Tuesday 25 October 2016

'I was stunned by people saying Charlie Sheen must be gay '

On World AIDS day, our reporter speaks to a man who’s lived with HIV for 25 years and is still amazed by how little people know about it

Arlene Harris

Published 02/12/2015 | 02:30

Educate: Jimmy Goulden has been living with HIV for 25 years and wants to end the stigma surrounding the disease.
Educate: Jimmy Goulden has been living with HIV for 25 years and wants to end the stigma surrounding the disease.
Charlie Sheen

He's always been known as one of the bad boys of Hollywood, but even Charlie Sheen managed to rock the boat when he announced last month that he is HIV positive.

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Today is World AIDS day and while there is more awareness about HIV and AIDS in 2015 than there was in the 1980s amid fears of a global epidemic, many people still know very little about the condition.

Jimmy Goulden was diagnosed as HIV positive when he was 28-years-old. Now 53, he says he was shocked by the reaction to Sheen's recent announcement.

"When I was first diagnosed with HIV, there was a terrible stigma attached to it and most people assumed that they could get infected just by being in the same room as me," he says.

"Back then, it was also largely seen as a disease which only affected gay people so when Charlie Sheen came out with his news last month, I was stunned by the amount of people who said to me that they never knew he was gay.

"I tried to explain that straight people got it too, but I'm sure many didn't believe me. So it is very good that he has opened up about this because despite the fact that hundreds are diagnosed with HIV in Ireland each year, it takes a celebrity like Sheen to create headlines and get people talking about how it is actually contracted."

Goulden, who lives in Dublin, says a hedonistic lifestyle is usually to blame for the spread of HIV and is thankful that he didn't succumb to full-blown AIDS two decades ago as his life, at the time, was spiralling out of control.

"When I was first diagnosed with HIV in 1990, I was actually convinced I had AIDS," he admits.

"I had been in a bad way for a long time and was addicted to prescription drugs and alcohol - or anything really which would take me out of sobriety.

"At that time in Ireland, condoms were illegal as was being homosexual and my role in life was that of a sex worker, so you can only imagine the risks I was putting myself in every single day.

"I had actually been tested for AIDS the previous year after one of my 'colleagues' died from the disease, but much to my surprise, it came back negative.

"I was being treated for addiction at the time and a few months later, went back for a second test which was positive.

"Although this was a shock, I was kind of expecting it - and because my life was so awful, I was actually glad as I saw the diagnosis as my ticket out of life."

As the fifth of 10 children, Jimmy often had to fend for himself while growing up and when he hit his teens - and realised he was gay in "holy Catholic Ireland" - went totally off the rails. But his family did all they could to help get him back on his feet.

"I got involved with a very bad crowd and became very unmanageable," he says. "I went out with a drug pusher for a while, then a bank robber and then another pusher - it was a really bad time for me.

"I tried to commit suicide when I was 15 by jumping into the Liffey as I had no sense of self-worth or self-esteem.

"Being gay back then was like having the plague - fingers were pointed and life was very difficult, so I started on the road to ruin and eventually got diagnosed with HIV.

"I remember the day clearly - I was on my own and left to walk out the door without any sort of counselling - I felt like I had nobody to turn to.

"I went home and drank a bottle of vodka and the following morning, my brother rang and told me that, when I was drunk, I had called my mother and bluntly told her I had HIV.

"She was really upset but supportive and both she and my dad said that even though the prognosis was really bad, if I pulled myself together, I could get a few good years out of life."

But he was so disillusioned with his lot, that, despite medical help, Jimmy continued abusing himself and ended up in hospital with meningitis, TB and blood clots.

His weight dropped to six stone and this was the wake-up call he needed to change his life around.

"By being nice to me, my family were sort of enabling me," he says. "So when I continued with my lifestyle and was hospitalised, they eventually told me that I was on my own and strangely, this is what made me sit up and take notice.

