The title of this recording is "Sophie Jayawardene profile". It is described as: Sophie Jayawardene talks about being diagnosed HIV+ in 1989, her journey with HIV and living positively. It was recorded in Wellington, Aotearoa New Zealand on the 17th April 2014. Sophie Jayawardene is being interviewed by Gareth Watkins.  Their names are spelt correctly but may appear incorrectly spelt later in the document. The duration of the recording is 45 minutes. A list of correctly spelt content keywords and tags can be found at the end of this document. A brief description of the recording is: In this podcast Sophie talks about being diagnosed HIV+ in 1989, her journey with HIV and living positively. The content in the recording covers the 1980s decade. A brief summary of the recording is: This abstract provides a condensed summary of the interview conducted with Sophie Jayawardene by Gareth Watkins, recorded on April 17, 2014, in Wellington, Aotearoa New Zealand, which lasted for 45 minutes. The interview begins with Sophie Jayawardene narrating their personal journey after arriving in New Zealand from Zimbabwe in 1988. During a six-months pregnancy with twins, they were diagnosed HIV positive in 1989, a discovery that marked the start of a challenging period in their life. The interviewee describes being the first individual in New Zealand to be diagnosed with HIV, leading to a difficult decision to terminate the pregnancy in Australia due to the lack of treatment options and significant stigma at the time. The narrative captures the fear and isolation experienced by Jayawardene, not only from society but also from medical professionals who were reluctant to offer care due to the virus. Despite the adversities faced, including a misdiagnosis of liver cancer, the subject recounts their continued fight for survival, their determination to lead a normal life, and the transformation from living in secrecy to being open about their HIV status. The journey also touches upon the impact of the diagnosis on their children and the eventual decision to share the truth with them after many years of secrecy. Jayawardene also expresses disappointment over the lack of follow-up and support from the medical community over a 14-year span. The interview highlights Jayawardene's resilience, as they utilized writing and constructive activities like exercise to cope with their emotions and improve their quality of life. They recollect the process of writing a journal intended for their children, which later transformed into a book project that faced initial rejection from local publishers due to the subject matter. Despite these setbacks, Jayawardene successfully self-published their book in the United States, titled "Sophie’s World: Journey of the Lost Soul." As the conversation progresses, the narrative shifts to detail Jayawardene's endeavors to normalize discussions about HIV, engage in activism to fight stigma, and promote education about the virus and safe lifestyle choices. Their experiences reflect both internal challenges, such as grappling with stigma and self-isolation, and external challenges, including societal prejudice and the lack of systemic support. Jayawardene passionately advocates for more active community engagement and openness about HIV in New Zealand, critiquing the current approach and calling for substantial changes in attitudes towards those living with HIV. They underscore the importance of emotional support and social contact for the well-being of individuals with HIV, suggesting that greater societal acceptance and destigmatization can aid in better management of the virus. The full transcription of the recording begins:  My background is I am Zimbabwean, uh, from the southern of Africa. I came to New Zealand in 1989 with my two Children. My husband, uh, as teachers and in nine, we came in 1988 in 1989. I was pregnant, Um, at six months pregnant, um, caring twins and, uh, during, uh, pro a procedure. I found out that I was HIV positive, and, uh, there was nothing to be done from that moment. We we I was sent to Australia to terminate the babies, and, um so I did come back to New Zealand, and that was the beginning of my horror life, I should say. And, um, just just to to break in there. How did you react when when you were told you were HIV positive. I was taken to a hospital, uh, in Gisborne and officials that were gonna meet us, uh, came over there and told us how serious my situation was. I've never heard of AIDS. My husband I never heard of AIDS, so we had this official in a little room, which they basically say to us, uh, your Children you are carrying, uh, carrying the same virus and your the virus you're carrying kills other people. And I was the first in New Zealand to have a A virus. So at that time, the reaction was, how do I come to a place I thought I was gonna love and flourish and bring such a horrible disease. I was frightened. I was really, really scared. And we tried to see if we can go to England to give birth to the babies and bring them back. And they said we can't bring them back. The immigration won't let us bring them back in. And because of my situation coming from Africa, we come here to look for good life. We didn't have time to think about it, but really, we knew it wasn't an option to take the other two. We had already back to Africa. So we decided to do what we were told, which we were told aids immediately in that conference that we were going to go to Australia. Uh, someone from the AIDS Foundation was gonna come and contact us or our arrangement for travelling already arranged. Um, so I was sent to Australia while I was in Australia. Uh, at the Sydney airport. I was