In 2005, Aids nearly killed me – now I’m determined to outlive the condition

My perspective of Aids as a survivor is a unique one – particularly as with each passing year fewer survivors remain, and the horrors of Aids become more of a distant memory that younger people have no meaningful connection to. Bridging the generational gap is important to me.

When Aids began disproportionately wiping out gay men in the Eighties, governments on both sides of the Atlantic turned a blind eye to the crisis in a way that wouldn’t have happened if a virus was sweeping through the general population. Times may change but homophobia remains.

This is why I strongly believe that the history of Aids ought to be remembered in the first instance via the testimonies of those affected, and living survivors like myself have a responsibility to ensure that history is not whitewashed by those in power.

Of course, Aids is not over but you can imagine my joy when earlier this year Unaids published a report called “The Path that Ends Aids”, which shows that there is a clear path that ends Aids, possibly by 2030.

In less than a decade Aids could be no more. A prognosis I never could have imagined. There is now a chance that I could outlive the condition that came perilously close to killing me at just 25 years old.

Ending Aids after millions of people who, in so many cases, died in the most horrifying and unspeakable manner will be bittersweet, but knowing that no one else will have to suffer in such a way again is incredibly heartening.

To this day I can still vividly recall the walk to my doctors when my Aids journey began on 1 September 2005. Penetrating aches pulsated all over my body making me wince, and even though the distance was short I had to constantly stop and cling to lampposts to catch my breath.

I thought I had a bad flu because that’s what it felt like. What made me concerned is that I was seeing no improvement, only deterioration, in the preceding weeks.

Alarm bells really started ringing when I was so fatigued that I had to sit on an upturned bucket when taking showers every day because I could no longer muster up the energy to stand for longer than a few minutes.

The doctor examined me briefly and instantly said “go to the hospital immediately” – thankfully the hospital was just across the road.

When I stepped into the hospital that evening, I had no idea that I was so gravely sick. An HIV test was carried out which came back positive. My CD4 count (white blood cells that fight infection) was just nine. To put that into context, a normal CD4 count ranges from 500 to 1,500, and a CD4 count of less than 200 in a person with HIV is considered to be Aids.

Doctors told me that I had pneumonia, anaemia (which required blood transfusions) and severe malnutrition caused by diarrhoea and fatigue – I weighed seven stone.

In the space of a few hours my life was turned upside down.

From that evening, I would spend close to four months in hospitals, and finally a specialist HIV hospice called Mildmay in Hackney.

Throughout that time, because my immune system was completely devastated, I was hit with one opportunistic infection after the other. Cryptococcal meningitis (fungal infection of the tissues of the brain and spinal cord) caused terrifying seizures and at one point the intensity and proximity of them left me unconscious for hours on end.

My parents were the one constant. Despite coming from a strict Roman Catholic background in Ireland, they were led by love and always by my side. I still find it moving that my mum would arrive at my bedside with her tartan shopping trolley full of sweet goodies, fruit and gay magazines.

Ironically, one of the most disturbing parts of my Aids ordeal was when I was released briefly to stay with my parents because doctors wanted to see how I did on my first HIV antiretroviral combination medication, which was the key to strengthening my immune system and making a recovery. It was a race between the unpredictable infections and finding HIV medication that I could tolerate.

Part of this first combination was a drug called efavirenz, which I was warned could cause some unpleasant side effects – the understatement of the century. Vivid hallucinations while doing little more than relaxing with family, and nightmares the like of which put the scariest horror movies to shame.

Within a couple of days I was bed-bound and in a constant state of anxiety, too scared to be awake or asleep. I was also vomiting practically anything I ate or drank. Mum would buy me several big bottles of Volvic Fruit at a time – I still can’t bear the look or smell of it – which I would guzzle down and regurgitate soon after in a bucket that was kept by my bed.

Then, unbeknownst to me, I developed hyponatremia – drastically low sodium in the bloodstream – as a result of the efavirenz. Hyponatremia caused me to experience psychosis, resulting in me walking around the house at 4am in the dark brandishing a kitchen knife. As such, an ambulance was called and it was back to the hospital.

When I eventually came out the other side of Aids, I spent years feeling hopeless and struggling because the trauma ate away at me and that had a profound impact on my mental health. Now, I’m undetectable (the virus cannot be passed on) and I write and speak about my experiences to empower others and educate in order to bridge the generational gap.

Living to witness the death of Aids would be the perfect happy ending to my Aids story. Retribution of sorts for all the pain I was put through; for my parents and friends whose lives were thrown into turmoil for months on end.