World AIDS Day 2014: This is what HIV looks like

In a single moment, my life was irreversibly altered. The doctor’s reassurances washed over me in a haze: it was as if he was trying to communicate with me in a language I could not speak. There can be no single correct way to break this sort of news; in retrospect, I think his light-touch approach was misjudged.

At the time, I believed that I would be dead within a decade. Looking back, what I needed was information, a support line, and someone to dispel the grief that was drowning me. At the very least, an info leaflet to tell me that I was not at death’s door. The student-health clinic offered none of these. I left the consultation room consumed by denial but also confounded by a set of newly discovered contradictions.

The acute sensation of feeling absolutely alive and well, despite hearing news of having an incurable, life-threatening illness, was hard to swallow. In this darkened mood, I sobbed in the spring sunshine of a nearby park for what felt like hours. A friend texted to ask how the appointment had gone. I replied that the news was bad; I think he presumed the rest. We went to get coffee and talk. At first, I felt completely disconnected from the issue, as if we were talking about another person. This sense of detachment wore off as the day went on. Facing up to the reality, I couldn’t help but wonder if I would have to leave university, how my family would accept me, and whether I’d ever be able to pursue a relationship again.

I was diagnosed HIV-positive two years ago, aged 20, in my first year at university. I remember deciding to have a sexual-health screening in part to break the humdrum of exam revision and partly out of curiosity, having never had one before. When I went to the university health clinic, the nurse was surprised when I said that I wanted to be tested for HIV as well as the typical STIs treated in a college drop-in clinic, and asked me why. Giving the answer I thought she wanted to hear, I replied that it was because I am gay – an unnecessary justification considering that more than half of those diagnosed as being HIV positive in the UK last year were straight.

Three days later, I spent the morning swimming in a local pool. When I returned to the changing room, my phone showed that I had four missed calls. It rang again and I was called back to the student-health clinic. I was fast-tracked through the waiting room and the doctor broke the news.

Perhaps, above all, I felt cheated. I had recently turned 20, had never been promiscuous and had used condoms on all but one occasion. The cliché “how could this happen to me?” echoed for days in my mind. Thinking back, I realised that I must have caught HIV in Sydney during my gap year. I doubt that the transmitter knew he carried the virus, and I accept equal blame for letting it happen. It’s a fallacy that HIV is only spread through wild sexual behaviour. In my instance, it was a one-time, one-night stand in which neither of us happened to be carrying a condom.

Like many people who catch HIV, I had a symptomless “sero-conversion”. Zero-conversion is when the body’s immune system is first exposed to the virus and initially overwhelmed. I never developed flu or the cold sores that are often early symptoms, but I did experience intermittent night sweats that are often typical. Waking up at 4am covered in ice-cold sweat and having to towel the bed dry should have been an indication that something wasn’t right. But I had only just arrived in halls of residence and I think that the binge drinking and drugs somehow persuaded me that this was normal.

Over time, my feelings matured into anger. Not at the man from whom I’d contracted the virus, but at my school, and at the education it had – or in this case, hadn’t – provided me with. My experiences of sex education, in a state secondary school, involved a teacher putting a cricket bat between her legs and strapping a condom over the handle to the sounds of raucous laughter from the classroom. There was no advice for students who might have been gay, or curious about their sexuality, and certainly no mention of HIV.

Simply, the facts are that 6 per cent of gay and bisexual men now live with HIV in the UK. In London, this figure rises to 13 per cent – almost one in seven. I believe that knowing these statistics might have prevented not just my contraction of the virus but also its contration by countless others. What is the purpose of school if not to prepare its students for the problems raised by the outside world?

What about parents? Lessons about safe sex are probably best learnt from within the domestic sphere, However, this approach isn’t one that we should be depending on, especially in terms of homosexual and HIV education. Parents often simply don’t have the facts, or the wherewithal to seek them out, either.

In my case, I was outed to my family by my HIV diagnosis. Considering their ignorance of the condition – which was even greater than mine – I doubt the abilities of most families to be able to inform their children properly about the risks surrounding HIV. My parents’ generation lived through the public-health campaigns of the 1980s, which put tombstones on television screens and leaflets proclaiming “Don’t die of ignorance” through the nation’s letterboxes.

To them, HIV still meant a death sentence. The day after I was diagnosed, I came home to spend time with my family. I had broken the news over the phone the night before and was met with shock and confusion. My mum had answered and was unable to cope with hearing that her son was HIV-positive.

Taking the train journey home up North was the first and only time I broke down and cried. My parents met me off the platform, concerned, angry and panic stricken; over the next few days, we spoke little. Perhaps, they sensed I didn’t want to talk about it; silence was at first how we dealt with it as a family.

