Alan’s Story.

My name is Alan and I live in Peacehaven in Sussex with my little dog Ruby who likes walking around a lot. You’ll probably hear her tap-tap on the floor. Like that, there she goes. I work for the Sussex Beacon, I’m an HIV Case Worker. I’m 64 years old and I’m doing the best job I’ve ever done in my life. I enjoy my work more than anything I’ve ever done. I’m passionate about supporting people living with HIV and would like to wave a magic wand and get rid of all the stigma around it. It really pisses me off, that 25,000 people have died in 40 years from HIV/AIDS in the UK, in forty years. 150,000 have died in one year from COVID and you can get COVID by being breathed on and yet, where’s all the stigma? So that’s, that’s… That’s me.

Home… Home means my house. But this is my… This is my final home and, erm, I bought this little house about… Actually, it was seven years ago this week I bought this house. When I bought it, it’s on the cliffs of Peacehaven, I think I’ve already said Peacehaven three times now, erm… It’s on the cliffs, it’s got fabulous views, it’s a, it’s a shitty little town really, there’s not much going for it. There’s hardly any shops, it’s all takeaways, but it’s just got these amazing vistas of the sea and the wind farm and the weather and the sun and the seagulls. And I was in a fortunate position a few years ago to cash in some money and I changed the house to my perfect home. So I live in my own dream home and this is my home and I feel safe and happy and content here, so, yeah, this is... My home is bricks-and-mortar and what makes it my real home are all the things I’ve accrued over the years. The story of my life that’s around me.

Okay. It’s a mess. It’s untidy but at the same time bits of it are actually pristine. So the front part of the house is a bit like an art gallery but there’s no mess, well not much. There’s virtually no mess in there. By mess I just mean books that aren’t on shelves they should be on. And it’s got art work that I absolutely love. And it’s got furniture that I adore, that I’ve collected. And… Right, I’ve lost the train of that, where I was going with that. What makes it home?

Okay. I think it’s… I’m a little bit of a collector so there are little groups of things around. There’s lot of African carvings at the moment and African figures which were probably bought as tourist mementoes by other people that went on their African adventures and now they live together with me. There’s, there’s pottery and china that appeals to me what’s… And actually looking at it what I’m realising is that everything is always grouped. There’s virtually never just one of something. So… I’ve got a collection of pottery from the Millennium Dome which was a short-lived thing but I really liked it so I’ve got lots of souvenirs from there. Books, but most of my books that I’ve kept are large format art books. I love looking at photographs, pictures of buildings. There is… Yeah, there’s a lot of stuff here, isn’t there? There really is a lot of stuff but it is on bookshelves and stuff. I wouldn’t say there’s any smells actually. In fact, I go to the, I try to go to opposite end of the smell thing by not having any smells in the house and that’s partly from having dogs for so many years. I was always conscious that if you go into somebody’s houses and it smells doggy how horrible it is, so, usually the doors are open and – there’s only one dog now – but the dogs could always go in and out, there’s always plenty of fresh air. And light, actually. Light’s quite important to me, as well. So, this room that we’re in, it’s got a – sounds posh – but it’s got an atrium which just lets the whole room flood with light and enough such that citrus trees grow here, but just one or two, not a farm. It’s full of, erm… I was going to say it’s full of memories, but… Yeah, er. Crikey, actually there’s quite a lot looking at it now, because each thing, every thing has it’s own little story to tell. Some of them, they’re not very important. They probably could go. But every now and then I look at something… I’ve got a very strange giraffe that’s dressed up like a drag queen and that tells a story of London, of Spitalfields actually. Of afternoons spent in the… I don’t know if it’s there anymore, there used to be almost like a flea market in Spitalfields market and all these people with the really, really weird creative design ideas would sell their stuff there and that reminds me of that time. That could last forever, talking about everything that’s in here, but I’m only really looking at one room. I like my pictures. I like pictures quite a lot. And I like being able to sit down. I’ve got a ridiculous amount of chairs and sofas for such a small house, it’s madness. And I nearly always only sit in one chair and that’s the one in front of my computer. So really home is, I suppose I could say, home is my sort of my chair in front of my PC screen, which I use as a television as well.

