What is schizophrenia? From pop culture’s view to Rachel Star Withers, a diagnosed schizophrenic, view of herself to a leading mental health doctor and professor’s view. What are the actual symptoms? What is the difference between a hallucination and delusion? What is it like to experience one? How do you manage it? How is social media changing the way it is viewed? In this first episode of Inside Schizophrenia, Rachel and co-host Gabe Howard with special guest Dr. Ali Mattu explore this often misrepresented mental illness.
Highlights From ‘Schizophrenia’ Episode
[00:40] Would you think I am a schizophrenic?
[04:00] Current media’s portrayal of schizophrenia.
[06:00] What real psychotic are episodes like.
[08:00] Violence in mental disorders.
[11:50] When your child has schizophrenia.
[16:40] Hallucinations vs delusions
[21:22] Fake professionals.
[24:10] Medications and side effects.
[29:40] Importance of support systems.
[31:50] How did you get schizophrenia?
[35:50] Guest Dr. Ali Mattu Interview.
[38:50] What a general treatment plan looks like.
[40:20] How media and social media has changed how we view schizophrenia.
[45:50] What should you do if you think you may have schizophrenia?
Guest for Schizophrenia Episode
Dr. Ali Mattu creates entertaining, empowering, and educational mental health media. He’s a cognitive behavioral therapist who helps kids and adults with anxiety disorders. Through YouTube, Dr. Mattu teaches a global audience on how to use psychological science to achieve their goals.
Dr. Mattu is a licensed clinical psychologist and assistant professor at the Columbia University Irving Medical Center in New York City.
Computer Generated Transcript for ‘What is Schizophrenia?’ Episode
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: Welcome to Inside Schizophrenia, a look into better understanding and living well with schizophrenia. Hosted by renowned advocate and influencer Rachel Star Withers and featuring Gabe Howard.
Gabe Howard: Hello, listeners, could a change in your schizophrenia treatment plan make a difference for you? There are options out there you might not know about. Please visit oncemonthlydifference.com to find out more about the benefits of once monthly injections for adults with schizophrenia.
Rachel Star Withers: Hi, I’m your host Rachel Star Withers with my co-host Gabe Howard. So, Gabe, I’m a schizophrenic. Just based on normal pop culture, if you met me for the first time, would you like right away think I was a schizophrenic? A person with schizophrenia?
Gabe Howard: No. I mean like if I just like saw you? Like based on?
Rachel Star Withers: Yeah.
Gabe Howard: What? Like your hairstyle?
Rachel Star Withers: Just the way I was like moving around the way I act?
Gabe Howard: No. I mean to be fair, as a person living in recovery, you would try to just walk in the room and be like, “Hi, I’m Rachel.” But I suppose I might notice if you were symptomatic, to be fair. But in fairness I don’t know that I would know what those symptoms were.
Rachel Star Withers: All right. What, just based off pop culture, movies and things, what do most people think a schizophrenic would look like?
Gabe Howard: A schizophrenic would be like drooling rocking back and forth. There would definitely be like an eerie creepy violence factor, I think. And I think a lot of people would assume that there was like a multiple personality disorder thing going on. I think that’s probably when it comes to pop culture, I think that’s probably the biggest one.
Rachel Star Withers: Most people have no idea I have schizophrenia unless I tell them. We have so many movies and even had you know you can reference One Flew Over The Cuckoo’s Nest from years ago but Shutter Island, Bird Box, that just came out on Netflix you know all of these different things were, yeah, they have people schizophrenia and they are not normal passing people in society. Like it’s somebody that like I’m watching the movie I’m like oh God I don’t wanna be around that person. The actual definition of schizophrenia according to the DSM 5, which is the Diagnostic and Statistical Manual of Mental Disorders.
Gabe Howard: Isn’t that a mouthful right there?
Rachel Star Withers: Right? But it sounds really really official. So it’s like oh.
Gabe Howard: It is official. I mean it is how they diagnose all mental illnesses all all mental health problems really.
Rachel Star Withers: Yeah but it’s like hey I can I believe this.
Gabe Howard: You should. It’s science, Rachel.
Rachel Star Withers: Yes, well, it defines schizophrenia as characterized by delusions, hallucinations, disorganized speech and behavior, and other symptoms that cause social or occupational dysfunction. And I really like that they put occupational in there to say like yeah having trouble working. Like I just like that and I like they include all these people can work but they’re probably gonna have some trouble.
Gabe Howard: I know that you’re going to break down the symptoms because you are just crazy organized. But before we do that, I want to ask you a couple of personal questions.
Rachel Star Withers: Okay.
Gabe Howard: So just answer like from Rachel Star Wither’s perspective. When you see these movies, you know you are a person living with schizophrenia, you’ve been diagnosed. And how long have you been diagnosed?
