Our Stories: Ending HIV Stigma

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.

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.

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 4/09/2020People 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.comEpisode 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 AustraliaGeorgina 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 and find a cave and just yeah, be unseen.Heather EllisSo this was in 2014 and effective HIV medications had been around then for 17 years. And people with HIV were more than surviving, they were thriving, and going about and living really healthy, productive lives. But did you know about these medications? Did you know anything about HIV prior to your diagnosis?Georgina Whitchurch No, no, because, all I knew was years ago with the Grim Reaper, that was the first thing that probably came to my mind was, that's it. I'm out. I'm out of this planet in a few years time.Heather EllisThe doctor would have reassured you about the treatments, I imagine because they would have been well aware of them. And these medications are available in Africa as a generic brand. So were you reassured about the medications? And did that make you feel better about the future?Georgina Whitchurch While I was still in Swaziland? Yes. That doctor was absolutely amazing. And, you know, even though we had a really bad start, while I was in hospital, when I was out and seeing him as an outpatient, our relationship changed. And I certainly, take my hat off to him and the way he then treated me and talked to me and tried to look after me as best he could. And then of course, I was, I was started on HIV medication instantly, even though my CD4 count was very high. But of course, the viral load was also extremely high. And so he started me on medication, even though their rule of thumb was your CD4 count had to be below 300 before they would start you on HIV medication. And mine was over 500. So he started me and I started to feel pretty normal almost instantly. And it was incredible how quickly that medication changed me.Heather EllisWhen you had the lesion on your face and inside your mouth. Was that a seroconversion illness or had you had the virus for some time?Georgina Whitchurch I can't say that I'd had it for some time, but it wasn't really explored. And I suppose because of being in, in Africa, they didn't really have a lot of the testing equipment to go really deep into that. But if it was before, it was well over 10 years prior to that anything could have happened. But of course, there was this interlude with the charming African men.Heather EllisSo was HIV talked about in the village where you're working, and were any of the women in your sewing classes living with or affected by HIV?Georgina Whitchurch I was aware that the majority of them were and I was aware of them getting HIV medication on a regular basis. And because of the organization that I had sort of loosely attached myself to while I was there, and it was mostly through the sewing program, because I was just the teacher, it wasn't my program at all. They ran a service in that country to test and treat, they started off testing and treating children probably about eight years prior to me going there. And then they expanded that service, as they got more money available, to testing all people in that rural location. They had a huge presence out there. And so I knew from them, even though, you know, confidentiality was never ever ever breached. I just knew from them that a lot of the women that I was working with had HIV, but it was never broken about, they did not talk about it.Heather EllisWas there a support group in the village that you could connect with to get that peer support?Georgina Whitchurch When I returned to Africa? Yes. And I had spoken to this particular missionary organization wanting to do something like that. And they indicated that their staff were already doing that. So you know, it wasn't something that I could do. However, in the village where I lived in the compound, the other white people living there, they had a maid who became sick, and was tested and she was HIV positive. And so they asked me to come and talk to her feeling that you know, somebody of my age and my status, etc, etc, etc, talking to her would make her sit up and take note because she didn't want to go on HIV medication.Heather EllisAnd then by you talking to her and giving her that peer support, she would understandHIV is something that can happen to everybody and going on and it's completely okay. It's something that happens, you can take treatments, and you'll live a healthy long life.Georgina Whitchurch Yes. So they were very thankful and so was she, especially after she started taking the medication and felt very different to what she was before.Heather EllisFrom your diagnosis, you were telling me that you then had to leave and return to Australia. But that didn't stop you did it, it didn't stop your volunteering, your passion for volunteering.Georgina Whitchurch I think my passion was just to get back to those women because I had fallen in love with Swaziland and I had fallen in love with those women and what we were doing and what we could achieve and what they could get from it. But while I'm looking at what they can get, I realized how much I got from that particular program. It was amazing, working with those women who they don't have what we have, they don't live in houses with painted walls, etc, etc. And, and you know, everything that we've got, that they are so happy and they just so full of love.Heather EllisWhen you returned to Australia, did you have the support of your family? And did you reach out to the HIV support groups like Positive Women Victoria when you returned to Australia?Georgina Whitchurch I first returned to Western Australia, which is my state of origin and my son was still living there. And so I stayed with him because I'd packed everything up because I was going to be gone for over two years. And so I eventually discovered or managed to get in touch with Western Australian AIDS Council. And so through them and meeting other people, other women living with HIV. It was actually an interesting journey for me, because Western Australia in comparison to Victoria the situation of HIV with women in those days anyway, was very, very small. They only had a very small group of women that were actually registered with the agency. But when we did meet it was really nice to just share stories with other people then out of the blue, I think I've only been with them for a very short time and I was asked, Would I be available to look after somebody similar in age to me who was just diagnosed? And I said, Yes, not a problem, not a problem, any help I can give. And so having done that, and then that sort of crept into a little group of about six women with similar age, and we just started our own little support group because we all got on well together. We used to meet every month or two months, and go to different places and it was a fantastic group. Then I went back to Swaziland. And when I returned, I came to Victoria because my son and my daughter in law had moved to Melbourne. And so I didn't want to go back to Western Australia, because he's my only family.Heather EllisI also want to ask you about stigma, because this podcast is about ending HIV stigma. And many of us have experienced some form of stigma, whether it's internalized, or externalized, or by association. So what has your experience of stigma been?Georgina Whitchurch I think in the very beginning, the treatment that I received from the volunteer agency was very, very, very hard, I was virtually treated as a prisoner, I was not allowed to have any contact with any of the women, I was not allowed to leave my house, except for, it was like, COVID, I could only leave the house if I needed to go shopping or something. And then they were trying to get certain information out of the doctor who was treating me and he refused to give them information because of confidentiality. And looking after my interest, he wouldn't give that information to them. So they then sent me to Johannesburg in South Africa. And again, I was virtually imprisoned, I wasn't allowed to go to many places, unless I told them where I was. They then sent me to a specialist. And when I went there, I had to sign a form to say that he could talk to other people about his findings. And so he then supplied them with the information that they wanted.Heather EllisBut as a complete breach of confidentiality,Georgina Whitchurch Yes. Let me just, you know, sit there and rot virtually my son was on the verge of getting on the plane and coming over to rescue me, when they decided that they would let me go back to Swaziland pack up and leave the country.Heather EllisWere you able to say goodbye to the women that you were teaching? They would have been very confused as to why you were suddenly leaving when you didn't want to leave.Georgina Whitchurch Yes, I did say goodbye.They knew that I was ill, but I don't know that they knew what it was. But you know, they're not silly, they would have known. We arranged a picnic in the park, which we had done prior to that. I often used to take them to this particular place, and we'd buy a cooked chook and a few other bits and pieces, and we'd go and sit and have a picnic. And so we arranged this picnic. And it was, a very, very, very emotional experience. I don't think there was a dry eye out of the whole group, you know, we were all crying. It was very, very hard to leave them and, and then when I went back to Swaziland, it was the opposite. They were absolutely over the moon, they were dancing. They were singing as you know how they are, you know, they dance, they sing to everything. And they just would not leave me alone. You know, they, they were all over me like a rash. And I did not complain at all. It just felt as though I'd gone home.Heather EllisAnd you stayed in for another two years as a volunteer independently and helping these women. And they want you back. Right. So hopefully after COVID you will be able to return to Africa.Georgina Whitchurch Yes, I think I do what I can here to keep myself buoyant and inspired and interested. But I think my heart still over there.Heather EllisWhen you went back did you tell them that you were living with HIV?Georgina Whitchurch They had guessed. But yes, I had told a couple of them. And because I was wanting to share that story with them. Because I knew of them. You know, I knew that. So I wanted them to not see me as, as anything different. We are the same. Exactly.Heather EllisAnd did that bring you closer together as from a peer support point of view? Like, did they see you differently? As more connected?Georgina Whitchurch Some more than others? You know, because there were some who didn't want to disclose themselves to me, but they knew about me, I made sure they knew about me. But there was probably Yeah, there would have been four out of the 10, who we became very, very, very close.Heather EllisAnd that shows how important when there's HIV Related development projects and how important it is to have people living with HIV working in those projects to bring a whole new level of support and compassion to that project and also because of GIPA principles which is the Greater Involvement of People living with HIV working on HIV related projects. When you returned to Africa for two years, how did you manage? This is a practical question for people living with HIV who may want to volunteer in developing countries? How did you manage your treatment like taking medications with you, and having, regular blood tests to ensure that viral load is undetectable and CD4 count remain high?Georgina Whitchurch Initially I was put on to medication in Swaziland. When I went back, I took six months supply with me from Australia, that obviously