How It Feels To Be Told You Are HIV Positive

Listen to Chronic, our anti-wellness podcast about living well when you’re chronically unwell. Available on Apple Podcasts, Spotify or wherever you listen to podcasts – just search for “Chronic”.

Rory O’Neill, AKA Panti Bliss, is Ireland’s biggest drag star. He’s also an advocate for HIV awareness, having lived with the virus since 1995.

When he was first diagnosed, his doctor told him to start getting his affairs in order. Now, 25 years later, HIV is a medically managed condition that Rory barely thinks about.

This week, he’s joining HuffPost’s Lucy Pasha-Robinson on our anti-wellness podcast Chronic, exploring the dangers of the enduring stigma around HIV, in spite of the huge strides in treatment that have happened over the past three decades.

We also talk about how not to lose yourself in a diagnosis, and what helped Rory stay grounded. And we dive into the healing power of drag, and taking ownership of the narrative around illness through comedy.

Here, Rory shares how it felt to be told by his GP that he was dying:

I was 26 years old in 1995, and I had been to funerals of people who had died of AIDs or AIDS-related complications.

So, I was under no illusions about what the GP was telling me.

I knew what he was saying was: “You’re going to die.” And I knew that what he was saying was “You’re going to die and it’s going to be a horrible death.” You know, that it be sort of grasping and marked, scarlet lettered almost, because there would be no shortage of people out there who would be willing to say it was my own fault and offer no sympathy.

The first thing I remember feeling was feeling sorry for my GP, because I remember seeing how uncomfortable he was. I remember walking out of his office and it’s just a perfect, gorgeous, spring, sunny afternoon. And I was just really furious for a moment with all the people going about their days as if it was a perfectly ordinary day, worrying about catching the bus home.

And I remember wanting to say: “It’s not a fucking ordinary day, I’m fucking dying.” But of course, I’m terribly middle class, and didn’t want to cause a scene.

I look back at all the stuff and the journey and everything that happened, and I think I was lucky. I was lucky to be diagnosed when I was because it was just on the cusp of the development of real effective treatments.

I look back and see there’s a progression of always slowly getting better, up until 10 years ago where I was able to start taking just one pill a day, and get on with the rest of my life. I consider myself to be very lucky.

Hear more from Rory on this week’s episode of Chronic, available on Apple Podcasts, Spotify or wherever you listen to podcasts – just search for “Chronic”.