met by AAA man who took me to the APP uh, point points clinic in Sydney. And I had, um, termination there, and he came back to pick me up. And this was my first time I've met a gay person. I've never met anyone who is gay. I never really know about gay people, but what happened when I was in the car was something that not does not happen where I come from to start with, they were very lovely to me. They kissed me. They put me in the car and they looked at each other with this most loving gesture that I didn't think two men could look at at each other like that. They took me to the house, which I drew I can draw. That house was so beautiful. It was so clean and fed me, uh, put me in the bath, run the bath. Tell me to leave all my pets and everything which was so against my African heritage. And men don't touch women's pets. And all the things they did it was like having a nurse. But I was with a couple. Uh, but this time I understand that I was being looked after by gay people, and I also didn't understand why they were looking after me when my doctor was not gonna touch me. My midwife was not gonna touch me everywhere in New Zealand. He was not gonna touch me. Um, So the next day, they took me back to the airport and I flew back to Gisborne, where I was living. Uh, from that time, really, I tended to have lost sense of who I was. I've lost my babies. I couldn't cry about it. I couldn't tell my neighbours about what had happened to those babies. I was scared because I was quite a big lady. Um, we just didn't know what to do. And we never No one ever came back from that panel to help us. We were given a number to call one lady, and I would mention her name because she had done her fantastic work in the, um uh, during the Pande Pande make, uh, Judith A. So she was my only contact if I got realistic and want to see someone, um, from that time, I just become an ill person. I was diagnosed with liver cancer, which, uh, later on I found that I didn't have liver cancer. We left Gisborne moved to We left, moved to Auckland, just looking for where there was coverage where nobody can find or know who we were. We were It was very difficult. At the end of the day, I couldn't look at my husband. I couldn't talk to him because the first time we were told we were HIV, they told me from now onwards, you you have to use condoms. We've never heard of condoms or seen them. So even our life love life goes straight away. On the day I was diagnosed, uh, back in Auckland, I tried to go to university to do teachers training. I had teachers training college and so wondering, What am I doing here? I'm going to die anyway. So a year later, I quit my training and, um, left. My husband started my own business, um, in Afghan hair braiding hair extensions, watching my Children grow, thinking what was gonna happen. But something changed during this time I become a sit girl. I figured it out that I have to survive. I figured it out that I have to look like everybody else. I figured out that I can't look sad. I can't look misery. So I went to the gym and I look great. I went to party. I just did everything I drank. I smoke, um, and I would become someone else. And from that time, I lived like someone else. But in the night, I was someone else again. Daytime. I was this lovely business mother in the night. I was this. I used to think I'm an alien, and I used to think that the powers that I felt during the time I'm isolated could transform me. I could feel that I could transform into a huge, um, alien. And I would come back to the people and say who I am because I really wanted to tell people that I am Sophie. You know, I'm someone's daughter. You know, I'm a family, but that was just for me to do when I'm in bed when I'm by myself. So it was a long 14 years before I fell to the ground. Um, I went to Auckland Hospital, which at that time I was really scared because I knew that I had to be isolated, and then everybody would know that I'm HIV positive. Earlier on, we used to be coded, but I was surprised that when I went to the hospital this time I wasn't coded. My name was so I ordered. And, um, the doctors were no longer wearing gloves and they were talking about medicines because I was actually dying when I turned up on the doctor's hospital and they were not wearing gloves anyway. They're talking about medicines. Well, let's try this and let's try this and thinking, Oh, this medicines, something came in my head that maybe I was just neglected. Nobody followed me up for 14 years. Nobody even knew that I existed. And for 14 years I didn't know that there was new medicines that did come up. Um, it took a while before the medicines kick in. And, um, when I could talk and think straight, I started writing a journal to lift my Children. My daughter was 18 by this time. When I was diagnosed, she was 3. 