Rachel Star Withers: Officially diagnosed at around age 21. But I have had it since I was a little kid.
Gabe Howard: Right right. But you realize that in order to get a timeframe, I’m now going to have to ask you how old you are.
Rachel Star Withers: Like 22?
Gabe Howard: You’re like 22? So you’ve had schizophrenia for a year?
Rachel Star Withers: I have now. I’m about to be 34.
Gabe Howard: So you’ve been living with schizophrenia obviously your whole life but you’ve been diagnosed for well over a decade, and you’ve been managing this illness and you lead a full and good life. I’m not trying to put words in your mouth.
Rachel Star Withers: I just yeah.
Gabe Howard: Your life is relatively normal.
Rachel Star Withers: I mean I think it’s beyond normal. I do a lot of really cool stuff..
Gabe Howard: That is true. But schizophrenia is not holding you back from doing those cool stuff is really that the point. Your life is yours to make of it what you want.
Rachel Star Withers: Absolutely.
Gabe Howard: When you see these portrayals you know because you’re just you’re just watching Netflix. The whole country is talking about a movie on Netflix. You think to yourself hey that sounds like a movie that I want to talk about too with the rest of the country. You sit down you watch it. The character who is schizophrenic shows up on the screen and you’re thinking go.
Rachel Star Withers: Unfortunately I like mentally flip out. If you’re watching something with me and this comes up and I was really looking forward to that. I’m a huge Sandra Bullock fan so I’m like yes I am all into this. And then the minute they come up about the mental institution escaping I was like, “What?” Like it’s ruined, the rest of whatever I’m watching is ruined. I’ve already started tweeting angrily like, “Hell, no.” Like I just went off the rails. There’s a movie it was a terrible movie as a horror movie about stalking. But in the movie they never say she has schizophrenia, but it quickly shows the stalker’s pills that she takes. And one of the meds I recognized was an antipsychotic and I immediately in the theater like my mom was like Rachel calm down now.
Gabe Howard: So and that’s not because this isn’t triggering you because you have schizophrenia. It’s bothering you because of the misinformation that is out there in society and because of the judgment that now gets put on to you. And you know that the community of people living with schizophrenia now you have to be the ambassador to correct all of this misinformation.
Rachel Star Withers: And especially when you’re talking you know today you have Netflix, Hulu, things come out and like everybody watches them at the same time everybody’s talking about it. So you’re suddenly thrown into yeah everyone’s talking about bird box and you know at that moment everybody has seen that portrayal. Everybody you know has sat there and watched this schizophrenic you know come out and they’re scary. They’re terrifying and they’re all talking about it and yeah it’s a little unnerving when you think.
Gabe Howard: Let’s go all the way back to before Rachel start Withers was diagnosed.
Rachel Star Withers: Ok.
Gabe Howard: You know like you said you’ve had schizophrenia your whole life you had the symptoms of it etc. And you were diagnosed at 21 and I’m going to assume that things got a lot better then. You started getting treatment you started getting care. Your life started to improve.
Rachel Star Withers: Ish. It does take a long time to kind of find a treatment that works for you.
Gabe Howard: So all the way back at the beginning you are Rachel. Start with is untreated person with schizophrenia but you don’t know you have schizophrenia. Are movies portraying untreated schizophrenia correctly? Or are they just completely off base? Did you behave that way before you were diagnosed?
Rachel Star Withers: I never behaved as a killer. All these different things that you see have I had like very bad psychotic breakdowns where I probably was like mentally out of it for a few days? Absolutely. But usually with schizophrenia you don’t tend to act outward, you act inward. You retreat inside of yourself. So I wasn’t running around attacking people you know being just a scared psycho person like running around with knives. It was I was in my room and I kept feeling that my arm got lost in the sheets. So I’m looking for it. I didn’t recognize people’s faces. I was scared it was just you know I usually like three days of being terrified and slowly I’ll come out of it. But you watch something like Shutter Island and you’re like oh wow this guy is so like cool and psycho at the same time. But clearly his whole world is made up.
Gabe Howard: Right.
Rachel Star Withers: I don’t function like that. I’m not I’m just in my room with my puppy dog.
Gabe Howard: We do want to be fair that some tiny minority of people with schizophrenia do become outwardly violent and many times to be completely fair it’s not their intention to be violent they feel that the person in their house is a threat to them so they’re defending themselves. Now we don’t care you know why if they if somebody hurt somebody we obviously want to put a stop to that. Do you think that could be curbed with more education, more treatment options, more understanding?
