Lifestyle
HIV and Me
Dec
January 2010. I was in my second year of drama school in London, and finally felt like I was ‘living my best gay life,’ exploring both my sexuality and my passion for theatre. I’ve even managed to combine them in live sex shows, which leave me feeling liberated and empowered. HIV was far from my mind. Then one day I nearly collapse on the tube whilst on my way to meet a potential investor for a new show I was developing.
Worried, I tried to go to the NHS walk in centre in Soho, but the queue to be seen was so long, and the waiting room felt so warm and I felt really sick. I suddenly felt very small and very vulnerable, and all I wanted was to be back home in Bath with my mum. Managing to get on a train, I spent the next week or so lying on the sofa in a feverish state, my mum looking after me until I felt well enough to return to London and to my university studies. I thought no more of this little blip – some sort of seasonal flu, I guessed.
‘2010 happy’ – John in 2010
The News
Three months later in my bedroom in my first gay-flatshare in London and get a phone call. It’s the sexual health clinic in Bath. I made a habit of going to get tested when I was back home during the holidays. These phone calls I’d had before, where they ask you to come in to ‘discuss your results’ – code for ‘you’ve tested positive for something’. However, this time I am told my results over the phone: “you’ve tested positive for HIV and syphilis”. I still have never met anyone else who was told their results over the phone. Admittedly, if the nurse had asked me to come in, I would have explained I was in London and it wasn’t convenient. The nurse continued: “you need to be treated for syphilis, and have a second HIV test to confirm the first result”. Sometimes it’s possible you get a false positive result.
After the call ended, I went downstairs to where my flatmate was sitting in the living room. I told him what had happened. He gave me a hug. Looking back, I was in a state of shock. At the time, I thought I was being very grown up and taking it all in my stride.
Then I went to 56 Dean Street – London’s newest sexual health clinic in the heart of Soho, specially aimed at the LGBTQ+ community. I had never been before, but my flatmate had recommended it to me. When I walked through the door, where a man sat at the desk. I would have said something like this: “Hello, I’ve never been here before, but I’ve just had a phone call from my sexual health clinic in Bath and they’ve told me that I’m HIV positive but I need to have a second test to confirm the result, so I’ve come here to do that test”. I didn’t realise, but the guy is just a doorman, and he tells me to go to the first floor.
‘2010 out with friends’ – Out with friends and flatmates in London, 2010
It’s Really True!
I find a receptionist on the first floor and repeat my story. I’m starting to feel a little bit wobbly now, as now that I am in a clinic the reality of my situation is starting to kick in. They send me to the third floor, and I repeat my story again. This time they ask me to take a seat. A nurse calls my name name, and breezily takes me into one of the consultation rooms. She’s friendly but business like: “so where are you transferring from?”
I repeat my story for the fourth time, and maybe I’m more visibly holding back tears at this point. I just remember this image of her softening, from professional to compassionate human. There had been some miscommunication about why I was there, and she hadn’t realised that I was freshly diagnosed and needing help! From that moment on though I felt so completely looked after by all of the staff at 56 Dean Street. The nurse repeated the test, and it confirmed that I was HIV positive. I was given leaflets, I’m sure (I remember being given so many leaflets in those early days), and was booked in to see a doctor.
Telling People
So now I knew for sure that I was HIV positive (HIV+). I knew that my life was going to change, but I also knew that I would be alright, there was medication now, and plenty of HIV+ people living long lives. Although I did think that it would be the end of me dating or having sex with HIV negative people.
I saw one of my best friends, Naomi, and I told her. Then I took the train back to Bath to tell my mum. I remember when I came out to her, just a few years before, that she had warned me about HIV and AIDS. Telling my mum was about reassuring her that I would be alright. I showed her the leaflets. I explained to her that my mysterious illness in January was probably me seroconverting – when the virus makes you very sick before your immune system is able to fight back.
Next, I told a lot of other people too. Friends, neighbours, tutors, old work colleagues… I learnt later that this was a common reaction: whilst some people don’t tell anyone, others tell everyone as a coping mechanism. My mum encouraged me to maybe be a little more careful about who I told, to protect myself. So we didn’t tell my grandmother, for example.
‘RVTperformance’ – John (centre) performing at the Royal Vauxhall Tavern, January 2010
And Then There Was Robbie
The week before that fateful phone call, I had been on a first date with a guy I had fancied for a little while. We had already been talking about our second date, and had planned to go for a walk on Hampstead Heath in the sunshine. We were on a bench on the Heath, looking out over London, when I told him what had happened. I figured it wasn’t worth keeping it secret, that it was probably going to be a deal breaker, and I didn’t want to get attached to him only to be rejected later.
We ended up walking all across the Heath together, stopping for a drink in Highgate once it got dark. We got on the tube, and I invited him back to mine “not for sex, just for cuddles”. He declined. I wasn’t offended. I learnt later that he felt really guilty about this moment, he felt like he left me when I needed him. It wasn’t the last time I saw him though, despite all the apparent obstacles that my HIV diagnosis presented. In time he, Robbie, became my boyfriend.
Medicines and Taboos
Back in 2010 you didn’t go on medication straight away. You waited until your number of CD4 cells (white blood cells that fight infection) drop below 500. Being newly HIV+ I had a high CD4 count, and so didn’t expect to have to start medication for a long time. In my head, I could ‘forget’ that I was positive. I saw the doctor at Dean Street, and they did all sorts of blood tests to monitor my health, and be able to detect any changes that could be the sign of something going wrong. I was also able to get support from the Terrence Higgins Trust – I went to a group support session, for guys newly diagnosed, and later was able to access one-on-one therapy. These services were free, and offered alongside a range of alternative therapies too, such as massage and reiki.
