Stigma, shame and schizophrenia

Sana Qadar: Hey, Sana here from All in the Mind. In the last couple of weeks, mental illness and violence have been in the headlines after two separate stabbing attacks in Sydney. In the Bondi Junction attack, a lot of the reporting has focused on attacker Joel Cauchi's diagnosis of schizophrenia as a teenager. Now, schizophrenia is a complex mental illness, and one that is shrouded in so much stigma. So we thought it would be a good time to replay an episode from our archives on one family's experience living with the illness and the stigma. So here it is.

Sana Qadar: Growing up Elfy Scott knew something wasn't quite right with her mother, but she didn't know what and she never asked because no one in her family ever spoke about it or acknowledged it. And that silence coloured everything.

Elfy Scott: I think that it's kind of a feeling that you can probably relate to if you have any secret in your family, really, any sort of like open secret that nobody is willing to discuss. And I knew that there was something that I didn't understand, something strange happening in the house, something inherently different about my family that I couldn't express.

Sana Qadar: Elfy is a journalist and writer now, and she's expressing the unspoken in her book called The One Thing We've Never Spoken About: Exposing Our Untold Mental Health Crisis. But I want to backtrack a bit here and tell you a little bit about her family first, beyond the illness that affected them, because in many ways, Elfy's childhood was wonderful.

Elfy Scott: So my family consists of my dad, who worked as a banker for many years. I also have an older sister. She works in Canberra and my brother lives in London and we're all incredibly nerdy people, I think is fair to say.

Sana Qadar: And what did your mum do for work growing up?

Elfy Scott: My mum worked as a flight attendant for a while and that's how she met my dad. And then while we were growing up, she used to work for very random companies. She worked for a while for Unilever and the only reason I know that that's the company she worked for is because she used to bring home like cases of Lipton iced tea.

Sana Qadar: Amazing.

Elfy Scott: I never drank water until I was like eight years old.

Sana Qadar: That's like a kid's dream.

Elfy Scott: I know, right?

Sana Qadar: But this is also what Elfy remembers.

Elfy Scott: My mum's hallucinations got so intrusive to the point that she would call police to come to the house because she thought that people were trying to break into the house. She would believe that people were trying to break in to try and steal our identities and rifle through our papers. So everything was always locked, always. Remember, the house is just like kept like a safe basically, and like dead locked at night and things. And yeah, I mean the, the terror that she must have experienced would have been appalling. The more I learnt about my mum's experience, the less I understood how she survived it. Really.

Sana Qadar: This is all in the mind. I'm Sana Qadar. What Elfy didn't know until she was a teenager was that her mother had schizophrenia and stigma is a big part of why her family never spoke about it.

Elfy Scott: I wanted to write the book because I started to see more and more social media dialogue and commentary around mental health, around anxiety and increasingly ADHD. But I also noticed that in that there was a dearth of information or dialogue around schizophrenia and other complex mental health conditions.

Sana Qadar: Today, the silence and stigma around schizophrenia.

Elfy Scott: So my mum is Indonesian. She is an Indonesian Muslim immigrant. She is very funny and fun loving and she's like hugely social. She has this tendency to go out with friends for like five hour long lunches and things like that. So she's always out and about and yeah, she's just a really lovely, kind, empathetic person.

Sana Qadar: And so how old was she when she started developing schizophrenia?

Elfy Scott: She would have been in her late 30s after she'd had two children. So she had my sister who would have been a toddler at the time, and my brother who was a baby. So she'd sort of started to experience auditory hallucinations when my brother was a baby. And then I was born maybe five years or so after that. And I think that what happened was she became pregnant and that intensified the symptoms for her and intensified the stress that she was experiencing. And yeah, so by the time that I was born, she had experienced a full blown psychotic episode that had to be managed through medication, whereas she hadn't been medicated up to that point.

Sana Qadar: Oh, wow.Gosh. And so from your own childhood, what's your earliest memory of having a sense that something wasn't quite right with your mum?

Elfy Scott: It's really hard to put a finger on it. I think that having grown up in what I would call like a fairly average, very happy middle class suburban household, it's really difficult to say if there was any definitive moment where I felt like something was wrong or off. But, you know, there were absolutely signs from a young age. Now, looking back retrospectively where I can say, you know, Mum was talking to people that weren't there, Mum was using a broom to like hit walls at times when she felt a bit aggravated or thought that maybe there was somebody in the house because of her hallucinations. And there were absolutely other things like delusions and paranoia that she experienced in the sense that she thought that there were intruders coming into the house all the time and things like that. You know, she would say things like, shut up, you're mean. Stop talking to me, things like that. Responses to the auditory hallucinations. So there wasn't one single moment that really tipped me off to it, but it was more of an accumulation of this information. And I mean, I was a fairly ignorant child, so it did take a while for me to actually clue in to anything that was really happening.

