Isolation is a symptom of schizophrenia. Being homeless is isolating yourself from society, which is the extreme manifestation of the mental health condition. Host Rachel Star Withers and cohost Gabe Howard explore how delusions, isolation, and hallucinations can lead to homelessness. Guest Bethany Yeiser shares her 4-year experience being homeless due to her schizophrenia. Listen Now!
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Bethany Yeiser is a motivational speaker and the author of “Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery” (released May 31, 2014). Bethany was a scholarship winner, researcher, and violinist before she became severely mentally ill and homeless her senior year of college, 2003. Bethany established the CURESZ Foundation with Dr. Henry Nasrallah in July 2016. CURESZ stands for Comprehensive Understanding via Research and Education into SchiZophrenia. Bethany also maintains a blog called “Recovery Road” on PsychologyToday.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline media podcast. I’m your host, Rachel Star Withers here with my co-host, Gabe Howard. Now our podcast is Inside Schizophrenia. So right away, like even our title, we’re intense. Got an intense subject going on. And then we go and explore even more intense topics, and today’s is homelessness, which as far as the topics we discuss, I think this is going to be something that the general population is most familiar with. You know, regardless of your life experiences, pretty much everyone has come in contact with a homeless person, seen homeless people. And I would say everybody agrees that homelessness is a problem. But homelessness due to schizophrenia is very different than just not having a home to go to.
Gabe Howard: One of the things that’s important to point out is that if you’re, quote, not in your right mind, if you’re in crisis, if you’re symptomatic, suffering from psychosis, if schizophrenia is blocking your ability for logic and reason, you can’t even advocate for yourself. You can’t call a shelter. You can’t couch surf. You can’t call a buddy and ask for help. You’re not seeing things correctly. Homelessness is also one of those things that’s on a spectrum. And it’s not one size fits all.
Rachel Star Withers: Our guest, coming up shortly is Bethany Yeiser, who is a TED speaker, president of The CURESZ Foundation and writer. She also has schizophrenia and was homeless for a time. Gabe, we’re looking at homelessness, there are three types, transitional, episodic and chronic.
Gabe Howard: Rachel, for me, I was surprised that it really broke down into only three, because if you think about it, it could be hundreds of thousands of reasons.
Rachel Star Withers: Yes, and I am sure that in each of these three, of course, there’s so many different things that fall under them. With transitional homeless, so these are people that enter into homelessness, maybe go to shelters and it’s one stay for a short period of time. These are people you tend to be younger. You might have had a major catastrophe happen or something like that and this actually accounts for the majority of homelessness. Then you have episodic. So these are people who, you know, kind of in and out of homelessness throughout their lives. Might be one year then they kind of have their life going great and then some stuff starts to kind of come apart again. A lot of younger people are in this category. These are the ones who tend to be unemployed frequently, can get jobs, but can’t seem to hold jobs. Also, some mental health falls under this. People that might have a very stable life, but then a episode of some sort where they’re psychotic, manic, it kind of ruins things and then they’re able to pull themselves back together until another major episode happens. And the last category is the chronic homelessness. So these are like your Skid Row type people. The long term usually they’re in the revolving door of getting picked up, going to jail for a minor thing and then back on the streets. And it just kind of keeps going. A lot of these people are older, and chronic homelessness, that’s actually the smallest portion of homeless people. Which is ironic because when most of us picture a homeless person in our head, they’re the ones we think about. The person who is sleeping on a park bench under a newspaper, the person who might be screaming, talking to themselves on the streets of New York City. While it’s the smallest representation of homelessness, it is, however, the largest representation of people with schizophrenia.
Gabe Howard: It’s interesting how we get these stereotypes stuck in our head, we think that all people who are homeless have to fit the exact same mold and that mold, I believe you used the example of sleeping on a park bench, using newspapers as a blanket and screaming to themselves or they look sound and act what society would consider crazy. So we have some awareness, even in our stereotype, that people who are chronically homeless are sick. They’re in need. I hear people say all the time, well, homeless people are just crazy. The disconnect for me is then they just move right on. You’ve accepted and you understand that chronic homelessness is caused by a medical condition. It’s interesting that we have some basic awareness, yet as a society, seldom act on it.
Rachel Star Withers: In each of these three types of homelessness, different causes can lead you to it. Everyone who is chronically homeless does not have schizophrenia. Many, many do, but not everybody does. And unfortunately, because there’s different causes, there’s also different solutions for all of these problems. I used to many, many years ago when I was bright eyed and bushy tailed 19 year old, I worked at a homeless shelter. I actually lived with the women in the homeless shelter, one of the worst experiences of my entire life. It has stuck with me. But at the shelter, we actually worked with episodic homeless and the women there that I came in contact with, these are ones who could not hold jobs very long, usually because of behavior problems, meaning they were like fired for like not following the rules. Lower education, many of them involved in illegal activities, in and out of jail. And the program I worked for was very good. And if you actually committed to the program, it provided GED classes, money management, it had work placement. Child care services were offered free of charge while you went to work. It’s like really great. And people could completely change their lives around. It was very much learning how to stand on your own two feet, take responsibility, become a productive member of society. But none of those things are going to help someone who is having a delusional episode, who has no idea where they are. What they’re going through does not understand reality. There is no pull yourself up by the bootstraps to get that type of person. So, you know, we look at the solutions that we have. Yes, they can help some people. But I do feel that we have these people with very serious schizophrenia who are homeless and no money management class, me sitting down to show them how to set up a bank account. That’s not going to help them.
