HEROES IN VULNERABILITY

JAMES

I was diagnosed about three years ago in the clinic in Dean Street and it was just two days after my parents’ golden wedding anniversary. I had a weird response. It was shock but then it wasn’t shock, it was kinda like “Well that’s it you’re fucked now.” I laughed a lot - I use my humour as a shield a lot of the time. I didn’t cry - it was just like an out-of-body experience. It was weird, just weird. They asked me if there was anyone I could tell that could be with me. I guess there were so many people in my life that I could have been with who were there for me, but in that moment every gay shaming anxiety of my childhood about being gay and about HIV just flooded in. So I told them yes but in my head I was like “No, No, No.” 

A lot of it was because I didn’t want to hurt anyone - I didn’t want anyone else to have to deal with it. I didn’t want the shame. I didn’t want to tell my parents who were very Christian. I just felt like “I’ve now just gone and ticked every box. I just had the whole lot now, I couldn’t fail any more than that.” I just felt numb in the middle of London so I just got drunk and drunk.

 

Walking out of the clinic, you just feel like you’ve got a big neon sign on you, you feel like everybody knows. You feel like everyone is looking at you, but you try and be fine. People ask you how are you and you say you’re fine - everything is fine, but in your head you’re like “Oh God I have HIV, I’m not fine” but you just keep saying you’re fine, but there’s only so long you can do that. I thought “Don’t tell anyone just wait ten years, there will be a cure in ten years, so I can hold this in for ten years.” Obviously that didn’t work (laughs) - that didn’t work at all. I started to drink more and take harder drugs. I was just cracked - like a mug. If a mug is cracked you can either mend that mug or you can just smash it and throw it away so I just went on the smash it route.

Dean Street was really good. They do a lot of good work but for some reason I didn’t click with the person who gave my diagnosis. I felt out of control, totally lost on my own. It was affecting work and what I was doing. In my sex life I was doing more risky stuff that I wouldn’t normally have done and it was all to do with just feeling totally worthless. One of the things I remember feeling was the cost of the medication. I felt like I wasn’t worthy of the money. I felt like the NHS was wasting money on the cost of the medication that would keep me alive. In my mind I was a fucking waste of money.

 

It took about three years of me not telling people and only telling people when I was hammered. It would come out at the worst times. It came out at my friend’s brother’s wedding; on nights out when I was drunk… coming out was bad enough, but having HIV is like having to come out again.  A dear friend of mine I didn’t want to tell because I was going to be her head brides-man at her wedding, and I didn’t want to overshadow her wedding in any way, so I didn’t say anything. But the long story short is everyone I told was mainly just concerned about me, my health and whether I was happy. I made them feel bad by trying to keep them safe and not making them feel anything. My attempt at keeping them safe by keeping it to myself made them feel bad, because they wanted to be there. So yeah, when Dean Street said “Is there anyone who can be there and who you can call?” Yes there was a huge line of people who would have wanted to be there. But unfortunately my perception of HIV growing up in the 80’s, coming from a Christian background, feeling shame from being gay, I just wanted to deal with it all by myself.

 

My family was another kettle of fish all together, so they only found out about my diagnosis last year. I went to therapy provided by Dean Street. Things seemed to get better, but then I’d go away and things got worse again - there was all this up 

and down, and I think as a gay man at a certain age you just feel like you don’t deserve to be happy. So whenever things seemed to be going really well there was just this feeling that I was going to fuck it all up, and then I would go out drinking and it became clear in therapy that I had to sort out my drinking. I stopped going to therapy. It was then, this time last year that I was in Panto. I then had a few days off, which is always bad for me because I feel if I don’t have to work tomorrow I can go out and have a few drinks - and anyway - that few drinks just turned into a week, literally a full week of just caning it in every possible way which ended me up in hospital. So I was in hospital - there was a lot of hideousness around that, and it meant my parents found out. It was my lowest moment - like a psychotic break really. In the hospital I had my HIV medication with me. in the waiting room there were floods of tears, my parents were waiting for the doctor - in my trouser pockets were a bunch of tissues and the HIV medication, so they found the medication. My dad thought it was antidepressants because he thought I must have been depressed obviously because the state I was in, but thanks to Google he found out that they were antiretrovirals and that’s how I came out as HIV positive in the hospital coming down from a ridiculous drug binge - which was uncomfortable for everyone involved - for my parents, for me, my family, but it was sort of what I needed – to be that rock bottom, so it ended up good (laughter) so it’s been good. 