Back in 2010 bareback sex (sex without condoms) was considered very taboo, and a high risk activity if you were HIV negative – but now that I was HIV+ it felt like I now had the freedom to enjoy bareback sex with other HIV+ guys. This lasted for about a month, until Robbie and I started our monogamous relationship.
More Bad News
During one of my visits to the doctor there was a significant change in one of my blood tests. It wasn’t good news, and after a few more tests it turned out that I had Hepatitis C (Hep C), and I was transferred from Dean Street to Kobler Clinic at Chelsea and Westminster Hospital – one of the original HIV/AIDS clinics opened by Princess Diana – to see the expert in HIV/Hep C co-infection. I knew that Hep C was bad news – it carried far more fear and stigma than HIV, and was a guaranteed end to your sex life. It was explained to me that a third of people would clear Hep C on their own, one third would clear it with medication, and one third would not clear it at all – and ultimately would probably die as a result.
A Difficult Journey and End of an Era
The treatment was hard, and I knew people reporting that the treatment caused all kinds of horrible side effects. It was scary, but I took the treatment. I took antidepressants to combat some of the psychological side effects. The weekly injections and daily pills weighed heavy on me – they were a constant reminder that I was sick, and sick because of my sexual behaviour. I stopped my uni studies for a year, as a result of the depression I was in. Hospital, I seemed to be going to the hospital all the time. I was lucky to have Robbie with me, but it put pressure on our relationship too. Despite his care for me, he was understandably worried for his own health, and it had a big impact on our sex life. We always used condoms, and I was always the bottom.
I was on treatment for a year. It was horrible, but worth it once I knew I had cleared Hep C. However the good news of clearing Hep C was soured by the news that, as a result of the Hep C, my CD4 count had dropped low enough for me to need to go on treatment for HIV.
Denial
I was sad and angry. I had believed I wouldn’t need medication for years to come. To me, being on medication meant I was fighting off AIDS, it meant that I was sick, it meant that years were being shaved off my life. I didn’t go back to my doctor for a year, because it took me that long to accept that I needed to go on treatment. The doctor was understanding, and put me on the medication known as Atripla – three drugs in one tablet, so I only had to take one tablet a day. In contrast to the Hep C medication it was easy, and taking one tablet before bed soon became an easy habit. The medication boosts my CD4 count and reduces my viral load (the amount of HIV in my blood) to a number so low that it is described as ‘undetectable’.
A couple of years later and my relationship with Robbie ended. I will always be so grateful to him for the love and care he showed me during some of the hardest years of my life, whilst managing his own fear of HIV. However, his fear also affected me, and I believed that there was still a lot to be ashamed about for being HIV+.
Promo photo for 56 Dean Street’s Time to Test campaign, April 2020.
My Cornish Pirate!
August 2016. After the most amazing daytime party in Bristol, I’ve gone home with the most handsome man, who looks like a Cornish pirate. We’re in his bed, we’ve been kissing and fumbling for ages, and I start to cry. I don’t feel comfortable having sex with him and not telling him that I am HIV+, but also I think that telling him now will ruin this moment. He asks me what’s wrong, and I tell him. “That doesn’t change anything,” he says.
Those words are printed on my soul for eternity. In the years since my diagnosis, knowledge about HIV has changed. PrEP has started to appear as a way for HIV negative people to protect themselves from HIV. Being HIV+ and undetectable is now understood to mean that you cannot transmit the virus either. I generally feel like any stigma and fear that I had experienced (and expected) has gone away. On Grindr I am open about my status. I am open about my status at work and don’t really think about it anymore. I take my medication, I go to my appointments and get my bloods checked. Exercise is part of my daily routine and I eat healthy. Despite my early fears, I am arguably in better health now then I was when I was diagnosed!
My Journey into Porn with Tim Tales
It’s 2018 and I start doing porn with Tim Tales. As part of my application I have disclosed my status. The scenes I film are a mix of bareback and with condoms. I’m sure I film with a mixture of HIV+ and HIV negative models, all of us are either on treatment and undetectable or on PrEP. My status isn’t really something I think about any more. I’m aware of one model who won’t film with me, but that says more to me about his ignorance, and it doesn’t make me feel bad about myself. I no longer feel any shame for being HIV+. After ten years, I’ve finally told my grandmother too.
‘Coming Out’ With HIV
I start to get loads of messages from fans about HIV and sexual health – and I realise that some people (from all different corners of the world) haven’t had good sex education. Next, I decide that it is important for me ‘to come out’ as HIV+, and to use my platform to raise awareness for sexual health, including working with 56 Dean Street on sexual health campaigns. I want to help people stay HIV negative, and I also want to help end stigma, shame and fear for people living with HIV. Although when I started porn I didn’t expect to become a spokesperson for HIV and sexual health, its a role I’m now more than happy to take on! If you’d like to hear more from me on HIV and sexual health, visit my Instagram profile @johneast87 and view my ‘HIV Q&A’ story highlight.
I also recommend visiting the Terrence Higgins Trust website, which is an excellent resource of information and services for people in the UK, including an advice helpline: www.tht.org.uk
And if you want to find out more about 56 Dean Street, visit www.dean.st
Lastly, if you are living with HIV and feeling worried, please remember that you are not alone. Support is available, and you have every reason to live a joyful and fulfilling life.
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