Gabe Howard: When it comes to chronic homelessness, we tend to think, we being society, that the solution is to give skills like you listed a whole bunch of skills there. The problem with that is it’s logical. It’s a logical solution to an illogical disease process that’s not going to work. That’s the disconnect that I think we have. And if we could fix that disconnect, I think that we could help more people. And there are programs across the United States that do this. Unfortunately, we found in our research that they’re few and far between and that the majority of places are just like, oh, well, if we get somebody with untreated schizophrenia, a job and an apartment, they’ll be fine. It’s not the case.
Rachel Star Withers: To help us better understand how schizophrenia leads to becoming homeless, we spoke with Bethany Yeiser, and in her senior year of college, she started having psychotic symptoms of schizophrenia and that led to her becoming homeless.
Gabe Howard: Bethany is an incredible person. And I want to say from my perspective, when I listen to her interview, I was like all that happened to you? Because I met her when she became an advocate. Right. So I was like, wow, that was in your past. And what I want the audience to understand is you would have no idea that this was in her past if she didn’t share it. That’s the amount of recovery that she has been able to achieve, getting the right resources. An incredible story. And Bethany is an incredible woman. We’ll play the interview.
Rachel Star Withers: We’re speaking with Bethany Yeiser, who is not only an accomplished musician, but also co-founder of The CURESZ Foundation. She wrote Mind Estranged, and she is a regular writer for Psychology Today. Bethany is also a person living with schizophrenia. Thank you so much for being with us today, Bethany.
Bethany Yeiser: You’re welcome, Rachel, I’m happy to be here.
Rachel Star Withers: Bethany, I don’t want to give away too much of you, so how about you just tell us your story? Who is Bethany Yeiser?
Bethany Yeiser: Oh, OK, well, when I think of myself today, I think of myself as a graduate of the University of Cincinnati in molecular biology, becoming a scientist was a really big part of who I am. It was my dream from when I was 17 years old. I also think of myself as a violinist. I was a member of the Cleveland Orchestra Youth Orchestra. I also see myself as a person living with schizophrenia. I am in full recovery and I have been in recovery for about 13 years. But my story really started when I was in high school. I won a scholarship to attend the University of Southern California in 1999 where I started to study biochemistry and molecular biology, and I was concertmaster of their community orchestra on violin. At first I was doing really well, thriving at the University of Southern California, but over about two and a half years, I started looking for something more in life.
Bethany Yeiser: I started thinking a lot about Mother Teresa and I started to want to make a contribution, a big contribution. During my junior year at USC, I went to China and I was greatly impacted by the low standard of living. And I started to think, can I help 10 million people living in China? This was my first delusion. A few months later, I went to Africa and stayed in Nairobi and in Nigeria for the whole summer. When I got back from Africa, suddenly, my best efforts produced failing grades. I went from this A student to taking exams and writing gibberish. A few months later, I moved out of the dormitory abruptly, refused all help with family and friends, and became homeless in the Los Angeles area, which would actually last for four years. After spending four years homeless, I was picked up by police and taken to be evaluated in a psychiatric hospital.
Bethany Yeiser: I spent 12 months on five different antipsychotics. Many had very bad side effects, very hard to live with. Some of them didn’t have terrible side effects, but they also didn’t contain my psychosis. Finally, after this very difficult year, my doctor started me on a special medication for treatment resistant patients and I got better. I started going out into the community and making friends. I started playing violin again at a higher level. And in 2011, I finally finished my molecular biology bachelor’s degree with honor. Today, I see myself as a schizophrenia advocate.
Rachel Star Withers: Talk to us a little bit about what were the events that led up to you becoming homeless?
Bethany Yeiser: My doctors believe my first psychotic episode occurred right when I got back from Africa. I abruptly moved out of my dormitory, traveled to Boston for a few days believing that an imaginary person was going to meet me at the airport and traveled back to L.A., started sleeping in lounges and libraries, occasionally public bathrooms and slowly but surely falling into a deeper level of homelessness, looking for food to eat in the garbage. My last year homeless, I was sleeping outside and there was just this downward spiral as I retreated into untreated schizophrenia.
Rachel Star Withers: Bethany, do you think that you were homeless because you had schizophrenia?
Bethany Yeiser: My homelessness was a direct result of untreated schizophrenia. Prior to developing schizophrenia, I was hard working. I was often working 40 hours a week in my research lab, plus taking classes. I mean, it felt like the sky’s the limit. I was going to be a clinical researcher. And but when I developed schizophrenia, my delusions clouded my mind and they led me to a situation where I didn’t want to have anything to do with friends or family. I found comfort in the isolation. I would be given so many opportunities from my family and friends to leave my homeless life. There are so many people who knew me when I was homeless who would have been more than happy to help me rebuild my life. But because of untreated schizophrenia, my mind was broken.
