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HIV diagnosis: 'I went into a spasm of shock. My mother knew the result just by looking at me'

But HIV is no longer a terminal illness, it’s a chronic disease and is manageable, writes Gary.

Anonymous Dad of three

LAST SUNDAY 26 November was a significant day for me. Not only was it my parents’ wedding anniversary but it also marks the 28th anniversary of the day I was diagnosed as HIV positive.

I was 30 years old and at the time was in a psychiatric unit being treated for depression when the test results came back positive.

I went into a spasm of shock and my mother knew the result just by looking at me. Back in 1989 the life expectancy for someone with HIV was 12 to 18 months. I felt I was facing a death sentence.

Doctors didn’t have much information for us

It was such a new disease that the doctors didn’t have much information for us. My mother decided our weapon of choice would be information, so we started arming ourselves with research.

The next two years were extremely low for me. I found it hard to get out of bed. Funerals of friends seemed to be always happening, with one friend passing away and six months later his partner too, both due to HIV.

I lost my job. Ambulances left without me. Prescriptions got mixed up and accidently poisoned me. It got to a point where my mother had to feed me to ensure I ate.

My depression was compounded by the fact that I had HIV. I was completely struck down by it.

I can’t describe the hope it gave me

Eventually change started to occur. I’ll never forget the day my doctor told me my HIV was now deemed long-term non-progressive. I can’t describe the hope that gave me.

My hectic social scene pre-diagnosis became a distant memory. Anyone living with a chronic illness knows that you must make lifestyle changes. It was tough but I stopped drinking and smoking and began eating well and exercising regularly. These changes had a significantly positive impact on my mental health which has given me increased strength to deal with my chronic disease.

My crutch throughout this whole journey has been AIDS West. I first heard of AIDS West five days after my diagnosis in 1989. It was World AIDS Day and they were on RTÉ Radio 1.

I went to the nearest payphone with a couple of 50 pence pieces and called RTÉ to find out about this support service. The following day three of the team from AIDS West came to visit me. I was assigned a befriender and the support I have received from them in the last 28 years has been invaluable. I didn’t think I would grow older with this virus so have relied on the support of the organisation to help navigate the journey and I continue to do so.

A sense of purpose

If I was to give one piece of life advice to someone who has been diagnosed with HIV it would be to get a dog. My dog Rufus has given me a sense of purpose and helped take the focus off myself and my illness. I have to get up every day to walk him and care for him.

When I was in my early twenties I knew nothing about HIV or the risks. I simply thought I would live forever. I suppose one of the greatest lessons for me in all this is that there are consequences to our actions and taking a risk is not always worth it.

I’m 58 now and I expect to live well into my eighties or nineties. As well as HIV, I experience all the same aches and pains as anyone else in their fifties.

Thankfully today, access to services is far greater, treatments are more readily available and there are more clinics to diagnose and treat those with HIV. Stigma still exists however though in my experience it has abated somewhat since the 80s.

HIV is no longer a terminal illness, it’s a chronic disease and is manageable if treatment is adhered to.

My advice to anyone who is concerned about exposure to the virus is simple: go and get tested. It’s not easy but the support systems are in place to help make the process more manageable.

To anyone who has been diagnosed as HIV positive, keep asking questions, stay informed, take your medication and live your life to the fullest. I never expected to age with HIV let alone age positively.

Written by Gary* who wishes to remain anonymous. AIDS West is a voluntary organisation based in Galway. For anyone seeking information or support visit aidswest.ie or call 091 562213.

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Anonymous  / Dad of three

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