Alex, a 26-year-old, rugby playing marketing account director, living in Brighton conducts his life secure in the knowledge he can’t pass the HIV virus on to others.
“I’d moved back to Norwich in 2014 after living in London for a few years and was enjoying my more rural life again, eating healthily, going to the gym and losing weight. I thought I looked great – the weight that had clung to me for years was finally falling off me. I was so happy, but then the comments started with friends telling me I had lost too much weight, and I had a constant, persistent cold. As my boss put it “Alex, you are the sickliest fit person I know”.
“I was feeling run down and had a rash all over my body. After a failed trip to A&E, followed by a rather fruitless consultation with a confused nurse at my local walk in clinic, they really didn’t know what the problem was. So just to exhaust all the options, my doctor asked me to take an HIV test.
“Monday came and I was day one into my new job in the capital when I got a call. My test was positive. I had HIV. The first thought that crossed my mind was that I couldn’t have kids. I remember the feeling of my heart dropping and my mind spinning out of control. I just needed to get home, somewhere safe.
“A few days later I was booked into see a health advisor and start my new life as an HIV positive man. Popping out on my lunch break from my new job, I sat down for the routine meeting. What wasn’t routine was the doctor rushing me to A&E half way through my appointment. I had late stage HIV and was in a critical condition.
“After a very awkward call to my new boss explaining that I’d need an extended lunch break, because it was clear I wasn’t going anywhere for a while. Thankfully after receiving treatment and care at UCLH, I recovered and went straight on medication.
“When I first heard that being on effective treatment meant I couldn’t pass on HIV, it took a while to sink in. But it was a weight off my shoulders. Passing it on had been something I’d worried about and this responsibility I had to others. I never want anyone to go through what I went though. Going into a new relationship and negotiating safe sex can be quite nerve-racking and difficult, so knowing I can’t pass it on felt liberating and made me feel safe.
“If everyone in the world knew this message, that people on effective treatment can’t pass it on, we could stop the spread of HIV. If everyone knew this, got tested, got on treatment and became unable to pass on the virus, we would find ourselves in a situation where no one is contracting the virus, and we can stop HIV in our lifetime. It’s a little bit of a big deal.
“Sometimes it can be quite exhausting spending your life trying to educate people, and it takes it’s toll. Recently I was really run down and unfortunately I couldn’t go to a match, but my rugby team were amazing – it’s really important to have a safety net and support network around you.
“For me I think there are a few reasons why there is still stigma around HIV. First, there’s stigma where people feel pity for you. They still think of the tombstone ads when HIV meant death, so they think ‘oh poor you, you’re going to die’. And then you say, ‘no I’m not’, and explain what it’s like to have HIV today, and you’re healthy and well and can have relationships.
“But then there is the other side when people think you are a risk to them, and it becomes all about them. People don’t often realise how this can make you feel, and the effect it has on your self-esteem. Suddenly you’re there with someone who ten minutes before wanted to be intimate with you and then all of a sudden they don’t. They don’t think about you, they just think about them. And that can be quite tough.
“The ‘Can’t Pass It On’ campaign from Terrence Higgins Trust is really important because it could change my life, and the lives of those living with HIV. Because today the number one problem with living with HIV is the stigma. You hear about people who are too scared to get tested, because they’re scared of being told their HIV positive and the stigma that’s attached to it. People are then diagnosed far too late. Stigma can be a killer.
“Now I know my HIV status, it’s a weight off my shoulders because I am on treatment and undetectable so I can’t pass it on. I can have sex feeling good about myself, enjoy it and not freak out about HIV.”
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