Rachel Star Withers: When you were homeless, did you ever panhandle or ask for money?
Bethany Yeiser: Ah, no, I really didn’t. For my first three years homeless, I did everything in my power to not look homeless, to look like a student. I wanted to blend in. My last year homeless, when the voices started and I started sleeping in the churchyard, I didn’t try quite as hard. I was starting to give up on keeping good hygiene, but I never pushed a grocery cart. I never panhandled. And for most of my time homelessness, the goal was to keep it my own little secret.
Rachel Star Withers: How did you survive?
Bethany Yeiser: Well, at first, I was sleeping in the USC Library, open 24/7. They would check my I.D. and I had my old USC I.D. From when I was a student in good standing. And I was in that library all the time for two and a half years. And then I started looking for food to eat in the garbage. People at the library would leave so much food, soda pop, pizzas, salads, sandwiches, you name it. At first when I was homeless, I lost a lot of weight because I was looking for food to eat only when nobody was around. But then as I progressed into my homeless life, I started looking for food, eating garbage even when people saw. In my last year I would occasionally even look in dumpsters for food. But yeah, I lived on garbage that I found. I had very few people offering me aid, of course, except for my parents who are sending me checks that I ripped up and didn’t cash. But yeah, I survived for a long time.
Rachel Star Withers: What about washing clothes and showering?
Bethany Yeiser: I became an expert at washing up in public bathrooms, I would be putting my whole leg into the sink of the bathroom to wash up. And I would do that often at 2:00 or 3:00 in the morning when nobody was there. I went for a long time, often without taking a shower, and I would carry maybe three changes of light clothes with me. Sometimes I would wash my clothes in the sink of public bathrooms. So when I look back, it is amazing. But I was able to keep decent hygiene for quite a long time and really hide my homelessness.
Rachel Star Withers: What did being homeless feel like?
Bethany Yeiser: Good and bad, Rachel, good and bad.The bad part was not having enough to eat, being hungry, looking for garbage, sleeping in the library and starting to notice that others noticed me. And then there was the good part of being homeless, thinking all the time about how I was going to be a billionaire. I was going to win a Nobel Peace Prize. I was going to be the next Mother Teresa. And I thought about these delusions 24/7. And I’m telling you, it was thrilling. And then my last year homeless, it started on January 20 of 2006. The voices began on that date. I was sitting on a park bench on the USC campus in the middle of the afternoon when I heard a chorus of voices inside my head tormenting me, telling me I was homeless and dirty. And then the voices changed and said, Oh, you will be a prophet. You know, you will travel the world helping people in poverty and the hallucinations would go back and forth and back and forth between really negative and really thrilling. I don’t miss being homeless because I’m happy with my life now running The CURESZ Foundation, working, volunteering, having meaningful relationships.
Rachel Star Withers: You just described homelessness as having some good and bad traits to it and the good traits that you described were also like the positive symptoms of schizophrenia.
Bethany Yeiser: Yeah.
Rachel Star Withers: Do you think all homeless people would describe being homeless as good and bad or just people who have schizophrenia that are homeless?
Bethany Yeiser: I would say that most people would describe it as being bad and most people don’t want to be homeless, but occasionally you do have people chronically homeless. These are people who are sleeping often on the streets year round. We have them sleeping outside in Cincinnati, even in snowy weather. I think if these people were capable of working, they would improve their situation, they would work and they would get off the streets. But I think that, like me, they just become content living on the streets because there’s nothing they can do. Perhaps they’re telling themselves, oh, of course, I could work if I wanted to. But the reality is oftentimes their minds are broken. You know, the brain is a physical part of your bod, and having a broken mind is essentially a physical problem. You know, it’s a disability. I think there are people who are choosing to be homeless and are content being homeless. But a lot of these people are severely mentally ill.
Rachel Star Withers: Sometimes you were offered help from family, from friends, and you refused. So many family members right now that are listening have that issue where they’re like, I’ve reached out to my loved one who’s homeless. I’ve reached out, I’ve tried to help them, and they keep returning to homelessness.
Bethany Yeiser: Yeah.
Rachel Star Withers: What do you say to those people? Like, can you help them understand what’s going through their loved one with schizophrenia’s mind?
Bethany Yeiser: Don’t take it personally, I often say that my schizophrenia made my heart feel like ice. It was like my schizophrenia turned me into a stranger, a different person. And because of this bizarre illness, I was paranoid of my parents and I didn’t want anything to do with my parents. And when I started medication, my parents made it very clear to me that this was not my fault. They told me I had a treatable brain disorder. I was going to find the right medication, I was going to rebuild my life, and that they were not angry that I had been out of touch for four and a half years. So if you’re dealing with a loved one who wants to be homeless and doesn’t want help, you recognize that this is not them, this is a disease and the disease is speaking for the person, it is influencing their choices. And I would encourage you to reach out to your loved one any way you possibly can. Bring them food if they’re willing to accept it, offer them money if you feel that’s appropriate. And if your loved one ever ends up hospitalized, see it as your golden opportunity. I would recommend if your loved one is hospitalized, you can call the medical clinic where they’re being held and say, I know that you can’t give me any information about my loved one, but I am aware that my loved one is there in your hospital.