"I started taking regular medication for HIV (40 tablets a day), I went to Baggot Street Hospital where I was re-educated in life and gained self-worth and confidence. I had treatment for my addiction and learned how to have a positive mind-set.

"Of course, I slipped up all the time and had horrific side effects (weakness, poor vision, nausea) from the medication, but I finally felt safe and had a reason to carry on."

Twenty-five years after his HIV diagnosis, Jimmy is a changed man. He is still living with the condition, is on medication for life and always has to be careful not to catch infections, but is positive about the future.

"There is no magic cure for HIV," he says. "I will be taking tablets for the rest of my life, my immune system is weaker than normal and I am more prone to illness than others may be.

"But I don't have AIDS - I am feeling great, do yoga five days a week; I practice positive thinking and crucially, safe sex.

"Society is still very uneducated about HIV - when I tell people I have the condition, they immediately think I have AIDS. I want people to know that they can't catch what I have from drinking out of the same cup, but at the same time, I would encourage people to always use a condom and never share needles - it could save their life."

For advice and support visit hivireland.ie and positivenow.ie

Everything you need to know about HIV/AIDS

What does it mean to be diagnosed with HIV in 2015?

It means knowing you are infected but can access specialist healthcare. It is current best practice to treat all patients newly diagnosed with HIV. Response to treatment is assessed by monitoring the CD4 count, a measure of the immune system and the viral load, the amount of the virus in the blood. Within months on the appropriate treatment, the immune system starts to improve and the viral load becomes undetectable. This means that your infectiousness to others is greatly diminished.

Could I have HIV and not know it?

Absolutely - untreated HIV infection slowly damages the immune system and may take 10-15 years before the immune system is sufficiently damaged to cause clinical problems which are identifiable as advanced HIV infection. If you do not test, you will not know your HIV status; you will have a progressive loss of immune function and will be unknowingly infectious to others.

I'm worried I might have HIV but don't know what to do

If you are worried, get tested. The blood sent to the laboratory is accurate 4-6 weeks after your exposure. The test might be negative in which case you will be reassured. If positive, you can go on treatment.

Will being diagnosed with HIV ruin my sex life?

HIV infection will not ruin your sex life. You will be on appropriate treatment. In 2008, the 'Swiss Statement' reported that if you are on effective treatment for a minimum of 6 months with an undetectable viral load and are not infected with another sexually transmitted infection; you are not sexually infectious to others. Knowing that you are not infectious should help your sex life.

Will I be destined to get really sick?

Not if diagnosed early and put on appropriate medication. Some people are not great at visiting their doctors which means that monitoring of blood pressure, blood sugar and cholesterol is not as good as it should be. Those who are HIV positive and engaged in HIV care are reviewed at least twice a year and will have ongoing monitoring of clinical wellbeing. Late diagnosis with HIV infection can be very serious and life-threatening.

Will I be obliged to tell people?

No, you are not obliged to tell people. If you deliberately have unprotected sex with someone, are not on appropriate HIV treatment and are infectious, you are committing a serious crime. If you are not infectious you are not. Unfortunately, HIV is still a stigmatised illness, patients should think carefully before disclosing their diagnosis.

How many Irish people live with the disease?

There are 4,500-5000 people currently living with HIV in Ireland.

Which groups are most at risk?

Of those new cases for whom a risk of infection can be established, the group at highest risk is men who have sex with men who represent almost 50pc of those testing positive each year. Less than half of these men are born in Ireland. Heterosexual infection accounts for approximately 30pc of new cases. The majority of these cases were born in areas of generalised HIV epidemic. A small percentage of cases of HIV infection were in people who inject drugs and this has been linked to homelessness. Mother-to-child transmission during pregnancy is currently extremely low.

How is HIV transmitted?

HIV is transmitted in four main ways: by unprotected sex, from mother to child during pregnancy, by injection drug use with needle sharing and by untreated needle stick injury, occupational or non-occupational.

- Dr Shay Keating is one of Ireland's most highly regarded experts in the area of sexual health

Irish Independent

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