5, and I had prayed that if God was gonna take me, can you take me when my daughter was 18? So probably that's why I was so sick. Um, and I couldn't believe I was so scared that I asked to die when my daughter was 18. Now my daughter was 18. I was actually dying. And so I said, Let let me tell my Children what was killing me But I couldn't come to say it. I wrote and wrote. Every time I wrote what I was really feeling, I felt better and the doctors were amazed. I think I wrote about five chapters while I'm in the hospital, and every time I wrote one, I feel way better. And by the time I wrote my chapter four, I could walk and I decided to tell my Children, uh, I didn't tell them about what I was writing about. I just told them I took them home and I told them that I was dying of this and this and, um, it was really sad, Um, to think that my Children had thought they these cool kids, they go to expensive schools and live in expensive house Mommy driving an expensive car. Yet she leaves that dark secret. They cried, both of them. My older son was 21. By this time they all cried and just told them I'm not dead yet. I'm still here, so we'll just see how things were gonna go. So you were diagnosed in 1989. And, uh, this was about in 2001 when I got really sick. Can I just take you back to those early years like, 1989. And, um, you you initially said that you were the first in New Zealand. What? What does that mean? When I was told by my doctor that the government officials are going to come and talk to you about this. This is just after being diagnosed, they called us and said, We have to go to Gisborne Hospital where the officials were gonna be. So me and my husband, we went to hospital. And while we were there, there were a panel of eight people. I do know that very well, because the people were sitting in front of us, Uh, eight of them and me and my husband on the other side. It was just one room. There was no other rooms. It was a one room and my gynaecologist was there. Shirley Robertson. That's the only person I remember to up to to die. I don't remember the rest of the people. And, um, they told us what we heard. They said, Do you Do you know, you have got HIV A I they didn't even call IV. They say you've got aids, and we sort of nodded our heads. Uh, do you know what that means? And we are sort of nodding our heads, not answering. They say that means you're gonna die in the next 18 months. And when you're nodding your head, you, you, you, you you, you don't know don't really know what we have. You know, I was saying, I don't know because I had just had it, like, two weeks prior to this, so I didn't know what I had. So we're told that this disease will kill you within the next 18 months. And the problem with me was I'm carrying a baby. You know, two babies, you are pregnant and your babies, they've got the same disease. And if they come out, they will do the same thing. They'll die like you. So the best thing for you to live a little bit longer beyond the 18 months they have to get rid of those babies because we are not given enough information whether these babies were gonna die as well or was gonna die. So we didn't know anything. The people we were looking at were the only solutions I guess would give us the solutions. But at the same time, when they really introduce what I heard, they said, Do you know you've got AIDS? And we know that? Yes. Because now, by this time, my doctor had told me, Do you know you are the only you are the first one. They use the words first one, in this country. Well, I didn't, so we just looked strange. I don't know. Um, the best thing I could describe this scenario is you know, when you have been caught trying to sneak in a country, that's how I felt. I felt like I I've done something. I thought like I was being judged. I was in front of a panel who are judging me for killing somebody that I killed somebody. That's how we felt, probably to anyone who would have been in that room. They would have seen my frightened face. I was really, really frightened. I didn't know what to do. And so we didn't have know what to do. We left everything to the panel. But everything in that moment was already arranged. Our tickets were arranged. Where was going was arranged. If we didn't take those options, we have to leave the country and not come back. That was the immigration, so I don't know if anyone in that panel was from the immigration we we left. We went home a couple of days later, I flew to Auckland and get the, um, abortion done, Uh, termination. It wasn't an abortion this time because they were babies. The termination done. And, um, the only people I ever had contact with cuddled me like we do when someone lost their babies was the two gay men that I couldn't even remember their names The minute I left and I never met them again, I never called them again. I just went home and disappear. Somehow I got my life back. Um, by 2005, I was starting to feel better, and I decided I was going to rewrite my book properly. So I wasn't rewriting. I was reading it again and and try to make it sound properly or the spelling changed the spelling I wrote about. I rewrite about three times. So I phoned people who, uh, advertising whenever, uh, publishers. I said to them, I want to publish my book. This is here in New Zealand. They said, What's in your book? And I tried to hesitate, but I have to tell them what? My book. Now we don't publish those kind of stories, and then I'll phone another person. Then I'll ask them. Do you publish books? And are you a publisher? No. Who are you? I said, I don't know. What do you mean? Uh, Do you Are you something I said? Like, what are you a netball player or a rugby player? I said, no. No, we don't publish that. So I got really frustrated. I finally found, um, a publisher in the States who does self publishing. And I published my book, which is of his World Journey of the Lost Soul. At this time, I I had changed very much because, uh, my my focus was like if I didn't die the last four years I've lived in hospital. That means I might have another five years now to be able to tell my story. It wasn't so much of telling my story. What's in my story? I don't see it being relevant. What's relevant in my story is this kind of things. I suffered loneliness, isolation, feeling like you don't exist. You are one person who live, among others. I That's what I called myself. I either called myself mental because I wasn't normal because it's the normal people in me, uh, or a person who lives among