Sana Qadar: And so did you just for the longest time, I guess, think Mum was a bit funny or, you know, like that or that was normal?

Elfy Scott: Totally. Yeah. And I think when you're a child like you can normalise so much that's going on in the household around you and I guess for the longest time I really just thought she was a slightly eccentric person, which she is as well. Like that's another complication to this story is that she is quite like an eccentric out there, kind of funny person. But I just didn't understand that there was a diagnosis behind this.

Sana Qadar: And so did you talk to your siblings about some of this strange behaviour at all? Like, did you talk about it at all?

Elfy Scott: Not at all, no. Which is so strange to say now because we are incredibly close as a family. You know, we, we were always together when we were kids. We were always hanging out. But it just wasn't a conversation or a topic that we were willing to broach, really.

Sana Qadar: That's that's pretty remarkable because when she was speaking to herself or speaking to people who weren't in the room, to not even have a remark to your siblings is really surprising. Like, what do you think was holding you back from talking to each other?

Elfy Scott: Yeah, it's a really good question. And you know, we would talk about it in the sense that we would say euphemistic phrases to each other like, you know, Oh, mum, those are just your voices or things like that, or it's just your illness. It's not real, it's in your head, stuff like that. And the reason that we never spoke to each other about it, it kind of eludes me. I think that part of it must have been stigma to some extent. Part of it must have been because we were uncomfortable talking about it and we didn't want to say the word schizophrenia out loud. And then I also think that another part of it would have just been like the culture of our household. We grew up in quite an emotionally repressed British household, which I'm sure a lot of people can relate to. And yeah, it was just kind of an uncomfortable topic that we didn't really want to tackle.

Sana Qadar: You have a really powerful line in the book where you say, you know, at this point where you're where your mum is hearing voices, but you're none of you are talking about it. You say everything felt 30 degrees off centre.

Elfy Scott: Yeah, it's it's a very sort of nebulous feeling. But it was just this concept where, like, I knew that there was something that I didn't understand and I just felt like slightly wonky for it. Like I felt like I couldn't totally relate to other people because of it. I felt like it did have an impact on my social skills when I was a kid as well. Like something strange happening in the house, something inherently different about my family that I couldn't express. And I think that's kind of what I was getting at with that quote.

Sana Qadar: Silence was how Elfy's mum initially dealt with her symptoms too, back when they first started developing before Elfy was born.

Elfy Scott: The, the terror that she must have experienced would have been appalling, especially for those years between when she first started experiencing symptoms and when she came out to my dad saying that she was experiencing them because there were several years between when she had the onset and when she went to a psychiatrist. So she must have just been living with this incredible fear around the house and a huge amount of loneliness, I'm sure, as well.

Sana Qadar: Yeah. Wow. So for many years she actually didn't even speak about it at all to anyone.

Elfy Scott: Yes. Yeah. Yeah, absolutely.

Sana Qadar: That would have been awful.

Elfy Scott: Yeah. Yeah. You know, I do think part of that is because she's an incredibly private person. But I also think that maybe she was just confused and she would have felt like she couldn't reach out to anybody because she hadn't established her social groups yet at that point either. It would have been it would have been really hard.

Sana Qadar: And throughout all of this, your mum continued to live at home to raise three children, which also is incredible that she managed to do that while hearing voices, you know, and pretty terrifying voices. Tell me about that. How did she manage that?

Elfy Scott: That's a very good question. I have no idea. The more I learn about my mom's experience, the less I understood how she survived it, really. Because, you know, she spoke about the burden of trying to find the right mental health care, find the right medication, looking after three small children. It just sounded like an immense amount to deal with. And there was a part in her diary that kind of illuminated this for me a little bit in that she wrote that she felt very motivated to recover and to get by because she knew she had three small children to look after. And I think that that was a big part of her motivation towards recovery was having us to look after. And that's yeah, it's it's pretty remarkable. Even with that, I'm baffled by her.

Sana Qadar: Yeah, it is amazing. And also amazing that you she gave you her diaries, as you mentioned, to to access while writing this book. Like that's incredible. What did you learn about your mum? What new perspective did you gain on her through reading her diaries from this time?