So, diagnosis was in 2003. I would actually say, prior to 2003, my life was pretty superficial. I don’t think there was much in my life that had meaning at all. I had a difficult upbringing. It wasn’t unkind, it was just difficult. And from a very early age, as far back as I can remember, I had social anxiety and I didn’t know what it was, at the time. And I was very lacking in self-confidence but everyone thought I was very confident but I wasn’t. And I sort of breezed through life, never really taking anything seriously. Relationships didn’t always mean much to me. I’m not sure what I aspired to, prior to that time. But when the diagnosis came, that was like a bolt from the blue. And I told my partner. We both cried. I told him if he was going to leave me, now would be a good time, but he waited eleven years. And then after diagnosis, I probably then spent… I can only describe the next ten years as almost like I went into hiding. I wasn’t completely in hiding, but didn’t go out anymore, didn’t see that many people. Didn’t tell anybody. Didn’t tell anybody at all. So... I think my home was, was a place of safety. It’s not this home I’m in now, it was another place. It was the previous house I lived in. And it’s kind of interesting because eventually it became a prison. I’m not really sure why my relationship broke down entirely, but it did and it took three years to die. And in those three years my partner and I drifted further and further apart and I felt more and more trapped in what was supposed to be my home. That’s why I say it was like a prison. And eventually, seven years ago, I got out of that and… I really had to fight my way out of that, as well. Do you know, somebody said to me just the other day about the house, a really old friend who lives near where I used to live and he said: “I go past your old house quite a lot.” I said: “I’ve never been past it, I’ve never gone down that road. Even though it’s a main road, I’ve never gone past that house.” And I don’t know if I ever will. I’ve looked at it on street view, Google Maps, to see what they’re doing with it. But I have no desire to see it again because I have really bad memories of what… That was supposed to be my home and therefore my place of safety and it wasn’t. But now I’m here, and I’ve done this on my own, okay? I’ve done this on my own after diagnosis, reassessing my life, reassessing what’s important to me and what’s not important to me…

Let me think. I’m trying to think where I actually lived when I was diagnosed. If that was in 2003, so that was eighteen years ago… 12, 6… I think I didn’t live in that house, that last house, at the point of diagnosis. I can’t remember where we did live. Actually, no, we did live somewhere else because when we moved to the last house where we ultimately broke up. At one point we were thinking of moving out to the country. Which of course is isolation and avoidance of people and living a life where you don’t have to communicate with anybody. So, yeah, I was doing that thing that… I’d say I probably see it in my clients, as well, that they build what they think are their castles but what we’re building is a prison. And it isn’t like that anymore, I’ve broken free from that. And some of that has to do with being open, public, about my diagnosis. And finally giving my HIV a voice of its own. And a persona of its own. So things, yeah, it changed a hell of a lot but I’m happy where it is now.

For myself, I suppose now it’s been the making of me. Finally, because of the work I do now. Well, it’s given me a career actually. This is all like twisting around to it, but, so, positive reaction from me is that it’s given me a career. So, I’m an HIV Case Worker, I work with people living with HIV who, for one reason or another, are struggling. And they’ve hit the wall. I think we all hit the wall at some point. It took me nearly ten years to hit my wall. So HIV’s given me a career in later life, so that’s a pretty major gift. In my work every day is different. In my work I see people who are unhappy and I do what I can to help them support themselves to a better place. It’s unbelievably rewarding. I’m learning all the time, so HIV’s given me a career. And not just a… It’s not a medical career, it’s a real career. It’s a job and a lifestyle almost, so I own my HIV now, it doesn’t own me. I’ve learnt so much about living with HIV the different ways it has, the different effects it has on different people and I’m able to draw on my experience perhaps to help other people but also draw on their experience to help me. But it took a long time. So eighteen years, about eighteen years positive, certainly the first ten were miserable. And so HIV stole that time from me. But… I sometimes, I sometimes look back – not in great detail – but I look back on lifestyle changes that I’ve made because I live with HIV. So I stopped smoking a long time ago. I never really drank a lot, but I drink a lot less. I’ve become vegetarian. I don’t eat processed food. I think there’s a pretty strong chance that if I hadn’t become HIV-positive I would have been dead by now. Probably from a heart attack. Commuting to work in London, smoking, drinking, not exercising. I certainly would have been quite a bit larger than I am. So it’s weird… I’ve never thought about it this way actually. So, am I saying that HIV saved my life? I suppose, am I? It certainly saved my later life. I mean, I feel for my age, I feel incredibly fit and healthy and I wake up most days looking forward to the day. Yeah, it’s not bad at all actually… Yeah, it’s okay. I’m happy with it. And I’ve been on the television. Three times! So there.