Bethany Yeiser: And I want to tell you about my loved ones’ history. They’ve been sleeping outside for four months. They’re not accepting help. They’re looking for food to eat in the garbage. They’ve lost lots of weight. I’m very concerned. That’s what my mom did for me during my first hospitalization. Because she called, they kept me longer in treatment in that hospital. Do not give up on your loved one. You know, you might have to wait for them to spiral more into untreated schizophrenia before they’re hospitalized. But today, on medication and with cognitive behavioral therapy and other treatments, there is so much hope.
Rachel Star Withers: Speaking to us today, you come off as very educated, successful, I’ll even go with elegant, well-spoken, and it is it’s hard to imagine you as a stereotypical crazy homeless lady. Do you think that your story is an exception or is it an accurate representation of schizophrenia’s effects on people that can lead to homelessness?
Bethany Yeiser: You know, there’s just this uncanny relationship between schizophrenia and homelessness and schizophrenia, of course, doesn’t make everybody want to be homeless, but very often times it does. And I really don’t see myself as the exception to the rule. And I think that the homelessness is an escape from the reality. You know, for me, when I was homeless, I didn’t think about how I didn’t finish my degree. I didn’t think about how I wasn’t married. I didn’t have kids. All I did was sit on park benches and listen to the voices in my head. Every person is different. But it’s an amazing thing that there is a physical brain disorder that can cause you to want to be homeless.
Rachel Star Withers: When you were homeless, what was the best way that a person could help you?
Bethany Yeiser: I always wish that somebody would see me homeless and say, hey, can I take you out for a bite to eat? Can I take you to Burger King? Let me sit down and listen to you. I’d like you to be my guest. And, while I was homeless, that probably happened to me like once or twice over all the years. And that’s what I really wanted. I wanted somebody to offer me food. I also always wish that in the middle of the night, somebody could come to me and say, hey, you know, I’m from X organization and I found a place for you to stay. Come with me. I’ll take you there. There’s no strings attached. Our organization serves people like you. That’s what I always, always wished for. Today in some parts of Ohio and around the United States, there’s a program called Housing First. They offer people living on the streets, housing with no strings attached. And some of these housing first programs have been remarkably effective for helping people with chronic schizophrenia and homelessness to get back on their feet. But, yeah, I wanted help. I wanted food and I wanted housing. And it was really ironic because I was offered housing again and again and I always refused it. But sometimes I wonder if I had been offered housing by a stranger, would I have responded differently? And I think I may have.
Rachel Star Withers: Huh, that’s an interesting point. Why would it maybe have been different had it come from a stranger?
Bethany Yeiser: Yeah, with my parents, you know, I was paranoid of them, but perhaps the heart of it was deep rooted shame, you know, and my parents did not think that I was going to make a worldwide impact or be the next Mother Teresa. I mean, of course, they didn’t think that, you know, and when I was dealing with strangers, they didn’t know how far I had fallen. Strangers didn’t ask a lot of questions. I wanted to be in a place where I could continue living in my own little delusional world.
Rachel Star Withers: Something that’s very compelling to me is that as you’re speaking and you’re describing your time that you were homeless and had schizophrenia versus I think when we hear typical stories about people being homeless or even just the assumptions, the parts of your homelessness are very intertwined with schizophrenia.
Bethany Yeiser: Yeah.
Rachel Star Withers: It’s not a situation of, oh, well, if I just had more money, the homelessness was definitely part of the delusion. It was a false reality.
Bethany Yeiser: Yeah, at one point I met a friend in the library and he didn’t know I was homeless, but he did know I wasn’t in classes and that I didn’t have a stable place to live. And he gave me thousands of dollars as a friend. Of course, he was interested in a romantic relationship. I didn’t pick it up. But anyway, while I was homeless, I actually took the money and I went to England. Twice. I mean, looking back, when people gave me money, I traveled. I went overseas. I didn’t even consider using the money to buy food. And, you know, if I had enough to rent an apartment.
Rachel Star Withers: It’s hard because I do know there is no one answer for everybody, but what were some of the events that helped you pull yourself out of homelessness?
Bethany Yeiser: I went on medication in 2007 during my hospitalization and the medication started to work. I started wondering why am I not in touch with my parents? Why didn’t I finish my degree? I mean, the anti-psychotic was just working. And I was starting to realize that I was homeless for no reason, that there were all these different people in my life, especially my parents, who wanted to offer me housing and help me rebuild my life. So that was a big milestone. But then the side effects of the medication showed up. Ravenously hungry, muscle rigidity, blunted affect, sleeping sixteen hours a night. And so I went off it. When I went off my medication, all I wanted was to be homeless again. I wanted to return to the church where I was sleeping in Los Angeles and spend my days in the parks again. And then I was starting to become really paranoid with my parents again. And this led to my next psychotic episode. I was rehospitalized. And then while I was in the hospital for the second time, I had a really good doctor who said, Bethany, you have a treatable brain disorder. He said you might be able to go back to school, you might be able to play the violin at a high level again, he said. But you must always stay on your medication.
