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

Batsirai’s story begins in southern Africa. As a teenager in the late 1990’s, she recalls a scary time when people were dying from AIDS. Safe messages were everywhere. Then the family moved to Australia, but there were no billboards, no TV adverts, no news of HIV and she assumed it was safe here. Batsirai’s revealing story highlights the importance of continuing to have public discussions of HIV among all our communities to encourage awareness, testing, and as a challenge to the myths that underpin stigma.

https://positivewomen.org.au/tell-the-story/podcast

TRANSCRIPT / SHOW NOTES

BATSIRAI Story

Heather Ellis

Hi, 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 Ellis

It 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 Ellis

What 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?

Batsirai

It 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 Ellis

It'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 Ellis

Yeah, terrible times. How old were you when you move to Australia with your family?

Batsirai

I would say probably toy 19 going 20

Heather Ellis

What 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?

Batsirai

It 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 Ellis

And 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 Ellis

Yeah. 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 Ellis

When 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?

Batsirai

When 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 Ellis

When 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?

Batsirai

So 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 Ellis

You 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.

Batsirai

For 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 Ellis

And you've got two girls, and their father is negative.

Batsirai

Yep.

Heather Ellis

And 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.

Batsirai

Yes. 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 Ellis

Women 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?

Batsirai

Because 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 Ellis

When 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?

Batsirai

Yes, 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 Ellis

So this was your journey through the healthcare system here in Australia?

Batsirai

Oh, 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?

Batsirai

Yeah, 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 Ellis

Did you have any support from the HIV sector from organisations like Positive Women Victoria?

Batsirai

Yeah, when I was diagnosed in 2008. I reached out to Positive Women

Heather Ellis

From 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.

Batsirai

For 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 Ellis

And 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?

Batsirai

Yeah, 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 about

Heather Ellis

Blood Ties

Batsirai

Yes, 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 Ellis

Did you reach out and get support from your parents?

Batsirai

No, 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 Ellis

Yeah, that's Yeah, that's the same with me was like, Why didn't you tell me?

Batsirai

You 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 Ellis

And 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?

Batsirai

Well, 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 Ellis

For 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?

Batsirai

African 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 Ellis

So 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?

Batsirai

Unless 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 Ellis

When 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.

Batsirai

And 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 Ellis

And 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.

Batsirai

Yeah, exactly. Exactly.

Heather Ellis

We have a lot to learn from Africa because they have had that sexual health and HIV education campaign.

Batsirai

Yeah. 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 Ellis

Batsirai, it has been wonderful speaking with you today. I thank you so much for sharing your story on Our stories, Ending HIV stigma.

Batsirai

Thank 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 Ellis

If 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