we get free, which is wonderful. When I ran out of that, I could buy my own exactly the same and after a while they allowed me to get the cheaper version of the medication that I was taking. So I didn't have any problems with that at all.Heather EllisSo how much was the HIV medication costing you per month? And when you were purchasing it in Africa?Georgina Whitchurch I think I was paying about 4000 Rand, which is $400 per month. And when I got the cheaper version, it was 20 rand. I can't ever remember that was it 20 Rand or $20?Heather EllisOh, that's a big difference, because like $400 a month is completely out of line and impossible for somebody living and working in Africa. But $20 a month is manageable. I mean, that's less than $1 a day.Georgina Whitchurch It's a generic brand. And I do believe that Nelson Mandela had a lot of sway in getting that happening.Heather EllisBecause with the medications, people don't die, people live long, healthy, productive lives. Children don't end up being orphans. Parents can provide an income for their families that and people aren't going to transmit the virus. This is what is now called U=U undetectable, equals untransmittable, which is backed by 20 years of scientific evidence, and it was great to hear you comment before about that government is wanting people so many people, more people to be tested for HIV, because once they tested and they go on treatment, then the virus can't be transmitted. And at the end of the day, that's how HIV can be completely eradicated.Georgina Whitchurch I would like to see what the steps are in in Swaziland now. Because there has been, you know, a huge change. Even while I was there, there was a big change with people being tested and treated. So if that continues their numbers going to reduce.Heather EllisWhat's your advice to people, particularly people living with HIV who are wanting to volunteer in a developing country?Georgina Whitchurch Do it just do it?Heather EllisYou actually independently funded your volunteering after your first trip to Africa with AVI, and many of these developing countries it is quite reasonable to live there as the cost of living is so much cheaper than say living in Australia.Georgina Whitchurch It was amazing. Amazing. Absolutely amazing. And I had everything I needed. And that's all we need to live, but I come back to Australia and you've got all this stuff. And you think, what on earth am I got all this stuff for?Heather EllisYeah, yeah, we’ve got to spend so much money on phone bills, internet bill, power bill, gas bill. This is never ending. Like when you add all that up.I just want to also ask you a bit about your new role as chair of Positive Women Victoria. This is a new role that came about this year, I just wanted to know, how do you see PositiveWomen Victoria developing as an organization and how the future of providing support and advocacy for women living with HIV? So your ideas like your big ideas.Georgina Whitchurch How do I answer this. Going into the chair position after only being a board member for two months, or four months, or whatever it was, was a bit of a shock. But since then, you know, I think my brain has gone back to the good old days of managing things and getting involved. And the first thing I really wanted to do was to get the board to be a really close knit cohesive group of women working together as an amazing team. And that is really starting to happen. And so from that, you know, within looking towards the future to what we want to do, we don't have any major plans at the moment. Of course, there is what you're doing, you know, with the stigma,Heather EllisI feel this is the time to really take on HIV stigma, because we've got U=U and that HIV medications to me, are like as good as a cure. Now we're not infectious, you know, and then but the stigma is still left-over from like you're saying before that the days of the Grim Reaper, we're still dealing with that. Definitely. The pandemic has been going now for 40 years and we're still dealing with stigma and there's got to be a time when it all ends.Georgina Whitchurch Our peer support team and services, I think there's going to be some major change next year in that, because we're just going through a process of complete review a very indepth review of support services. And I'm fairly certain that a lot of change is going to come out of that. So, you know, watch this space, I think it's going to be a very interesting journey ahead in terms of how people are contacted, where we take that, and then linking that in with the project that you're running with obliterating stigma would be wonderful. So with PositiveWomen Victoria, we want to keep this organization alive and well and looking to the future with whatever changes we need to make in order to accommodate the people who are members.Heather EllisOne of the initiatives that you are driving is an Over 50s Peer Support Group. Yes. And that makes complete sense. Because now in Australia, of the 30,000 people living with HIV, nearly 50% of them are over 50. So these are such a big group of people. And we're all going into you know, our later years. And there are so many issues with HIV , particularly in the aged care sector and getting the peer support from each other as we age.Georgina Whitchurch Most definitely. And like many years ago, I don't know if any of your listeners would have read Conversations with God from Neale Donald Walsch. But I was a bit of a devotee of things like that for some years. And one of the things that he wrote about was, if there's something lacking in your life, be the source and do it. And what is lacking in my life is that connection with women of a similar age, to me living with HIV, that's what I'm missing. That's why I decided to not even as the chair, but just a woman of this age, living with HIV, I want to get a group, a social group happening, like similar age group that we can, we can bounce things off each other, we can talk about old age, we can talk about young age, we can talk about all sorts of things. And in that age bracket, I think it's really different than having a mix of say 20s 30s 40s, and then the over 50s. So that's the reason for that.Heather EllisYeah. And that’s wonderful in supporting each other to achieve our dreams, because we've got another 30 or 40 years of life, it's like a new chapter of our life. So as we begin this new chapter, it would be fantastic to have that, that peer support to encourage each other and our ideas and dreams and, and even go volunteering in a developing country. So you've got all this knowledge. So as the next chapter begins, we never run out of things that we can do.Georgina you are a real inspiration for women living with HIV to get out there and follow their dreams and turn those dreams into reality. But finally, I just wanted to ask, why do you feel it's so important for women living with HIV to share their stories.Georgina Whitchurch Women have always supported each other and talked to each other. And I think we need to get this out there so that we can be seen as normal women and you know, have our story there and not feel embarrassed about it and not feel as though we're ugly, or we're dirty, or we’re sub-human because we carry this thing for life. But you know, women have always supported women. And yeah, I just admire all of my women friends who have supported me, as I have supported them. It's very important. Yeah. And I think we have to keep Positive Women Victoria alive and well. And it is a unique organisation. I believe it's the only one of its kind, most other HIV organizations are mixed gender.Heather EllisAnd we also need to remember that of the 38 million people globally living with HIV more than half of them are women. And, that's something we always need to keep at the back of our mind that we are not alone, and we are really a very, very powerful force to be reckoned with.Georgina Whitchurch Yeah, it's always concerned me the number of women who are falling victim to HIV because of heterosexual relationships, and not necessarily heterosexual relationships with their partner. I think that's what's happened to many, many of the women I know.Heather EllisYeah, particularly the older women where they've been married for many years, and there's a secret their husband is out there having with other men. There is now PrEP, pre exposure prophylaxis where people can take this medication and it will protect them from contracting HIV that's freely available in Australia.Georgina Whitchurch If you're in a long, long ongoing relationship with one man, you're not going to take PrEP. Why would you? People do need to protect themselves. And it's interesting that we were talking about this in the time of COVID, because, you know, a lot of people have done exactly what they have to do in COVID. But a lot of people don't do exactly what they have to do to protect themselves with some sexual activities.Heather EllisSo yes. It's like COVID we've proven people will wear masks people who use hand sanitizer. We just need to get them using condoms. Definitely. Okay, Georgina, I thank you so much for sharing your story today on Our Stories Ending HIV Stigma.It's been fantastic speaking with you and you’re such an inspiration. Thank you.Georgina Whitchurch Thank you, Heather. And I hope that this podcast works and people do listen to these stories and take notes. Take notes, and protect yourself.Heather EllisIf you've enjoyed this episode, be sure to subscribe so you can listen when future episodes are posted. Please rate and review this podcast and share it. Our Stories is part of the Women and HIV Tell The Story project made possible by Gilead Sciences through the Gilead Together Grant program and produced by Positive Women Victoria, a community based support an advocacy organisation for women living with HIV in Australia. I'm Heather Ellis. Thanks so much for listening. Isn't it time we ended HIV stigma once and for all.For more information about this episode, visit www.positivewomen.org.au

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: 13/10/2020Heather 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 luckyHeather 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 soHeather 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 was in love with him.Heather EllisThat relationship fell apart at that point and then you move back to Melbourne. Was this to get support from your family as you when you received your diagnosis of HIV and not knowing anything about it, and in fact, probably thinking this is a death sentence not being aware of the treatments that were available. So what happened then when you return to Melbourne?Sarah FeaganYeah, it was certainly wasn't for family support. I was coming back with my tail between my legs. It was Yeah, I need my mom. I need my dad right now. But it was that I've lived this independent life and I thought that I was just kicking goals and then to come back with HIV and go, I really hit rock bottom. And so it was a tail between the legs. I was depressed. I was fearful. All of those feelings even though I was told Oh, it's a great year to get HIV. We have so many medications. It's okay. And it's so not okay. You've just been told you got HIV. I don't care if it's today. 