Rachel Star Withers: Yes. And I think anybody can become violent in different situations. But in the mental disorder realm and in across the board of mental disorders not just schizophrenia. Yeah. You’re more likely to actually lash out and you might not understand you might not even realize your lashing out. My grandfather had Alzheimer’s and he would start swinging at me and my little brother but he had no clue who we were. We were just mean people trying to help him to the bathroom, but he didn’t understand that. And it’s the exact same way with schizophrenia. If I am yeah mentally gone I might not understand who you are and what you’re trying to do to me even if you’re totally trying to help. And if you are a loved one realize you’re getting in that situation you do need to get help because at that point you’re not taking care of you. You cannot take care of yourself and whoever is currently with you can’t take care of you either. If you’ve become violent towards them I still feel that’s where hospitalization comes in and you might need to get inpatient treatment.
Gabe Howard: I’m really glad that you said that because there is this idea. That people who are advocating on behalf of people with schizophrenia are saying no no no there’s never violence there’s never violence and that’s not what we’re saying. We just want to make sure that people understand why the violence occurs what the motivation is for the violence potentially and how you can help the person because you know we hear from family members caregivers friends all the time when these episodes occur to their loved ones with schizophrenia they’re not themselves and what they want are treatment options and help so that you can become who they love again and who they know because schizophrenia takes that all the way. Do you feel that that’s true.?
Rachel Star Withers: I do.
Gabe Howard: Do you consider yourself to be yourself if you were in the midst of a schizophrenic episode, or would you just be sick?
Rachel Star Withers: The way I describe it is like I’m still there but I’m very very far away watching. Part of me kind of knows what’s going on but I don’t always like I’m not able to necessarily control what’s happening. I’m watching it like is that my mom? Is this happening? You know just kind of in this daze situation. And when I was a teenager and we didn’t know what was going on I was more, I wouldn’t say violent, but I was deathly more aggressive with my dad because he didn’t understand what was happening so he would push back. You know, get up in my face, like will you calm down and that of course led to me trying to push him and run off but I was never trying to like hurt him. It was just I didn’t understand what is going on in my head and I was his first child and he had a daughter that was acting bizarre. And he didn’t know how to deal with that.
Gabe Howard: To talk about your family for a moment, were they scared at your behavior? I don’t mean scared like scared for their own safety just, were they worried? I mean how did, how has your family reacted to your diagnosis, to your treatment, and are they your caregivers? I mean how do you feel about you know just sort of this whole thing and you can pick any age you want. I know that you’ve been you know how did you feel about it in the beginning? How do you feel about it today? I mean it so it’s kind of a long answer.
Rachel Star Withers: Oh I’m growing up likes I said, I was undiagnosed as a child, as a teenager and my parents, we lived in the country. This is all pre internet. So really all you have at that point is the movies you’ve seen and some cool VHS tapes. You know we were very like secluded and I was their first child. So they always look back now and like wow she had a lot of people she was talking to as a child. What’s the difference between that and let’s say imaginary friends? They didn’t know like where was the line of what’s normal just being an adorable little weird kid? And then what’s something where, OK, this has gone too far? So they didn’t get me help as a kid or teenager but they also kind of didn’t realize that I was different than anybody else. Same thing with me. I thought everybody was like me. I thought everybody saw monsters all the time. No you don’t? My bad. But when I got diagnosed at age 21, I actually I sat them down and I was so scared to tell them. But they took it. And over the next few months they actually like researched it and were out trying to learn more like what exactly is this and a whole lot of dots started connecting when they looked back at pretty much how my life had been. And they’re absolutely amazing. I had like the coolest wonderful most amazing family in the world. I always stress that because they put up with so much with me.
Gabe Howard: And they helped you right? I mean you consider that and I’m just asking on behalf I know that you do not speak for all people with schizophrenia everywhere. So I’m just I’m just asking for in your situation. Do you feel that part of your recovery and part of your wellness is because of the hard work determination love and support of your family?
Rachel Star Withers: Absolutely. My parents especially, my dad, he adores me I’m like one of those little daddy’s girl situations. If it was up to him, me and my brother would live with them forever. Like when you get married and have kids but we’re all going to live in a giant house together. Like that’s my dad’s dream. So yeah we’re very like close knit family. And I understand most people do not have that luxury. And it is a luxury even if you have great parents they might not put up with all the stuff I’ve done, but they’ve always been there. And when I did have psychotic episodes, as they learned through the years, they learned how to pretty much jump in there and help me. And it was Rachel, what do you need us to do? All right. And my dad every day he checks on me. He makes sure that I’m eating. If he hasn’t seen me and it’s like two o’clock in the afternoon he’s going to come down, and he’ll usually bring me some food, check on me make sure that I’m fully aware and that’s really awesome. Most of times I’m perfectly fine. But yeah sometimes he comes down there and I’ve been awake for three days and I’m kind of talking to myself and weird.
Gabe Howard: In future episodes of inside schizophrenia we’re really going to delve into the relationship between people with schizophrenia and their support system whether it’s just you know their friend, their family, their wives, or in the cases of caregivers or even medical care. So I just wanted to touch it on a little bit and I know that we’ll explore this further in the future. So thank you so much for providing just a small insight into your life, Rachel.