Bethany Yeiser: This is one of the biggest milestones in my life to consent to my treatment plan, to consent to take medication. And for a year, yes, I was totally disabled and it really did look hopeless. But the next big milestone that happened in my life was when I met a new doctor named Henry Nasrallah, who years later co-founded CURESZ with me. And he said, I need to try you on an antipsychotic for treatment resistant patients, which I had never even heard of before. And it worked. It was amazing. After a month, it was working. After six months, my hallucinations and delusions were almost completely gone. And then after I’d been on that medication for a year and a half, I transferred to the University of Cincinnati and then I graduated magna cum laude with very high grades. Being hospitalized for the first time can be a really big milestone for somebody struggling with schizophrenia. And you can feel really embarrassed and really insulting when people say you have schizophrenia because you may not know what schizophrenia is. Being told that you have schizophrenia and then understanding it is a brain disease is really huge. And then the next step is consent to treatment. And not everybody needs an antipsychotic, but many people do.
Rachel Star Withers: How can our listeners find out more about your current endeavors?
Bethany Yeiser: So you can go to CURESZ.org, which is C U R E S Z, as in cure S Z, and you can find a lot of resources. One thing you can find is a list of what we call schizophrenia survivors. These are twenty eight people who are doing remarkably well despite schizophrenia. I wanted to prove that I am not the exception to the rule by saying, look at all these people who had fallen so far. Some of them have been homeless and they got better, too. You know, it wasn’t just me. You can find resources on underutilized antipsychotics, nutrition, exercise. We have a mentoring program called Friendsz, F R I E N D S Z, we’ve matched thirty one caregiving mentees with caregiving mentors and we’ve started an initiative called CURESZ on Campus. We’re helping students recognize the warning signs of schizophrenia, bipolar disorder, anxiety, depression and know what to do when their peer is struggling. And if you want to know more about me, my memoir is Mind Estranged, as in an estrangement. My journey from schizophrenia and homelessness to recovery.
Rachel Star Withers: Thank you so much for sharing with us today, Bethany. I’ve definitely taken away so much from speaking with you.
Bethany Yeiser: Thank you.
Gabe Howard: Rachel, as always, excellent interview. Bethany was amazing. I want to know your initial thoughts. What were you thinking while you were asking her these very deep and personal questions?
Rachel Star Withers: I think the number one thing that struck me when she was talking was her mindset during it, it was almost like a fantasy, her thinking during that time, it was very delusional. She clearly, especially as she mentioned in her last year, being homeless, was disconnected from reality. But even though she was disconnected and she knew things were bad, she said that homelessness had some good parts to it. It was an adventure. And it was kind of like when you’re listening, it did sound like a fairy tale. It sounded like this story and it’s exciting and it’s you against the world. And we do hear so many great stories of rags to riches things about like Steve Jobs, Elon Musk of the world, who create something world changing. And that made me think like, where do we draw the line at of rational and irrational thinking? At what point do my goals become delusions?
Gabe Howard: There’s a difference between, you know, high hopes or high goal setting and delusional thinking. Obviously, somebody says I’m going to be rich and actually becomes rich, but you’ve got to look at their plan. They don’t just think that they’re going to become rich tomorrow. No, first they’re going to start this business and they’re going to hire these people and they’re going to build out this thing and they’ve got a plan and there’s many steps to the plan. Bethany was just like, no, I’m going to wake up tomorrow and I’m going to have it. It’s going to happen for me. But if you would ask her any follow up questions like, how are you going to make your money? How are you going to become famous? That’s where the delusion steps in, because the middle part is missing from disorganized or illogical thinking. But she didn’t realize that it was missing. And I think that we as a society need to realize that. Because she described a sort of excitement about this, like it was fun. And for her it was fun because she lacked the part of her brain that said, look, you don’t actually have a plan to get from A to B. And that, in my opinion, is scary because I don’t think she realized how much danger she was in when she was going through it and in fact, described it as amusing, entertaining, exciting. That’s very worrisome to me.
Rachel Star Withers: Multiple times when she was talking it in my head, I was thinking, oh, wow, what a dangerous situation you were in. All of her stories could have turned out very badly. She was very lucky during her days that someone didn’t come along and hurt her or anything. All of this, though, to me, Gabe, it highlights a part of schizophrenia, especially high functioning schizophrenia of that kind of where do we draw the line at? What exactly is being homeless then? Like, what’s the difference between I’m homeless and I’m just couch surfing. Couch surfing sounds cool. Having nowhere to go, sleeping on strangers’ couches and bumming off your friends does not. That does not sound cool. That sounds like someone I don’t want them calling up to hang out and sleep on my couch for three months. We have like #vanlife, you know, on Instagram and all these cool van lifers. And you’re like, wow, it sounds so cool. Living in your car in the back of the Wal-Mart parking lot? That does not sound cool. That is not an easy hashtag. I worry because I feel that people with schizophrenia, honestly, people like me, I feel it’s almost like a weird gateway into homelessness because it plays on that adventurous lifestyle.
