Our Stories: Ending HIV Stigma

Positive Women Victoria

Our Stories: Ending HIV Stigma is a podcast about women, by women living with HIV in Australia to challenge the myths and stereotypes that feed HIV stigma. We share our stories of achieving our goals, navigating sex and relationships, and our journey through pregnancy and motherhood in this new era of Undetectable equals Untransmittable (U=U). Our stories are real, unfiltered and always inspiring. Hosted by Heather Ellis, a journalist and author, who has lived with HIV since 1995. Contact us at: info@positivewomen.org.au Website: www.positivewomen.org.au/tell-the-story/podcast This podcast has been supported by an unrestricted grant from Gilead Sciences Pty Ltd and made possible by Positive Women Victoria. Listen for free from your mobile device on Apple Podcasts, Google Podcasts or wherever you download your podcasts.

Episodes

  1. 15/08/2024

    Chrissie’s Story: My experience at AIDS2024 as an HIV advocate

    Chrissie has been living with HIV for 24 years. Originally from Zimbabwe, Chrissie lives in Australia’s Northern Territory with her family where she works as a social worker. But Chrissie is also a leading HIV advocate and social media influencer, and was awarded a scholarship to attend AIDS2024, the world’s largest HIV conference held every two years globally. In July, AIDS2024 was held in Munich, Germany.  Check out Chrissie's Facebook page Tackle HIV Stigma With Chrissie where she advocates to end HIV-related stigma in African communities in Australia and around the world.

    18 min
  2. Mati’s Story: Near the end, HIV treatments gave Mati life, love, nine grandchildren and a new career

    26/11/2020

    Mati’s Story: Near the end, HIV treatments gave Mati life, love, nine grandchildren and a new career

    Mati, from Zimbabwe, a mother of three, a church leader, and with a career in finance, had a HIV test for a life insurance policy. She was 39 years old and it was 1994, before effective HIV medications were discovered and her diagnosis spelled the end. Or so she thought…. Today, Mati is a social worker, has a new career as a HIV peer treatments facilitator, and has found love again.

    35 min
  3. Jane’s Story: It was the Age of Aquarius, long before HIV and the era of AIDS.

    10/11/2020

    Jane’s Story: It was the Age of Aquarius, long before HIV and the era of AIDS.

    Jane has been living with HIV for 31 years and is one of Australia’s HIV elders. Her story begins in the United States during the sexual revolution of the sixties. It was the Age of Aquarius. Long before HIV and the era of AIDS. A time of carefree sexual adventure, of making love not war.

    27 min
  4. Georgina’s Story: HIV never stopped her volunteering as a sewing teacher in Africa

    28/10/2020

    Georgina’s Story: HIV never stopped her volunteering as a sewing teacher in Africa