But yeah… It’s given me opportunities. I’ve met people. ‘I’ve met people’: that sounds a bit religious doesn’t it? I’ve met people I would never… I’ve been to the House of Lords, I’ve been to the House of Commons. I was going to say I’ve met Peter Tatchell but I’d actually already met him. I’ve been in a room with two African presidents, several lords from the House of Lords and umpteen MPs and, like, been part of it. Yeah, it’s weird. So, I suppose… Yeah. It’s okay. Yeah, it’s alright.

So… I’m not one for generalising, or am I? Maybe I am, but I don’t like generalising so when you hear things like ‘oh, gay men are so vile about HIV,’ that’s not really fair because not all gay men are vile about HIV but some of them are. But some of them are really good about it. If you’re… If you’re HIV-positive, it’s a frightening thing to have to tell somebody else. If you haven’t done it before it’s a little bit frightening to know when you should, if you should. And then the tough bit is rejection. And it’s happened to me. I’m sure it’s happened to most people that are HIV-positive, to get rejection from your peers. That’s really harsh and it’s always through ignorance. That’s… So there’s the actual rejection but probably bigger than that is the fear of rejection and I think that goes hand-in-hand with the stigma, that we talk about the stigma around HIV. But I’ve always believed that the biggest part of stigma is self-stigma. It’s what we think people will say, how we think people will react. So we’re stigmatising ourselves. And I think we have a tendency to continue that stigma without realising it. I’ll tell you this briefly. Recently, I had a friend who was positive and a partner who was negative and they kept it to themselves for a long, long time. And then one day the positive partner just told people. And the negative partner was a bit upset because he felt that they should have talked about it, first, before the telling of anybody and should have prepared the parents for it. And I said: “I think you’re wrong. It’s not your secret to tell, it’s his. It’s his. And if you really think you have to prepare parents for this kind of information…” Imagine instead of HIV it was lung cancer? You don’t phone up your parents and go: “Do you know what lung cancer is? Do you know what it means when you get like, the things, the tumours that form in your lungs and how they spread? Do you know how that can happen now that I’ve got lung cancer?” Know you don’t. You say: “I’ve got lung cancer.” And they go and do the research on their own. They go and find out or they ask you. But why if you’re living with HIV do you have to clear that pathway of ease, to tell people? To prepare them for it. And to let them know that this is the medication we take and we can’t pass the virus on. No. Fuck that. They can find that out for themselves, like they would any other illness.

Yes. And that is the bit that continues the cycle of stigma. So they, so they didn’t realise, well he didn’t realise, the negative one, this one that I was chatting to, he didn’t… I could see it in his face it made him stop and think. You’re creating the stigma by, yeah, by that. I said: “I understand, but also understand it’s not your secret. It shouldn’t be a secret.” I said, to them I said: “One thing I will give you credit for, you didn’t say ‘disclosure’.” So that was, yeah… It is interesting. So that’s the negatives, most of them are going to be history. It’s the history of HIV, it’s the history of the… Even people that weren’t alive at the time know about the crashing tombstones, the things the police said, the Sun, all that stuff, it’s… That’s the negative side of it: misinformation. Really.