Rachel Star Withers: You’re welcome.
Gabe Howard: Rachel, later on in the show we’re going to talk to a doctor, a clinical psychologist, a professor at Columbia University. He knows I guess as much as any medical person can know about schizophrenia and he’s really going to delve into what is schizophrenia from the medical perspective. But before we get there we want to talk about what is schizophrenia from your perspective and you know that’s sort of a balancing act because obviously you’ve been on the Internet. We know you’ve been on the Internet. You’ve read a lot about the illness. You are a mental health advocate. So you’ve answered a lot of questions, you’ve talked to a lot of people, and you are a professional in your own way and in your own right. But of course you’re also a person living with schizophrenia. So we just want the audience to understand that all of this stuff that we’re going to talk about right now, the symptoms of schizophrenia, you’re going to answer from Rachel Star Withers’ perspective, a content expert and a person living with schizophrenia. And then later in the show we’ll ask a doctor and see how you know those two things compare and contrast so that hopefully the audience can get a more broad view of what schizophrenia is exactly because hey listen you don’t need to listen to an entire podcast to learn what schizophrenia is. You can just google it and it’ll give you like what like a 20 word answer. But we want to go a little deeper.
Rachel Star Withers: Yes. Or just pull it up on YouTube and hopefully you find me.
Gabe Howard: At Rachel Star Live, correct?
Rachel Star Withers: Yes it is.
Gabe Howard: You should check her out. She is very very awesome. All right. So let’s delve into hallucinations and delusions. I think that when people do think of schizophrenia they really do think of like these hallucinations first.
Rachel Star Withers: Yeah. I think those are the ones that get like most confused. What’s the difference between a hallucination and a delusion? And honestly I didn’t know for a long time. Ironically, when they sit you down and tell you you have schizophrenia, they don’t break this stuff up like they don’t say hey this is what you’re having. This is what you need to expect. It’s just let me pop this label on you and here are some meds. And for my caregivers out there, my loved ones, research. It will help you so much. Research because then when stuff happens you’re not terrified you’re like oh OK I read about this. So when you have hallucinations, those are things that you see, hear, feel, smell, that are not really there. That maybe the people around you would not be experiencing, whereas a delusion is a belief not based in reality. It could be everything from the government’s after me to just thinking that your friends are talking about you or being like slightly paranoid.
Gabe Howard: So a good analogy for hallucination versus a delusion is a hallucination is, you see Santa Claus under the table. A delusion is, you believe Santa Claus is under the table. But you don’t have any visual or auditory proof.
Rachel Star Withers: Correct.
Gabe Howard: And that also there’s different types of hallucinations right. I mean you said there’s seeing hearing and smelling. But you don’t have to have all three?
Rachel Star Withers: Right.
Gabe Howard: You can just hear voices or you could just see things or you can just smell things or you can have any combination thereof, right?
Rachel Star Withers: Yes.
Gabe Howard: Now you personally, what type of hallucinations and or delusions do you have?
Rachel Star Withers: My most common hallucinations, I have a lot of visual ones and it’s mostly shadowy figures like I can’t really tell you like if you asked me a draw it, I can’t. They’re just like kind of black monster like things and they’ll usually just hang out in the corner of a room. Mine rarely like movies like you know animatronics or something everyone’s like well, do that crawl? Mine are just going to stand there and stare at me and sometimes like they’ll jump forward but they don’t do anything they don’t try and touch me and I see like faces and things a lot. I have to be real careful with them. I avoid mirrors because when I look in the mirror suddenly my eyes move around or my nose. I become very kind of like a gargoyle. So I just avoid a mirror as best I can. And when I’m out in public sometimes I like randomly look at a stranger and their face is messed up in my mind I’m like OK are they? Is it really messed up or am I hallucinating this? And either way it doesn’t matter. It’s kind of how I deal with that stuff as well unless I you know really this is a matter of the strangers face is like that or not. So I’m able to go about my day when it comes to audio hallucinations and kind of back where you’re talking about schizophrenics need different types of care at times. I’m very lucky that I’ve never experienced the kind of audio hallucinations of like a voice that’s constantly hollering at me telling me things or harassing me. Whereas a lot of people unfortunately do. And that makes life very difficult. Mine have always been like ticking or clicking sounds and I hear my name being called a lot but I’m nothing like yeah a constant voice that I can really make out. Sometimes it sounds like there’s a radio left on and I’m like in another room in the house so I hear like garbled like there’s people talking but I can’t tell you what they’re talking about.