Elfy Scott: Yeah, I, I think that was a pretty remarkable moment, especially because she had been so private for her entire life with me, like never really divulging huge amounts of detail about her mental health condition at all. And so she'd had this international lifestyle beforehand. She'd met my father in Hong Kong. She had travelled around the world with him to New Zealand and to London. And yet when she came to Australia, she felt deeply uncomfortable, both culturally and even just like geographically. I think that she felt really disconnected from a lot of people in that move and that was really surprising and it was actually, honestly quite sad to read. Yeah.

Sana Qadar: So you didn't know that at all before?

Elfy Scott: No, not at all.

Sana Qadar: And so after a lifetime of not having talked about it with you, the kids, why do you think she handed you her diary?

Elfy Scott: I think that she really wanted me to understand, and I think that is something that kind of came across very suddenly when we started talking about her schizophrenia is that she had been obviously hiding this part of her life from us as well, like in the fact that it was a secret. She was burdened by that secret and she couldn't talk to the people that she was really close to. And I think that she was really keen to share this part of her life, really.

Sana Qadar: So this not talking about it, this extended beyond your home as well. You write in the book how like in your 20s you were struggling with your own mental health issues and you would talk pretty freely about that with your friends, but not schizophrenia.

Elfy Scott: Yeah. So I mean, I had issues with mental health from quite a young age, so I was diagnosed with depression when I was 14, and then I had several successive depressive episodes up into my mid 20 seconds and also experienced disordered eating. And those were things that I could speak quite openly about within my friendship group. I don't think that there was a huge amount of stigma around those conditions, especially because we knew so many other people who were living with those mental health conditions. And yet I also saw in that that I couldn't speak about schizophrenia. I could never tell my best friends about it in high school. I could never really yeah, just divulge that information to them. And when I did, eventually there's a part in the book and I remember this so clearly. I told my best friend about it and she said, Oh, but I've never seen your mum's multiple personalities before. And I think that was a really clear indication to me that, you know, my friends weren't equipped to have those conversations. And that was just something that I kind of had to live with.

Sana Qadar: Because they didn't actually understand what schizophrenia was.

Elfy Scott: Yeah, totally. I think we'd received, you know, some amount of education about depression and other common mental health conditions. But we never heard about schizophrenia in school and even through university. I did a psychology degree and yet I didn't feel like people were equipped to talk about it.

Sana Qadar: Wow. Gosh, this whole growing up and not talking about it with anyone like it. It feels very lonely. Was it lonely?

Elfy Scott: Uh, yeah?

Sana Qadar: Or was it just your normal.

Elfy Scott: I think so. I think it. I think it must have been lonely, but maybe not in a way that I consciously realised. Yeah.

Sana Qadar: You're listening to All in the Mind. I'm Sana Qadar. Today the silence around schizophrenia. Journalist Elfy Scott is the author of a book called The One Thing We've Never Spoken About Exposing Our Untold Mental Health Crisis. And part of the reason her family never spoke openly about what was going on with their mother was because of stigma. And that's a story Elfy saw replicated over and over as she was researching her book.

Elfy Scott: I did reach out to a lot of different people, and I had so many conversations with people who were living with schizophrenia and other complex mental health conditions. And I think one of the most fascinating, jarring, horrifying parts of that stigma discussion was the idea that a lot of them told me that honestly, like the stigma was the worst part of living with that condition. So the symptoms were one thing they could deal with that, a lot of them were living on medication and that was fine. But the most tangible impact on their life was the fact that they had to walk around with this label that made people withdraw from them or, you know, people do know about it and you're treated incredibly differently in the workplace and you miss out on promotions and you never know why, things like that. But then it can manifest in people's personal lives as well. So a lot of the people that I spoke to felt that, you know, they'd had friends beforehand, they'd lived perfectly social lives. But when their diagnosis came out, it became very hard for people to see them as a whole person beyond their diagnosis.

Sana Qadar: One person you did speak to was Gabe, who talked about disclosing his condition in his workplace and having a really appalling experience. Can you tell me about Gabe?

Elfy Scott: Yeah. So Gabe Howard is a man living with a complex mental health condition in the US. He is a podcast host. I'm not sure if I'm allowed to plug other podcasts on this.

Sana Qadar: Go for it.

