Echo: My day-to-day life in Cork with HIV
A PICTURE tells a thousand words. For those whose voice is rarely heard, the result can be powerful.
At the launch of a new exhibition, PhotoVoice HIV, in St Peter’s Exhibition Centre, those words can be heard quite clearly in the collection of images of day-to-day life taken by Cork people living with HIV.
Syringes for subcutaneous injections of medication, a breakfast of oranges and tablets, unopened birthday cards bought each year for a son who died of the illness: many of the pictures are moving and some are bleak.
But not all: Austin Kelly, from Blackpool, shared a photo of his favourite treat, a delicious cup of cream-topped flavoured hot chocolate, alongside a photo of the door to his doctor’s surgery. It’s an attempt, he says, to show balance, the moments of comfort and pleasure that are needed by us all, not least those living with HIV.
“I wanted to show some positivity too,” says Austin. “I went out that morning to my doctor’s for a check-up and, coming back through town, it started raining and I thought, I’m going to treat myself to a hot chocolate. I put the two pictures together to put a little twist on it and make it more uplifting.”
Austin is 37 and was diagnosed with HIV in 2012.
“It was a shock,” he says. “I was getting checked out on a regular basis and I got back together with someone and so I decided to go in for a test and was positive.
“I told my best and oldest friend first and that helped me to face it. A lot of people like to pretend that there’s no stigma, but it’s still all very hush hush because there’s an older generation who would just prefer not to know these things. They just don’t understand.”
Apart from his vices of cigarettes and coffee, Austin’s health is fine. When he started his course of treatment, he was on four tablets a day. Now this is reduced to one, and like all sufferers he needs regular doctor’s visits to monitor his health.
A total of 454 Irish people have been diagnosed with HIV so far this year, according to the Sexual Health Centre. There are between nine and ten new diagnoses per day.
A new report by centre researcher Aoife Burke has revealed the isolation, stigma and sense of hopelessness faced by young people living with the disease.
All three of the young Cork people living with HIV that Aoife interviewed for her report said that they suffered suicidal ideation after their diagnosis and that they lived with a profound sense of isolation.
Even though the prognosis and life expectancy for HIV sufferers has advanced hugely since the introduction of antiretroviral drugs and, more recently, the introduction last year of PrEP (Pre- Exposure Prophylaxis) to prevent HIV negative people who have been at risk from contracting the virus, lack of basic knowledge around the once-fatal condition, as well as stigma attached to it as a disease contracted through sexual activity or injecting drug use, is still very present.
As many as 40% of Irish people still believe HIV can be caught through sharing a cup or a toilet seat with an infected person, a recent survey has shown. This ignorance and stigma make it difficult for sufferers to disclose their condition.
Austin says that telling his family was a struggle.
“They didn’t take it very well because we already lost my brother to another illness a few years ago, which was very hard,” he says. “I did say it to my sister and my younger brother, but a few years later after lots of hospital visits, my parents figured out that I had it. I think people need space to take it in and deal with it whatever way they can.”
It is of course absolutely vital that HIV sufferers disclose their condition to potential sexual partners.
“It’s a difficult subject to bring up,” Austin says, “So when it comes to meeting someone, that’s very hard. But I am fully honest about my status.”
If there was one message Austin could get across about living with HIV, what would it be?
“It’s not the end of the world. We’re still brothers, sisters, fathers, husbands and we just want to get on with our lives.”
Will Kennedy, originally from The Glen, was diagnosed 11 years ago, and volunteers at the Sexual Health Centre, where he’s currently developing a peer mentoring programme to share his experiences with those living through the difficult days of early diagnosis.
“It just does something to you, to hear that diagnosis,” he says. “But I decided I was not going to climb into the HIV closet. I was going to become an activist, and that’s what I’ve been doing.”
Will had also worked in the Gay Men’s Health project since 1994. Although he’s keen to share a message of hope with HIV positive people and show that it’s possible to live a good life with the condition — Will works out six times a week and his viral load has now reached undetectable levels — his ultimate goal is to eradicate the disease.
HIV is on the rise in Ireland: 2017 was the year with the largest number of new diagnoses since records began, according to figures from the Irish Health Protection Surveillance Centre (HPSC). More than half of these cases were amongst immigrant communities.
While almost 50% of new cases were amongst MSM (man who have sex with men), nearly one in five cases were contracted through heterosexual sex, while 4% of cases were contracted through IV drug use.
Will says there’s no need for the rise in new cases, but that education is vital.
“With PrEP and everything that’s out there, we shouldn’t be having 454 new cases,” he says. “It’s not complacency, because complacency is when you know about something and ignore it: young people are not even hearing about it. They hear about ‘STIs’.”
In part, Will believes that the Irish blind spot in tackling the issue is a hangover from old Catholic Ireland’s taboos on discussing things related to sex.
“Money is poured into cancer and diabetes campaigns, you see ads on the telly and everything,” he says, “but anything relating to sex seems to be at the bottom of the pecking order when it comes to funding.”
Tomorrow is World Aids Day, and in Cork, the occasion will be marked with a park run in Ballincollig Regional Park.
Cork Sexual Health Centre wants the run to highlight the importance of regular HIV testing for everyone and the need to ‘Know Your Status’.
Will is going to be taking part.
“It’s great that we’ll all be doing this in the t-shirts,” he says.
“Visibility is really important, for education and to improve the lives of people living with HIV.”
World AIDs Day Park Run is in Ballincollig Regional Park on Saturday, December 1 at 9.30am.
PhotoVoice HIV exhibition, sharing the experience of people living with HIV, is in St Peter’s Exhibition Centre on North Main Street.