I felt I would be excluded if they knew. So… But then that’s me self-stigmatising again, so yeah… And that’s… and it would have been spaces like family spaces actually. And again, maybe working in this business you hear too many stories where, you know, it’s not uncommon for somebody to… Yes. And most of it is self-imposed, the exclusion. I wouldn’t, I wouldn’t… I mean I stopped going to bars which I used to enjoy. I didn’t want fingers pointing and, you know, tongues wagging. So I sort of imposed that on myself and family space… I still haven’t told all of my family. But I have a pretty difficult family anyway, but some of them know, some of them don’t, I don’t really care… I don’t care anymore. But that’s a place I’ve got to. The journey to that is quite difficult. And it’s not unusual to hear that when people are diagnosed that ‘I can’t tell my family, they’ll kill me.’ That’s a direct quote from somebody that I spoke to last week. “I can’t tell my family. They will kill me.” I mean, that’s… That’s so sad. I mean what worse kind of exclusion is there than that? So, yeah. And it’s, it’s actually the same exclusion that people, well, I suppose my generation, about being gay. You know, you tell your Mum, “Mum, I’m gay.” “Don’t tell your father, it’ll kill him.” Well that’s bullshit, it’s absolute bullshit. But at that time when you think that you believe it. You believe that, so, yeah, that’s the kind of exclusion I would feel. I would never, I’ve never experienced real exclusion from healthcare. And a very small example - well it wasn’t exclusion – a surgeon once talked to me before I had an operation, a consultation, and when I left the room the nurse came running after me and said: “Oh, he wants to speak to you again.” And he didn’t look at me, he was just looking down at his notes and said: “Oh, I see you’re suffering from HIV.” I just wanted to punch him in the face. But I didn’t. At that time I didn’t have the confidence. I do now. I mean, if somebody says something like that to me now, it would be quite, I’d probably be quite… I’d probably just laugh at them. But again, I haven’t, that’s about it for me. I haven’t experienced any exclusion as such. Yeah. I’ve been lucky.

My diagnosis came out of the blue. I wasn’t expecting it. I, I had a rash and I thought I’m gonna get told I have something like NSU or something like that and I really wasn’t expecting it to be HIV. And, so I had to tell my partner. And it was really difficult. And even though there was a short window between that test and the previous one, it was only a few months, I can’t, I still can’t – and I don’t anymore – I can’t work out how it happened. I really can’t work out how it happened and that’s not denial, I just can’t. But he really questioned me. We hadn’t been together that long and there was a lot of, like, quite difficult questioning about had I been honest about, whatever it was what I’d got up to. Obviously, I got up to something. And I can understand in retrospect, I mean, you know, eighteen years ago we didn’t have quite the same knowledge that we have now. Even though it wasn’t a death sentence, even then, it was still a pretty nasty diagnosis. So there was probably a really difficult rocky road ahead which there hasn’t been. But that was how it seemed at the time, so he was probably quite frightened as well. Which is fair enough. I think I said earlier that when I told him I also said: “If you are going to leave, leave now, don’t...” But I don’t think the HIV played a major part in our relationship. The really really really annoying thing though was it did mess up our sex life, big time. Because we had to use condoms. But if we’d known then what we know now, we didn’t have to. And that’s, that’s a huge disappointment to me. But, yeah… We just didn’t know. Nobody really knew. So it affected, so it affected our sex life. Always, a bit. But it wasn’t the cause of… I don’t. Hm. Okay I was about to say it wasn’t the cause of our break-up but actually it probably was but not from his side. I was reacting, so I was the one withdrawing. ‘Cause I remember telling one of my best friends, when we were breaking up, I said: “He’s changed.” And she just said to me: “He hasn’t changed at all, you have.” Just like that. Oh yeah, it is me. I’ve changed. So, yeah. It was my living with HIV and how I dealt with it that caused the difficulties, not his. He was always the.. ooh, that’s made me think a bit. Probably didn’t give him the right amount of credit for that actually. He’s got his own life, he’s got his own issues. It was a terrible break-up but we did become friendly again afterwards but we’ve drifted apart again now and that’s, that’s it. You know. But that’s okay. And I don’t mean that badly. Somebody once said to me that people come into your life, they serve a purpose and then they drift away. And that’s the natural order, you know. You can’t hold on to everybody that you pass in your life. You know as long as the parting ends on good terms and that’s fine. Maybe you’ll meet up again one day, but I don’t worry about that kind of thing any more. But yes, HIV did affect my personal life and my life. Yeah, and it was… Yeah, it did. In a big way. In a bigger way than I’d really thought about, but ultimately it’s good, ultimately it’s fine, it’s not… Do I sound like I’m trying to convince myself? Because I’m not. It’s fine.