    Georgina Whitchurch has been living with HIV for seven years. Her story begins in Eswatini (formerly Swaziland), in southern Africa.After a career in hospital management in Australia, Georgina followed her passion for sewing and joined the Australian Volunteers Program. As a 64-year-old retiree, she took on the role of teaching sustainable sewing skills to women at an Eswatini village, but the charms of a local man, soon changed her life forever. Effective HIV treatments gave her back her health, and Georgina did not end her commitment to volunteering. She soon returned to Africa as a volunteer independently and for two years continued teaching sewing skills to rural women. After returning to Australia, Georgina put her management skills to good use and recently took on the role of chair of Positive Women Victoria. Podcast – Our Stories: Ending HIV StigmaEpisode 5: Georgina Whitchurch StoryTranscript (begins below AVP response) For people living with HIV who are interested in volunteering with the Australian Volunteers Program, the following response was received on 4/09/2020 People diagnosed with HIV are able to volunteer on the Australian Volunteers Program, provided that they are medically cleared, and deemed fit for a particular assignment in a particular country. Our current medical clearances and thresholds are issued by International SOS, our specialist medical screening and emergency assistance service provider. International SOS have been working with the Australian Volunteers Program since 2017, and prior to that date other providers were used. International SOS assesses individual medical situations in the same way, irrespective of what conditions or illnesses a prospective volunteer has. The medical decision by International SOS to approve a volunteer to go on assignment takes into consideration:- Is the person fit to work and deploy overseas?- Will any conditions be exacerbated by an overseas assignment?- Can any required medications be obtained overseas? The Australian Volunteers Program has a firm commitment to equality. This commitment is balanced with our obligation to ensure that program participants (volunteers, and their supported partners and family members) are safe and healthy, and that we do not put them in situations where they cannot be provided with the required medical facilities and support. These determinations are made on the basis of medical assessment by medical practitioners. If a volunteer’s health situation changed while they were on assignment, the same considerations would apply, and these would be based on the advice of a medical practitioner. Whether the volunteer is still fit to remain in-country, and whether we would we be putting them at unacceptable level of risk by keeping them on the program, would be considered. I hope this provides clarification and is helpful for your listeners.Patrick Gallus PublicistT +61 3 9279 1733Australian Volunteers Program - Melbourne office160 Johnston St, (P.O. Box 350), Fitzroy, Victoria, 3065, Australiawww.australianvolunteers.com Episode 5: Georgina Whitchurch StoryTranscript Heather EllisHi, I'm Heather Ellis, your host on Our Stories Ending HIV Stigma, a podcast by women living with HIV, where we share our stories of our adverse lives and challenge the myths and stereotypes that feed HIV stigma. Our Stories is part of the Women and HIV Tell The Story project made possible by Gilead Sciences and produced by Positive Women Victoria in Australia Georgina Whitchurch has been living with HIV for seven years. Her story begins in Eswatini, formerly Swaziland in southern Africa. After a career in hospital management, Georgina followed her passion for sewing and joined the Australian Volunteers Program. As a 64 year old retiree. She took on the role of teaching sewing to women at a village, but the charms of a local man soon changed her life forever. While effective HIV treatments gave her back her health, she did not end her commitment to volunteering. Georgina soon returned to Africa as a volunteer independently and for two years continued teaching sewing to rural women. After returning to Australia, Georgina put her management skills to good use, and recently took on the role if Chair of Positive Women Victoria, Welcome, Georgina to Our Stories Ending HIV Stigma. Georgina WhitchurchThank you, Heather. Heather EllisGreat to have you as a guest. You’ve got such an interesting story. I just want to start by asking with volunteering in Africa. It's not the usual choice for somebody going into retirement. How did this come about for you? Georgina Whitchurch I guess it was something that was in the back of my mind. For a long time, I enjoyed reading people's stories about volunteering overseas. And one night just out of the blue as things happen, I was on the computer. And I decided to open up Australian Volunteers International and just have a look and see what was there. And I had to scroll through 50 pages that were, you know, it was absolutely loaded with assignments that were coming up until I got to the S area. And there was sewing skills trainer and my little heart jumped because I love sewing and I've always wanted to impart my skills and my knowledge of sewing. And then I read where it was. And I thought, oh, oh, no, I can't go to Africa. And this little voice on my shoulder said, Yes, you can. And you're going, Heather EllisDid you realize that sewing skills would help these women escape poverty? Georgina Whitchurch Oh, definitely. Yes. And these women living in a village where there's no electricity, there's no sanitation, there's no fresh running water that is drinkable. They have to boil everything. It was an incredible journey. And so my aim was to get them to a fantastic quality where they could ask a really good price for what they were sewing, and the organization that they sort of loosely came under. Because this sewing program was organized by an independent missionary couple that were living in Swaziland and had been there for a long time. They've actually opened a shop where all of their goods are sold. I was back there last year, actually, I was back there and saw the shop and saw what they were doing and wow other products that they're making. So they had hand operated machines initially and what they were making when I arrived there was bags. And so we continued on that theme, but with some new designs that I'd introduced and a lot of quality control. They then went on to doing cushion covers, aprons, small coin purses, stuffed animals that obviously represent Africa. Some of the missionary tourists that were the buyers of the products. Yes, the missionary organizations there have a huge network. And so when any missionary people come into the country, they linked up with the missionary organizations that exist there and they're taken to all these places to see what is being done. And so a lot of those visitors to the country buy heaps and heaps and heaps of things from them, but also now you know, they do have this little shop in a tourist location. So they are selling quite well there. Towards the end of my stay those women were earning in the vicinity of 1000 Rand a month which is $100 in Australian terms, but that thousand Rand a month they had never seen money like that. Never. Heather EllisWhat was it like living in a Swaziland village. Were living in the village where you were teaching? Georgina Whitchurch I lived in a different compound. Where there were about eight houses, there was only three white people living there, everyone else was native to the country. And me, of course, I was the sewing lady because, when I had a reasonable dwelling that we could get to fairly easily, I bought three electric sewing machines. And I used to pick the ladies up three at a time and bring them to the house, and they would sew for a day on these electric machines. Fantastic. Heather EllisSo I just wanted to talk to you a little bit now about having an HIV test in Africa and how that kind about. Georgina Whitchurch I became quite unwell. And it was even after, you know, there had been a person from AVI headquarters in Melbourne had visited us and I just happened to have a lesion on my face, which, I took no notice of. It wasn't anything. And she said, I think you'd better get that checked out. And I didn't because I knew that it was nothing but unfortunately I ended up with a lesion in my mouth in the side of my cheek and I started feeling quite unwell. So I went to the doctor then and after a day of being on medication, I actually collapsed at home lost consciousness hit the floor, which really woke me up well and truly, and went back to that doctor and I was put to hospital. And while I was there, they were doing lots and lots and lots of tests. And eventually, they tested for HIV. Heather EllisEven though the doctors in Africa, particularly Southern Africa would be very familiar with HIV, they wouldn't have thought to test a 64 year old white woman from Australia for HIV. I mean, it'd be like here in Australia, it'd be the last thing they would test you would be probably on your deathbed before they would test for HIV. So why did they decide to do that? Was it just because you were in Africa, and they are familiar with the symptomsa? Georgina Whitchurch The doctor that was looking after me, they all have so much experience with HIV because it is very, very prevalent in their particular country in Africa. I think they have the highest rate. He obviously thought, well, this is the only thing we can do now is do this HIV test. And so he did and that was it. And so you know, we became arch enemies after the diagnosis, because I didn't behave very well at all. I was a very bad patient. Heather EllisWhat do you mean by that, like, didn’t you accept the diagnosis? Georgina Whitchurch I accepted it, but I didn't really want to be where I was, and still in hospital and being cared for. I just wanted to go away and hide

    32 min
  5. Sarah Feagan’s Story: After a bohemian life of self-discovery, HIV stigma nearly killed her

    13/10/2020

    Sarah Feagan’s Story: After a bohemian life of self-discovery, HIV stigma nearly killed her

