Brittney’s Story: After a surgery mishap in childhood, HIV never held her back. - a podcast by Positive Women Victoria

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

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