Gabe Howard: And as you said with auditory hallucinations it can it can really just run the spectrum. You know some people might hear compliments all day. You know you’re beautiful, I love you, you can do it. And other people might hear you know horrible insults all day, you’re garbage. Kill yourself and on and on and on. You know this is why it’s very important to understand that not every single person with schizophrenia is the same. And the example that we always use for this is we know millions of people with jobs but we understand that not everybody who has a job has the exact same responsibility or lifestyle or salary or benefits. So we understand that there’s a difference and even within the same classifications of jobs not every podcast makes the same amount of money for example not every actor makes the same amount of money not every doctor makes the same amount of money or experiences the same level of success or failure. So we try to get that out there a lot because I know that you’ve described before that people were like Oh well I met Rachel Star Withers who has schizophrenia and now I completely understand schizophrenia based on a five minute conversation or a half an hour speech or you know a 45 minute podcast. So it’s important to understand that your results may vary and your loved ones results may vary.
Rachel Star Withers: Yes just like an exercise tape or diet.
Gabe Howard: You’re just like an exercise tape?
Rachel Star Withers: And that’s something actually very common with me is people will email me and they’ll be like No my so-and-so had schizophrenia, or I saw a movie on schizophrenia, or I took one psychology class in college so I know about schizophrenia and you are not one because you can talk. Schizophrenics can’t talk, they can’t hold any sort of job. They’re pretty much in the corner drooling on themselves and that’s probably at least three times a week I get an email like that of someone saying no schizophrenics are not able to make a video, they’re not able to talk as clear as you do. You don’t have it. They’re never doctors that say this.
Gabe Howard: Well and there are no doctors that have seen you. There’s a phrase for this. It’s called an armchair psychologist. It’s where somebody observes you on television or in public and decides that they can diagnose you with a mental health issue or a mental illness or in your case undiagnose you. And this is not how mental illness is diagnosed and even though we know that our loved ones you like you said that your family is very very engaged. They’re still not qualified to diagnose you based on observation and the fact that they don’t have medical degrees. But again it’s important that they talk with you, that they ask you questions, that they observe for long periods of time in unedited ways. You know that’s the fascinating part that we see a lot of people who are diagnosing celebrities. This is edited tape. It’s not reality. Maybe it’s a publicity stunt. Maybe it’s on purpose. Maybe it was a bad day. Maybe it was fueled by drugs or alcohol. Maybe the person had been up for four days. Maybe the person is legitimately suffering from schizophrenia but you can’t rule those out because you saw them on the news.
Rachel Star Withers: Correct. And you can kind of like yes if you only saw me in the middle of a really bad episode and I’m thinking that I’ve lost an arm and I’m searching my bed for my missing arm and you’re like you clearly have two arms you’re using your second arm to look for this missing one. It’s like you cannot reason with me. And if that’s all you saw, then yeah, Rachel needs to be in an inpatient hospital 24/7. But let’s say two days later I’m perfectly fine. I understand the appendages that I have are in place and I’m able to like have great conversations with you.
Gabe Howard: One of the things that we talked about at the top of the show was would I think that you had schizophrenia if you just walked into a room and of course the answer is no. And then later on you touched on people think that schizophrenia is rocking back and forth. They think it’s drooling on themselves. They think that it’s being unable to talk. And one of the things that I want to talk about a little bit is that some of those characteristics aren’t symptoms of schizophrenia, they’re side effects of treatments. And this is in no way discouraging people from getting treatment. It’s just sort of showing how you know sometimes things enter the pop culture and they’re misunderstood. The example that we always use for that is that cancer doesn’t cause baldness. The treatment for cancer causes baldness, and in fact one treatment for one type of cancer causes baldness. How do you feel about having that? I mean how do you feel about just all of that because there’s just a lot of misinformation there now?
Rachel Star Withers: Absolutely. I always tell people that the medication sometimes is way worse than schizophrenia. If you meet me in real life I tend to shake a lot. Like my hands are always trembling. Sometimes I’ll get to the point like I can’t hold a fork or something. To me it doesn’t bother me. Luckily I’m not a brain surgeon. That would probably affect that but I chose to softball at home with entertainment. But that has nothing to do with my schizophrenia. It’s actually tardive dyskinesia, a side effect from being on so many antipsychotics over the years and it’s just this fun little thing. I tell people I’m just kind of dancing I feel my own little earthquake going on but yeah nothing to do with schizophrenia. So if you met me then you meet someone else you would be like well how come this person doesn’t shake? I thought all schizophrenics were like constantly shaking.
Gabe Howard: And research into the medications have developed safer medications that don’t cause tardive dyskinesia. There’s also medications that treat tardive dyskinesia now which is a real benefit. And of course research is always ongoing. But I want to touch on one of the things that you said there where you’re not a brain surgeon and you feel that it’s worth it. You would rather be in full control of your life that yeah you’re shaking, you’re dancing and you know I liked how you put it there but it does fit into your life. Is this common for people with schizophrenia or mental illness where they sort of have to make a compromise with their medications or their treatments and how do you feel about that?
