When a family member receives a schizophrenia diagnosis, it can dramatically change the dynamics of your family. For example, one-third of people with schizophrenia live with a family member. Families can provide emotional support, financial support, and advocate for better treatment options.
Host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard explore how schizophrenia can affect family dynamics in this episode of Inside Schizophrenia.
Guest Elfy Scott joins. She is the author of “The One Thing We’ve Never Spoken About: Exposing Our Untold Mental Health Crisis,” a book that focuses on the silence and stigma that still surrounds complex mental health conditions. She shares her experiences growing up in a family with a parent who lived with schizophrenia.
Elfy Scott is an award-winning freelance journalist, presenter, and producer. Her book, “The One Thing We’ve Never Spoken About: Exposing Our Untold Mental Health Crisis,” is an investigation into the failings of Australia’s mental healthcare system, grounded in a personal story of a mother-daughter relationship.
Elfy Scott grew up in a household where her mother’s schizophrenia was rarely, if ever, spoken about. They navigated this silence outside the family home too; for many years, this complex mental health condition was treated as an open secret.
Over the past two decades, we have started talking more about common mental health conditions like depression and anxiety. But complex conditions like schizophrenia, bipolar disorder, and psychosis have been left behind, as have many of the people who live with these conditions and those who care for them.
Part memoir, part deep-dive investigation, “The One Thing We’ve Never Spoken About” is filled with rage at how Australia’s public discourse, emergency services, and healthcare systems continue to fail so many people. It is also a work of care, telling the little-heard stories of people who live with these conditions and work at the front lines of mental health. Above all, this timely, compelling book is informed by hope and courage, breaking down taboos and asking big questions about vulnerability, justice, and duty of care.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.
To learn more about Rachel, please visit her website, RachelStarLive.com.
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.
Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia a Healthline Media podcast. I’m your host, Rachel Star Withers here with my great co-host, Gabe Howard. One-third of people with schizophrenia live with a family member. Our families can provide emotional support, financial support and advocate for us and even help us with getting treatment. When a family member is diagnosed with schizophrenia, it can dramatically change the dynamics of your family.
Gabe Howard: And joining us today is Elfy Scott, who’s an award-winning freelance journalist, producer and author of the book “The One Thing We’ve Never Spoken About,” and that book focuses on the silence and stigma that still surrounds complex mental health conditions. And they included Rachel in the book.
Rachel Star Withers: Yes, She contacted me a few years ago when she first started writing this book. And she’s also going to be sharing with us her experiences growing up in a family with a parent who had schizophrenia.
Gabe Howard: Rachel, it obviously comes as no surprise to you that families play key roles, especially in the early stages of a schizophrenia diagnosis.
Rachel Star Withers: I do live with my parents. They are the most amazing support for me. And I always tell people when it comes to family and having that family support, it really is a privilege because not everybody out there has that. And I understand that. I’ve talked to a lot of people with schizophrenia. Most of the times when someone has like these major family issues, the schizophrenia might be a part of it, but it’s not the only part. I do want to say today that as we’re going through this episode, don’t lose sight of the family. It’s not just about the schizophrenia. There’s so many complex pieces that go into living with other people and especially people that you’ve grown up with, whether you’re talking about a sibling, even extended family, grandparents, nephews, nieces, uncles, aunts, etc. I think we all have crazy family stories that have nothing to do with a mental health issue.
Gabe Howard: And I never miss an opportunity to remind people that people who live with schizophrenia are also people and everything that can happen in a quote-unquote normal family or stereotypical family or average family happens in families of somebody who happens to live with schizophrenia. I just feel that that’s super important to point out, because so often, especially people listening to podcasts like ours, they think, Oh, this is only something that happens in my family because I live with schizophrenia or my loved one has schizophrenia.
Rachel Star Withers: However, your family and those relationships can affect your schizophrenia. I think around the holidays we always hear people talking about like the stresses of going back home, you know, let’s say you don’t get along with great grandmother or you do get along with so-and-so, but not the other. I know every time that my whole family gets together, yes, there’s going to be some tensions. You know, there’s some things you don’t talk about, at least in my family. None of it has to do with my schizophrenia at this point. At this point in life. Now, rewind back a while ago, I’m not so sure about that. When I was first diagnosed, it took me a while to open up to my parents and I didn’t really want it getting outside of that bubble for, I’d say, the first few years. And then I started talking about it, and I was okay with other people in the family knowing, but I didn’t want them to see it. And I don’t think anyone wants to be seen at a a weak point, but I didn’t want anyone to see me when I was having a psychotic break. And that’s what I worried about. I just didn’t want people to see me. I don’t want to say being weak, but I guess not being there 100% mentally.
