going through your head. I never got that headstone out of mind.
‘‘I remember one person on a TV programme about HIV having three carrier bags of medication and just the dread thinking ‘is this going to be me?’ That was my ignorance, not knowing the advances in medication and treatment.’’
Thanks to antiretroviral treatment (one tablet a day) James is considered to have an ‘undetectable’ viral load, which means the level of virus in his body is so low that blood tests cannot detect it, however, it still means he is HIV positive.
Despite being undetectable, James said he still always feels fatigued and ‘‘physically and emotionally and psychologically drained.’’
‘‘I still feel breathless, I have to make a conscious effort to breathe sometimes.’’
But, he said his main issue is how the HIV diagnosis has affected him mentally.
‘‘I feel dirty - it’s a dirt that’s on the inside that you can’t wash away. It’s how I perceive myself to be and how I perceive other people to see me.’’
Not long after his diagnosis, James recalls going to a bar.
‘‘I can remember walking in and I just felt as if I had a flashing neon sign on my head saying ‘I’m HIV positive’. I thought everybody knew, everybody was looking at me and everybody was talking about me - even though I knew in my head they didn’t know and they weren’t looking at me.’’
James, whose relationship with his partner fell apart, said he shut himself away ‘‘in fear of being outed.’’
Hefell into a deep depression, from which he still suffers.
‘‘I walk past an undertakers or a hearse drives past and there’s a coffin in it and I wish it was me that was in that in that coffin. I just feel I have nothing to give, I’m worthless and I wouldn’t be missed, so why put yourself through every day being a living hell.
‘‘I go to bed and HIV is on my mind, and I wake up in the morning and HIV is on my mind.
‘‘If I stop taking the medication, the virus is going to spring back to life, and if I am honest, sometimes I have thought about stopping the treatment, because then I would die.
‘‘I have attempted to take my own life about six times - some of them serious where I’ve ended up on life support, but I’m here.
‘‘In March of this year I went missing, I was missing for three days and had the police and had the community rescue services out looking for me.’’
Wandering the streets of Belfast, James eventually turned up at the door of Positive Life, Northern Ireland’s only charitable organisation dedicated to supporting anyone living with or affected by HIV, and to whom, James says he owes his life.
‘‘I spoke to one of the support staff and he made me see that there was hope, because the first thing I said was ‘if you ring the police or an ambulance I’m gone’, but he spent the time, he showed me that he cared and Positive Life gave me an insight that there is something I can do - even like doing this interview.’’
James eventually had to give up his job and now relies on benefits.
‘‘If it wasn’t for the support of family, I couldn’t survive and have had periods this year where I haven’t eaten for 10 days because I didn’t have the money.’’
James’ family are aware of his diagnosis, but he said it is not openly discussed.
‘‘My family probably have that 1980s mindset - my mum wouldn’t say that I am HIV positive, she would say I have AIDS - but it’s not something that’s talked about. They would know I had a hospital appointment, but they wouldn’t ask anymore.’’
However, James said that since March this year he has had a ‘‘different mindset’’ in terms of accepting he is HIV positive.
‘‘I’m in a totally different place, a more positive place, not a fantastic place, but a better place than where I was, and that’s down probably to the people at Positive Life and knowing that somebody actually cares.
And now James would like to help others who have been diagnosed.
‘‘My promise to myself is I want to be the instigator of getting a news pack together for somebody who is newly diagnosed that will say this is what HIV is, this is what’s happening now, giving information and explanations, but also that there are organisations like Positive Life, that is open not only to gay people or straight, it’s there for anybody.
‘‘I wasn’t signposted to Positive Life, I had to find them. I know there was stuff said to me on the day of diagnosis, but it went over my head, where I think if there was a simple information pack or booklet put together, it would really help. Also to let people know that if you’re struggling you can contact the GUM clinic, they have support staff there, or you can contact Positive Life, Lifeline or the Samaritans
‘‘To me information is key, and not knowing is the worst thing.’’
James has welcomed Rugby player Gareth Thomas’ decision to talk about his HIV diagnosis.
‘‘It gets it out there and it gets it talked about - people need to know this condition is out there and it’s out there today.
‘‘We need to educate children from secondary school - if you play the field, it’s not just pregnancy that could happen.
‘‘I identify as being gay, but HIV could happen to any person, It’s not just a gay man’s illness, or a sex worker, or a drug user’s, it’s as much part of the heterosexual community.
‘‘I wouldn’t want somebody else to go through what I’m going through. HIV consumes my being and if me telling my story makes somebody use a condom, not just to protect from pregnancy, but other sexually transmitted infections, then I am happy to have told it.’’
*Positive Life can be contacted on 0800 137437
*Lifeline on: 0808 808 8000
*Samaritans on 116 123
*The person we interviewed for this article wished to remain anonymous.