    Sarah Feagan has been living with HIV for 12 years. Her story begins in Melbourne. As a troubled teen, Sarah left home and her youth became a rollercoaster of homelessness, and drugs, which evolved into a bohemian life of self-discovery. After falling in love with a partner who didn’t know their status, later Sarah was diagnosed with HIV at 21, but while effective treatments were available, this was not enough and stigma nearly killed her. Today, Sarah is an HIV peer navigator and one of Australia’s most dynamic leaders in HIV advocacy, especially for women. TRANSCRIPTEPISODE 4: SARAH FEAGAN’S STORYUploaded: 13/10/2020 Heather EllisHi, I'm Heather Ellis your host on our stories, ending HIV stigma, a podcast by women living with HIV, where we share our stories of our diverse lives and challenged the myths and stereotypes that feed HIV stigma are stories as part of the women and HIV tell the story project made possible by Gilead Sciences and produced by Positive Women Victoria in Australia. Sarah Feagan has been living with HIV for 12 years. Her story begins in Melbourne. As a troubled tee, Sarah left home at 14 and her youth became a roller coaster of homelessness, and drugs, which evolved into a bohemian life of self-discovery. After falling in love with a partner who didn't know their status. Later, Sarah was diagnosed with HIV. But while effective treatments were available. This was not enough and stigma nearly killed her. Today. Sarah is a Peer Navigator and one of Australia's most dynamic leaders in HIV efficacy, especially for women. Welcome, Sarah. Sarah FeaganThank you so much. Hello. Thanks for having me. And thanks for a beautiful introduction. Heather EllisYou're such an inspiration. I want to start by asking as a teenager you were living on and off the streets of Melbourne. And this is often a lifestyle that is termed the University of Life. What were some of your learning experiences that made you the person you are today? Sarah FeaganYeah, I think being on the streets, you know, and that comes in different forms as well. Sometimes you sleeping rough sometimes, you're couch-surfing. But you really feel like you're at the whim of other people. And I think though that can be a really good thing and really bad thing because it can teach you about how the kindness of strangers or the gentleness of other people but it can also teach you the realities of, I guess, how cruel and how bad people can be as well and I was really lucky that during my time, when I was homeless that I had really good people that did help me and I have to say that there would have been more positive experiences, than negative ones. Heather EllisYou were telling me your parents stood by you during those years? S what would be your advice to other parents who might have teenagers going through a similar situation? Sarah FeaganMy parents, a shout out to those beautiful humans, I put them through and back and, you know, at 14, you don't know, I thought I knew everything. And I thought that I could understand certain things in my life that had happened or certain moments that had made me act out in different ways. And I was so confused and so angry and I was going through puberty and it's just a toxic mix? But I couldn't verbalize. I couldn't say what was happening for me. So it came out in really poor behaviors. And, yeah, my parents went through that and they had to watch sort of me self-destruct, when they were willing and able to support me. So we are, we are really close now. Like we speak every day, and we're really good friends. But I think to other parents, I'm not a parent myself, so I can't, I can't sort of speak to that. But definitely their unconditional love. The door was always open, even when they wanted to lock it and change the keys change and change the locks, they still kept that door open. And I think that I had to go on my journey of self-discovery and my journey of self-awakening and understanding a lot of things about my past and maybe why I was reacting the way I was, and they allowed me to do that. Maybe it was from afar, but the very supportive, frustrated kind of moment, but they were always there and at the end of the day, that's the reason why I'm still alive. Your child is always your baby at the end of the day. That little animal that's driving you nuts is your baby. And that yeah, that love is always felt as a child, I have always felt that love. So I'm really lucky Heather EllisWhen you suddenly found yourself in this sort of Bohemian lifestyle living in a house full of artists and musicians, how was that a turning point for you? Sarah FeaganSo I was actually sleeping rough at a train station and somebody I think he knew my sister and he recognized me and he introduced me to this home and it was such an amazing experience. Like they didn't know me, I rocked up at their door with like, my big bag of stuff, and they let me come in and they taught me music and so many things that really shaped the way that I engaged with the world for the rest of my teenage years. You know, I was always going to festivals or parties and being around really interesting people. So it was a really special time but I guess with that as well and with any creative culture or subculture this subculture. Because of that I definitely fell into a bit more of a drug taking side of things like drugs were there, but drugs definitely consumed me and I consumed them? And yeah, that's sort of where I ended up focusing and needing to get out of Melbourne just because my drug use had gone through the roof. Heather EllisYou're telling me that you moved to northern New South Wales. That would have been like paradise after Melbourne, warm sunshine and the like. And it was here that you fell in love. So where did that take you? Sarah FeaganYeah, so it was like I said, my drug use was out of control. And I was about 19 by this stage, and we ended up north living with a really good friend of mine. And she was really supportive and part of my healing and then I've headed into town and I met this like super hot guy, and yeah, I fell in love. But unfortunately, there was a lot that he didn't know about himself. Yeah, I mean, ultimately that that took me down. The road that I'm on now so Heather EllisWhen people are infected with HIV, they go through what they call seroconversion. So this is when the virus is basically, creating antibodies and attaching itself to cells. You still had no idea but you fell ill and then you went to the doctor and it was similar from what you're telling me, a similar story where first off the doctors really don't suspect HIV. Was that the way it was for you? Sarah FeaganYeah, so I guess yeah, that's what I was alluding to is definitely like this guy was unaware of his HIV status. His sera conversion illness was minimal, just flu-likes symptom that he could identify after and diagnosis, probably five, six years ago and he was fine. He was pretty healthy, and just showed no signs or symptoms to me though. After meeting him, we were having unprotected that I got sick, I was covered in a rash. I was losing weight, I couldn't eat. I just was very, very sick. And then I went to the hospital like I am typical Anglo Australian, you know, blonde curly hair, blue eyes, and they were testing me for tropical diseases that weren't even in the country because HIV was not on their radar. And that unconscious bias that women and men and trans people are subjected to by clinicians and doctors, they look at you and they think, Well, no, that's not their behavior, they might not be at risk. And it's about instead of it being about what you perceive as a clinician or doctor. It's about, well hang on, these are the symptoms that this person is presenting. Because I mean, HIV, it's not a kind of behavior. You can have one time. You can have experiment with drugs one time, and that's all it takes. And so yeah, finally, I can't remember because I was so unwell. And I'm pretty sure there was a nurse who came in and just sort of went: She needs a HIV test. And sure enough, he was right. Sarah FeaganThis was around the year 2000, so there wasn't really that much talk about HIV. So it probably wasn't really on the radar. I was very lucky that the nurse came in and thought, Well, how about we have HIV tests? Because you would know of this yourself that there's people who have a late stage diagnosis purely for the fact that they're not tested for HIV until like the last minute.So that unconscious bias, and I think, we're not looking for it. I think though they come in 2008. HIV has been around already for 40 years. But this speaks to rural and regional areas where there isn't that education, understanding or even just being exposed to it. But you know, through my work as well, and through my own lived experience, we hear and say about people being mis-diagnosed late with really, really detrimental effects on the people. And, you know, it's not good enough that especially even today in 2020, we're still saying it, it's about educating ourselves and being really health literate. Health aware about our bodies and maybe the risks or not risks that we're taking. But just knowing that HIV does exist, and it is out there, and it doesn't really care what you look like, or how often you have , or how bad you are in the eyes of society, it's a virus and it will do what it wants. Heather EllisSo when you fell ill did you even think about HIV at that time. Did it cross your mind? Sarah FeaganNo, not at all. Not at all. And this is a weird, I guess, part of my story is that my mom nursed HIV AIDS patients before they had a name for it in the late 70s, early 80s. And so it was just it's not that it was spoken about, but it was definitely like it wasn't on my radar. It wasn't on my radar. Even with my mom's experience, it wasn't there. Just I was young. I didn't care I've been having this pretty brilliant, easy lifestyle and I trusted this man, I