 

It’s still weird. My parents are very much of an age - they’re very middle class. They’re church going Daily Mail readers. They love me dearly even though I was convinced they didn’t. I’m a middle child so with that comes middle child syndrome. So now my family knows I’m HIV positive - we don’t talk about it but it’s out and that is the good thing. The thing with my family is if you walked into my parents’ house you would need a stepladder to get over the carpet because everything has been swept underneath it. That’s how I feel about my parents’ house.

Empathy isn’t really their thing. When I wanted to talk about my feelings around HIV - how I felt about how I thought they felt - when I wanted to talk about what it was like growing up gay, their response was “No it wasn’t like that - no my parents didn’t do that.” It was just “No, No, No.” And my mum meant “No, No, No,” in a caring loving way, to show it wasn’t like that - so I could understand that things were better. She couldn’t see or understand that for me it WAS like that. It was my experience, my growing up and my take on the world. The fact is there is no one truth. There’s only true experience. What I experienced was different to what my brother and sister experienced, even though we were around the same age, same family, same school, same upbringing - our lives were completely different and my mother can’t see that. We’re all so much better now, but the HIV, the being gay, it’s just not spoken about. The idea that my parents thought I was happy - how can I be happy?, I’m a man in my mid 40’s, they’ve never met a boyfriend, they’ve never asked about relationships - you know, I need love. I need someone. If I was straight we’d be talking about marriage. I mean - when I told my parents I was gay, my mum was like “Well we don’t believe in gay marriage” like its Santa or something - like it’s something that doesn’t actually exist. So it’s like “What do you mean you don’t believe in it? It’s a thing.” So that’s weird, my family is weird.

 

Physically and mentally, health-wise and mental health-wise, I’m in a totally different place than I was last year - that was rock bottom. I scraped the bottom long enough - quite literally and now it’s very different. That’s sort of my relationship with HIV (laughter) So what I’ve learned is to take responsibility. With HIV it can own you or you can own it, and “Fuck you if you don’t like the fact I have HIV because I have, I have! I can’t get rid of the bloody thing” (laughter). So that’s why I’m doing this project, the more people know in a good positive way the better. If you don’t like it - it’s your fault.

HOW DO WE GET RID OF THE STIGMA?

Best way to get rid of the stigma is to know people who have HIV - make it normal and make it visible. The stigma is so ingrained in the world’s psyche. But the reality is HIV isn’t now what it used to be – it’s not like in the 80’s, it’s not a death sentence. I remember the terrible adverts, they were devastating - the fear they would put into people. But now the reality of living with HIV - I mean it’s different for different people. Different people have different reactions to the different drugs that are available. For me as it stands, I take one tablet a day for my HIV - just one, and I’m very lucky because I’ve had no side effects. My status is undetectable, which is difficult to explain to friends. All my friends in London - it was completely fine in the London bubble. All my friends here are in the arts, all quite liberal, but back home my friends are not in the arts, they’re just… I mean they asked questions like “Are you going to die of AIDS?” Their questions were very much still in the 80’s or stuck in the 90’s, because education hasn’t moved on. They didn’t know that with HIV you can be, like me, undetectable - which means you can’t find the bloody virus! You can’t pass it on! You get checks every 6 months, so in a sense you’re more looked after health-wise than you would be otherwise. They look at your liver function, your kidney function, everything. So if something completely unrelated came up they’d be more likely to find it than with someone else, so that’s good. And I love my doctor, he’s told me that although a cure is still far off, we’re looking at the prospects of an injection twice a year and that’s it. An injection twice a year, I mean that’s nothing!

 

I remember when I first got diagnosed. I thought I’d rather have cancer, because you can tell people about cancer. People like cancer. If you’re going to get a disease get cancer because people will feel sorry for you. They’ll jump out of aeroplanes – It’s like “Hurray, heroic fights against cancer!” I wished I had cancer which is the most awful thing to say, because it’s horrible. But in reality living with HIV today in the UK, you’re worse off having diabetes. I mean that’s much worse, they’re constantly going blind, worrying about going blind, it’s awful.

 

It would be lovely though if everyone and the government could just stop caring about shit like possessions and money and fake vacuous status. People seem to know the price of everything and the value of nothing. What you drive and where you live is so irrelevant. What you need is love - people that love and support you and lift you up. The world is moving forward but it’s easy to be dragged back. Stop beating ourselves up - stop beating each other up, just cut everyone some slack.

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