10 years ago, 20. It's still a scary life altering moment that you are so alone, and it doesn't matter if you're in a room full of people. You are so alone and you're the relationship Breaking down. I've just turned 21 there's so many things happening that I thought I knew where my life was headed and all of that got taken away. And so I got back to Melbourne. I told my sister, and then there was a night when my parents were out and I took a drug overdose and my sister actually found me in the bathroom at our home and rang hospital and was taken there pretty quickly. Don't remember that much as I was unconscious. And yeah, I got woken up to this kind of why didn't you tell us: You're my baby, we love you. Because while I was in an induced coma, or they were doing whatever they were doing, the nurses said: Oh, do you think that this drug overdose was related to her recent HIV diagnosis? And my parents were like, what?I knew nothing up until that point. And so that drug overdose was related to really it was related to self stigma.I was fearful. I was lonely depression, and it's that moment of 21 and thinking, you know what, I've done pretty good. I'm pretty feeling really good and I just felt like I'm on this right track and then it was that fear of wow I'm going to be unloved untouchable unwanted this is just going to affect me so much. My life is over and so I just thought why hang around when I can end it now which is a horrible place for anyone to be in.So obviously my family support and friends you know, Mom and Dad but just amazing my family, my sister, my brother, friends that were around me really special as well and I kind of started to get the idea that I would be okay. I engaged with some HIV community organisations started meeting other women especially it was just the best thing to do. Now I thought, you know what, I've been through some stuff in my life. I can get over this. I'm a strong woman, a young person. I got the rest of my life. My family loves me. I got good friends, I can do this. So I kind of re-entered into society. I can't tell you specifically how when and where because it is such a fuzzy time. It was me trying to engage in relationships and as a bisexual woman or woman, and date men and women, and, you know, I experienced violence, I experienced stigma I experienced, you know, so much rejection and hurt. I had people saying that I was trying to infect the whole of the community in Melbourne with AIDS, stuff like that.Heather EllisSo this all came from really an enormous amount of ignorance from people. So this is externalized stigma, they put their fears about HIV onto you. But by educating them and explaining to them about the treatments, did that change their attitude?Sarah FeaganI was on intermittent treatment. So back then they would wait for you to start treatment to your CD for was down to 250. I can't remember I think I'd started and stopped a few times, because it was just that process of being a very sexual person and a person that loves to be around people. Have fun and all that stuff. So those conversations weren't even there about treatment as prevention or U=U undetectable equals untransmittable. So we didn't have those tools it was basically use a condom. And that was it. That was the safety. You know, it was a different dialogue to be had but also being so newly diagnosed, I wasn't educated myself, I was still dealing with my internalized HIV stigma. And then when somebody would front me and say, you're trying to do this to us, you're trying to infect us with HIV, you're this , you're this awful person. It gets to a point where you just like, you know what, I'm angry. So I took their hands off, sort of I described it as taking my hands off the steering wheel and just waiting for the car to crash. I stopped all my HIV medication. I wasn't in a position to be educating people because I was just petrified myself and so I just let HIV do what it did, and just went back to taking lots of drugs again.Heather EllisSo you got into a very low point where you were in hospital and about to die. You had full blown AIDS. You weren't taking treatments. This was sort of the end the things. So what happened for it to then turn around for you.Sarah FeaganI think I was really lucky. You know, being young probably is the one thing that saved me. But yeah, basically I just stopped my medication. I was taking a lot of drugs and yeah, my parents, you know, some really important community members as well going, Sarah, what are you doing? Wake up, wake up and I actually woke up to my HIV specialist sitting at the end of my bed telling me if you're going to do this, let's come to hospital and we're going to put you into palliative care. I don't remember much else apart from getting a psychiatric clearance and my mum collapsing and me saying yeah, I'm good to die. You know, like I’m a 25 or 26 year old young woman with a completely manageable chronic illness. This just speaks to the volume of what HIV stigma can do and how things are cruel to somebody. You don't even realize the impact that it's having. I was no longer Sarah, I was that girl with HIV and she deserved, you know, it was just no one saw me and I was you know, I took a I was given morphine as an emergency and I'd watched some family members go through palliative care. And I kind of knew in that moment that was it. And you know, I couldn't even speak after the morphine hit me and I don't know what happened in that time. But you know, I woke up.Heather EllisSo this is around 2010, but we are eight years away from U=U . And that has been such a game changer in helping to end HIV stigma because it's backed by more than 20 years of scientific evidence. I mean, the treatments that we take today are really I like to describe them as being as good as the cure. Because we can live a long healthy life.Sarah FeaganWe've known about it for so long you think women have been giving birth, positive women HIV positive women giving birth to children, breastfeeding, all this stuff taking treatment. So U=U has been used, I guess it started, like, you know, not by accident, but just because well, women around the world are still going to have children and that was I guess, the beginning of U=U because there was the understanding back then, you know, the different studies with numerous different sexual acts and zero transmissions. It's such a game changer. It's such a liberating moment to think, because I know so many people with HIV, that's one of our greatest fears is to give it to somebody when nobody wants to give this to anybody else. So it really does.Heather EllisWe've talked about internalized stigma, which is self-stigma and externalized stigma, but there's also stigma by association. So what has your experience been of stigma by association?Sarah FeaganDo you mean like for people around us like for partners? me see I was married for five years, but you know, like recently separated really good mate with the guy but you know, he came from a multicultural background and as much as his family loved me, I'm sure if they knew my HIV status they would want me around their son just because they love their their son so much more. And so you know, I did have to go back and I was quite open about my status for many years and then all of a sudden being in this like, you know, serious relationship monogamous marriage, it was no longer my virus, it was about going okay, well, HIV stigma impacts everybody differently and now he will be impacted directly. So you know, I would have to adapt and change and kind of go back into the closet a bit. Even same with my family and some friends you need to be mindful of disclosing too much information in certain forums or be mindful of protecting other people because your HIV status does impact the people around us as well.Heather EllisYeah, it shows how far we still have to go with ending HIV stigma, it really does. So you're now a HIV Peer navigator with Living Positive Victoria and peer navigators are a fairly new role in the HIV sector. So what is this role? And why is it so important?Sarah FeaganPeer navigation, I guess it's a very similar to peer support, basically, but it just means that we have a lot more clinical relationships. So we work in higher clinical caseload clinics in and around Melbourne. And so we have these really great relationships and I kind of feel like my role is appears to be a woman living with HIV. That's cool. My lived experience can also be a way that we can act as peers but I'm also given a lot of training and support through Living Positive Victoria and then also have the opportunity for really great partnerships. So I have this amazing network that I can get people through to different service for clinicians, psychologists, everything that somebody might need in their HIV journey and I absolutely love the job. I'm on the phone all day talking to these beautiful community members that are in different stages their HIV diagnosis some people's thriving some people you know, needing that little bit of extra care at the moment and it's great that I'm in a position to offer that.Heather EllisPrior to peer navigators when people were newly diagnosed, they would speak to a HIV nurse, be given a few pamphlets and basically just sent on their way and they were really left to fend for themselves. But now there is such a strong understanding of how important that peer support is particularly for the newly diagnosed would you agree with that?Sarah FeaganTt is so important. We know the power and importance of peer connection, because no one else can understand that moment of HIV diagnosis, what it feels like. And even peer support is important. Okay, navigation is, as you touched on about people affected by HIV. So partners, kids, friends and family members have to also do support. But you know, we have people that have been positive for 10 years, and then they'll connect into the program and just go: Why did I wait so long?Heather EllisWhy have these people waited for so long people who have been diagnosed with HIV for 10 years and just haven't reached out for that support?Sarah FeaganIt is so complicated. People's lives are complicated. Some people don't need it, they get diagnosed, they take their HIV medication, they're okay. But I mean, it's also internalized stigma, external stigma, domestic violence, or it could be culture, religion. There's so many different factors of why people don't connect to the HIV space. But I know once you see people break through that fear or that feeling like they don't belong, or that they're not part of a group of men or and they see the diversity that we are as a beautiful community within Australia, within our region as well within the world. It is really great to see people lift that black cloud. They just feel like oh, like I’m understood. I say you’re part of your community. These are your people. And that's the moment that I wish everybody living with HIV would come and connect into. Yeah, oh, we're a big community as well. We’re 38 million people living with HIV and half of us are women. So we're a big community,Heather EllisSo you're also a HIV leader and HIV advocate. You're vice president of the NAPWA (National Association of People with HIV Australia and also have a role with NAPWA’s Femme Fatales group, which is the women's advocacy group of NAPWA. And you've become an international HIV advocate as well. What do all these roles mean for you? You've come from this place where you’d given up like you said, taking your hands off the steering wheel and now you are one of the most dynamic HIV advocates for women in Australia, if not the world?Sarah FeaganOh, stop. Heather. But it's exactly that because I was there I was at that moment where I wanted to stop. And I had, like, there's been a few really pivotal people that I've met through the HIV community that kind of gave me the kick up the that I needed like friends and family can do so much when there's another person that has gone through exactly what you've gone through, going on. You're right you know, I live in a lucky country I have access to HIV medication. I was sitting there feeling sorry for myself, and then I realised come on, use this privilege. Use this moment to engage and contribute and give back or whatever little bit I could do. And you know, like, I'm really lucky that I had been previous Chair of Positive Women Victoria, and Living Positive Victoria have taken me on doing health promotion and peer navigation and the board stuff that I do. So that's also with the ICW (International Community