I’ve never been part of any community. I might belong to different communities but I’m not really a part of any of them. But I’ve always been like that. I’ve always, always been on the outside looking in or on the edge. Even in my life when I’ve got involved with a group or a society, my lifelong battle with social anxiety has prevented me from really enjoying it. So… let me think again. No. If I was part of a community I would be the person in the kitchen making the cakes or the person on the door taking the tickets. Or I might even be on the stage announcing whoever’s won the whatever competition. But am I actually one of the ones down there in the party joining in? No. I never have been. I’m always on the outside. But that’s nothing to do with HIV, that’s just me.

This is my safe space, my home is my safe space. My home, my garden, my dog. My bitch is the keeper of all my secrets. Yeah, this is my safe space.

So, I’m definitely… Yeah. Okay, so I’m brash, I’m loud. I’m colourful. I’m noisy. I want to make people laugh. I want people to feel at ease but at the same time I’m petrified, most of the time. I want to do things but I can’t. The pandemic has been amazing for me because nobody can do that. So all of the busy public spaces have been closed down and without wishing to sound unkind on people that’ve been deprived of that, it’s actually made my life an awful lot easier because I’m not in social situations that I find awkward. I’m not going to… I’m not going to an event where I have to mingle with people because I can’t do it. I don’t know what to say, I feel awkward and I’m uncomfortable and embarrassed and I feel that everything that I say is the most stupid thing anybody’s ever heard. But at the same time I know that when I tell people that’s how I feel they’re shocked, that I have this mask, this mask of being the joker. The jolly joker. It’s kind of weird how you deal with it. I think I’m lucky it’s not... I think I’m lucky it’s not depression. It’s only social anxiety because with social anxiety I can’t easily go to a new place on my own. And… But I can choose not to go. And that’s it. So I choose not to go and I don’t go. I’m not anxious and that’s fine. If I, if I do go then I pretty much know what’s going to happen. I pretty much know that within an hour I’m going to be sneaking out the side-door going home, hoping nobody saw me leave and never actually saying I left early because people don’t notice. That’s the other thing you learn when you slip out of places. People don’t notice you’re not there anymore. If they’ve seen you, that’s enough. They don’t need to see you every minute of the four hours whatever. They just need to see you once and they’ll know you were there. And so I’ve used that, so...

I have a burning sense of justice. It’s what drives me, is justice. I can’t sit by and watch somebody being treated badly. I’m sure I’ve… I’m sure, I know I’ve treated people badly myself. I judge myself probably quite harshly, but I just can’t stand injustice. It drives me crazy. So, if I’m, if I’m your friend, if we maintain – I’m gonna say ‘we’ – maintain loyalty I will be your friend for life and I will give you whatever I’ve got to keep you going but don’t – it’s typical Scorpio – but don’t, don’t fuck me over, ‘cause there’ll be. It’s not going to be violent, but it’ll be swift. You will know that you’ve done wrong because that’s when, yeah… So I’ve got this burning sense of… It’s probably more a sense of injustice rather than justice. And I’m also someone that can’t stand trivia. It drives me mad. I think I’m kind. No, I am kind. I come across as, I think I come across as… You see, I’m doubting myself now. Big, I’m very big. Really big. And I learnt quite late in life that I can be imposing and scary. But I think it’s got me into trouble, without realising it, without… I’m not aware of my size. I know I said I was big but I’m not aware on how that impacts on people. But the way for me to realise it is when I occasionally – but not very often – come across somebody bigger than me how that makes me feel. I love it, actually. I love being in the presence of people who are much taller than me. Doesn’t happen very often but I really really like it. And, and I recognise in some of my friends that are really much smaller than me how comforting it can be to be in the presence of someone who wants to, who is protective and wants to be protective. I am protective, I am very protective. But that’s enough about me.