Rachel Star Withers: Absolutely correct. You have to make a compromise. A lot of people message I’m scared such and such will happen. It might. But if me taking this medication makes it so I can get up every day and work and have a social life then I personally I don’t mind shaking a little bit. The worst thing that happens is I’m out to eat at a restaurant and you can visibly see me struggling. But, I’m able to be out at that restaurant. I’m able to be out with friends, I’m able to have a social life. You have to weigh the pros and cons when it comes to medication and side effects. At the end of the day everybody whether you have a mental disorder or not you just want to be able to have a life. People think that you know recovery when you’re talking about a mental disorder is you’re just great and you have absolutely no symptoms and you’re like everybody else. And that’s not it. Recovery is being able to live a normal life, not be a celebrity but be able to work, have friends, family. That’s what recovery is to most people.
Gabe Howard: And it’s fair to say that most of life is a tradeoff. For example most of us give our time to a job so that we can get money to do the things that we enjoy. So we’ve made a trade. We’ve traded time for money. You know other things like that we could buy a big expensive house but maybe we can’t travel. We can buy an expensive car but then we eat at McDonald’s or so on and so forth. Most people don’t get 100 percent of what they want. Do you feel that that’s an equivalent analogy for this, or is it not that simple? How do you feel about it?
Rachel Star Withers: Whenever you’re trying out different medications sometimes it’s gonna take a little bit to figure out what’s going to work for you. And it will change over time; a certain dosage might have kept you solid. Being able to work 40 hours a week for years and then one day that just doesn’t work anymore and you have to change dosages or change medications. When I look back across my life there were times that I was working like 60 hours a week and going to school full time and I look back now and think why how did I do either of those things? Much less at the same time? But also during those times that’s usually when I was the most out of my mind, the sickest, most depressed, because that took such a toll on my brain. And now I’m much much more happier. Can I work 40 hours a week? No no no no. And I can’t go to school full time. I do online classes which works a lot better for me and a part of it has to do with medication treating me. I’d say my quality of life has went up so much and while I can’t do those things I used to do in the past. I’m much more happier. I’m a lot more upbeat. You probably if you met me in my mid 20s to now my mid 30s I’m a completely different person.
Gabe Howard: We’ve talked a lot about how you treat schizophrenia. In your words, what do you understand that the treatment for schizophrenia is for everyone? Again fully acknowledging that you’re not a doctor. We’ll ask our doctor this question when he comes up later.
Rachel Star Withers: I think it’s safe to say across the board therapy, coping skills, kind of learning how to do things differently in life. I might not be able to do a job exactly like somebody else but I can find ways to get it done. And medication and having this like a support system. We’ve heard I mentioned that I have an incredible family support system. And if you’re out there like well I don’t have a support system. My family isn’t like yours, you’re going to have to make your own support system whether it is friends whether it’s your doctor your therapist whether you’re able to join a peer support group. There’s lots of different support groups for schizophrenia and even caretakers of people with mental disorders and just being able to be around other people going through what you’re going through, able to like share ideas on how to deal with things is really awesome.
Gabe Howard: Peer run support groups really I think don’t get enough attention. So I’m really glad that you brought it up. But there’s just a wealth in sitting in a room with people who have similar experience and we’ve done this in this country since its inception. Sales people exchange leads and information with other sales people, mommy groups are a huge thing for new mothers where they talk to other mothers to get hints and tips on everything. You know there’s even sewing circles so that everybody can sit around and sew. Doctors teach other doctors. So I really always like to give like a great plug to joining a peer support group for people with schizophrenia or just people with mental illness in general because there really is a wealth of knowledge to get there and I always tell people look at it like a buffet take what you want and leave the rest. You don’t need to be mad at the salad just load up on mashed potatoes.
Rachel Star Withers: And there’s something, even though I have an incredible family support system, none of them have schizophrenia. So when I’m able to talk to other schizophrenics like just sit down and hang out it’s like the biggest weight off of my shoulders because I can say things and we completely get each other. It’s not like weird. It’s not like I’m trying to tell you my hallucination and you’re like OK Rachel and I’m not worrying them because they’ve done the exact same thing, they’ve been through the things that I have. And it’s cool just to be able to talk kind of without a filter to somebody who’s going through or has been through your same situation.
Gabe Howard: I could not agree more. And for our listeners to know that is exactly how Gabe and Rachel became friends.
Rachel Star Withers: It is.
Gabe Howard: It is. Rachel, how did you get schizophrenia?
Rachel Star Withers: A common misconception is people be like oh wow something horrible must have happened to you as a child to cause all this. No. I’ve had schizophrenia as long as I can remember. I grew up hallucinating. I pretty much popped out like a little crazy baby just like scream and probably thinking I had like five moms in the room. I don’t know I can’t remember back that far but probably.