of Women living with HIV, Asia Pacific) and also the national, regional, and state based work that I'm doing at the moment, and I love it, you know, half voluntary, half paid, and I'm so lucky that I can have that balance because as positive peers and advocates, we volunteer our life away. And so that's important to make sure that we can support ourselves and thrive but I think it is just knowing how I felt and how low I was. And then I think meeting other amazing people around the world and people in Australia. Everything. It's just the resilience and the strength and the grace that people have in our HIV community. It just inspires me every day to wake up. And I might not be doing the most amazing things in the world. But I'm definitely trying to give back and contribute to these amazing communities.Heather EllisWould you say like you saw the need there, because with 38 million people living with HIV in the world, and nearly half of them women, but there's very, very few women openly living with HIV. And not only are they openly living with HIV, but actually being leaders being advocates to raise awareness of the issues that women face. So I mentioned you would have seen an enormous need there. And then you were put into the positions on the board of Positive Women Victoria, the Chair of Positive Women Victoria, so it's fantastic that now you've stepped up and provided your skills and your experience to do so much good.Sarah FeaganThank you. I think that's very true. Just saying in Australia when I kind of dealt with my stuff and was kind of ready to start engaging, I really didn't see many positive women in Australia, openly living with HIV. Globally, though, I've been so fortunate to meet just dynamite women that are facing persecution and fear and just living in the most extreme situations, but they're still defiantly standing there and saying, I'm open to be a woman with HIV and I ain't gonna take this no more. And they're doing amazing work. And I think that inspires me as well that I saw little people around the world can do so much. And I think that we can learn a lot from our brothers and sisters in less fortunate countries than Australia about how to really do some meaningful work. But, it's great to see now since that time, when I was engaging, I can name over two handfuls of women now that are openly living with HIV or that are engaging and that it really stepped up so it's really nice to see new faces like, young girls do this?Heather EllisYep. very encouraging, especially the younger women, the younger women stepping out, which is fantastic. I mean, another thing that people I don't think realize in the general public is this still around 700,000 people die every year from AIDS, and this is completely preventable if they could get HIV treatments. So in this time of COVID-19, you know, they will eventually find a vaccine and that vaccine will be rolled out to everyone. So if the world wanted to, we could make sure that more people got access to those treatments in these developing countries. How do you think we can do this? Sarah FeaganIt's a big question and a big problem because we are dealing with a lot of corruption, religion, endemic human rights violation, violence against women as well it is, it is not a one size fits all. Some countries are just so corrupt that it doesn't matter how much money medication is thrown at them, it will never go into the hands of the people. You know, I think the biggest thing that we can do is continue to lobby pharma, continue to lobby governments. And also just you know, we've got to also support the people on the ground, you know, currently in Indonesia, which is a country that is very close to Australia. And they've having massive medication stock outs.Heather EllisAnd PNG in Papua New Guinea as well.Sarah FeaganThey're having a new system of how the government's just rolling out one type of HIV medication for the whole country. So if it doesn't work for you, too bad. But in Indonesia, and in PNG, as well, there are incredible activists, advocates, powerful, powerful people living with HIV on the ground that are fighting. And I guess the best thing to do, especially if this is something that you want to contribute to or be a part of, is reach out on Google, and search HIV organizations and contact them and say, Hi, look, I'm from Australia. I want to contribute, what can I do? How can I help you need me to write a letter or whatever it is, There's ways to connect. And it's about, exposing the incredible work that people are doing in their own countries and trying to bolster that as much as we can with the privilege that we have in Australia. I mean, we have internet and electricity and little things like that, that really help.Heather EllisThat's right. Just don't take our foot off the accelerator. Just keep the pressure on. I mean, the advocates that have come before you for in the 1980s and 1990s, it's just continuing it hasn't it stopped, that fight hasn't stopped. And it's not just about ending stigma. It's about getting access to those treatments to those 700,000 people who die every year.Sarah FeaganExactly. It's just you think we are 40 years from the beginning of the HIV pandemic and it is not over yet. Yeah, it is a shame that it's still used as a bargaining tool that HIV medications that are life-saving are still used like this on different communities.Heather EllisI've heard you speak a number of times and there's a some words that you use and every time I hear you say them, I just feel a shiver run through me. You say: “It's no longer about living and surviving with HIV. It's about thriving.” Can you tell me more about what that means for you in your day to day life?Sarah FeaganI'm glad I give you shivers back to you. I love that thank you. It is I think, I have lived with HIV functionally lived with it because I felt like I needed to because I love and support around me. I'm thriving with HIV now. I'm as happy and as unhappy as any other person in the world. I've you know, I live my life highs and lows and HIV doesn't impact at all what I do. HIV stigma is does exist. I can deal with that a lot better now. I'm stronger. I'm confident. I will sit you down and educate you until you get it, like I just live in on what I'm thriving with HIV. My medications work for me. I have a great job. There is no physical reason why I can't live a normal life, and that's because of great HIV treatments, great support, great community, great opportunities. But in developing countries, people with HIV are living day by day, they don't know when they can get their next dose of medication. If it even really works for you or HIV is constantly being used against you. You just live with it, you have to live with it. So this kind of sits in my back pocket there reminds me to take my medication and just live. HIV is really not a barrier to my existence. In some days. It makes me work harder and want to do more and live better.Heather EllisWell, thank you, Sarah, so much for sharing your story today on Our Stories: Ending HIV Stigma. Is there anything else you'd like to leave us with?Sarah FeaganOh, thank you so much for having me on it. And if anybody wants more information about the peer navigation program, or any stuff we were just talking about, happy for you to share my email. Stay well. And thank you so much for the opportunity Heather.Heather EllisIf you've enjoyed this episode, be sure to subscribe so you can listen in future episodes are posted. Please rate and review this podcast and share it. Our Stories Ending HIV Stigma is part of the Women and HIV Tell The Story project made possible by Gilead Sciences through the Gilead Together Grant program and produced by Positive Women Victoria, a community based support and advocacy organization for women living with HIV in Australia. I'm Heather Ellis. Thanks so much for listening. Isn't it time we ended HIV stigma once and for all.You can contact Sarah Feagan at: sfeagan@livingpositivevictoria.org.au For more details on topics discussed in this episode, please visit: Positive Women Victoria: https://positivewomen.org.au

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/podcastTRANSCRIPT / SHOW NOTESBATSIRAI StoryHeather 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 20Heather 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 your situation for finding out. For having a HIV test?BatsiraiSo with me, because I grew up in Africa. Sometimes I feel like it was a blessing in disguise because I was dating this guy, and he was always a bit sick in very suspicious ways. He would get antibiotics for different things and wouldn't really get better. And then he was losing weight. And then there was an incident with an STI incident with us, between us and then yeah, we went to a sexual health center and the funny thing they didn't reinforce the whole HIV thing. He got treated, I got treated, but then it started making me think. Like my brain took me back to Africa. I was like, wait a minute, go back to a where you grew up? What was happening as a young child? If we did have unprotected , what would you have done? That's when I went back in retrospect, it was like, I just felt like something wasn't quite right. And because we had that STI incident. We were actually breaking up and I felt we needed to get tested. I went and got tested, actually, without him by myself. Because I had my suspicions. And then yeah, it was positive. And that would have been the positive test after two negative tests. And I hadn't been with anyone else. It was a shock. And then I told him, and then he was shocked. You know, I'm Australian. Where is this coming from? And yeah, it was really a lot of back and forth. I was like, we can go back and get tested together. And I went back again with him and they found that he was way advanced and they suspected that he was at least 10 to 15 years into his diagnosis because of the damage to the immune system and they could tell that mine was quite recent. Yeah, when we still talk now he's always like, Oh, you saved my life because I think I would have just broken up with him and went on with my life and with my HIV and would have been stuck with it with the culture here not to get tested and maybe pass it on to several guys, but I just thought back. What would Batsirai do in Africa. So I went and got tested.Heather EllisYou went and had this sexual health checkup with that STI incident with this guy, but HIV wasn't included in that because in Australia it's like an opt in rather than an opt out. And this is one of the things that Positive Women Victoria and also the other HIV sector organisations are pushing for. They want that sexual health check up to include testing for HIV. And like you were saying, it was so lucky for you that you thought back to what was happening in Africa and you had seen these kinds of illnesses before and it rang an alarm bell for you. But for many other people here in Australia, it wouldn't have even crossed their mind.BatsiraiFor me, I think it was that historical background I had, because initially when they were like, Oh, do you want to have an opt out? I actually opted out for the HIV test. But then I went back and then I thought about it. I was like, No, I have to go and because we were breaking up and I said I was going to be in another relationship. And I wanted to have a clean slate because that's what people in Africa do so I want to be checked as well. And the GP almost refused me the test. She said you are a young woman, you go to university, why would you want to do that? I would test everything else. I've done that. Then I was like, no, I insisted on it. So this GP ended up doing the HIV test on me and it came back a positive test and that ended up being her first ever patient with HIV that she's seen and she was panicking.When I went to get my results they kept moving me towards the end and I almost felt like something