    33 min
  6. Batsirai’s Story: In Africa, safe messages were everywhere, but not in Australia

    28/09/2020

    Batsirai’s Story: In Africa, safe messages were everywhere, but not in Australia

    Batsirai’s story begins in southern Africa. As a teenager in the late 1990’s, she recalls a scary time when people were dying from AIDS. Safe messages were everywhere. Then the family moved to Australia, but there were no billboards, no TV adverts, no news of HIV and she assumed it was safe here. Batsirai’s revealing story highlights the importance of continuing to have public discussions of HIV among all our communities to encourage awareness, testing, and as a challenge to the myths that underpin stigma.https://positivewomen.org.au/tell-the-story/podcast TRANSCRIPT / SHOW NOTESBATSIRAI Story Heather EllisHi, I'm Heather Ellis your host on our stories ending HIV stigma, a podcast for women living with HIV, where we share our stories of our diverse lives and challenge the myths and stereotypes that feed HIV stigma. Our Stories is part of the women in HIV Tell The Story project made possible by Gilead Sciences and produced by Positive Women Victoria in Australia.Batsirai has been living with HIV for 13 years. Her story begins in southern Africa as a teenager in the late 1990s. Batsirai recalls a scary time growing up in Namibia, Zambia and Zimbabwe. People were getting sick and dying from AIDS, safe messages were everywhere. So when she finished high school and went to university, everyone either use condoms or abstain from . Then her parents moved the family to Australia, but there were no billboards. No TV adverts, no news of HIV, and she assumed it was safe here. Welcome Batsirai. Batsirai Hi, everyone. Heather EllisIt sounds like you had a very exciting life traveling around those countries in southern Africa. Why were your family living in so many countries? Batsirai Well, I think part of it is because my parents, they are both Africans, but they come from two different countries. So in Africa, there are so many countries in different cultures, different languages. So I think my parents wanted me to embrace both cultures. So they were African but Africans but very different. I was born in Zimbabwe, but I was raised in Namibia, which is another country, so to be part of different cultures in that family. We just used to move around on school holidays. So that was quite important part of who I am. I've acquired three different languages, and it's always stuck with me. So yeah, it was pretty amazing time when I think back. Heather EllisWhat was it like as a teenager in Africa at this time when there were so many messages about HIV on the billboards, in the news. What did you and your friends talk about around HIV? How scary was it? What was it like? BatsiraiIt was very scary because even in educations classes in high school, they always told us about HIV. It was being discussed. And we're told, because I went to a Catholic school in high school. So obviously the Catholic schools and churches they already have their own values around . So they're even reinforcing the abstinence because of HIV. And then they call it as it is and the musicians back in Africa they were singing about HIV. They spoke about AIDS because people were dying. So there were messages in songs, messages at school, messages everywhere. Even with your parents because we had aunts and uncles who were dying. I think I had like three close relatives for my mom and dad who died because of AIDS-related illness. So it was very close to home. It was just very real. Yeah, no, no one wanted to get it. So in high school people were afraid we never engage in at all. Yeah, we were scared. Heather EllisIt's so different than what it is here in Australia where you would be very hard pressed to find anyone who has been impacted by HIV by having a family member die from from AIDS. And back then HIV was very much a death sentence. It was before effective HIV medications were discovered, which was in 1996. So you had this health education at school. How did your parents talk to you about education as a teenager? Batsirai Well, my parents Well, they also reinforce the message of abstinence, because I think now it has now driven by HIV, just to say, don't do it because of that. Whereas initially back in, you know, years before, it had become a big thing. They were told to abstain, so you wouldn't get pregnant, because those messages are still even here, right. And access to contraception wasn't that easy in Africa, so you're told to abstain because of that. So now the message with parents was just ‘you don't do it’. And that's where it ends, your sexuality wasn't talked about. So it was just driven by the HIV/AIDS message, don't do it. Otherwise, you will die. You know, so there were all these stigma kind of related messages as well attached to it. So I remember when an aunt of mine wasn't well and she came to stay with us. They had to hide her. So people wouldn't see that she had an AIDS-related illness. And this was my mother’s sister. So yeah, it was just pretty real. Heather EllisYeah, terrible times. How old were you when you move to