Wednesday 21 August 2019

'At that time it was a death sentence' - Rory O’Neill on living with HIV

Panti Bliss
Panti Bliss

Markus Krug

Rory O’Neill, also known as Panti Bliss, has described how the situation for patients infected with HIV has changed since he has been diagnosed with the virus almost 25 years ago.

During an interview on The Ray D'Arcy Show presented by Kathryn Thomas on RTÉ Radio 1 he openly acknowledged the bleak outlook he was given in 1995.

“At that time it was a total death sentence. They told me in the clinic during my first appointment that I had maybe five years. And that’s it. Nobody survived.

“To go from that to where it is now is remarkable. When I was first diagnosed, there was no success rate.

“When I was diagnosed I never thought that I would reach my 50th birthday,” he said.

Mr O’Neill also described how the treatment has advanced since the first medication for HIV has hit the market.

“About a year after I had been diagnosed the first of the antiretroviral drugs had been successful. In the beginning, they were clumsy and difficult.

“At one point I was on 38 pills a day and some of these pills had to be taken with food, some of them without food and so on. And many had side effects. So taking all of those was at one point my full time job.

“And now I literally take one pill in the morning and forget about it,” he added.

Despite the advantages in medicine, Mr O’Neill still feels that there is an atmosphere of shame and stigma around the topic.

“Most people aren’t able to go out and talk about it. Only a handful of people in this country are willing to go on the radio and talking about being HIV positive.

“In the next few weeks I will be getting emails from people from usually smaller towns, who are living with HIV. They are healthy but they are absolutely melted about it because they have never told a single soul,” he said.

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