is very wrong here. So she was panicking, and it didn't even help the situation. So it was very, almost kind of traumatic, to be honest. Yeah. And that part, it almost made me think about back in Africa where you almost feel like you are prepared. You go through the pre-test counselling if you ask for an HIV test. You have to have a pre test counseling session as to why they assess your risk. And then when you have it afterwards, you go through the post-test counselling. So you almost feel like you've got some skills to deal with the reality of it. Yeah. And the relationship didn't work. Then I moved on. Of course, I met someone else.Heather EllisAnd you've got two girls, and their father is negative.BatsiraiYep.Heather EllisAnd like all mothers who are living with HIV in Australia, who are on treatments, no child has been born with HIV. And that was the same with your situation. But I'll imagine at that time, you didn't know anything about when you got pregnant about having babies. I mean, it would have been you wouldn't have known anything about the advances with HIV treatments and now it was quite okay to have a baby and women are having natural birth.BatsiraiYes. Having been raised in Africa and having the knowledge about HIV. I feel like it was also a blessing in disguise. Because even back in Africa, when were there, there was women that were having babies and they'd introduced that first HIV medication that was making people very sick. Nevirapine. It was given to women back in Africa, there wasn't such an interest from the western. So you'd have all these non-governmental organisations that were coming, doing all this research with these mothers and trying all these drugs. So when I decided that I made this person and that's the pathway, I wanted to go down, I did my research and find out what Australia did. And of course, I wasn't happy. But I almost felt like I was a guinea pig and I think that was the worst time in terms of my diagnosis because it felt really real then suddenly they were talking about I had to go on treatment because when I was diagnosed, I was almost undetectable. And I had a very high CD4 count. So they told me then that I didn't need to be on treatment, but because now I was having the kids, I had to be on it, I think from about 20 weeks pregnant. But then I was just navigating the system and there were all these assumptions and the stigma then. In the carelessness where people just disclose your status due to the wrong assumption, and I felt like more like a guinea pig. My first child was born in 2011, which was at least four years post diagnosis?Heather EllisWomen living with HIV on treatment and with an undetectable viral load all around the world are breastfeeding. In fact, the World Health Organisation recommends breastfeeding in developing countries and in Switzerland and the UK women are being supported for breastfeeding. And here in Australia, we are about to release breastfeeding guidelines. So we've come a long way with women living with HIV and becoming mothers. So what was that like for you in those early days of having children?BatsiraiBecause formula feeding is such a Western thing to do and in Africa, it’s not really a thing that women do. So even having a diagnosis here you're not breastfeeding. It causes so much anxiety for women with HIV. I remember when I had my kids, we had to stop people from coming to visit me because the questions were endless about why I wasn't breastfeeding.Heather EllisWhen you were in the health system with your pregnancies, you were telling me those assumptions were made about how you were infected. And so was that just because the health care system had very little knowledge of HIV and pregnancy with women living with HIV?BatsiraiYes, I think so. They also really reinforce some assumptions. You know, sometimes you internalise some things you grew up being told or what people were saying about you. So it was kind of thinking about those racial things like being black. And now there's HIV and it’s almost like oh my god, that is so true that this is where HIV comes from. And then when you go into a healthcare setting, and the first thing they ask you is: ‘so it's this African man that gave it to you’, and like, they haven't even asked me. So it's sort of like it, it makes you question a lot of things. And they even assuming that: ‘oh, I hope you're looking after yourself and not giving it out to people’. And I'm like, wait a minute, I actually know a lot more about HIV than you do. And I'm the one that actually initiated it first, and someone's life was saved here. So it was actually yeah, quite confronting, but it's not everyone and then there's some that it gets an interest with them. These are those also caring, but also, I think it also reinforced the messages and their lack of knowledge among health stuff about HIV.Heather EllisSo this was your journey through the healthcare system here in Australia?BatsiraiOh, yes, because I remember one incident, I had just given birth and I was tired. I was just out of sorts and I asked for the nurse or whoever. And she came to me and all I said was: ‘Oh, I'm pretty upset and I don't feel really, really good’. She was like: ‘Oh, are you upset because of the AIDS’. And that had nothing to do with that. So there was the emphasis on the HIV more than anything else.Heather Ellis Was this your first experience of HIV stigma becoming a new mother and through the health care system?BatsiraiYeah, yeah. Then I've even put salt into the wound when I told her: ‘You can't even breastfeed.’ And she was like: ‘you say what?’ So there you go. So people are just not educated. I think there needs to be more education.Heather EllisDid you have any support from the HIV sector from organisations like Positive Women Victoria?BatsiraiYeah, when I was diagnosed in 2008. I reached out to Positive WomenHeather EllisFrom when you were diagnosed to when you reached out for support, that was a year. For all of us when we diagnosed, it's such a scary time, a time when you're alone. You don't want to tell your family, you don't want to tell your friends. You don't want to tell anyone, but that entire year going without any kind of support, anyone to talk to you. I mean, although you would have been talking to your HIV health care team, but did you talk with your family? Did you have your family support at that time.BatsiraiFor me, I was in Melbourne but my family was back in New South Wales. So when I was just here for university. I remember when I got the actual diagnosis, and I went home, I just used to cry myself to sleep for almost that year. I just didn't tell them. I was actually just felt like oh my god don't be disappointed. Those you know, those I felt like I disappointed them those messages they were telling us abstain, use condoms, and stop doing that. So there was also that sense that shame and I just I just couldn't tell them. So the only support I had was, you know, this person I was in a relationship with and contracted from so I think I sought support in him, you know, he also sought support in me because his family, his parents originally from another State. We were both so alone, so I think we just supported each other. I think I was grateful for that year, which is we supported each other here and to get well on treatment and all this stuff. So I was outside of that, I'll just go on the website look to see what other women have done. Yeah. And the doctors kept telling me Oh, we'll see you like once or twice a year. So we do. I was just left with this. I didn't even have that much support from doctors. So yeah, it was awkward to be honest until I reached out to Positive Women Victoria. Yeah, I met this nice lady and she talked about Oh, why don't you connect with positive women and I just did and that's where it started I reached out.Heather EllisAnd that was when treatments were so effective and for many people, it’s just one tablet a day, and they go to the doctor like once or twice a year to have everything checked, bloods checked to make sure viral load is undetectable. Everything's working fine with the treatments, and they pick up a new prescription of pills for the for the next six to 12 months, which is so different to what it used to be like, I mean, that's how effective the treatments are today. So what was the turning point for you to reach out to Positive Women? Was it reading stories about other women on the website?BatsiraiYeah, there was a lot of women that I remember when I got the pamphlet. I also got a book that was written about women's stories, seven women's journeys. I forgot the title of the book. So he talks aboutHeather EllisBlood TiesBatsiraiYes, yes. So it gave me hope. And because I've always wanted to be a mom, they talked about then there was that book Blood Ties and another one about women having kids and other books. So that was pretty good. Yeah, she gave me those two books. And gave me the contact numbers, I put the contact numbers away and I just read the books. And I was in Australia, these women Australian and so it gave me hope that families out there they are women that are going about their lives that have found a way to live with HIV . Yeah, I don't want to call them normal lives, but just find a way of managing it. So actually, that really helped me those books and then I just called and I spoke to one nice lady and she set up meeting with me. And that was the beginning of it. I went to dinners and I think that's very important to any person, especially women because sometimes there's an assumption that women don't get it in Australia. So that peer support is very important. I know, for myself, I would have like a dinner here and there because I'm still trying to work out my life trying to get like I had, I think I had like two jobs and I was almost finishing university, but I just knew that I had this group well to go and just feel safe and talk about that part of my life, which was so hidden.Heather EllisDid you reach out and get support from your parents?BatsiraiNo, I only did that when I found this next relationship. Um, yeah. So before when I met this person, that's when I sort of like, started talking to purpose and I shared this with my parents. And my mother was just like, oh, why did you go for this time without telling us?Heather EllisYeah, that's Yeah, that's the same with me was like, Why didn't you tell me?BatsiraiYou can't live holding such information, but I could tell her face she was quite heartbroken. I don't know what it was because she felt for me that why did you not trust enough for me to know? Like, what really was the worst feeling? And then she gave me a hug. And then I think my dad cried a little bit, because I think he just went back to what was happening in Africa or like, Oh, I'm gonna lose my daughter type thing.Heather EllisAnd then over time, the family they understand through education and through understanding about the treatments. The other issue here in Australia with migrant community is that the stigma is very bad. It's an issue for everyone living with HIV. But it's particularly an issue for the women from the migrant backgrounds. What is the situation with African migrant communities? And how can we overcome that stigma?BatsiraiWell, it's a huge thing. And I think that's one thing, but I think it motivated me to seek out more to Positive Women Victoria even try and make a difference. So I got employment, got to work for them. They're working with supporting women living with HIV. And I think part it's very, I don't want to speak for all African women or migrant women, but I know being an African woman, and there's a common thread when they come here. I think getting a diagnosis, it almost shocks them, you know, you're trying to navigate being somewhere some people feel like they don't belong, and then you have this thing on top of that, and if there is some racial connotations to it, you know, the feeling like oh, only black people have HIV and stuff like that. So some women internalize that the layout of stigma within them, which may or may not be true, you know, you just landed and now it's you feel like it's a confirmation of your internal stigma and I think it's also about the culture, the external culture, the external stigma that the HIV hasn't been normalized. I think that's a huge, huge pain that you feel like it's not there. So, obviously, a women from Africa thinks: ‘I'm so different. Where am I going to get support?’ Yeah, I think it's about addressing the other structural things like the external stigma, because like I said, when you hear it's never talked about you don't see it on the billboards you don't see it being talked about in ed class. So when it happens, yeah, you're bound to feel alone. People frown upon people that have it in even with Australian history as well, you know, with men and how they viewed HIV. So there's a lot of that. Like HIV came from Africa or maybe men, or it's already highly stigmatized, and it's in their culture. I think it's very hard when you're coming, even from a different culture to have it, because yeah, there's another layer to it,Heather EllisFor these women, from these migrant communities who come to Australia, a lot of their support is from within their community, their family, their church, their friends, within cultural community. So if they're diagnosed with HIV, and people find out about them, what will that mean for that woman?BatsiraiAfrican communities are very diverse, and one thing even religious as well. And I remember, churches would always say that, it's dirty, you it's punishment. So when you do get a diagnosis, it can actually confirm those things. And if your family has those beliefs, it can be hard. But I think on a larger scale, people just don't have that support for a lot of people that come here. I'm very lucky that I kept with my family, I had that support. And that really helped me. Sometimes I can imagine if I was just here as a student by myself, and I got a diagnosis like that, even really, I think it'll be a different story in terms of family, because that plays an important part. Yeah. At the end of the day, they'll (family) come around.Heather EllisSo what can we do to overcome that stigma? Do we involve the church leaders in helping to educate the communities about HIV and also part of that is U=U, which is undetectable equals untransmittable because of the advances in HIV treatment. So people with HIV who are on treatments cannot transmit the virus. Is U=U making a difference in helping to end stigma in these multicultural communities?BatsiraiUnless we put it out there, you and I already know what U=U means because we know what's happening in the HIV sector, but people in the general community, they're not aware of that. I've got sisters and sometimes I'm even shocked by what they don’t know. I say you should also look after yourself and go get a test. And I still think it is lacking, I think I first that has to be present the actual outside community for people to just normalize it and then also working with people from other cultures in a meaningful way and it takes effort and resources to understand because HIV when you get it, people feel like it's very intimate, so you're sleeping around, you're doing these things, before marriage. So there's anything in Australian culture where maybe it's the opposite of that so that sometimes it's a clash of values and beliefs. So if there's an outside, external community way where everything is normalized where we talk about U=U then those elders can be like, all right, I saw an advert. Then when they are treating the family member, they can be kinder because they are informed.Heather EllisWhen you were a teenager growing up in southern Africa, sexual health education was a big part of your curriculum. But here in Australia, sexual health education is not part of the curriculum. It's up to the school to actually include ed in the curriculum. And here in Australia, many HIV organisations have people living with HIV as part of a Positive Speaker's Bureau where speakers go into the schools and help educate the teenagers about sexual health and HIV. But particularly now during COVID-19 this whole year of 2020, high school students are not getting sexual health education at all. We've got a long way to go to get the U=U message out to the community and especially to young people, and the best place to start is in high school, where often there are people from all different cultural backgrounds attending that school. And hopefully they would take that message back to their families and their community.BatsiraiAnd I also think that a lot of people that come here when they come to Australia, I think there's that assumption there is no HIV. I even get this message from some of my African friends. And that's sort of kind of the assumption. It just builds in with those communities, even people that are supposed to be your elders can also have those assumptions. They're not educated.Heather EllisAnd the idea is to keep the education there and keep people aware and keep it in the forefront of their mind that this is something that can happen.BatsiraiYeah, exactly. Exactly.Heather EllisWe have a lot to learn from Africa because they have had that sexual health and HIV education campaign.BatsiraiYeah. Even people that are outside they have families or people that have been with HIV, their friends. It's such a huge burden to put on people living with HIV to be the people that do this education. So I think there's more to be done in helping other migrants of different cultures. Even in the Australian culture here for women though the advocates for ending HIV stigma.Yeah, I actually was reminded when my doctor was sharing with me things related to HIV in Africa, because he's got an interest in that. And he shared with me a video of young people that are now in the adolescence they were born living with HIV, and now they're mobilizing the community and it was like it's so powerful coming from people that were born with it, and it wasn't out of their choice, but they actually leading the way to debunk the stigma. Because they are saying what do you want us to do? We are born with this. There's no blame there. So they actually putting the message out there.Heather EllisBatsirai, it has been wonderful speaking with you today. I thank you so much for sharing your story on Our stories, Ending HIV stigma.BatsiraiThank you for the opportunity. I think this work is very important if we're going to move forward and address external stigma and just make a change. So I'm very privileged to be here and have you share my story. So thank you so much.Heather EllisIf you've enjoyed this episode, be sure to subscribe so you can listen in future episodes are posted. Please rate and review this podcast and share it. Our Stories is part of the women in HIV Tell The Story project made possible by Gilead Sciences through the Gilead together grant program and produced by Positive Women Victoria, a community by support and advocacy organization for women living with HIV in Australia. I'm Heather Ellis. Thanks so much for listening. Isn't it time we ended HIV stigma once and for all.For more details on topics discussed in this episode, please visit: Positive Women Victoria: https://positivewomen.org.au

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.auEpisode 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 from this relatively sheltered world that you lived in going to high school, you then went to university where you were studying communications. But then everything changed for you didn't it? You were telling me you were working in a part time job in retail, and then the magic happened. What was this magic?Brittney:Yes, I was very clumsy dealing with boys and men in general and probably because of my education that basically meant I had nothing to do with them up until this point. So that kind of kept me away from any really difficult situations for quite some time. And eventually, as you said, when I was working in that part time job, I did meet somebody very special. And fortunately for him, for me, for him, but for me, he is a very accepting person and I couldn't have known that at the time. But I was just so lucky that when it came to telling somebody about what was going on for me, that it was like a hole in one. It just worked out.Heather Ellis:This was before the U=U message? Undetectable equals untransmittable, which means if people are taking medications and they've got an undetectable viral load, they can't transmit HIV. U=U is backed by more than 20 years of scientific evidence. When you met this man, this was before U=U, but there was still so much information out there about treatments. So how did you go about educating him about HIV? I mean, most people don't know anything about HIV until they either meet someone or they are diagnosed, even today that's what happens.Brittney:Oh, but again, I was very lucky that I didn't actually have to educate him at all. When I sat down to tell him I think I prefaced it by saying something like, this is not a big deal. But I understand if it's a big deal to you, but it's not a big deal. And he just got the message. Again, like those mixed messages that I was getting as a kid were just sort of coming out again. But his response to me telling him was actually just to sort of quietly go away and do his own research. And he's a man of science. So reading what he needed to know, to set his mind at rest.Heather Ellis:Yes, because the scientific evidence is all there, but you don't really come across it until the HIV comes into your life. What happens often when people are diagnosed with HIV and I also know with myself, is you often feel like you're held back it's like this cloud hanging over you. This is internalised stigma. But this is what makes your story so inspiring, because this was completely not the case with you. I mean, you went to university, you found the love of your life, all that worked out and then you started a career. But did you have any of those feelings that often are part of living with HIV that shouldn't be part of living with HIV?Brittney:A big part of that is the fact that it's just been my secret so I haven't really exposed myself to any risk of stigma because nobody has known. I mean, that was a decision that was made when I was a child. And I never really sort of re-evaluated that at any point in time and thought, well, do I want to be more open about who I am and how I'm living? Or do I just want to keep going? And it's sort of, I guess it's that inertia thing, or just keeping going with what you're already doing. It's never really occurred to me to, to be public about it. From a work perspective, it certainly hasn't had anything to do with that stigma, which is externalized. That means people say things about you and treat you differently. And then there's internalized stigma and the two are equally as damaging. The self-stigma. On the other hand, it's probably more my Achilles heel because I think it ties into sort of a natural anxiety that I already have as a person. It's just so easy for that to sort of really amp up that negative self-talk and all of that to sort of affect each other and build each other up.So when you've got this issue of, oh my god, I'm HIV positive. And if they knew, they would do XYZ and that is horrible. So just trying to keep that under control is probably a bit more of an issue for me to be honest.Heather Ellis:For 20 years I’ve dealt with that. And then when I was completely openly living with HIV that just went away. And I know that not everyone wants to openly live with HIV. But when we can end stigma, then it becomes a non-issue whether people know or they don't know. And now you're a new mother, you've sort of went on this journey of pregnancy being a woman living