Australia with your family? BatsiraiI would say probably toy 19 going 20 Heather EllisWhat did you think of life here? Like after what was going on with this scary situation in Africa? What was it like here in Australia for you as a young woman? BatsiraiIt was like heaven? I felt like, Oh, I could just be me. I could just be free. I almost feel like once we got on that plane, over the big ocean to get to Australia, it was like we are separate, we are away from all of that and almost felt freedom of being who I am. My parents stayed in a rural part of Australia and I went to a big city, because I was going to go finish my university. So I had all this independence now, you know, I'm in Australia, I can be myself with sexually and all of that. So it was actually a relief being away from those HIV messages. It didn't exist anymore being here and we'd done the HIV test because when you come here, you do your tests or you're coming as a family and you're gonna apply for residency you have do your test for HIV. Yeah, so that was negative. They're like, Oh, well, what else could go wrong? We are untouchable. We're free. That's how I felt. Compared to Africa, we don’t see any health messages anywhere. Heather Ellis What did you think about this compared to what was going on in Africa? Did you just think, well, HIV is not here. It's not an issue here. Batsirai Yeah, that's what I thought because I thought, it's not here. And also growing up there was all these myths about HIV came from Africa anyway. Do you know what I mean? They talk about where the largest population of people that have HIV is in Africa. So I grew up with those notions and then now in a western country is not talked about. You don't see billboards. I actually thought HIV was non-existent, to be honest. Yeah, I just thought we were safe. And all the people that were here that were from Africa, I thought they were all negative because they'd gone through the test. Heather EllisAnd at university where you've got a lot of young people and they're sort of exploring their sexuality. Were there any safe messages? Batsirai None at all. There were all these researchers testing reproductive health so the advice coming up was for contraception. They were researching an implant. I remember someone coming to me now thinking about it was like this is very ironic. Yeah, that's the only time that's it. That's the only thing I saw. Heather EllisYeah. And that's nothing to do with sexual health. Batsirai But if you think about it, it's like they are saying. Oh, they even telling us that the thing we should be worrying about is actually having babies. So that was in my mind. Heather EllisWhen you fell in love at university, how different was this to starting a relationship in Africa. So if you'd fallen in love in Africa, what would have happened differently to what happened here in Africa? BatsiraiWhen you met someone, the first discussions we'll be having is about going to get a HIV test with the guy. Or if you're going to have , you have to abstain with this guy or you use condoms, condoms were the norm. And if you're gonna not use them, you start having talks about having tests. So the testing culture was very real. You talk about that. Even family members will talk together about it, like they will say: ‘I hope that person has been tested’. And if they suspect because in an African community, everybody knows everyone and everybody is into everyone's business. So if they know this guy or if someone else says they think he was suspicious. They'll even be telling you like I hope your daughter is getting tested before they do anything with that man before you get married. You'd be tested if they wanted to make sure. So there was a lot of that. And there was pre and post-HIV test counselling. You would go with your boyfriend to have that counselling session about why you're getting tested for HIV. It was very, very real. So when I came to Australia, it was such a relief, not have that burden to talk to someone about that you just could be spontaneous, right? So yeah, it was very different, very easy. You don't have to have these sexual health talks. When I met this guy through uni, and then I got diagnosed, we were so like there for each other, we supported each other. I made sure he was okay. I didn't tell anyone. He didn't tell anyone. And I think he's probably still struggling with it even 30 years down the line. Heather EllisWhen people are diagnosed there are different reasons why they have a HIV test. They may have a seroconversion illness, which is after first being infected and the virus is at that stage where it's attaching to cells and making antibodies. So there's like this fight going on within the body. Often that comes out in people as flu-like symptoms and various illnesses and rashes. And then other people don't get any of those symptoms. And some people like myself, I had a HIV test because I needed to get a visa for travel. So what was you

    36 min
  7. Brittney’s Story: After a surgery mishap in childhood, HIV never held her back.

    25/09/2020

    Brittney’s Story: After a surgery mishap in childhood, HIV never held her back.