Gabe Howard: I don’t think any of us remember our literal birthday.
Rachel Star Withers: So maybe that causes are still unknown. Research is ongoing and hopefully medical science will nail that down one day for us.
Gabe Howard: And we’ve come a long way. I mean considering how we treated mental illness at the turn of the century to where we are today, is a world of difference.
Rachel Star Withers: Absolutely. Just to think that maybe if I was born one hundred years ago I would have just been locked up right away whether it was like talking locked up in jail a lot of times just for protecting other people or just put into different hospitals. And that was back when you could be you know put in mental hospitals. It was really anything. Anything weird that you did was like, ehhh.
Gabe Howard: You are right. The treatment of mental illness in this country does have a very traumatic history. You know for the longest time any husband could commit their wife to an asylum because she was hysterical or because she was acting erratic or because she wouldn’t cook and clean. And these were considered mental illnesses. So I do understand why people are leery of mental health diagnosis in that I understand why they’re scared to be diagnosed themselves or why they might resist treatment if they believe the things like in the movies that you talked about or if you just look at the history of our country and I want to say that we’ve evolved and I do believe that we have it. But I want to be clear that that evolution needs to be ongoing. As a person living with schizophrenia, how does the past impact your present decisions and your look toward the future?
Rachel Star Withers: Even just in my past of when I first started getting treatment in my 20s to now. Things have evolved so much like medications alone have become much safer and have less side effects same with different therapies that I’ve been through. They do differently that they found hey this is going to cause a lot less trauma. It’s just amazing even for me to see in ten years what’s evolved and to think OK well when I’m in my mid 40s what’s my treatment going to be like? Then I’m excited. Who knows, I might be wearing this cool little like google glass thing on my head that like fixes my thoughts. That sounds neat. Let’s do that. But I don’t know. It for me it’s very hopeful to see that. Yeah how far we have come as a society. And that’s awesome.
Gabe Howard: Thank you so much, Rachel. You know we’ve talked a lot about schizophrenia and what it is, we’ve broken it down. But the running theme is that most people still misunderstand schizophrenia and they still regard people with schizophrenia as crazy and scary. We know how you feel about it. We know that you wanted to change and that you want people to be better educated and that’s why you’re doing this podcast and that’s why you live so openly. Do you have any closing thoughts for anybody listening to this podcast that may believe that or know somebody who believes that?
Rachel Star Withers: When I was first diagnosed at around 21 that was a hard blow for me because I thought exactly as all of these bad examples we’ve been giving. I was that person I was like Oh no no I’m gonna become a serial killer. Oh no no I don’t want to be associated with this horrible thing and I don’t want anyone else to know because they’re going to think I’m dangerous. I was scared out of my mind. As I’ve grown up and I’ve learned, my personal definition of schizophrenia is it’s just your brain working differently than the norm, and that’s okay. Gabe, tell us about our sponsor.
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Rachel Star Withers: Thank you, Gabe, for that information. And let’s jump back into talking about schizophrenia. We’re here with our guests now Dr. Ali Mattu. He is a clinical psychologist and assistant professor with the psychiatry department at Columbia University. He is also the host of The Psych Show on YouTube. Hello, Dr. Ali.
Dr. Ali Mattu: Hi, Rachel, it’s so good to be on the show here with you.
Rachel Star Withers: Yes, great to speak to you again. So from a doctor, and a medical perspective, what is schizophrenia?
Dr. Ali Mattu: Well it’s a psychiatric condition, a mental illness. And there’s two main problems associated with schizophrenia. One are the collection of symptoms that we call positive symptoms. These are things that most people don’t experience. So things like problems and how you’re perceiving the world around you. You might be seeing things that other people might not see, you might be hearing things that other people might not hear. And then also problems related to beliefs or ideas of what’s happening to you, what’s happening in the world around you. So those are some of the positive symptoms of schizophrenia, things that are being added to someone that might not otherwise experience. And then there’s this whole category of negative symptoms where things are being taken away. So for example the way you experience emotions might be flattened, you might not experience emotions as intensely. You might be losing connection with important people. You might be starting to experience depression, things like that. So it’s a very diverse condition. There’s a lot of different symptoms associated with it and people experience these symptoms in different degrees at different times throughout their lifetime experiencing this problem.
Gabe Howard: Thank you so much for that answer. Again, from a medical perspective, what symptoms do you see is the most debilitating just in a general sense?
Dr. Ali Mattu: It’s a really good question. I think I would say the loss of support that can happen with schizophrenia and what there’s two things we know here one is when people are experiencing a lot of conflict in their homes or if they are losing connection with family members, with friends, that often makes all of those symptoms worse. And when people are able to get that support it really helps all those symptoms to get better. So I think for everyone, no matter what age they are, no matter where they are in their journey with schizophrenia, if you lose that connection, if you become isolated, if you’re experiencing a lot of rejection, that just makes all of this even more difficult.