Gabe Howard: I think people can really understand that when we’re at our worst, when we’re not feeling well, when we look bad, that we don’t want people seeing us. I don’t think that that’s a difficult concept. I think that’s really just part of the human condition. But for people with schizophrenia, there’s a little bit of an added oomph there in that. What we are worried about is not only being seen not at our best, but also any of the negative responses that can come from that. Will somebody see us suffering from a schizophrenia symptom and think, Oh, well, now I can’t let them do X, Y, Z? Let’s say that in two weeks you’re going to borrow your uncle’s car, and now you’re having you’re having the shakes, you’re rocking back and forth. Maybe your vision is blurry, maybe you’ve lost your balance a little bit and you think to yourself, okay, well, I don’t want people to see me like this, but now you’re also thinking, well, now wait a minute. If my uncle sees me like this, is he going to retract the car offer and say, I don’t trust you with my car anymore.
Gabe Howard: Right, you’re trying to explain how the symptoms of schizophrenia work. That obviously if you felt like that the day you were borrowing the car you would decline. He wouldn’t need to tell you that you can’t borrow it. You would understand that you were not in the space to drive. But, this is two weeks from now. And all of the sudden schizophrenia just sort of permeates all of the decisions for today, two weeks a year from now. And people were thinking, no, no, no, I can’t let you do that, because three years ago I saw this. And that’s the real reality for people who live with schizophrenia that were really trying to prevent that stigma by not showing people the symptoms. And of course, if we don’t show people the symptoms, we can’t get that support and the help that we need. It comes back, Rachel, to we’re worried about the negative consequences of essentially being sick.
Rachel Star Withers: And especially you brought up the car situation, but also think about, you know, if there’s a family business involved, can I trust? And so I don’t want to say anything morbid, but when you think about, like wills and what not and leaving things to people like, well, obviously we don’t want to leave such and such because, you know, she can’t be trusted or he can’t be trusted or you never know what their mental state will be. And that’s a stigma that’s very personal. And it can be it can be very frustrating, I’d say, as a person with schizophrenia. I wouldn’t want someone to make decisions about me based on hypotheticals. And I don’t think anyone would want that. But I do think when you have the term just schizophrenia, it’s a scary term. And even your family, they’re going to have some sort of stigma. If you have schizophrenia out there, and I always stress this, yes, it is a hard pill to swallow when you first get diagnosed and a lot of families do not respond the best way. Understand that this is kind of a big bombshell for them, too. I don’t want to like just say forgive them nonstop, but but do keep that in mind. Not everybody responds the same way. So it can be hard when you’re first diagnosed to even bring up that you have schizophrenia. However, if you have a good relationship with certain members of your family, it can be very helpful to bring it up to them. For one, having someone who’s that close to you.
Rachel Star Withers: They can notice symptoms that might be coming. They might can notice changes in you. I always say that there are certain changes with me that happened before I go into a full psychotic break. The best person or not person, but entity and noticing them has always been my dog. My dog always seems to be the first living creature to notice I’m going into a psychotic break, but my mom will kind of say things to me too. She’ll be like, You know, you’ve been really quiet lately. You haven’t been moving around as much. And there’s just smaller things that she’ll pick up on that. That’s a sign that, hey, Rachel is starting to spiral downward, so it can be good to have a family member that you trust. And you can even bring it up to them and say, Hey, mom, dad, sister, brother, cousin, great grandma. If you start to notice this, let me know. And it doesn’t have to be a whole intervention of let’s sit down and have a deep talk about why you’ve been, you know, sleeping late every morning. It could just be even as simple as a text or like mentioning, Hey, I noticed you, you haven’t been waking up before noon the past five days. Little things like that. I know for me personally, it helps me when people notice things and tell me because I might not have realized them, I might not have realized, Oh, wow, I. I might be starting to go into a psychotic break right now.
Gabe Howard: I think a good comparable are marriages that have lasted over 25 years. We all know somebody who’s been married a long time. Grandma, grandpa, mom, dad, aunt and uncle, older relatives. And they sort of have this shorthand, right? They look at each other certain ways, They say certain things, and the other person picks up an immediately and we’re like, What? What just happened? So it’s a two way street. It’s the picking up on the nuances of when psychosis is coming on. A hallucination is coming on, depression is coming on, or when your loved one needs more serious intervention.