others. When I'm walking around other people, I feel I'm walking Aro among them, but they can't see me. They can't feel me. And I live like that for so long and I start thinking. But this time you know the world is I've been watching. I've been watching the the world, um, disappear. I've been watching the virus, you know, terrorising people. I've been watching people being buried in mass graves, and I was still here. I think when I realised I wasn't the only one, I started thinking do everybody felt the same way as I felt, or because what happened to me was different from the other person. It still didn't make sense. What happened to me happened to me because of the situation I was in. I was pregnant. I'm a I'm a woman. But the fact that the virus itself has got a stigma that makes us misery, I thought, like if other people don't walk around in the hospital instead, I've got it. That means they must be failing it. And I really wanted to go and share with them, which was the hardest thing. And it still the hardest thing today. Uh, people don't come out and say they've got a virus. People don't come up and say I'm failing to die. Um and that gives me a different strength to why I'm here. The purpose for me to be here to die, Um, because I found out that just a secret living in in a secret way, or you you carry something within yourself causes illnesses, other illnesses, and I normally say cancerous things that you keep deep down why I say that? Because when I was talking to myself putting on the paper, it was coming out of me in the last two years that I actually wake up in the morning and make it my business to talk to the world and tell them how I feel. It's almost like everything was taken out of my system and it's something I talk about. It's like it's not inside me. So I really believe that the part of those people that are like me, uh, positive people may need a shift from a behaviour. Uh, it's a hard behaviour to start because there are people outside who are not a positive that might not accept us. But if you are doing it for yourself if you want to live longer, if you want to live happily, you might have to change. Change the attitude. It's an attu required because nothing is gonna change for our positive people anymore. Those who are outside, uh, who are not positive people. From what I see from what I saw then, when I was living in the first line, which I talk about, I talked a lot about my those days in the first lane in my life. You know, I picked up guys, you know, I know how to pick them up. I knew I end up knowing who is sick and who isn't when I'm looking at some I said you must be HIV positive. And I still do that today. And I'm not wrong. Maybe 95%. I am right. I can pick them up. So I used to go out where these people are like, uh or like places I like to hang out. I would not want to hang out in a tatty place because now I become, you know, the city girl. And I started knowing how people think and behave when it comes to sex. If I look great and I know how to talk, I'm likely to be picked up by a guy than the lady that is sitting there That is healthy, maybe looking a little bit fluffy. No. And I realised the ignorance in it all because because I look like that someone will come to me and said, Oh, you do. Where are you from? I said, I'm from Africa. Aren't you like there's no there? I said, Really? I said, I don't know Now. This was the first lane where I learned the ignorance about sex, how people catch or, um, our people wake up in the morning and say, My God, what happened to me? We go out there we in in in our way of living. We don't understand that. Um we live in a swimming pool. We all swim in there. And that's how one person thinks I can do that or I hang in Ponzo, for instance. You don't find people Who are I in? I hanged in Ponzo. I hanged in the stand. I hanged at the waterfront. I hanged where the real people are because I'm so real. It's only that I'm no longer part of you guys. But one thing I realise we all need to have sex and sex was part of the same. And how could I run around and said, Oh, you know, my gadgets are not working when I I want to be filled. And one thing I also recognise what I thought I needed some love and I had to steal it. How do I steal it? I look nice. I look cool. Then the guy cuddles me, kisses me, do things to me The worst time in my life The first time I had sex. I like telling that part. I, um it was like two years after I sleep, I left my husband and I was really scared. I didn't want, you know, because I knew I could give it to somebody else. But I was going out. I started becoming someone else and drinking, smoking. I never done that in my couch and nobody smoke or drink in my family. I'm talking about the women. We live the woman life. But now I'm an alien. I'm just, you know, living there. I want to survive. I want to see my Children grow. I went to the, uh there was a bar or opposite TV one, and I was in there, my girlfriend. And, um, this gorgeous guy was just so gorgeous. And so he comes in and all these girls were feeling jealous of me, you know, a few beers, you know, he relaxed a little bit and, you know, I didn't know what to do. So he took me to his place and I got there, and he, um we went so he poured a glass of wine and I wanted to say no, you know, But I couldn't say no because I am HIV positive. I just said No, no, no, no, no, no. Before I know it, you know he was on me. I do remember that for days after that I felt like I've killed somebody. I, I prayed to God. I said, please, God, not him. Please, please, please, Please, please. For years I felt guilty. I was so paranoid, I had to find out what was the symptoms which