    After a surgery mishap, Brittney contracted HIV when she was nine years old. Brittney, not her real name, has been living with HIV for 21 years. Growing up with HIV navigating friendships, relationships, university and now a new mum, HIV has never held her back. For more details on topics discussed in this episode, please visit:Positive Women Victoria: https://positivewomen.org.au Episode 2: Brittney’s StoryTranscript / Show Notes Heather Ellis:Hi, I'm Heather Ellis your host on Our Stories: Ending HIV Stigma, a podcast by women living with HIV where we share our stories of our diverse lives and challenge the myths and stereotypes that feed HIV stigma. Our stories is part of the women in HIV tell the story project made possible by Gilead Sciences and produced by Positive Women Victoria in Australia. Brittany's story starts in Melbourne, Brittany, not her real name, has been living with HIV for 21 years. At just nine years old, she contracted HIV due to a mishap from major surgery as a child. As a teenager, then a young woman navigating relationships, university and a career, and now a new mum, HIV has never held her back. Welcome, Brittany. And thank you for sharing your story on Our Stories: Ending HIV Stigma. Brittney:No worries. It's my pleasure. Heather Ellis:You were telling me that your parents told you when you were 10 years old. I imagine you knew very little of HIV other than the occasional news report on TV. What were those early years like for you as a child? Brittney:Oh, it's funny. You mentioned the occasional news report, because coincidentally, just a couple of weeks or so before I was diagnosed, I actually read an article in the weekend paper profiling some people that had recently been diagnosed and the headline was: I will survive. And so that was pretty much my understanding, I knew that it was a virus, and I knew that it was a big deal to some people, but I was also being told, this is not a big deal. This is not a death sentence. Everything should be normal for you when you grow up. So it was kind of reconciling those two differing opinions and those mixed messages that I was getting was probably the major thing that was going on for me at that time. Heather Ellis:So how did your parents tell you? Did they sit you down and say, “Oh, we have something to tell you?” How did that go? What was your memory of that? Brittney: It was all a little bit dramatic in terms of the circumstances in which we found out and we got a phone call from the hospital. And, and so from there, it was basically just straight into the car to the hospital to have the test. And so the bits of information that I got from them were sort of small pieces. And eventually, I think we were told, not negative at some point, but we weren't told positive for a little while either. So there was a little bit of a limbo period in there as well. And so I can't really remember the conversations I had with them, but I was kind of learning as they were. We were all sort of getting that information at the same time. Heather Ellis:That news would have been so shocking for your parents for their child to be diagnosed with HIV. But like you're saying, you were all on this learning curve, and I imagine it brought you so close together. During your childhood, did you find that you had this was a really stronger relationship with your parents and having their support? Brittney:Yeah, and that continued through life, because I've been able to say, the amount of time and energy and love that has gone into that part of my experience. I mean, it's gone into all of my experiences with my parents, but that, in particular, I was able to see their need to protect me and to sort of witness the things that they were doing and saying. I did have a little bit of an issue in the earlier days with the fact that we weren't talking about it as much as I thought we should be. I think it's difficult as a child and an adolescent to find the right outlet for those kinds of conversations. And the focus was very much on just, I'm a normal child, everything is normal, we'll just go on as normal when there were moments where I really wanted to be able to sort of sit down and say: “look, this isn't normal. This is really . You know, let's talk about it”. And I almost felt like I deserved a bit more sympathy than I got. But in hindsight, I think they did everything exactly the way that I would do it if I had to go through that again. Heather Ellis:Oh, imagine that your parents were really wanting you to have a normal childhood because of HIV stigma and effective HIV treatments were discovered in 1996. So this was two years after you were diagnosed. Did you go on treatments immediately after you were diagnosed? Brittney:I did almost straightaway. So I think I was diagnosed in July and started medication the following month, and I'm really, really grateful for that. I didn't have any serious issues with the medications that I was taking and it was sort of constantly being changed as I got a bit bigger and put on a bit more weight and, and as new medications came out that had less side effects. I think I was very lucky in that sense that I was able to get down to an undetectable viral load very quickly. Heather Ellis:Back in those days, no one really knew much about medications or they didn't understand the side effects. Doctors didn't understand the impact of the treatments on a female body compared to a male body. But then on a child's body, that would have been something entirely different. Did you find that you were you were one of these people that they wanted to do testing on all the time to find out the impact of the treatments on a child's growing body? Brittney:I was actually treated in an adult hospital just because of people that we knew. And so I'm not sure whether it was approached much differently is treating an adult, but I know it certainly felt a bit strange to be the only kid in the waiting room of a grown-up hospital and I'm sure that added an extra element of complexity to it. But as a child growing up, obviously your weight fluctuates and increases a lot more than an adult is expected to. So there was a lot of attention given to how much I should weigh and how much medications did that mean, I should take. And so things sort of changed very quickly, in that earlier time. Heather Ellis:With taking pills back in the early days we were taking like four pills twice a day, but today, it's often just one pill once a day. So what was it like taking so many pills every day? Brittney:It was a learning curve for me. And it started out actually with a couple of medications I had had a syrup rather than a pill. So that was actually worse because it used to make me quite nauseous. We used to have to mix it in with other things to actually physically get it down. And then when I would find that in the early mornings going to school, I then get really queasy and I have to have spare medication in my bag in case I threw up. I do have a memory of trying to swallow a tablet drinking from a water bubbler in the playground? And I don't know why I was taking it at school but the gravity of it just did not work. Yeah, it was trial and error, I guess. But I've got to a place now where I can completely take pretty much anything of any size. Heather Ellis:Then as a teenager you would have been pretty much been an old hand at taking treatments. But how did you feel when you reached that time at high school and girlfriends were talking about boys? Brittney:I was very lucky in that my group of friends and I didn't have much to do with the opposite at all. So dating wasn't really like a narrative that we were exposed to. It was kind of very much like something that the popular girls did. And yeah, I'm sure they had more insight into it than I did, but it really didn't really come up. So I was very much sheltered from it from that aspect of it, which I'm extremely grateful for as well. One thing that did make it a little bit more relevant for me was, if I had friends that were going through some sort of crisis. I really wanted to be able to sort of give them some empathetic support and say: “you know, listen, I've been through tough times too, and you'll be fine”. And to be able to sort of back that up with some kind of evidence, but they didn't know, of course, what I'd been through so I sort of had no authority to tell them you know, you'll be alright. And I found that a little bit frustrating, so I really wanted them to sort of take me seriously. That's probably the most frustrated I ever felt with it. Heather Ellis:Did you have any peer support from the HIV sector because I know with myself I was so grateful to have the peer support through Positive Women Victoria and meet other women living with HIV and go on an annual retreat and attend women days. And many of those women over the years are now like my sisters as we’ve known each other for so many years. So did you have that kind of peer support as a child and as a teenager growing up with HIV? Brittney:Yeah, I did participate a couple of times in the annual Camp Goodtime which got kids from all across Australia, and even some, some from New Zealand who were all HIV positive. And I used to find that it was like coming home, because just the burden of that secret was not there. And it was so refreshing to meet new people. And to not think I can't tell them this about myself. Even if we weren't openly discussing it, it was just so nice to have that sort of taken out of the equation. So that was good. And then when I got a little bit older, I started going into see social workers as well, who sort of gave me an opportunity to have some counselling and work through issues because things come up so quickly when you're growing up as well, like something that wasn't an issue last month might suddenly be really important. So it was just really nice to have an opportunity to talk that through. Heather Ellis:And