Rachel Star Withers: As a person with schizophrenia, another benefit to having a family member who you’re close with to notice different symptoms is that family members tend to notice negative symptoms of schizophrenia. A lot of people, you know, might notice the positives, the hallucinations, the delusions, but the subtle ones, meaning the depression, the things like that, when you have somebody that you’re close to, they tend to pick those up. The depression, the starting to isolate from society. I know that’s one of the biggest ones my dad always picks up on is me starting to isolate me not going and eating normally, things like that. He just he’s the best one. And I think it’s because he is such an outgoing person that when I’m not around for him to talk to, it’s like, Wait a minute, where’s Rachel? I need to go and find her. The other great thing about family is that they can encourage you. Being able to have a family member to say, Hey, I’ll go to a support group with you. I’ll go and try this new treatment with you. Having that kind of support system can really help people take that next step.
Gabe Howard: Rachel, I have always been envious of the closeness of you and your dad and you and your parents in general. But I have to ask, what was the role like in the beginning?
Rachel Star Withers: I knew I had some sort of mental issue for quite a few years, and I was trying my best to handle it on my own. And that was not going so well. And it did take me a while to get fully diagnosed. And when I did, I kind of was at the end of my rope. I definitely could not afford the insurance and the doctor’s bills at the time to continue to go down the road of getting treatment. And that was when I sat my parents down. And that’s when I told them. And they were great because right away they were willing to step in like, okay, let’s start this journey of getting you treatment. As far as accepting the schizophrenia diagnosis, the understanding of what is schizophrenia? What does this mean now that she has it? That that took a little bit of time. I think my mom had a lot of fears right off the bat of, okay, nobody could know because it’s going to ruin her life. She’ll never get a job. She’ll, yeah, have this horrible life if anyone finds out. So I think the actual, like accepting the diagnosis did take time, but my parents jumped in right away as far as helping me get treatment. And they were my main support as far as making sure that I, I did get treatment, that I went to the doctor and that I, I started taking all the different medications and whatnot.
Gabe Howard: I always like that you point out that this is a partnership between you and your parents and that everybody was confused. Equally, there’s things that you got wrong. There’s things that they got wrong. There’s things that you got right. There’s things that they got right. There was just it was just kind of like pandemonium all over the place. As you navigated this together, I always get this really big sense of team from you and your family. That’s what comes across to me when you speak. Everybody was working together and that whether mistakes were made or success was had, everybody was on the same boat, everybody was rowing and everybody was doing their best. Because I got to tell you, in in other families that I talked to and other people, whether it’s caregivers, family members, friends, people living with schizophrenia that fractures real quick. They did this. They won’t do that. I can’t get my. They hate me. They hate you. They it just it really becomes this it really seems ultra-competitive when other people talk like who’s going to win the argument versus when you talk, which is how do we all beat schizophrenia?
Rachel Star Withers: One advice I always have for when people with schizophrenia reach out to me about having a family that doesn’t accept them, that doesn’t understand. And especially coming from a religious background, the area that I live in, the Bible Belt, I can easily understand that it’s not something that’s just like a foreign concept to me, that someone would be cast out of their family for having a mental disorder. Believe me, no. I unfortunately myself have been around a lot of people who just don’t believe that mental disorders, mental illness exists or they believe that it’s caused by personal choices or even demonic choices that you’ve led into your life. When people reach out to me and they say that a family member has pushed them out, I don’t want to say that, just cut them off. However, find another person, though, that you are closer with. Usually the entire batch of apples isn’t bad. Usually you might have a sibling who is more rational. You might be closer to a dad than a mom, to a stepparent, to, you know, a grandparent. A lot of times that person can be your way in. It’s rough when we’re talking about these family issues because every family is different. Honestly, Gabe, we have to admit that there are bad people in the world and there are people that are never going to accept you no matter what you do.
Gabe Howard: It’s always difficult to have to look outside of our core family or our nuclear family, especially when we want people like, well, I want my mom to understand, okay, but your mom doesn’t, so try talking to your father. Okay. But I. I want my mom to understand. Well, I understand that, but your mom doesn’t try talking to your aunt. But I want my mom. We do set ourselves up to fail in this way. And speaking from the other position, there’s so many times like, Well, I want to help my child. Okay, But have have you asked their father to talk to him? No, no, no. I want to help my child. There’s a letting go on both sides. Both for the person with schizophrenia to seek out other family members that they can get relief from, have an ally in, maybe help bridge those gaps and of course, get the support that they need. But also on the caregiver side, I understand I really do as much as humanly possible. I understand why somebody would want to save their family member. I get it. But sometimes the best way to save somebody is to get out of the way and find that other person. The example that I love to use is that if the house is on fire, I understand trying to get in there and pull your child out. But when the fire department shows up, don’t stand in their way, Get out of the way of the fire department. They have equipment, they’re trained professionals, and people can really relate to that not being in the way of emergency services. So sometimes we have to just apply that into the little microcosm of our family. There may be other relatives.