Elfy Scott: He is the host of Inside Schizophrenia that's run by Psych Central in the US and he told a story on a podcast about a workplace experience where basically he was hospitalised for a short period of time and when he re-entered the workplace and told his colleagues about it, basically they criticised him. They said he was lying to try and get holiday pay, things like that, to the point that he was so ostracised by his workplace that his managers let him go and fire him. And I think that that is a really harrowing but also a good example of how stigma can manifest. It's not like, you know, people are being taunted in the streets. It's more that stigma is like this quiet thing that can creep up and can lead to you losing your job in those kind of situations.

Sana Qadar: Why - explain why you think there is so much stigma around schizophrenia in particular compared to something like depression or anxiety where we talk about that heaps now?

Elfy Scott: Yeah it's a really complex story and I think that for a start, depression and anxiety are fairly common mental health conditions. Statistically, a lot of us would have been in contact with people who live with those conditions. So, you know, any sort of stigma or stereotypes around that can be quickly disbanded by our interactions with people who we know. But then I also think that it has a lot to do with the mental health care system and the framework that wraps around people. So with depression, you know, it's it is for many people a low level condition. So it means that you can have, you know, frequent interactions with psychologists and things like that. It's something that can be managed. Whereas for schizophrenia and other complex mental health conditions, often people who live with them will fall into something called the missing middle.

Sana Qadar: The missing middle. This is a huge issue in mental health care in Australia and if you've been lucky enough to never have had to interact with the mental health system, you might not appreciate how big a problem this is.

Elfy Scott: So the missing middle refers to the huge amount of people out there who live with a mental health condition but are not at the level where they can be successfully treated by those ten subsidised Medicare mental health care sessions. And they are also not at the severity that they need to be hospitalised. So there are people out there who are struggling, who aren't provided with a huge amount of resources to look after their mental health condition, who basically just have to live with this ongoing struggle and are ignored by the mental health care system.

Sana Qadar: And unless you can afford to cover the cost of private psychiatry yourself, you're pretty much out of luck.

Elfy Scott: Really, at that point in the mental health care system, there's very little care. There's no sort of community care to make sure that people are staying well, getting dressed, going to their jobs, going out to socialise. And that kind of means that a lot of people fall through the cracks. It means that a lot of people end up on the streets and our stereotypes of stigma are kind of defined by those people. Yeah.

Sana Qadar: I was going to ask, how much do you think the stigma around schizophrenia in particular comes from the fact that often when we hear it, it's in the context of crime reporting, you know, really horrible stories. We don't really hear about it in a more neutral context.

Elfy Scott: Yeah, absolutely. And that is like a huge part that contributes to the stigma around those conditions. So there was a study that came out in Australia a few years ago that looked at the media around schizophrenia specifically, and it found that over 50% of news articles that referred to schizophrenia were in the context of crime reporting. And then I also think that a lot of people have a lot of stereotypes about schizophrenia because in a way it is a condition that is defined to us as the public by the people who are experiencing the most conspicuous symptoms of it. So we're terrified of schizophrenia because we see people who are so burdened by their illness that they're shouting in the streets at people who aren't there, who are displaying quite erratic behaviour. And those are the people who have slipped through the cracks of mental health care. And that's kind of our perception of schizophrenia as a whole. Whereas if we started to hear success stories about schizophrenia, then we would come to have our perception very readily changed by that. But the stigma is so bad that we won't hear those stories. Does that make sense?

Sana Qadar: Yeah, Yeah. It's like the opposite of a virtuous cycle.

Elfy Scott: Yes. Yeah, yeah, absolutely. Like it is a cycle of stigma that I would love to see broken. And you know, there are some more reports coming out about people who live successfully with schizophrenia, and I have seen a few more of those narratives in the media, but it's just nowhere near the scale of the crime reporting.

Sana Qadar: Were there any other myths in particular you were hoping to dispel as part of writing this book?

Elfy Scott: Yeah, yeah, for sure. So a big thing that came up for me while I was studying psychology is that when schizophrenia came up in a lecture and we'd be talking about it, it was basically to say that, you know, a person would be diagnosed with schizophrenia. And then the implication that we were given was that there was no coming back from that. Like that was it. As soon as a person is diagnosed, then they're sort of given a life sentence of psychosis and they won't be returning to normalcy. And that's absolutely untrue for many, many people who live with this diagnosis. There are many, many people out there who work jobs like my mum did for decades while she was living with schizophrenia. There are people who raise families and have loving relationships and friendships, and I just think that there is still this inherent myth attached to schizophrenia that once you have it, you aren't coming back and that's the rest of your life. And I just want people to understand that I've met incredible people who live with schizophrenia now, and I've come to have that myth dispelled completely.