    23 min
  8. Charlotte’s Story: A Bali travel adventure changed her life

    21/09/2020

    Charlotte’s Story: A Bali travel adventure changed her life

    Charlotte’s story begins in Bali, Indonesia. Like most young Australians, she yearned to travel and volunteering at an orphanage in Bali when she was 18 years old was a natural step after working at a childcare centre in Melbourne. But orphanage tourism didn’t sit well with her and she moved to Bali’s Kuta Beach and its nightclub scene. Things soon spiralled out of control. But after falling pregnant, she overcame her drug addiction and returned to Australia, where she was diagnosed with HIV. Charlotte now has three beautiful children all born free of HIV. For more details on topics discussed in this episode, please visit:Positive Women Victoria: https://positivewomen.org.au Episode 1: Charlotte’s StoryTranscript / Show Notes Heather EllisHi, I'm Heather Ellis your host on our stories ending HIV stigma, a podcast by women living with HIV, where we share our stories of our diverse lives and challenge the myths and stereotypes that feed HIV stigma are stories as part of the women and HIV tell the story project made possible by Gilead Sciences and produced by positive women Victoria in Australia. Charlotte's story begins in Bali, like most young Australians, she yearned to travel and volunteering at an orphanage was a natural step after working at a childcare center in Melbourne. At 18 years of age, Charlotte had already achieved so much in her young life, and often against the odds. She raced BMX bikes from the age of three was a ballroom dancing champion and crewed on a racing yacht, a sport that took her to those wild oceans of Britain. But all this was just a small part of Charlotte's young life. Now in her 30s, Charlotte has been living with HIV for 10 years. Welcome, Charlotte. CharlotteI was always a go getter. I was always looking for something more. And I was always looking for a bigger rush, a bigger thrill in life. And I had such a passion for childcare and working with children and I just thought, what more could I do than volunteer in an orphanage where I can volunteer my time and my skills of loving children. So, off I went. First off I did a fundraiser by baking slices. And after a couple weeks, I'd had enough money from fundraising I went and I donated the money that I had made to the orphanage. It came about spontaneous and one day I just googled Bali orphanages, and I emailed a handful of them. I got a reply from one and they said, Okay, see you next week. Heather EllisWere you the only volunteer there? CharlotteYeah, it was really bizarre. When I arrived at the airport at about midnight. I didn't speak any Indonesian. And I had only ever been there once when I was maybe six months before on a week holiday with a girlfriend. And I arrived at the airport and there was a strange man standing there with a sign with my name on it. And I thought, well, this must be my ride. So I went over and introduced myself and I got in this strange man's car and off we drove to the middle of a jungle in the middle of the night. It was pitch black and he literally dropped me at the door and said, goodbye. So I walked in and there was nobody there to greet me. Everyone was asleep. So I just wandered around the compound and I was very confused as to what I was meant to do. So I found a bedroom and I just parked up there for the night. And I remember calling my mom and I was like, there's giant geckos on the wall. There's a Huntsman spider in my toilet, and no one was there. And then at 5am, this huge alarm and siren went off, and I could hear all these little children. It was an all girl’s orphanage. And I could hear all these little girls all running and cheering and going into a hall, and still no one came to meet me or introduce me yet. So I followed the noises and I walked into this hall and all these little girls turned and stared at me. Heather EllisAnd so when you got there, what were the children like? What was the reaction to this stranger coming into their life? CharlotteI just waved and said, Hi, I'm here to help. And they all kind of giggled and ran up and started touching me and I had a big bag of gifts of Australian teddy bears and money to buy rice and Washing Machine for them a washing machine. Heather EllisA washing machine. CharlotteYeah, because I realised that's what they needed because these girls were scrubbing their clothes with on a rock with soap and I thought a washing machine would really benefit these children so they had a quality of childhood not washing their own underwear each day. So after about half an hour, the children fussing over me, an adult walked into the room and she said, Oh, hi, you must be Charlotte. Heather EllisThis must have been an amazing experience and amazing amount of warmth and love that they would have been giving you while you're there being part of their life and helping them learn English. CharlotteNo one really spoke much English. It was very broken and very difficult to communicate that they said to me that morning, okay, now you go to school. So I followed all these girls off to school, I thought, well, I guess I'm going where these girls are going. So I followed this group of children to school. Then they had me teach them English to the girls each morning and just be part of the class and joining in sports. Heather EllisHow long did you stay at the orphanage? CharlotteI stayed at the orphanage for a month as I realized that orphanage wasn't what I thought it to be. A lot of these children had parents and had been sold to the orphanages to get money so the orphanage then makes money from tourists and volunteers. So that didn't sit quite right with me. Yeah, so I went with good intentions, but as it unfolded. To me it didn't feel right. So I knew it was my time to move on, but I didn't want to leave Bali. So I headed down to Kuta Beach where all the tourists are, and I thought, well, I've got about $200 in my pocket. How long can this last? What can I do? So I rented a single room which cost me about $30 a month I had no mattress. So I made the most of that and surfed each day, and then I met some girls walking on the beach one day. Yeah, I think they're from Sweden. And they said they worked at a nightclub doing public relations, which I later found out that was to get dolled up and dance around at the front of a nightclub handing out flyers and free drinks to girls. So I got a job doing that. And as you can imagine, it was amazing, great fun to start with. I got awesome accommodation in a hotel, I got to party for free. And it was a whole different world from being in an orphanage. All of a sudden, my life was the night scene and I was living the dream of an 18 year old being paid to party and have fun. And after a few months, I got to know more people and I was really into the tattoo scene. I made great friends with a local girl who was only 14 and she was fully covered in tattoos from top to bottom. And she lived in Bali on her own and was working in tattoo studio. And she became my best friend. So I also started hanging out and you know, I'd get free tattoos and I'd have to walk on the beach and show off the tattoos and that's how I got money for lunch and things. I’d show off the tattoo, and tell the tourists where to come and get it done. And the shop would buy food for me each day. But the longer I stayed in the tattoo studio, I realized something wasn't quite the norm. And I noticed, they would often sneak out the back and they'd be out in the toilet for a while and I always wondered what they're doing and the young girl, she said to me, ‘we use amphetamines’, and the way she pronounced it I believe she said Vitamins as she pronounced the F as a V. So she asked me do you want to try it? It makes you have lots of energy and I was still very skeptical. And I, I didn't see what they're doing. And I avoided it for a few more weeks. And then I thought, well, you know, she seems fine. I may as well try it and it was Ice. Heather EllisDid you know anything about Ice before you went to Bali? CharlotteI had come from a family that don't do drugs, don't drink, don't smoke, just a very, very conservative family of when it comes to drugs and alcohol. But once I tried the smoking methamphetamine, I was just addicted instantly. I didn't know that you could be so addicted and so dependent and this sense of euphoria that was so extreme that you would always be chasing but you could never get that same sense of high ever again. You know, I wanted more, but I didn't have the money. And I noticed the man was delivering it every day. And I thought, well, my best bet is to get to know him if I want to be able to keep using this thing that made me feel so amazing. I became an addict very quickly and I had the mindset of an addict. It literally changed me. You know, your morals change. Your way of life changes in an instant. You live to use and you'll get your drugs, no matter what and by any means that you have to do to get it but for me, I didn't want to have to prostitute myself. I didn't want to have to lie to my parents for money. So I thought, well, you know, this man was attractive. He had the drugs and he looked cool, you know? I was 18. This man invited me to his home village and I've said yes why not here goes another adventure. So I went on the back of a motorbike for five or six hours. He took me to his family's village. And within maybe six weeks we were married. Heather EllisWell, that is very quick. CharlotteYeah, I called my parents I said, guess what, I'm getting married tomorrow. And obviously, I was in a state of delusion, and so drug affected, that I had lost all clarity of making correct judgments. Being drugged took away my anxiety took away my obsessive compulsive disorder that I had battled for years. So, I was just self-medicating and felt free from mental health issues for the first time in a long time as well. So that was also another reason why I wanted to keep taking these drugs. So I married this man. I believed I loved