Rachel Star Withers: A really interesting dynamic in families, I think is always going to be the siblings, whether you’re talking about older or younger, middle child situation. There can be a lot of stigma based around being the sibling of someone who has schizophrenia. Sometimes there can be guilt that they’re the quote-unquote healthy sibling, you know, that they don’t have a mental disorder. At the same time, they could feel left out that maybe everybody will. Okay. Well, they only focus on my sister who has schizophrenia or my brother. You know, they never notice what’s going on with me. When you think about like the sibling situation, yeah, that’s a little different. I’m more okay with my parents helping support me than I am my brother.
Gabe Howard: Rachel, if I if I may ask, how has being diagnosed with schizophrenia affected your relationship with your brother?
Rachel Star Withers: I wasn’t keeping it from him, but I didn’t really, like, talk about it for many years. I assume he knew for when I was making videos about it, so I assume he knew. But it wasn’t. We’d never actually spoken about it. And it wasn’t until he happened to be in town, home from college, and I had a some sort of psychotic situation. I don’t remember exactly what happened, but I had to call my mom to come pick me up. And so my brother came and I will say that was very jarring for me because already mentally not be well and then knowing that I’m spiraling out of control and then seeing my brother there, who I never actually said anything. I wished I had brought it up differently. I wish that hadn’t been the first time that we I guess he had to interact with my schizophrenia was right there me in being in that state.
Rachel Star Withers: Since then, we’ve talked about it very openly. He’s asked me questions. He checks on me a lot. Our relationship has gotten better. It’s one thing I want to stress though. When you have schizophrenia, speak up to other family members and be like, Hey, I’m okay with, let’s say you guys knowing, but maybe I don’t want grandma and grandpa to know. Maybe I want to tell so-and-so myself, you know, be open about those things to avoid situations like that.
Gabe Howard: I often think that when it comes to schizophrenia, it’s certainly better to choose when we tell people, because whether or not we tell people is probably out of our control, crisis is going to happen. The people around us are going to need support if we’re in a serious state and medical services or police are called, obviously, then all of a sudden the people around us are going to start putting pieces together and coming up with their own reasons that this happened. If we end up inpatient, can we keep that from people? Maybe. It depends on how long we’re in the hospital for. I really try to stress that eventually people will probably find out. Schizophrenia is a big, big illness and for me I would rather be the one to tell them when I’m stable, when I’m well with other members of my family. Schizophrenia is very, very large. And trying to hide it is probably an impossible task.
Rachel Star Withers: Another intense dynamic that you’re dealing with, with families is always going to be children. Any time kids are involved, you know, they’re always running their mouths. They’re saying things that embarrass you. They’ll always like say something out loud that you sit in quiet. When it comes to children, that is always a big thing. Now if you have schizophrenia and you have a child, if let’s say you are a family member and you have a child and let’s say their uncle has schizophrenia. Talk to the children and be up front. Explain to them in words that they’ll understand what’s going on, because it can be confusing for children. As a person with schizophrenia. It would be incredibly hurtful to me if someone’s children were scared of me. It’s really going to land on the parents many times be like, hey, let’s say we have a family gathering and Rachel is going to be there. Just a heads up. I want to talk to you now. She has schizophrenia and she might act a little strange at times. So when you’re dealing with children, you know, be up front, let them ask questions and. Make sure you always will say like, make sure you make it clear. Listen. Do not go telling everyone at school your aunt has schizophrenia. Make sure they know who they can and cannot tell this to. Oh, I probably don’t want to be out with some little kid from my family. And then, like, tell everyone at the grocery store, guess what? Rachel sees people that aren’t there. You got to be careful with kids. But do be open. Help them understand so that they aren’t scared or they’re not upset when something might occur around them.