was paranoid. Looked around me to think Oh, my God, Someone knows what happened. And it was just in my blood. But I thought someone was watching me. 24 7. But I couldn't stop living. We all need to live, and that's where the subject comes back. What are we going to do next? When this disease comes back? Another one of the sort. Do we just go killing people? Who's got it? What do we do with them? Do we talk about? We don't want education in school because we don't want to talk about the disease because we don't want our Children whose child doesn't want to know about this. When I'm telling you where I was before your child was there. And these are people who are caught in the, um in the influence of ignorance or ignorance of influence one way or another because There are so much people there that have got power to influence the world and those who doesn't have get caught in it. And I saw it all with my eyes and the first thing I did that made me very angry that I spent all those 14 years watching my Children on a trip. They were growing. They were going to those places. I brought them up to be flash to go to those flash places. But those are the flash places. I was going as well, and I watched them. So I said, I'm not as long as I live. I am not going to see any child sitting on a trap just because they are people. We've got influence, and it's all ignorance because they think they are protecting our Children. They're not because what's out there is not as good as it looks. So my duty, as as I say it is to make sure are no child goes without understanding what's happened in the real world. My duty is Children should understand stigmas. Other people, those who are different, those who come from different backgrounds, those who come from, uh, different, um, sexual orientation does not make them any better. It only leads to what I call ignorance and ignorance. Faster. Um, ignorance kills faster than a car crash. I've seen it all out there and I'm quite happy for people to ask me. What is that I'm trying to say. What is it I'm trying to do? But so far I am happy because I've met so many wonderful people. Um that I didn't think they existed everywhere I looked, I just saw people that are horrible. Every person was horrible. As far as I'm concerned. How could I not even grieve? I went to see my doctor a couple of years ago and I say, I don't know. I'm just crying or just cry. I cried for days and said, You are grieving. Just go home and grieve. I said, How do you grieve in my country? We all sit together and said, Oh, my God. You know, today they said, Oh, my God, I'm sorry. You know, you go to HIV, we actually do that. So we just watch you. We help each other to go over HIV. Now, in this country, if you tell people that they have got HIV, you can't go to the supermarket before people and standing next to the milk fridge. That paranoia. You know, I went to I went to school, uh, last year to high school, um, telling my story. I was surprised how young people came up. They are just hearing my story. Young girls crying, coming to cuddle me up. I wasn't crying or just telling what happened to me cuddling me up, you know, which is what should have happened then, rather than everybody killing each other. So as a person who didn't go to school to do medical or all these things I only know talk about what happened to me and what I would like to achieve or how I would like to be used to the society. So for you, when we're thinking about stigma and discrimination, is it what people are doing outwardly to you? Or is it more internal? Or is it a mixture of both? How how How is that balancing? After I've recovered recovery? I've had a good look at what it is that I was suffering. I was suffering from what was going internally. Because if I really think about it, nobody knew except this panel that I was HIV positive, but the whole world didn't. So because of this the the disease or the virus, I was paranoid. And the paranoia I suffered becomes the stigma was stigmas me because I was being paranoid. I thought everybody was watching me every day. That is what even today, a lot of people are suffering the stigma that I have I experienced. Now that I'm out is next to zero. It's totally next to zero. And I mean, I say this because it's true. The minute I say to people, I am HIV, I don't get paranoid. Uh, the paranoia is gone. I don't think like people are looking at me. It just will disappear. So it for me it was an internal thing. No, it's no one so far has come to me and said, Oh, my God, you've got, uh, HIV. Actually, I get stigma. Sometimes when people think I'm gay, they they do, they say, Oh, are you gay? You know, I don't know why they ask me if I'm gay, but I get that, um, in the public sometimes, especially with heterosexual people, because I hang around or most of my friends are gay people. And, um, I just feel like there there is still a lot of work there for people to understand that, Um, either when someone's sexuality is different, how we feel about them, that's the evil. I'm trying to talk about that. The ignorance I'm talking about because people are people. When I was feeling that I've got HIV and those people don't have, I totally separated myself. But when I came back to my senses No, no, we are all the same. We eat the same, we think the same. We've got the same heart. So because we separate each other according to what we don't like or what we fear or what we don't know, we cause other people to suffer that, um, stigma. So people are being still stigmas in the sense that sometimes you hear people talking about, uh how, um, HIV affects other people in an ignorant way, like you get it from kissing them, or