Gabe Howard: It’s really all about perspective, right? And it’s about personal choices, but it’s about understanding those choices. What you described, you know, living out of your van. It’s sort of harkens this idea of like, like extended camping or RVing, except with less money. But these are choices that people are making that they’re well aware of and they’re able to take care of themselves and discuss it. If you say, you know, you’re living in a van, they say absolutely, this is a choice that I’m making. In my mind, it’s like choosing between staying in the hostel where you sleep in a bunk bed, in a room with 20 other people or the luxury hotel. The people in the hostel, they understand that they have made a decision. They’re sharing one bathroom with 20 people sleeping in a room in bunk beds, and they’re doing that to save money and they’re fine with it. Where you get into problems is if the person in the hostel believes that they’re in the five star hotel. They believe that that’s the Hilton. They believe that they own the hostel or that by staying in the hostel, they’re going to get riches or become president, or that’s when you start getting into trouble. People make all kinds of decisions that people love to comment on. I don’t understand why anybody sleeps in a tent and goes camping, but the people
Rachel Star Withers: [Laughter]
Gabe Howard: Who are doing it, it’s not worrisome if they understand that they’re making a choice to sleep in a tent, to go camping, to be part of nature. It is worrisome if they are unaware of what they’re doing and they can’t make choices to keep themselves safe.
Rachel Star Withers: Yeah, there’s some sort of danger that the person isn’t seeing. There’s some sort of obvious danger to everybody else, like, yeah, eating out of a trash can has a lot of germs, you know, COVID and everything right now. But if you’re not able to notice those, if the person in your life who might have schizophrenia isn’t noticing those dangers, that’s where the problem is going to be. And when you think about any sort of not having a permanent residence, it always worries me when I hear people talk like that, because I think, how are you able to stay on your medications if you have no idea where you’re going to be next month? I’ve been living in the same place now for a few years and it is still annoying, like they still send my prescription to the wrong place. And it’s the same pharmacy and I’m like, if I was driving around? You know, one of my medications, every month I have to go in and do a urine test for. And it makes me think, if I was moving around, you know, especially between states, how in the world would I do that? So I guess when I hear people with schizophrenia kind of start to talk about those lifestyles. I do worry a little bit.
Gabe Howard: One of the things that I think about is if you’re homeless, if you’re couch surfing, if you’re living on the streets, if you’re living in a tent, if you’re living in your car, you probably don’t have health insurance. And if you’re moving around, you’re not on these waiting lists, or these sliding scales, or able to take advantage of public assistance. Schizophrenia is a major medical condition, and all major medical conditions are hard. Every layer that you add on to it makes it that much harder. And by layers, not having stable housing, not having a doctor, not having a support system, not having health insurance, not having money. And then finally, especially in the case of schizophrenia, not having awareness of what is going on, all of these things make it that much harder to get the help that you need. And truthfully, I’m not sure that our system is aware of that, understands it or addresses it. That creates this sort of isolated bubble where somebody who is delusional or suffering from psychosis and who is most definitely sick only has themselves to rely on. But schizophrenia is a brain disorder. It impairs your ability to reason and logic and make good decisions. And that alone puts people at a disadvantage. One of the things we haven’t talked about is people do die from homelessness, they die from exposure. And obviously we don’t know for sure. But, you know, many of these folks thought it would be OK. And why did they think that would be OK? Because they weren’t using logic or reason to make these decisions. And we need to be aware of that.
Rachel Star Withers: A lot of what you just described also plays into the isolation. Schizophrenia makes you want to isolate, it makes you want to retreat inside yourself. One of the biggest issues with the chronically homeless due to schizophrenia is that the resources that are available, people with schizophrenia have a hard time taking advantage of them. Homeless shelters, and I mean, no one is like, yes, let’s go hang out at the homeless shelter, you know? No one thinks of this place as being like a hotel Ritz Carlton or anything. But something I didn’t think about till recently was that homeless shelters are very noisy. There’s crowds, there’s lots of confusion. Many of the things that people with schizophrenia have a hard time with. That alone just can keep a lot of people with mental health disorders away from getting help. It’s just the fear of having to deal with that situation. Soup kitchen and food banks is another big issue for people who are very paranoid. One of the studies they did, they found out that people who had different psychotic disorders and who are homeless wouldn’t eat the food from the kitchens and stuff if someone else made it.
Rachel Star Withers: But if they gave them the food, and gave them access to, like making their own food, using the microwave, the person would eat it. That little change, you know, I would think, yes, please. If you’re going to make it for me, do it. But I am in a psychotic state and I’m not sure if I trust you or not. I’m not sure where I am, what’s going on. I am going to be more wary to eat a free hand out unless I control more of it. And the biggest issue, I think, is that there’s so many great assistance programs out there. There are so many like assisted housing and all that. However, most of that requires a lot of paperwork, making it to appointments. A lot of the things that schizophrenia causes you to be disorganized in your thought process. It’s very hard for people with severe mental illnesses to follow through with those things and actually get accepted into the program.