Gabe Howard: I think it’s also really important to talk to kids because one kids know more than we think. That’s just the reality of it. We think that they didn’t overhear it, but they absolutely overheard it. And imagine this simple scenario, right? The word schizophrenia is going to come up a lot If you’re helping somebody manage schizophrenia and you just say it right? You say to Rachel, you think privately in the in the kitchen, Hey, Rachel, how is your schizophrenia been lately? And Rachel says, well, my schizophrenia has been doing okay. You don’t realize that under the table is the five-year-old. So the five-year-old, upon hearing this word, they’ve never heard the word schizophrenia before. So they go to school the next day and they start asking around what schizophrenia, what schizophrenia? And a teacher overhears it and says, What are you asking? Well, I’m asking what schizophrenia is. Now the teacher thinks, Oh, I bet it’s because of that latest news article or mass violence situation or maybe an anniversary of something. So I bet they’re afraid and they say, don’t worry, people with schizophrenia aren’t coming after you. You’ll be okay. You don’t have to worry about that. Just it’ll be all right.
Gabe Howard: Completely misreading the situation, because the stigma of schizophrenia is everywhere, even when it is not attached to a particular story or person. Now, the five-year-old knows that, hey, Rachel and the word schizophrenia are tied together and knows that My teacher told me to avoid people with schizophrenia. So now all of a sudden, the five year old doesn’t want anything to do with Rachel. The bottom line is this there are a lot of things in the world that are uncomfortable. Avoiding them only makes them worse. And I got to tell you, kids are much more resilient when we give them credit for. I guarantee you’re going to explain schizophrenia to them and they’re going to be like, can I go now? And they’re just going to run off and that’s going to be the end of it. But you’ve created this situation where the next time they hear the word, they’re going to run back to you and say, Hey, my teacher was talking about schizophrenia and boom, conversation on. It’s hard with kids. I understand that we want to protect children, but we also need to protect children from misunderstanding.
Rachel Star Withers: What’s funny is that, you know, children already lived so much in a make-believe world. And when you think about all the cartoons and all the Disney and everything, you’d be shocked like how many kids understand it and a lot more than you would expect. You know, they’re used to watching superheroes and things, you know, who have special powers and who do these things and who are different and, you know, creatures of different skin colors like blue and green. And so honestly, them accepting that you hallucinate a lot of times kids aren’t fazed by that. It’s just kind of like, oh, okay. Because they’re so used to cartoon characters that are larger than life.
Rachel Star Withers: And we’re back discussing schizophrenia and its effect on family dynamics.
Gabe Howard: Rachel, Let’s go ahead and segue onto our guest. You interviewed a very, very cool person, Elfy Scott. She wrote a book, which, of course, Rachel is in, “The One Thing We’ve Never Spoken About.” It’s been released by Pantera Press. And I don’t want to steal any thunder from Rachel, so let’s just go ahead and roll that interview right now.
Rachel Star Withers: Our guest today is Elfy Scott, who is a journalist and author, and she has written a really amazing book that we’re going to get into. But first, I want you guys to just learn about her. Elfie, tell us a little bit about you.
Elfy Scott: Oh, God. Okay, so my career is a little bit all over the place. But here in Australia, I report on politics and mental health and a lot of environmental climate science. So I do a little bit of everything.
Rachel Star Withers: And what is your connection to schizophrenia?
Elfy Scott: My mum has schizophrenia and I grew up in a household with her and the reason that I felt compelled to write a book about schizophrenia and other complex mental health conditions was just because I saw how incredibly well my mom lives with it and I wanted to understand how that was possible. And then also why other people seem to struggle and the structures that make it difficult for them to achieve the same sort of lifestyle that my mom has.
Rachel Star Withers: How did her having schizophrenia affect your family dynamics?
Elfy Scott: I don’t necessarily feel as though my mum’s mental health condition really affected my family in any particular way, especially in any particularly negative way. I feel actually as though mostly the way that it affected our family was just the fact that we couldn’t speak about it, which is why the book is called “The One Thing We’ve Never Spoken About.” So it was really just the fact that we had this strange kind of open secret in the household that kind of affected the dynamic. That was really the strangest part of it for me growing up is that I could never speak about it with friends, I could never speak about it with family, and it was always just kind of there.
Rachel Star Withers: Did you know growing up that she had schizophrenia? Like specifically? Or maybe it was just oh, Mom can be kind of weird.
Elfy Scott: That’s exactly it. I guess I had a sense that something was a little bit off or like, a little bit strange, and there was something that we weren’t addressing openly. And then maybe when I was about like 13, 14 years old, it kind of clicked into awareness what was happening. And I was actually only ever told directly by my high school guidance counselor. She was the only one who ever gave it a name. She was the only one who ever said, Your mom has schizophrenia. Up until that point, I had just gotten this sense that there was something slightly, slightly eccentric about my mom’s behavior. But I think my mom might actually just be also an eccentric person, like regardless of a mental health condition. You know, my mom is very adorable. She dresses in like a quiet, funny, sort of eccentric, like, colorful way. But I think that’s just what she does culturally as well. She’s Indonesian and she dresses in a lot of q batik prints and things like that. And, you know, she never quite fit into the into the homogenous kind of white neighborhood that we grew up in. So it was always mum’s strange, but then there’s something strange going on.