Sana Qadar: And your mum is a success story.

Elfy Scott: Yes. Yeah, absolutely. Like my mum is just my mum. She's very much like anybody else's mum who lives in suburbia and like goes out to coffees with her friends and has lunches and does charity work. Yeah, she's amazing.

Sana Qadar: Elfy is clear, though, and honest, that several factors and privileges have enabled her mother to live successfully with schizophrenia.

Elfy Scott: My mum has been incredibly lucky. She has the resources to access the mental health care she needs because of her socioeconomic standing. You know, we're extremely middle class and she's always been able to afford private psychiatry. In fact, when she first became acutely unwell, she had access to psychiatry sessions three times a week for months on end, which I would imagine would be ridiculously expensive for the average person. And yet she was able to do that. So yeah, there are factors that have allowed her to attain that success and, you know, walk that pathway towards recovery.

Sana Qadar: And she has a pretty solid group of friends as well that have stuck with her throughout all of this, right?

Elfy Scott: Yeah. So she's had exactly the same friendship group since she was diagnosed. She has a group of around like I think it's about 30 Indonesian women who just show up at the house all the time and who have just always been around and part of our universe. And they have always wrapped around her and treated her exactly the same. So she's remarkably lucky in that sense.

Sana Qadar: That's interesting because often there can be like an additional angle of stigma from migrant communities. Why do you think her friends have been so accepting and totally fine and supportive?

Elfy Scott: Yeah, so stigma is a funny thing. Stigma can change quite markedly across different cultures and contexts, and I don't want to speculate too wildly on this, but I do think that there is an aspect of their shared Islamic belief system that comes into this. I do think that there is a part of their culture that leads them to more willingly accept phenomena around spirituality and unusual psychological experiences. You know, ghosts are very much a part of their culture and spirits and things like that. So I think that there is a more willingness to accept what Mum's experience has been psychologically in that way.

Sana Qadar: Do you know anything about why your mum developed schizophrenia? Does your family know anything about genetic factors or why?

Elfy Scott: So I believe that there must have been some genetic loading factor. I say this because my aunt actually had a complex mental health condition as well. We don't know what her diagnosis would have been had she had access to psychiatry in Indonesia. But yeah, she lived for her entire life with the obvious symptoms of a complex mental health condition. So I think there is some genetic element to it. I also understand now looking back at her story, that there must have been some aspects of trauma that led to the manifestation of these symptoms. So when I spoke to a wonderful professor in Melbourne who explained to me how trauma can actually affect the brain and the ways that it can lead to the onset of psychotic diagnoses. And she said that immigration is a big part of it, feeling culturally at odds with the world around you. That can be a huge factor in leading towards a complex mental health condition. But yeah, there are no hard and fast answers here. It's not like I can say for sure. It might have been some of those factors or none of them.

Sana Qadar: Yeah. So your mum was in her 30 I think, when her schizophrenia developed and you're in your early 30s now, how much do you worry about your susceptibility to schizophrenia?

Elfy Scott: I, I do think about it and I've thought about it for many years. Like it's an anxiety that I absolutely carry with me. And my sister has told me that she carries as well. And I think that it's a possibility. I just have to accept that if it does eventuate, you know, I will have access to exactly the right kind of care. I'll have the exact right type of family to look after me because they understand and those are privileges ultimately. And I am not terrified in the sense that I know I'll be looked after. And that's just something that I'll live with now.

Sana Qadar: So schizophrenia was the one thing your family never talked about growing up, hence the title of the book. Is that still the case now?

Elfy Scott: No. No. So it's it's not something we talk about frequently, but it's absolutely something that we feel more comfortable talking about now. And actually my mum is very sweet in the way that she brings it up and she'll tell stories now and she's much more willing to talk about her inner life and her emotional life. And yeah, it is something that we do feel quite a bit more open discussing now, which is nice actually. I think in a way the book helped us to break through a little bit of that.

Sana Qadar: Yeah, I was going to say, what do you think changed?

Elfy Scott: We got older and and I agreed to write a book, so I think that's most of it. Yeah.

Sana Qadar: That is Elfy Scott, journalist and author of the book The One Thing We've Never Spoken About, Exposing Our Untold Mental Health Crisis. That's it for All in the Mind this week. Thanks to producer Rose Kerr and sound engineer Russell Stapleton. I'm Sana Qadar. Thanks for listening. I'll catch you next time.