Gabe Howard: Rachel, you’ve described on this very program that you, who are stable, have good access to care and have a loving family, you have told us that you have lost track of time, that you’re not sure what day it is, that you get disoriented or confused. And I think as far as schizophrenia goes, you’re doing fantastic. So I can only imagine if you added the chaos of being homeless, of not knowing where your next meal is coming from and not having a loving and supportive friends and family system around you. And somebody says, all right, just show up at one o’clock and we’ll give you those benefits. One o’clock on Tuesday. That’s actually a barrier that might be insurmountable for somebody that doesn’t have those supports.
Rachel Star Withers: Isolation is a symptom of schizophrenia and being homeless, that is isolating yourself from society, that is the extreme manifestation of that. When Bethany was talking, she said that even when she did have a stable place, that she would still long to be homeless again. She missed that lifestyle up until she was steadily getting treatment for her schizophrenia. And that was when she started to kind of connect back with people and not long for the homeless lifestyle. Our last episode was actually incarceration and schizophrenia and being incarcerated and homeless, it’s a kind of revolving door cycle that a lot of people get caught in. However, our guest, Lloyd Hale, he actually served time for murder and was then moved to a mental hospital and he did not become homeless. And one of the reasons, we even asked him in our interview about this, was that he spent so much time in the hospital getting treated that when he was released, he was scared of having to go back, that he was so dedicated to his treatment plan. So when he got out of incarceration, he was taking his meds. He did everything he was supposed to, and that was able to help him be a part of an assisted living and parole and different programs that he went through.
Gabe Howard: I think once again, what you have described is somebody that got the right kind of care over a long period of time, and as we learned in the previous episode, a lot of people don’t get that kind of care until they hit jail and prison. And even then, depending on the state or municipality that you live in, it might not be the right kind of care or it might be no care.
Rachel Star Withers: And Lloyd didn’t get the correct care until he was transferred from the prison to the mental hospital. So, yeah, I think had he been just released from prison, if he was still having psychotic episodes, he probably would have been homeless.
Gabe Howard: And of course, Rachel, all of this drives back to are we creating solutions that work for the problems that people with schizophrenia face? And in many cases, we’re not. And because we’re not designing solutions that work, we’re sort of spinning our wheels and not actually helping people. But sometimes it’s worse, right? Because we believe that we’re helping. And that’s where we start getting into things like, well, they don’t want to get better or they’re not trying hard enough or, well, they have to take responsibility. We’ve done all we can. I don’t know that we’ve done all we can. If the solution is not working to solve the problem, that’s not the problem’s fault. That’s the solution’s fault. Could you imagine if we did this in other areas? Oh, well, you don’t want to get better from cancer. We gave you chemo and you still died. But for some reason and well, we gave you a money management class and you didn’t get better. I guess you want to be schizophrenic.
Rachel Star Withers: I have a friend who has very serious M.S. and she has to have these infusions and sometimes she skips them because she doesn’t like how they make her feel. Think if we were talking about someone with a psychotic disorder saying, well, sometimes I skip my meds because I don’t like the side effects. We definitely judge those two things differently.
Gabe Howard: We do.
Rachel Star Withers: We do have a different standard for physical and mental ailments. The first few weeks after being discharged from a hospital or some sort of treatment program, those are believed to be the period of increased risk for homelessness among people with severe mental disorders. So especially if, you know, you have a loved one who’s going to be coming out of a program, really reach out to them in those weeks. They said for the first three weeks to nine months, that person needs to be engaged and have relationships because it’s very easy for someone to do great in treatment and then within a few weeks kind of get lazy if they don’t have that accountability to keep up their treatment plan. And unfortunately, it can spiral pretty quickly from there. Gabe, I’ve never been homeless. I’ve never been in that situation. However, you know, when we listen to Bethany talk, she was a very bright college student. It did not sound like she was someone on the path to becoming homeless. And when we look at the problem of homelessness with schizophrenia, I think that we need to acknowledge the fact that, you know, no one is immune to schizophrenia. It doesn’t matter how much money you make, it doesn’t matter your family, your lifestyle. Pretty much anyone can get schizophrenia. And those of us with schizophrenia are not immune to experiencing symptoms. Delusional thinking and isolation clearly lead to homelessness in people with schizophrenia. It could happen to anyone.
Gabe Howard: Much like mental illness, we believe that that’s like the other that happens to other families, that happens to other people. There’s we assign fault. We believe that we cannot become mentally ill. And we believe that because we’ve got a good mom and dad or we come from a good family or because we’re smarter, because we make enough money, etc. The reality is, is it’s an illness. It can impact anybody. It’s the same with homelessness. Your odds may well be lower, but there’s still a non-zero chance. And as I sit here and say, you know, I’m sort of sarcastic in my thinking, I think, well, what if you’re a millionaire? But then the Great Depression comes to mind. Millionaires were literally wiped out. Several of them ended their lives because they were just so freaked out, many became homeless. The Great Depression took a lot of people who never thought they could be homeless and made them homeless. Now, that’s a very extreme example. But that big thing can play out in small pockets in communities across the United States. Flint, Michigan, used to be a booming community. And, you know, now it’s a ghost town with bad water. Sincerely, we need to stop thinking that the safety net is only for other people and not for ourselves. I hope that it’s never for us, but it came for me. I didn’t think that I would ever need it and I absolutely needed it. And I may again.