Rachel Star Withers: Outside of just the eccentric-ness. Was there anything very, I guess, more serious symptoms that you noticed growing up?
Elfy Scott: Yeah, absolutely. So there were parts of her mental health condition that were unavoidable. So there were things that she did like talking to herself. She would have certain delusions which pop up every now and again about things being implanted in her brain, like microchips and things like that. There were paranoias that she had about people breaking into our house and stealing documents and things like that. There was always sort of something quite low level. There was never any sort of explicit psychosis, I guess you would say nothing like hugely severe. But there was always something that was just a little bit strange.
Rachel Star Withers: I do have to ask. Do you know why that your high school counselor told you she had schizophrenia? Like, did they know for sure? Or they were just like, No, it’s obvious she does.
Elfy Scott: [Laughter]
Rachel Star Withers: Or, like, were they, like, maybe told to tell you? I was just kind of wondering, did this person take it upon themselves to kind of out her or.
Elfy Scott: No, no. So I I’ve never gotten this down, clearly. But what I think happened is that she was told by my dad, and then she relayed that news to me. It was, I think it was something that we wanted to avoid talking about in the household. So she seemed like the logical person to break that news to me.
Rachel Star Withers: Because your mother has schizophrenia, have you ever worried that you might have it or develop it in time?
Elfy Scott: That is actually an anxiety for me and it’s something that I still carry. I think I’m an anxious person in general. I think I do worry about most things. And so this is just, just another one of the anxieties that I happen to carry around with me. It’s something that I think about. It’s something that drives my lifestyle to some extent in the sense that, like I always want to be healthy, I want to look after my mind. I want to not drink a huge amount or do drugs and things like that. I just try to be quiet and moderate with everything. And, I know that there’s no sort of obvious prevention against these sort of things. If it happens, it happens. And funnily enough, if it did, then I would be in exactly the right kind of family to look after me, because we know that we can look after each other through these sort of things.
Rachel Star Withers: You’ve already mentioned it a little bit, but tell us about your book that you’ve written.
Elfy Scott: The book is called “The One Thing We’ve Never Spoken About.” It is basically a memoir. Well, at least it starts out that way. What I really wanted to do was explore the kind of structural inequalities that mean that people have vastly different experiences of complex mental health conditions. So I know for a fact that when my mom first became acutely unwell, she was able to afford very regular psychiatry sessions for years just because of the socioeconomic bracket that we happen to fit into. What I wanted to do with the book was look at how stigma and inequality and the failures of larger governmental structures, including medicine and the justice system, how all of those fade into a cycle that makes it really difficult for a lot of people to survive and thrive with complex mental health conditions in Australia. So it’s kind of like a big sort of ouroboros of just like, you know, failure. And it’s very frustrating to look at it from that perspective. But I think it also gives hope in the idea that if we start speaking openly about complex mental health, which we currently don’t, obviously, and if we take parts of this cycle seriously enough to try and break them, then hopefully people will be able to live with the same sort of opportunities that my mum has been given, basically.
Rachel Star Withers: Many people who are describing a loved one’s journey with schizophrenia discuss a fair amount of trauma. Were you traumatized by growing up with a mother with schizophrenia?
Elfy Scott: Honestly, no. I don’t feel as though I experienced any trauma, really, in my childhood. My childhood was really happy and normal and, well, I say normal in quotation marks.
Rachel Star Withers: [Laughter]
Elfy Scott: My family is still extremely strange, but you know what I mean? And it was actually a little bit of a challenge at the beginning of the book and throughout the writing process, really, because I knew that there were so many narratives out there of people who have trauma and want to be able to talk about that. But I didn’t feel like I fitted in with that particular cohort. I think when I was writing the book, I didn’t feel entitled to be writing it because it didn’t feel traumatic to me. And I think so much of the narrative around this is like it’s supposed to feel traumatic or like you’re only entitled to write about things if you have trauma from certain events. And I think at the end of the day, what I had to grapple with was the idea that the story was valid just because it’s our story and it’s just the truth. And I think that it has its place. And yeah, I totally know what you mean, that there are so many stories out there informed by terrible things that have happened to people. And I think that they’re incredibly valuable in their own way. But I hope that my story is valuable in a different way.