you know you're gonna be skinny or that skinny girl looks like she's got AIDS. Those kind of comments stigma those who who are HIV positive. But I have not personally have someone coming straight into my eyes instead, I've got AIDS. Um, I actually have comments like, Maga, you don't look like I've got AIDS. And I say I got this 10 years ago when I started practising safe sex, safe living. Uh, when I meet guys and I said, Oh, you know, um, I'm HIV positive. It was very hard to start the trend, but I had made up my mind. I'm gonna start the trend. I'm HIV positive if you like it. Yeah, I am. If you don't, they The comments I get from all those, um, people. I've met males. They will say, Do you look to you? They will say You look very nice for someone who they say, Oh, you look very nice or you look very good. And I'm thinking, Do I look very good for someone who's got eyes? Or do I look very good for, um, for as a woman, I don't know what they mean, but whatever they mean it doesn't worry me. I've told them rejection is normal. So someone said, Oh, no, thank you, not men. They have said No, thank you to me. So how how do you have that conversation? How how does that conversation start when you meet somebody? Self-respect. I think I love myself. Uh, I love life. Um, I love to be loved and I. I want to give love and because I've got that in my basket when I meet somebody, I normally attract those people. Now the conversation for me starts when someone said they like me They don't just start saying they like, you know, they flirt with me, they do this. I go along with that to a certain extent where point where I made myself that it's not a good idea to go to jump into bed and say, Well, you're in there already. So I have ways where making a date get to know the person very well, not leaving it too long. Not three weeks later, the person is so in love with me. Then you tell him that those news No, maybe the second date on a coffee like look, I you know you like me. And, um, this is who I am, and I tend to find that those guys I've met along the way, um, they have actually sat down attentively, listened to all this. So in half the time I have to end up telling my story again over or how I got it, Whether my kids have got it and how I feel and what sort of tablets I take If they say it was meant to be. If they go, it was meant to be. I have been in two relationships in the last eight years both lasting, uh, four years. The other one is still going. I've been foreign affairs today and both, uh, people who, um, have been dating Um negative. So it depends how you can't go in any relationship if you emotionally tattered already. HIV or not, if you are HIV and think you someone won't love you, it's still because you haven't come with terms with yourself and the virus you live with and what I found out, which which I talk a lot about in my book. I, um my book I wrote is you need to have to go to a point in time where you make peace with the virus you live with. It's gonna be part of me, and someone rejects that you have rejected me, and I'm very, very much on that. And everybody who knows me knows that if you reject HIV or anything you say about HIV, that is negative. You have actually insulted me. And because I live by that, that means everybody who comes to me you have to live by that. That's how we make our relationship. When you're saying that, uh, when you meet guys and then then you talk to them. Maybe on the second or third date and and and kind of go through your story Do you get tired of of having to tell your story? I found that, uh, telling my story is not so tiring, but I found that, um if the person at the end of it sort of walk away the first time I didn't probably wasn't big deal. The second time was a big deal. But the third time, uh, I really I thought that rejection everybody else thought, but I thought it on a different level and that, uh, it's quite hard. It's It's something very hard to have to tell someone. Yeah, it's like I feel I felt like I'm begging them to love me, because if I wasn't HIV positive, I wouldn't have to tell them my story and story again, but I've accepted who I am. I'm gonna tell you over and over again because it's part of the deal. So I I'm just trying to get in my head the the the the the leap between the the first time post, Um HIV diagnosis that you had sex and you felt really paranoid to now where? Where there's a lot of acceptance. How did you get from that kind of paranoia to that acceptance? I think I used to think myself as a dirty person. Um and I think a lot of of us who are HIV positive feel dirty When you got the virus, you feel dead. HIV is attached to organs. When someone said they were a ISA or HIV, it's immediately they saying you got it through SAS and SAS is to do with my, um, private parts. Now I thought dirty all the time, to the point when I accepted that. It's I'm not dirty. HIV is me and reading all the things I've read recently, um, helps. But then when I was starting to take my meds and I'd already made my mind that what I want to live like, how did I go to the transition from being paranoid or not enjoying sex or feeling yucky to, uh, I'd always love sex. I know that. But there was a shift. Definitely. Uh, the behaviour. Even while during these acts, I was more open with my body or flourishing my body because the person I am with knows who I am. And I think that's the most important thing. When you start loving yourself with who you are and what you have and the other person knows what's going on, then you can share. Um um, enjoyable sex. In that sense, Uh, I just changed something just flicked. And, um, I was no longer paranoid about who