with HIV, because there's all issues related to that as well about with your treatments. And then when you have the birth, when I had my children, you couldn't have a natural birth. You couldn't breastfeed. It still isn't recommended to breastfeed but you can be supported to breastfeed and that's happening in many countries around the world and they've got new guidelines even in Australia. So how was that journey for you as a new mum?Brittney:If I'm going to be completely honest, I think there are other aspects of being pregnant and birth that were far more distressing and scary to me than the HIV aspect. Yeah, I think it's probably because I was very lucky with my doctors, and they were very supportive. And I never felt any kind of stigma from them. I was going into my appointments. So it was kind of just a non-issue I was seeing an infectious diseases doctor there, when I went and saw the obstetrician, and she basically just said: “yep, good, you're all good. No worries.” And it was just really reassuring. And it was just the way that it was handled, so sort of business like just made me feel really, really normal, which was actually a really pleasant experience, because I always felt sort of medically abnormal. The only thing that really did sort of got to me was the breastfeeding thing, because I was obviously encouraged not to. So I was going to do exactly as instructed. And I'm not going to argue with the doctor and research. But I did find just navigating that was uncomfortable and the way that mums and other mums and that sort of community can not necessarily be supportive of diversity choice. And so I don't know whether it's like a perceived thing, or whether it's actually there, but you do sort of feel like you have to kind of stand by your decisions a lot. And it's not something I've experienced, before having a child, really, it doesn't seem to apply to other aspects of my life at all. But you know, your decisions of whether you co-sleep or don't co-sleep and all that sort of stuff. You seem to have so much riding on there in terms of what other people will think and say. So with the breastfeeding, I found that really hard because I obviously wasn't able to do it. So we had the baby on formula, right from the get go, but I felt like every time I explained to anybody about why breastfeeding didn't work out there had to be a sort of story attached to it, and I wasn't really confident in the lie either. And I'm not a good liar. So it was just, it was kind of just I skated around the truth a lot, and it was just quite uncomfortable. But getting through that was really nice, then, and that was really the only issue really,Heather Ellis:Yes, that becomes an issue, I think, for many women living with HIV and with U=U now in a sexual context. And as more scientific evidence is gathered, I know that within 10 years or maybe sooner, breastfeeding will be in the same way U=U is for now, and I really do hope that because the risk from research studies is like 0.3% but science really wants zero percent risk, we as mothers also want no risk and all that comes from time and from gathering that scientific evidence and now Australia has breastfeeding guidelines. So if women do want to breastfeed, they are supported in that decision. And there's a number of different tests that they continually have to have on their viral load, and also tests on the baby, which happen even without breastfeeding. Even if you don't breastfeed, the baby still has to have a number of blood tests to check if they have seroconverted. And they take an oral HIV medication for six weeks and you Brittany would have gone through that with your baby?Brittney:Yeah. That actually does sound very similar to what we've been through. And that kind of just adds to the complexity of bringing home a new baby when you've got to try and measure out like a tiny, tiny amount of syrup and put it into a tiny, tiny mouth via tiny tiny syringes. And particular times of day and night as well. So that was a little bit challenging, but it didn't last very long. And, and then it was just some routine follow ups that we had to go through. But I guess the nice thing about it was that they always just felt very routine and very normal. And that's a big thing for me, I guess, feeling abnormal, and that sort of pushing up my self-stigma. So being treated like this is just the most regular check-up in the world kind of thing made it a nicer experience for me, for sure.Heather Ellis:Yeah, I found the same thing with the healthcare setting. Everybody was fantastic and very professional and very understanding and they really knew their stuff. It's more in the GP sector. When I first told my, my GP, he said: “don't share your toothbrush”. Now why would I want to share my toothbrush with anyone anyway?So I just wanted to ask as we finish up the episode today, if you can share why you wanted to share your story and what advice have you got for other young women who are newly diagnosed and just beginning their HIV journey?Brittney:Well, I guess my main motivation for sharing is just that I know that the more of something you hear, the more normal it becomes. And it's as simple as that to me, in terms of more voices, more stories, more normality, less stigma. I know we've seen it with other groups of people that have been previously marginalized that are now more accepted into mainstream society. So that exposure is what we need. It's an ironic use of that word. But you know what I mean. So I just want to be part of that. And if there are any sort of particular aspects of this, that other people can relate to, then that's great, too. In terms of words of advice, I think just maybe just don't count anybody out. With my one experience. I don't know. I've only had one experience, but my one experience of disclosing to a partner just went so much better than I could possibly expected. And we didn't know each other all that well at the time. It could have gone horribly, but I just gave it a shot and it worked out and if I had not had the guts or not felt like I could have at that particular time for any reason that I just wouldn't have the outcome that I have now like I'm with this man that I love very much and with our little baby in a nice home. And it just all came from making that one decision in a way to me so I just said, you know, don't cut anyone out just have a crack.Heather Ellis:Yes, don’t be scared to take that leap of faith. Don’t close yourself off from the world. And thank you so much, Brittany for sharing your story today on Our Stories: Ending HIV Stigma. Thank you.Brittney:Thank you. Thanks.Heather Ellis:If you've enjoyed this episode, be sure to subscribe so you can listen as future episodes are posted. Please rate and review this podcast and share it. Our Stories is part of the women in HIV tell the story project made possible by Gilead Sciences through the Gilead together grant program and produced by Positive Women Victoria, a community-based support and advocacy organisation for women living with HIV in Australia. I'm Heather Ellis. Thanks so much for listening. Isn't it time we ended HIV stigma once and for all.For more details on topics discussed in this episode, please visit:Positive Women Victoria: https://positivewomen.org.au

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.auEpisode 1: Charlotte’s StoryTranscript / Show NotesHeather 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 him. And you know what, what an exciting event to get married in Bali in a ceremony and we had a big party.Heather EllisDid your mum come over for the wedding?CharlotteNo, no one came because I really only called them two days before and told it was happening. And my mum came a few weeks later, when I was like, you have to come and meet him. He's amazing rah, rah but after a couple weeks of being married, um, things changed very quickly. He became very violent, very abusive. He attempted to kill me a few times. It was a life of trafficking drugs into Bali prisons and you know, being raided by police and guns held to your head and it was adrenaline go, go go. And I was so far in and so addicted. I didn't know any way out. At this point, I didn't know that there was a thing called recovery. I didn't know that there was hope. I just continued on that path.Heather EllisAnd then you found out you were pregnant.CharlotteYeah. So I think it was only maybe a few weeks after we were married. He desperately wanted a baby and said, ‘Well, now that we're married, we have to have a baby. Because in my culture, that's what we have to do. And it has to be a boy. So we have to have a baby’. And I was like, yeah, okay, another great idea. And at the back of my mind, I also knew that that was going to be my only escape from using drugs because I knew that I couldn't use drugs when I was pregnant. From when I fell pregnant, I thought, well, I need to leave this country I need to return home because if I have any chance of giving birth, to a healthy child that's not going to be effective on these drugs. I removed myself from the country. So I did the whole geographical and packed my bags and moved back to Australia. And I stopped using drugs as soon as I returned home, I would have been about 12 weeks pregnant. I went to the GP to have my exciting pregnancy tests and all my blood tests and because I had been living overseas, they, they included the HIV test at the time.Heather EllisWhen you're pregnant in Australia, you have an HIV test. That's what happens as soon as you're pregnant.CharlotteAnd I got a phone call to come down and they asked me to bring my mum as well which I found a bit odd, but I thought well, you know, maybe they want her there because they know how close I am to my mum. But I'm really grateful they did ask my mum to come because she's, you know, she's my soul mate, my best friend.Heather EllisDid your husband come with you to Australia? Did he come back with you at that time?CharlotteYeah, he did come back. He thought, you know, I'd come and see what the Australian life was all about. And so yeah, he came and he was waiting there for my pregnancy to be confirmed and in the room, the doctor told me, you're HIV positive. And my world just fell apart. My mum just cried and cried, and I was so confused as to what was going to happen. I just presumed Well, I'm going to die and my baby's gonna die. AndHeather EllisSo prior to your diagnosis, you probably had heard nothing about HIV or what was involved and of how effective the treatments that were available.CharlotteNothing I hadn't even been spoken to in school of HIV. It was never taught to us. We did the one or two ed classes about condoms and how not to get pregnant. They wouldn't ever talk to you about HIV or anything like this. And so I went home from my doctor's appointment and I told my husband, I've had an HIV test and it's positive, you need to go and have one. He was very, very angry and abusive towards me and claimed I must have been a prostitute and all these nasty things, and he did end up going and get tested and they found out that he had HIV and Hep C and he was quite far along in his HIV journey and he was becoming quite unwell. So he decided to return back to Bali, which was fine you know. I was heartbroken but I had hope for me and my baby. I met an amazing nurse from one of the clinics who, explained everything to me and that I was going to survive. I was going to live a really healthy life and my son was going to survive and live an absolutely normal life. I let go a lot of guilt once I realized that my baby wasn't going to be affected because I was very guilt ridden as to what I had I done to this poor unborn child, but I was very relieved when I found out that he would be fine if I took the HIV meds and I took the protocols that the doctors had said to me, this is what you need to do. I did every single thing you know, they would offer something I would take it, they