Rachel Star Withers: Awesome. And thank you because, yeah, I think a lot of times people want to hear the gory details. They want to hear the, oh my God, you’re the sob stories and you know this horribleness and in the media, unfortunately, many times that just further stigmatizes schizophrenia, you know, But no one’s like, yeah, I had a happy childhood. You know, that’s not going to that’s not the most exciting thing to read or hear. You’re like, Oh, good for you.
Elfy Scott: [Laughter] Yeah, it is true. I feel like people are educated, informed, and they learn from trauma. But what I actually learned from was the privilege of what my mom experienced and the privilege that my family has. And that’s the reason that I kicked off all of this investigation and research is because I knew that we were different for that reason. And I wanted to understand how people who didn’t have access to the same privileges were surviving.
Rachel Star Withers: In creating this book, you interviewed numerous people, including myself. What is something that you learned in doing these different interviews with people of schizophrenia across the world?
Elfy Scott: The one big takeaway that I actually walked away from all these interviews with was ww everybody who has a complex mental health condition, who has this sort of firsthand experience, who works on the front lines of mental health, who I spoke to for this book were just so lovely and so generous and open. And I feel like because this community has been so marginalized, so ignored for so long, the people who are willing to speak out about it now and who have dedicated their lives to really caring for people and ensuring that people with complex mental health are looked after and leading fulfilling lives. Those are just like some of the best people you’ll ever meet. And that means that it was a huge privilege and a pleasure to write, actually, because every conversation that I had was just so joyous, even though there were hard times and like, it was, you know, challenging and dark in some places. At the end of the day, everybody who I met, I’ve forged really deep and meaningful connections with, and that’s been incredible to me.
Rachel Star Withers: Did you notice any different trends between the people, like maybe by where they live or age groups or anything like that?
Elfy Scott: No, absolutely not. And I think that’s the funniest thing, is because this affects everybody, right? Like it affects everybody across race and gender and age and different socioeconomic brackets and location. Like it’s just something that is there and we’re not talking about. And I think that’s the most striking part, is that it really binds and connects these people who would have never met otherwise. It’s something that I spoke to a couple of sources about, like the care groups that they attended and things like that. There’d be people there that they would have never spoken to or even vaguely interacted with in day-to-day life. And they’re all there and they’re all fighting for the same thing. And I think that’s a really important lesson actually, is just that, you know, nobody is protected from complex mental health. There’s just nothing that can actually, like, fortify you against it. And that means that we have to accept this vulnerability and look after people as much as humanly possible.
Rachel Star Withers: You have a very strong, supportive family it sounds like. Did you notice that when talking to different people for your book, other situations where people relied on their families a lot? I know. I know. When you interviewed me, yes, my family comes up a lot, but other than just me. Other interviews that, like, stood out?
Elfy Scott: Yes, I actually wrote a chapter on the experience of carers, specifically carers and families who wrap around people with complex mental health conditions. I think that’s one of the most striking things that you learn as you look into this topic, is that because there are so many broad failures of systems like the the mental health care system and the justice system and the housing system, because all of these systems are just so insufficient, it means that people fall through the cracks without families and families know that they need to be there. And I met the most wonderful carers, people who had put decades of their lives on hold to care for family members. And, you know, it generally tends to be women who take on these roles. That’s something that I definitely noticed. And I think here in Australia, I think it’s incredibly important that we take the caring role much more seriously because these people not only sacrifice time and lives and their social health, but they also sacrifice a huge amount of earning power as well. And that actually plays out a lot in the statistics here. I met carers and I met families and I think that it just became more and more obvious to me how they were holding their family members afloat when systems were failing.
Rachel Star Withers: So I was very excited because you did contact me almost like this two years ago now. When it came to finding a guest for this episode dealing with family dynamics, I’m very hesitant in general to have family members on the show, especially children of people with schizophrenia, because so often the story is about the person who doesn’t have schizophrenia having such a horrible life, how hard their life was growing up with a crazy person. You were probably one of the first people who I’ve ever met who talks openly about having a parent with schizophrenia and doesn’t portray it as this huge, horrible burden. You spoke so highly of your mother and you spoke so highly of people with schizophrenia, and that made me trust you.
