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.

TRANSCRIPT

EPISODE 4: SARAH FEAGAN’S STORY

Uploaded: 13/10/2020

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 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 Feagan

Thank you so much. Hello. Thanks for having me. And thanks for a beautiful introduction.

Heather Ellis

You'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 Feagan

Yeah, 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 Ellis

You 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 Feagan

My parents, a shout out to those beautiful humans, I put them through and back and, you know, at 14, you don't know, I thought I knew everything. And I thought that I could understand certain things in my life that had happened or certain moments that had made me act out in different ways. And I was so confused and so angry and I was going through puberty and it's just a toxic mix? But I couldn't verbalize. I couldn't say what was happening for me. So it came out in really poor behaviors. And, yeah, my parents went through that and they had to watch sort of me self-destruct, when they were willing and able to support me. So we are, we are really close now. Like we speak every day, and we're really good friends. But I think to other parents, I'm not a parent myself, so I can't, I can't sort of speak to that. But definitely their unconditional love. The door was always open, even when they wanted to lock it and change the keys change and change the locks, they still kept that door open. And I think that I had to go on my journey of self-discovery and my journey of self-awakening and understanding a lot of things about my past and maybe why I was reacting the way I was, and they allowed me to do that. Maybe it was from afar, but the very supportive, frustrated kind of moment, but they were always there and at the end of the day, that's the reason why I'm still alive. Your child is always your baby at the end of the day. That little animal that's driving you nuts is your baby. And that yeah, that love is always felt as a child, I have always felt that love. So I'm really lucky

Heather Ellis

When 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 Feagan

So 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 Ellis

You'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 Feagan

Yeah, so it was like I said, my drug use was out of control. And I was about 19 by this stage, and we ended up north living with a really good friend of mine. And she was really supportive and part of my healing and then I've headed into town and I met this like super hot guy, and yeah, I fell in love. But unfortunately, there was a lot that he didn't know about himself. Yeah, I mean, ultimately that that took me down. The road that I'm on now so

Heather Ellis

When 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 Feagan

Yeah, 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 Feagan

This 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 Ellis

So when you fell ill did you even think about HIV at that time. Did it cross your mind?

Sarah Feagan

No, 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 Ellis

That 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 Feagan

Yeah, 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 Ellis

So 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 Feagan

I 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 Ellis

So 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 Feagan

I 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 Ellis

So 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 Feagan

We'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 Ellis

We'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 Feagan

Do 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 Ellis

Yeah, 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 Feagan

Peer 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 Ellis

Prior 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 Feagan

Tt 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 Ellis

Why 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 Feagan

It 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 Ellis

So 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 Feagan

Oh, 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 Ellis

Would 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 Feagan

Thank 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 Ellis

Yep. 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 Feagan

It'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 Ellis

And PNG in Papua New Guinea as well.

Sarah Feagan

They'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 Ellis

That'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 Feagan

Exactly. 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 Ellis

I'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 Feagan

I'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 Ellis

Well, 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 Feagan

Oh, 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 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 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