I was fundamentally unaware of the risks involved in having unsafe sex and my ignorance of HIV led me to believe that my prognosis was far graver than I now know to be the case. In the first few days, I was afraid to learn more for fear of what I might find. Slowly, I read more and with each article my knowledge and self-esteem grew. Currently, my white blood cell (CD4) count is around 750. I will be monitored and once this is down to 350, I will need to take anti-retroviral drugs every day for the rest of my life. I could have perhaps 10 drug-free years before that happens – or my CD4 count might plummet tomorrow.

Not knowing whether this will happen causes me anxiety: I want to be able to travel and see the world without the monotonous routine of medication. It would also be nice to not have to worry about laws in certain countries that prohibit entrance for HIV-positive people.

I have been shocked to see how these prejudices still resurface within our own country. “Quality people”, claimed Nigel Farage a few weeks ago, are “people who don’t have HIV, to be frank”. To suggest that HIV-positive people are poor quality is an insult to NHS workers, hairdressers, lawyers, waiters, students, and the many others living with this condition.

For me, taking up running has become my day-to-day way of coping with my situation and has been a huge part of my recovery. Three months after my diagnosis, I decided to run the London marathon for the Terrence Higgins Trust, the UK’s biggest HIV charity, and made my reasons for participation clear. At the time, only my immediate family and a very small circle of friends knew of my diagnosis. Not even all of my housemates knew. Increasingly, I felt that silence was tantamount to denial.

Even today, I find it extremely difficult to tell people face to face that I’m HIV-positive; the marathon opened up an essential channel of communication, because it is fundamentally a celebration of health and vitality. My biggest fear had always been that I’d be seen as ill, weak, or pitiable in some way. Running was a means of exorcising personal demons, while also dispelling the myth that HIV is inherently disabling.

The response in going public, however, was tremendous; rejection had petrified me but I was met only by acceptance and validation from family and friends. Running the marathon in 3hr 15min meant I was the charity’s youngest and fastest entrant. I was also its top fundraiser, raising more than £7,500. Next spring marks the second anniversary of my diagnosis; I am running the Brighton marathon again for the Terrence Higgins Trust with the aim of completing the 26 miles in less than three hours. My fundamental goal is to promote this condition in a public and positive light, and encourage others who live with it to embrace a more public stance. “You can sit on a park bench and talk for two hours with someone about your diabetes,” said Luke Alexander, a young and outspoken HIV-positive activist, recently. “But you can’t do that with HIV because you’ll often get a look of fear and shock.”

For a while now, I have publicly disclosed my status on gay social media, and, to my knowledge, am one of only a few dozen men in the country willing to do so. Despite the tens of thousands of gay men carrying the virus, staggeringly few embrace a completely public position when it comes to dating. The fear of rejection and stigma undoubtedly drives such reserve. That’s certainly understandable. Since disclosing my status, the response has been a mixture of intrigue, sympathy and, on rare occasions, aversion. In some cases, it has provided a way of reaching out to others who have also been recently diagnosed. Last week, I met someone who, like me, had just started university when he was diagnosed. The response to discovering that you are HIV-positive still, overwhelmingly, seems to be to shut down and brood in secrecy away from family and friends.

I have never wished to be defined by HIV, but I feel that writing about my experience of it is necessary in creating an atmosphere of greater transparency. The best place to start would be in creating an open dialogue in our schools, within the gay community itself. We live in a society that still finds HIV shameful. Unfortunately – and I say this from personal experience – this stigma lingers in the gay community, with some people either too scared to be tested, or wary that they will be rejected by the HIV-negative community.

The most important thing is to know your own status, which is why National HIV Testing Week is so important. World Aids Day allows us to commemorate the 36 million people across the world who have died because of this virus; it also highlights the urgent work that still needs to be done. Only through leading by example can we improve the lives of those living with HIV.

There are nearly 110,000 people living with HIV in the UK

Approximately 26,000 people living with HIV in the UK have not yet been diagnosed

More than one million HIV tests were performed in sexual health clinics in 2013

In 2013, 6,000 people were newly diagnosed with HIV in the UK

In 2013, 42 per cent of adults newly diagnosed HIV were diagnosed late, after they should have started treatment

In 2013 less than 1 per cent of people with HIV died

Around 1 in 17 men who have sex with men (MSM) living in the UK has HIV

Black African people make up 1.8 per cent of the UK population but 36% of all people living with HIV

In 2013 there were 2,449 black Caribbean people in the UK living with a diagnosed HIV and accessing HIV care

More information from National Aids Trust nat.org.uk