Elfy Scott: Yeah, that’s such an interesting point. And it’s like, yeah, I agree with you that, like there aren’t many narratives like mine out there. And I think that part of the reason that I actually wanted to write it was because I had just when I was researching this as a teenager, when I was just finding out about what schizophrenia was, there was literally nothing out there about people living well and people living successfully and happily. And I saw my mom and it was just such a jarring perspective to see somebody who is so loving and giving and still is to this day, like she’s a fantastic mom. I can’t stress how wonderful and loving and perfect she is. And I think that it was really important to me to be able to portray a story where she had recovered from schizophrenia ostensibly, and she was living well on medication and living a fulfilling life. And I think I come from the perspective of that, because when I first started to write the book, I, I didn’t actually pitch it anywhere until I had spoken to my mom. And because I just don’t want to share anything that my family would be uncomfortable with, we’re all too close. It would be too awkward.
Elfy Scott: And my mom, I didn’t expect her to say yes, but she said yes and she said yes on the basis that it makes other people’s lives better. And that was the only thing that she wanted to do by sharing her story. I guess giving that like more optimistic perspective was always important from the beginning and truly, there’s nothing in the book that’s disingenuous about my account. It’s all there on the pages. And I just wanted to make it really clear that my mom is my mom and I love her. And I wanted to write about her because she’s really special to me. And I think that what her story tells is hopefulness, essentially.
Rachel Star Withers: How can our listeners find your book and learn more about you?
Elfy Scott: So the book comes out on the 31st of January. And you can just order it on any major online bookseller. And if you want to find out more about me, I guess you can follow my social media page. So like @elfyscott on Instagram.
Rachel Star Withers: And what’s the name of the book again?
Elfy Scott: “The One Thing We’ve Never Spoken About.”
Rachel Star Withers: Thank you so much, Elfy, for joining us. You’re absolutely amazing. And thank you so much for writing this book. I do think it can help a lot of people. And I know just from the few chapters that I got to read, I was very impressed with it. And it made it made me feel less alone.
Elfy Scott: That means such a huge amount. Rachel, thank you so much and thank you for inviting me on the podcast. As I said before, huge fan.
Gabe Howard: Well, Rachel, I know it’s become cliche, but as always, great job. I want to tell you, as I was listening to Elfy speak, it gave me well, frankly, Rachel vibes. She was so supportive of her mother and her family and she was talking about managing the schizophrenia. And often when we hear people talk about family members living with schizophrenia, there’s an anger, there’s an annoyance, there’s a fear, there’s a confusion, There’s a lot of, well, we’re going to go with negative vibes. And Elfy generated positive vibes. As somebody who also generates positive vibes, what were you thinking during the interview?
Rachel Star Withers: I mean, that’s definitely what attracted me to her. I have a lot of people who message me in there, like I’m working on a movie, I’m working on a book, can I interview you for it? Many times they’re horror movies. I’m not going to lie. And or it’s, it’s like I’m writing about a schizophrenic killer, but I really want to know what it’s like to have schizophrenia. It’s like, okay, well, there’s a lot of problems wrong here in just that sentence. But I always say yes because I’m like, even if what they’re working on is not something I support, I would like to let them meet a real schizophrenic and hopefully that might change some of their ideas going in. So it’s not uncommon for me to be interviewed for like kind of books and things. But her attitude right away, when I was interviewed, I was like, okay, this is someone different.
Rachel Star Withers: The way she spoke to me. It had respect in it. And that helped me trust her. I guess right away, I didn’t feel she’s like writing this horror book. She’s going to just like, focus on all the salacious details of schizophrenia. Like, tell me your worst hallucination, how scary it was. What was the most dangerous thing? That’s you know, that usually tends to be the questions, not. Okay. Tell me about your home life. Tell me about, you know, your interactions. It was just a different interview. And that right away was what stood out to me. And I follow her on social media and she’s just a very cool person. And the more I’ve got to know about her like she really is, she’s just very upbeat and I like her views, the way she views her family, the way she views schizophrenia. You know, that inspires me. I want to continue my family’s growth. And I, I want to mirror like kind of that positive energy that she had. So, yeah, she was an incredible inspiration for me.
Gabe Howard: Well, I think that that’s absolutely great. And we need to have more of these conversations out there to model the way for everybody and to give people hope and something to strive for. And any time we can add light to the darkness, I think we’re all in better shape.
Rachel Star Withers: Absolutely. Family dynamics are different for every family. Yes, having a family member who has schizophrenia can add stress to relationships. That’s why communication is key. Check-in with your different family members. How are they coping? Do they have any questions? Do they understand what schizophrenia is? Thank you for listening to this episode of Inside Schizophrenia. Please like share, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia, A Healthline Media Podcast.
Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at psychcentral.com/is or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.