What can I add? Yeah, so. If… if people really want to end HIV transmission by 2030 or whatever they may have set, there’s a huge amount of information, useful information techniques, that have come out of the COVID-19 pandemic and it’s actually something that I was talking about last week and it’s to do with sexual health, as well. Firstly, I do not like the way that sexual health is tied-in with HIV. I object to it, because… Well, I just don’t see why it’s necessary. I don’t see why I have to go to a GU clinic to get my HIV treatment. And if I live to be 75 or 80 I do not want to have to be going to the local clap-clinic to have my six-month or yearly blood test done in a room full of people that are gonna… If they see me are going to see me as a dirty old man, 80, 80 years old in the clap-clinic. I mean, really? It’s just… I know it’s perception again and it’s self-stigmatising about age this time but I don’t see why I should have to, I just feel that, so I would divorce those. So firstly I would like that to be noted. But I would also thoroughly recommend a reinvestigation of self-testing. I test so regularly for COVID-19, I think I’ve done 58 tests. Yeah. So I do the ones for work, I do the ONS one, I do the Government ones they send out. Maybe I’m a bit weird okay but it’s like an exercise for me to work out. And also it’s… I needed to be able to do the throat swab. I couldn’t do it at first. So I actually practised doing the throat swab and I’m getting quite good at it. But… I don’t see why they – the sexual health clinics – aren’t sending out the equivalent of a lateral flow test to people looking for chlamydia, gonorrhoea, syphilis. They already do it for HIV. There are several HIV self-test kits you can get. You can get the result at home. Why don’t they do that for chlamydia and gonorrhoea and syphilis? Why not? Because you’ve got this whole thing about sexual health and it’s… People are embarrassed. Whatever other people may say, I’m not embarrassed. Most people are embarrassed by it. So, we do this testing, we’re testing for this thing that’s killed 150,000 people in a year in this country and everybody’s got these test kits. You can test as often as you like. Let’s take that, put it in the HIV world, put it in the sexual health world but no… I know I just said treatment split sexual health and HIV but from the point of diagnosis, let’s weld them together, really really tightly. So, encourage people to test at home. Make it normal. Make it normal, make it frequent and then – only then, perhaps – will we actually start to nail all the new diagnoses as they appear and pick up the seven or eight-thousand undiagnosed. But that has to be, you know… Is it that difficult? I forget, is it like 190million COVID tests we’ve done in this country in a year. Let’s do a few HIV tests. It’s never been picked up. I know it’s probably not… I don’t know if it’s part of your project or not but it’s something I feel quite strongly about, is ‘is there an opportunity missed?’ And we’re not going to get this chance again. There might still be a little bit of time left that, whoever the powers-may-be, whoever they are could pick this up and run with it. But… They probably won’t. But it could change everything. This whole thing about testing at home now. It’s so accepted. Give… Yes, send them out. And in every box of COVID test let’s stick an HIV test in there as well. And in fact maybe start with the easy ones. Start with chlamydia, start with gonorrhoea. Just getting people testing, getting the result at home. Why… what don’t they trust that we won’t do? Doesn’t make sense. Erm. So, I think that was it. I don’t think there’s anything else… No, that’s it.

So, after we finished our chat yesterday and I was looking around for the images that represent what my home is, what represents home, and I realised that I’d chosen lots of pictures that were of me. And there were hats, there were masks and there were lots of strange things that I’d done and I had to select just a few. And when I was doing it I realised that they’re not really pictures of my home where I live, they’re pictures of me and then it occurred to me that that’s quite significant because that means my home is me. I am my home and this house that I live in that I’ve created is… it’s where I’ve chosen to store me and my home. Everything about this house is me. That’s why it’s a bit strange in places because I can be very strange. And I’ve reached a point in my life where I allow myself to be me and I’m happy about that. And I’m happy with who I am. I’m happy with where I am. I am at home and that’s... So, I am home. Hadn’t really thought about that before. Yeah, I am home. Wherever I go… That’s dangerously sounding like a line from a song, isn’t it? But… I’m at home with myself. I do sound a bit like I’m waffling again, I think I keep saying that as well. Anyway, I just wanted to put this on tape for you that, yes, home means me and it means that because I’m happy. I’m reconciled with who I am, I’m reconciled with my life with HIV. I acknowledge the advantages and benefits that I have acquired in my later life because I’m HIV-positive and I’ve overcome the difficulties. And I’m happy and that’s good. Anyway, thank you again: that’s it.