I am. I didn't feel that anymore myself. Sophie came back as a woman. Yeah. Can you talk about, um, how meds and also how your kind of emotional state how they they work together or don't work together pretty much work together? Um, our immune, the this the syndrome is immune syndrome. So if our immune doesn't flourish in good environment and the environment is, um, provided by ourselves, we provide that ourselves by waking up in the morning, practising being happy. Don't just practise it. Be happy for real. Uh, and all those positive things you do for yourself helps your immune to, um to work with meds. I should say, um, when I think of what I do for myself every day, I think that complement the medicines I take and it it works together. And I really believe that the meds works. I really, really, really believe that. But I think when I look at other people who are HIV positive and myself in my attitude, I look way off them. I my appearance is different. Uh, everything I do is different. My energy for life is different. So your attitude helps in this scenario because it's your immune system. Your immune only flourish with. There is positive things. Yeah, when you reflect back on, uh, the diagnosis in 89 and how you were treated and how or how you weren't treated, um, by people around you. I mean, what do you think now, about about that time I'm still in conflict with that? Earlier, when I mentioned that if the same disease comes, how are we gonna treat ourselves and I I'm I'm I. I could see that we would treat us the same way because nothing has been being done. When I was treated with a a secrecy and it being hidden, I felt I was being hidden because someone surely knew I existed. Someone surely knew that I needed to be taken to the doctor. Someone surely knew, knew that I was just me and my Children. I didn't have anybody, but we were just hidden. That's how we felt and what's happening today. Those people who might have been having good services because our doctors are fantastic. The meds are there. The services are there. But we talk because we're talking about emotional and being recognised. Where stigma stands, nobody comes and talk to you. We've got people sitting in offices, just doing paperwork and writing what the medicines are doing that doesn't work on a social, um, level social level, for Well-being is actually having a contact. Someone contacting you, someone talking to you, feeling like you've got contact. There's nothing. It's too very secretive. Nothing has changed. We are still a a HIV. People are so a A. There is this movement that is going a A as an alcohol anonymous. There's a movement that's happening in around the world. That is not happening in New Zealand, where everyone is actively helping themselves to say we exist. In my book, I wrote gay people. Um, they gave me the courage to fight for my life. They mean, if they can get up in the morning and say, Oh, I'm gay, it's tough luck. I'm gonna get up and say I've got HIV. Tough luck. I wrote that in my book for a reason because somehow we feel like just because someone doesn't want to acknowledge us, we just go where they tell us to go and it's still happening today. We have been told that, you know, it's everything's fine. Go to your doctor. See, your doctor will give you some medicine. What about what's really happening? That is too very much the same, especially in the heterosexual sector. Because when I do hang out or I go and visit these people or talk to them, most of them knows who I am. They definitely thinking Are you gonna tell someone else that you know me that fear When I go to my, uh, colleagues that I work with, they are very much worried about me talking about AIDS and people who have got AIDS in the public and that defeats who I am. What I aim about is having our people, um, HIV or not in the community have their well-being balanced. Why? How does that work when a woman lives with the virus? Don't, uh, go to Children's school. Don't. Um um they don't do anything. They just go to work, they come home, they What sort of Children are coming out of this? Children that have got a secret or they've got a behaviour of a secretive person and all that is causing so much in our society. So what happened to me then was probably very not nice. And I understand at that time, I really do understand. But I don't understand today I don't understand today why people are still being secretive of saying, Oh, I know Sophie. She is HIV positive. Or maybe let's go and ask. So what we can do about things. Or maybe let's put this virus on the open and talk about what's happening in the world and where we are at on a very high level to make sure no one more child tomorrow we have the virus. The people I've met in the community recently that get, um, have been diagnosed. I look at them in the eye and they were the same time I had 26 years ago. The same time a grown up man. The other day I came to see me and I just said, What's your name? And I started crying. A grown up man, he cried. And I'm thinking, if they've read that this medicine, we're not dying anymore. Why are they crying? There's nothing that the medicine are they? Why are they crying? Because the information is as bad as it was then. When you got HIV, the alien is right inside you. That's why people cry when someone has been told you've got cancer. You run home straight away and tell your people The doctor say, I've got cancer and everybody come and said, Oh, you'll be fine. It's OK. A lot of us, we don't go and tell nobody, and that's when we go and do what I was telling you earlier on. I'm gonna die anywhere, let put my clothes on and just leave, among others. And those