    29 min
  9. Introducing Our Stories Ending HIV Stigma

    21/09/2020

    Introducing Our Stories Ending HIV Stigma

    A podcast about women, by women living with HIV in Australia to challenge the myths and stereotypes that feed HIV stigma.We share our stories of achieving our goals, navigating and relationships, and our journey through pregnancy and motherhood in this new era of Undetectable equals Untransmittable (U=U). Our stories are real, unfiltered and always inspiring.Hosted by Heather Ellis, a journalist and author, who has lived with HIV since 1995.This podcast has been supported by an unrestricted grant from Gilead Sciences Pty Ltd and made possible by Positive Women Victoria.CREDITS:Host: Heather EllisProducer: Positive Women VictoriaFind more episodes of Our Stories and show notes:https://positivewomen.org.au/tell-the-story/podcast For information and support on living with HIV: https://positivewomen.org.au If you enjoyed Our Stories and want to tell us about it? Phone us on: 03 9863 8747 or email us at info@positivewomen.org.au

    2 min
  • 9 Episodes

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5
out of 5
3 Ratings

About

Our Stories: Ending HIV Stigma is a podcast about women, by women living with HIV in Australia to challenge the myths and stereotypes that feed HIV stigma. We share our stories of achieving our goals, navigating sex and relationships, and our journey through pregnancy and motherhood in this new era of Undetectable equals Untransmittable (U=U). Our stories are real, unfiltered and always inspiring. Hosted by Heather Ellis, a journalist and author, who has lived with HIV since 1995. Contact us at: info@positivewomen.org.au Website: www.positivewomen.org.au/tell-the-story/podcast This podcast has been supported by an unrestricted grant from Gilead Sciences Pty Ltd and made possible by Positive Women Victoria. Listen for free from your mobile device on Apple Podcasts, Google Podcasts or wherever you download your podcasts.

Information

  • Creator
    Positive Women Victoria
  • Years Active
    2020 - 2024
  • Episodes
    9
  • Rating
    Clean
  • Copyright
    © Positive Women Victoria
  • Show Website
    Our Stories: Ending HIV Stigma