Tuesday, 14th April 2015
The number of young men being diagnosed with HIV has doubled in ten years – but many people are ignorant of what it means to live with the condition now. Here, three men in their twenties talk about living with the virus. We'll be sharing each story over a number of days.
Tom Knights, 28
'For a year and a half, the only places I went were ASDA and the hospital'
“I’m not a promiscuous person; I hadn’t had sex for a year when I got it. Three years ago, I was working for a company that runs clubs in London, and a guy I had a crush on used to pop into one club every now and again. It was someone I really liked, or at least thought I did, and one day we got together.
“I’d always done a lot of work for the gay community. I had volunteered for [HIV charity] the Terrence Higgins Trust and I had been the LGBT officer at my college in Sussex. I’d read the literature and I would have said I had an OK knowledge of HIV. But really I was the biggest hypocrite going. I was always giving out advice so somehow, unconsciously, I didn’t think it applied to me.
“When I got the diagnosis I was just numb. I thought it was the worst thing that could possibly have happened to me. There was so much stigma around HIV that I just ignored it. I can’t even say I was upset for that first year because I really just didn’t acknowledge it.
“I was going out five nights a week, not living the greatest lifestyle, and eventually my health started to deteriorate. Then I had to go back to the doctors and that’s where it really sunk in. There’s a part of me that was surprised the clinic never got in contact in that first year, but I know it was my responsibility to go.
“Once I started treatment, I went from being a very outgoing person to being a hermit. The only places I went for a year and half were ASDA and the hospital. I trusted the wrong people at work and it got around. I left and ended up on job seeker’s allowance.
“When you have any type of chronic health condition you want to be eating high-quality food but I just couldn’t afford it. I was doing hardly any exercise and I was seriously depressed. That was the worst thing, really.
“When I started on medication, my ‘viral load’ was through the roof. To this day, I haven’t stayed undetectable [meaning there is a negligible chance of transmitting the virus] for more than six weeks. I’ve had to change my meds three times because they haven’t been working and the side-effects have been awful.
“Now I take three pills every evening. One of the side effects is night terrors, which are like the most twisted nightmares you’ve ever had, and night sweats. When I get run-down I get water blisters all over my hands and feet. They pop and then they get infected – I get them on the knuckle, which really kills. I always seem to have one sort of infection or another. I’ve had shingles, ear infections, chest infections…
“Relationships have also been difficult. There were people who never spoke to me again – people I thought of as good friends – just because they didn’t want HIV in their lives at all. I haven’t had sex in two years, and I’ve only had two partners at all since my diagnosis.
“One was a guy I’d known for ages and he was the one who wanted to pursue something with me, but when we had sex I could feel he wasn’t fully there. Then it went very weird. We planned to meet for dinner one evening but he never showed up and we haven’t seen each other since.
“I’ve got a job now, working as an events producer and manager. That side of things is good. I’m happy with my career and I’ve got a good salary. I know I will eventually become undetectable and I do want to start dating again.
“Most of the time I have a sense of humour about it. When people ask why I’m single, I’ll put on a voice and say, ‘It’s because I’ve got the AIDS!’ But I still have my moments when I cry and think I’m going to die like Tom Hanks in Philadelphia.
“I won’t, because I’m getting the right treatment and I’m starting to take care of myself properly. I know HIV is manageable now, but it’s not fun.”
Article by Theo Merz; The Telegraph
Original Article can be found here.