people, among others, are very alive in our society. We don't see them. They don't have a different colour. They actually look gorgeous. They are out there. So how are our Children going to fight the virus? How are Children going to say OK, our generation doesn't need this virus. And on the other side, we are so segregated by saying the virus come from certain groups of people. That pisses me off. That's not true. You go to Africa, it's there. You go to East America or wherever you go, it's there. It's everywhere. The virus is everywhere. When it's an illness, it's got nothing to do with people. And for me, if we can all actually actively talk about this and educate everybody and those who are already HIV positive to be looked after emotionally because that's where we are at HIV, uh, causes isolation. Isolation causes mental illness because there there's only those two things. Whether people are discriminating you or or you discriminating yourself, you isolate yourself and you go to a very dark place. And there the mental illness comes. You might not get the gun and kill people, but you are not a fit. A citizen in a way. Anything you are not. You're doing this. You're putting eggs there and putting that there, you know, you're just mixing just making things. That's not what we want. We want the healthy, well, beings in the society, and there is another way of helping those who have been already caught into it. We can't forget them. The people are getting so frustrated that they stopped taking their medications to die just because they said, um, I'm just gonna die. I can't be bothered these times myself. I wake up in the morning, I look at my tablets because I don't have the recent ones. We've got the new one, which is one I still got my old one. So I've got five in front of me, plus my blood pressure plus my mouth vitam. So I've got a cocktail of my tablets in the morning. Somehow I just wake up one day. I don't know what causes it, and I look at them and tea it comes down and sometimes I just don't want to take them. But I have to take them because if I don't take them, what happens to me So people like us, we're still going through those emotions that we need 1 to 1. We just put in our house given tablets and forgotten. Probably that's what is the same as it was before. Yes, we don't die anymore. The stigma is still very much alive where they are stigmas by other people. It's actually stigmas by the if you say, the society. I don't agree with that because the society are just ordinary people. I just really personally think it's, uh we are stigmas by the people who make laws. Yeah, the people who make laws stigmas us because how come there's no money to advertise this? You go in Africa and see boards of, uh, HIV on boards. You see Children who have got HIV, you see, um, adults with HIV. You see the word HIV everywhere on bill boards, and they don't have money to buy food. Why are they doing that? Why can't we do it in New Zealand or because we are just too wonderful to have diseases in our country? Or maybe people won't come? But our Children and our people are dying here in this country or suffering and that I don't agree with, and I'm not a politician. So I just do what I do on Facebook. Talk to people, you know. Look after yourself. Look after your Children love each other, cuddle each other because that's all what we have left. The full transcription of the recording ends. A list of keywords/tags describing the recording follow. These tags contain the correct spellings of names and places which may have been incorrectly spelt earlier in the document. The tags are seperated by a semi-colon: 1980s ; Africa ; Aotearoa New Zealand ; Auckland ; Auckland Hospital ; Australia ; Body Positive ; Gisborne ; God ; HIV / AIDS ; Judith Ackroyd ; New Zealand AIDS Foundation (NZAF) ; People ; Sophie Jayawardene ; Sophie's World: Journey of the Lost Soul ; Zimbabwe ; abortion ; acceptance ; activism ; advertising ; airport ; alcohol ; attitude ; baking ; billboards ; blood ; books ; cancer ; change ; children ; coffee ; coming out ; community ; condoms ; conference ; conflict ; conversation ; courage ; crying ; culture ; data ; dating ; difference ; disappear ; discrimination ; education ; email ; emotional ; energy ; environment ; escape ; face ; faith ; family ; fear ; food ; friends ; gay ; gloves ; government ; grief ; guilt ; gym ; hair ; health ; health system ; heritage ; heterosexual ; hit ; hospital ; identity ; immigration ; isolation ; journal ; kissing ; loneliness ; loss ; love ; medications ; medicine ; mental health ; mental illness ; music ; netball ; normal ; other ; pain ; pandemic ; paranoia ; peace ; pool ; power ; profile ; publishing ; reading ; rejection ; relationships ; respect ; sad ; safe sex ; school ; self esteem ; self respect ; sex ; sexual orientation ; sexuality ; sin ; smoking ; social ; soul ; stigma ; straight ; strength ; suffering ; suicide ; survival ; swimming ; termination ; the other side ; time ; touch ; tough ; training ; transition ; treat ; twins ; understanding ; university ; walking ; wellbeing ; wine ; women ; work ; writing. The original recording can be heard at this website https://www.pridenz.com/sophie_jayawardene_profile.html. The master recording is also archived at the Alexander Turnbull Library in Wellington, New Zealand.  For more details visit their website https://tiaki.natlib.govt.nz/#details=ecatalogue.1089591. Sophie Jayawardene also features audibly in the following recordings: "Auckland Pride Parade (2013)". Please note that this document may contain errors or omissions - you should always refer back to the original recording to confirm content.