would say this is important. So fast forward ten years later, and I have three very healthy boys. None of them have HIV.Heather EllisYou have a new partner now and when you told him you had HIV, was he upset because most new partners of people living with HIV have no knowledge of treatments and U equals U - undetectable equals untransmittable?CharlotteBecause I'm undetectable. I'm untransmittable, and we have a healthy relationship he doesn't live in fear of being infected with HIV, which is really reassuring to our relationship.Heather EllisYou’ve been with my partner for four years. And you're living proof that supports those many studies with thousands of couples in the same situation and there's been no transmission.CharlotteThat’s simply what has happened. Before meeting me, he didn't have any education about HIV, just like I hadn't had the education the day I found out. So you know, once I sat down and explained to him and educated him on U=U and explained, I'm on ARVs and my viral load is undetectable, that puts you at an extremely low risk. And I wouldn't ever put you at risk, because I obviously love and care about you. And once I had taken the time to explain that to him and educate him and take him for a test, things really calmed down. Yeah, and I choose to get my viral load and CD fours done every three months, you know, the doctors have said, Look, you don't need to come every three months, you can do it every six to 12 months now, because you're so well and your medication works so well, but I choose to get it done every three months. So I had that peace of mind. I don't have to worry in the back of my mind at all. So I find that reassuring as a mother and as a part of that. That's my way of taking extra responsibility, just to keep a track to make sure my viral load continues to stay undetectable, which always has. I feel I'm glad that's what I do.Heather EllisAnd you have three children. Two boys to your new partner. And all your boys are perfectly healthy do not have HIV, because that's one of the questions you know, as a mother myself, when I tell people they say are the boys, okay?CharlotteIt's always about the baby? They ask: What about your kids. I can say so confidently is you know, my children are HIV negative because I took the medications that I need to take, which is only one tablet a day to make sure that my children, had the best chance at life and would not be born with HIV. And none of them have been and they all very healthy very active, very boisterous, loud, bubbly boys. My children don't know their mother is living with HIV yet because, well, for me, I believe they’re too young to understand, but when they grow up, and I can explain to them what had happened to Mum, they can have that peace of mind that mums not going to die. Nothing bad's gonna happen to mum because of this which is really reassuring as a mum to be able to come out to my children and explain. Mum's not gonna die. Mum's going to be okay.Heather EllisI’ve told my three boys. They’re all young teenagers and it's fantastic that they know because when there's some information on TV about HIV, they're really interested and they are educating their peers at school who surprisingly will say: ‘I've never heard of HIV, what's HIV,’ Which in this day and age is completely, unbelievable that is happening and that there is virtually no sexual health education in schools.Charlotte It's scary the lack of education and the stigma and the confusion and things behind HIV, which is still quite frightening. This lack of education, we need to start in schools to break that stigma.Heather EllisAnd this is what this podcast is all about with women sharing their stories so that when we speak out and share our stories. Hopefully people will be educated and understand and be better informed. And that will end stigma because the stigma comes through a lack of information, lack of education, complete ignorance around HIV. And what has your experience of stigma been?CharlotteThere’s been so much stigma, especially more with my first child and it's become less as I've had each child, which I'm really grateful for because the first one you know, I was asked to leave a mother's group in case my child was to bite another child which is just ridiculous, which again, is sad due to their lack of education. I've had HIV tests taken on my baby, unfortunately, without my consent, again, due to lack of education.Heather EllisWhen babies are born to mothers living with HIV, part of the routine procedure is to test the baby for HIV, but it would be almost impossible that the baby had contracted HIV. And no baby has been born with HIV to a mother with HIV in Australia who is on HIV medications.CharlotteYes, my children had their tests at birth, four weeks and I think it was 12 weeks they had their testing and each baby had a course of four weeks of oral viral syrup that they were given each day as a precaution.Heather EllisBut in many medical situations, the healthcare workers don't understand that and just assume, oh, you're HIV positive, maybe the child's HIV positive as well. So they just have no understanding of how effective the treatments are.CharlotteI experience that recently. My youngest has been quite unwell. In and out of hospital with nothing to do with HIV with a type of periodic fever that's going on with him. And, you know, I've had out of maybe 10 doctors that I've seen, they have jumped to conclusions. They have said: “oh my god, we need to HIV test right now”. And that's what is happening today. I had that stigma and it was upsetting as a mother, knowing that I had done all the all the right things that I needed to do to protect my child and they didn't have the education that, hey, this mother has done everything she's meant to do.Heather EllisAnd what seems to happen in so many cases is that the stigma is coming from the healthcare sector. And that would be where you would expect there to be no HIV stigma.CharlotteYeah, and that's where it comes from. I've had paramedics ask me what would happen if they drank from my drink bottle. And I've had a dentist when I was first diagnosed, call the chemist to let them know a lady with HIV was coming to pick up a script. I've had so much stigma. I've had blood tests, by someone who said: “Oh, you should be used to this you used to needles. The lifestyle you live”. I had never used a needle in my life. That was when I was using drugs. So I obviously looked like a drug addict. I had a very sunken in face, I was 40 something kilos, and I was clearly under the influence of methamphetamine. Still, this was back in Australia, you know, so they jumped straight to the conclusion of are you used to needles or you're a junkie. That's how you've got the HIV which actually had nothing to do with how I contracted HIV. It was from a man who didn't know that he had caught it from tattoos as a teenager.Heather EllisYes, and in so many cases, women are contracting HIV through unprotected .CharlotteThat's what happened with me. I decided to have a baby with my first partner and he had no idea in the world that he had HIV, and he also had Hep C. They believe while he believed that he must have contracted it from tattoos from living in a third world country at a time in a prison and that's where he believed it came from and he chose not to have the treatment. And he ended up dying. He has passed away eight years ago, which just goes to remind me how important my meds are and how grateful I am to live in a country where we have such amazing access to treatment. So it makes all the little negative comments and things you know, not feel as bad when you realise how lucky we are to live in a country with this amazing access to treatment.Heather EllisAnd it would be great if they could have that treatment available to everybody in the world. I mean, it would cost like $1 a day. There are 38 million people in the world living with HIV but 16 million of those people don't get the treatment.CharlotteThere needs to be an end to the stigma in Bali too. If he had of told his family and his friends in Bali before he died. He would have been cast out from his village. None of his friends would have wanted to touch him. He wouldn't have been welcomed to come into the tattoo studios. He wouldn't have been welcommed by his family's temple any more. So he actually decided not to be treated and went back to Bali and ended up back in drugs and drug dealing and led him to jail and death. You know that's a whole other story but that was his journey.Heather EllisAnd now with your family, your partner and your three boys, have you been to Bali to visit your oldest son's family.CharlotteI told his family once he passed, and, they were very supportive and they were very sorry that it happened to me. They apologized a lot. And I said, you know, no one is to blame. I'm never going to hold blame towards somebody. As a family we still travel we live a normal awesome fun life we do things with our kids.Heather EllisAnd I bet they're going to take up BMX riding like yourself when you were a young girl,CharlotteDefinitely. One boy is on the bike, another is on a boat. I just got to get one of them into ballroom dancing now.Heather EllisI’d just like to ask, what it means to you to share your story with others on this podcast?CharlotteSo for me, I feel privileged to be able to share my story with others. I wish nothing more than to give other women a sense of happiness and a sense of identity. To remove that feeling of guilt shame and the stigma that is joined to HIV. I want every woman to feel that they can rise up. They can LIVE with HIV and it’s okay and not to feel you know shunned upon and you're anything less and you're not from this world anymore because you are and you are doing as important as every other woman that walks this earth, if not, you're even more special. My life has changed absolutely so much since I've become in contact with the Positive Women Victoria in Melbourne. Before that I never really spoke about my HIV it was just there existing in the background. And it didn't need to be spoken of it was just, you know, it's just something that was there that I live with. It was never brought up. But when I became connected, I have this new sense of empowerment. And, you know, I'm almost proud to be able to speak for the women that don't have the voices to speak. You know, my son always says to me: “Mum, we need to speak for the people who don't have their voices to speak”. And that just goes into my heart. Those of us who speak up, we have a voice to speak for those women that don't have their voices. So Now is my time to speak up.Heather EllisThat is fantastic. Your son is a very special young man.Thank you, Charlotte for sharing your story. You've taken taken us all on an amazing journey.CharlotteThank you. Thank you for having me. Thank you for giving me the opportunity to share my story and I hope that I give hope to other women who feel that they can share their story because the more we share, the more we empower each other and break down this stigma.Heather EllisIf you've enjoyed this episode, be sure to subscribe so you can listen when future episodes are posted. Please rate and review this podcast and share it. Our stories is part of the women in HIV tell the story project made possible by Gilead Sciences through the Gilead together grant program and produced by Positive Women Victoria, a community by support and advocacy organisation for women living with HIV in Australia. I'm Heather Ellis. Thanks so much for listening. Isn't it time we ended HIV stigma once and for all.For more details on topics discussed in this episode, please visit: Positive Women Victoria: https://positivewomen.org.au

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/podcastFor information and support on living with HIV: https://positivewomen.org.auIf 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