Rachel Star Withers: And with my delusional episodes, I mean, I’ve had some bad bad ones, and I’m very lucky that compared to some people’s, mine was short. I’ll have situations where I kept losing my arm in my bed. I don’t know why that keeps happening. I don’t know why this weird delusion. Like, I can’t find any reason why this one. But it always comes back to me where I wake up and I can’t find my arm and I’ll freak out. And I’m like trying to, you know, asking my mom, where’s my arm? And, does not matter. You can’t I can’t comprehend that I have two arms and it’s like a snake and I’m trying to catch it and it’ll be in the room. And as you’re listening, you’re like, what in the world, Rachael? This sounds kind of oddly hilarious. And yeah, I bet it kind of is, to watch me try and catch my snake arm. I don’t know. But let’s say that instead of that, you know, psychotic episode lasting a few hours, it lasted a few weeks. It does not matter how much money I have in the bank. If you have a person who’s trying to catch an invisible arm and there is no money management class, there is nothing you can do that is going to help that person outside of getting treatment for the schizophrenia. And I would say that, yeah, I’m just very lucky that I haven’t wound up in a situation like that. And I’m very lucky that I have such a wonderful support network and especially my parents, who, when those things happened, I was able to go to them. Because having someone around I do think helps bring me out of my episodes. It keeps me from isolating further into my delusions.
Gabe Howard: And of course, it’s always nice to have the backup of somebody saying, Rachel, are you OK? Or as you’ve described, again in previous episodes, of saying, Rachel, you’re not OK and you trusting them because they’re a part of your treatment plan, they’re a part of your circle, and you’ve, when well, made a plan for what happens if you’re eeking towards a crisis or illness. But it’s important to understand not everybody has that. Not everybody has friends, family, parents, support groups, doctors, health insurance, money, resources. I have it and you have it, but not everybody does. And actually, I should back off a little bit and say we have it now. The future is not guaranteed. And not to be a downer, Rachel, but you and I will outlive our families. We just will. You know, it always makes me wonder about people’s lives when I see 50, 60, 70 year olds who are homeless. Is this a recent development? Have you been homeless your whole life? What happened there? And the answer very well could be the people who were looking out for them passed away. And then suddenly, for the first time in their lives at 65 years old, no mom and dad. We need to design solutions that take that into account. However that looks, we need to be thinking about it. And more often than not, we aren’t thinking that way at all.
Rachel Star Withers: And one thing that mental health professionals can do that they found does make a difference is helping patients become more aware of alternative housing options, even just like putting pamphlets out in the waiting room of local shelters, food, housing, things like that. They found that that helps a lot of people with mental disorders who might be on the line. So many people, you don’t really know what their financial situation is like. Some people dress really nice and you would have no clue how close they are. You really don’t know what situation some people are in. You don’t know how close they might be and just having information out like that. Another thing for the friends and family is to watch out for signs that your loved one might be getting kind of delusional in their thinking patterns, that they might be pulling away, isolating themselves more and more. This could be a problem coming up. Your loved one very well could become homeless regardless of the financial situation, regardless of, oh, well, they have a great job right now. Gabe, I enjoy this job with you and my other jobs I work in entertainment. But again, if I’m in a psychotic episode of trying to find my snake arm, I’m not going to be the best at hosting a podcast. I’m not sure I would be able to turn the computer on. So you can lose things very quickly is what I’m trying to say. Things will happen to our friends and family.
Rachel Star Withers: And I think that goes back to which we just always have to be building a support system, looking for new ways to support other people, to support those in our lives, and looking at other organizations. When we’re dealing with this major problem of chronic homelessness due to the symptoms of schizophrenia, irrational thoughts, isolation, one of the best solutions is actually preventing the problem and being realistic that anyone with schizophrenia or a major mental disorder could wind up homeless. Some great resources are the U.S. Department of Housing and Urban Development. So HUDExchange.info. H U D Exchange dot info. And on that site there is actually a homeless shelter directory, food bank directory and health centers directory. And the health centers will see you regardless of if you can pay or not. And that includes mental health. So really great if you have schizophrenia to at least know what are your options, have those printed out for your state. To my friends and family out there, look up this stuff. If you know someone who has schizophrenia and who’s homeless, especially if they’re untreated, see about where that health center is. See if there’s anything you can do about getting that person the treatment that they need. And if you are listening right now and you’re homeless, HUDExchange.info has just so many great resources on there if you’re able to access that. Well, thank you all so much for listening to this episode of Inside Schizophrenia. Please, like, share this with all of your friends, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia.
Announcer: Inside Schizophrenia is presented by PsychCentral.com, America’s largest and longest operating independent mental health website. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. For questions, or to provide feedback, please e-mail talkback@PsychCentral.com. The official website for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening, and please, share widely.