Rachel Star Withers: You were just talking about how diverse schizophrenia can be.
Dr. Ali Mattu: Yeah.
Rachel Star Withers: What would a general treatment plan look like for most schizophrenics?
Dr. Ali Mattu: The treatment of choice for schizophrenia is a medication intervention. So there are a number of different medications that can be helpful for someone who might be experiencing schizophrenia. And one of the challenges is finding the one that works for you right now that can be a journey in itself but usually you’re going to have a psychiatrist someone who has a medical degree and expertise in mental illness. Is there going to be the ones who are going to be working with someone one on one to identify what might be the best medication for you and then you’re probably going to be working with another mental health professional. It could be a psychologist, someone like me, someone who has a doctorate in psychology, or it could also be a social worker, a counselor, a different type therapist but someone who’s going to be helping you with the other category of problems that come along with schizophrenia. So while medications will help you to become less confused and become or bring a little bit more clarity to how you’re seeing things around you, you still need other skills and to help you learn how to cope with your emotions, how to better connect with other people, how to deal with some of the challenges that can come along with schizophrenia, and also to talk about your experience with this and your experience with the medications and all of that sort of stuff. So usually it’s going to be a combination of psychiatry as well as some other type of mental health support.
Gabe Howard: To change gears just for a moment you know your YouTube show you know generates questions and you answer them and it’s a very very cool thing that you do. And we like that because we think that schizophrenia and other mental disorders are so incredibly misunderstood. So how have you seen social media and YouTube or maybe just the internet affect the way schizophrenia is perceived in either a good or a bad way?
Dr. Ali Mattu: I think it’s been a complete dramatic shift and it’s a part of a larger shift that’s happening in the world of mental health right now. But I think it’s so pronounced for schizophrenia. So for a long long time schizophrenia, the representations of it in media have really been extreme, stereotypical, and often I think bad representations of schizophrenia. And what we’re starting to see now, and, Rachel, you’ve been a part of this and I thank you so much for the voice you’ve had here in shaping this discussion, is we’re beginning to see a range of experiences where we’re seeing people share their stories of how they were diagnosed, of what their life is like how they coped with schizophrenia, and it’s not guided by people in Hollywood who might have a stereotype idea of what schizophrenia is like but it’s a more authentic story in it. I think as I was saying earlier it’s such a diverse problem, and we’re seeing more of that diversity of experience on social media, on blogs, on YouTube. And that for me has been incredibly exciting and it’s helped me to learn more about what schizophrenia is like. It’s been one of the most exciting developments in my career.
Rachel Star Withers: And I like how you said that. I never thought of it that way that yes, suddenly we’re able to see so many other examples of people living with different mental disorders and how yet absolutely diverse it really can be.
Dr. Ali Mattu: I see that for anxiety, I see that for depression, bipolar depression, eating disorders. We’re actually starting to talk about this stuff. It’s not just us consuming media that people create but we’re having conversations now about so much stuff in mental health.
Gabe Howard: One of the things that’s great to see of course are our conversations but there is always some criticism that the conversations that are taking place by influencers, people like Rachel, that maybe these conversations aren’t the best because they’re potentially, going to be very clear on the word potentially, but they could be it could be misinformation, they could be light on facts, you could hear the wrong information, or shift in the wrong direction and that can put somebody who is vulnerable in harm’s way. From your perspective, how do you sort of tease all that out as a provider? I mean and as somebody who uses the Internet to start these conversations?
Dr. Ali Mattu: That’s why I started my YouTube channel actually. A patient of mine came in and said hey this video has been really helpful to me. And we watched it together and I was like this video is full of B.S. I can’t believe we’re watching this one. And that’s what got me interested in sharing more of what I know online. It’s a big challenge. Historically people like me people who have a lot of professional training, we haven’t been trained and don’t have experience in sharing information with the public in a way that the public will want to understand and platforms like YouTube are really struggling with this. How do you filter out what’s accurate versus what’s entertaining? And on podcasts platforms, it’s hard to find and figure out who knows what they’re talking about and who sounds like they know what they’re talking about. So in one way I think this is one of the big challenges we’re all struggling with. How do you figure out what’s accurate and not in the age of the Internet? I think the best way to do this is what’s happening right now is us having conversations where it is professionals and advocates and people who have experienced this. People who have no experience with this and us coming together and having these conversations. This is how I think we move move things forward. And that’s always been my favorite experience as a psychologist is when I’m able to sit down with someone who also is an advocate for this issue who understands it in a way that I never will. And we can work together to push things forward. That’s how we change things.
Gabe Howard: Very cool thank you.
Rachel Star Withers: So what should a person do if they think they might have schizophrenia? Whether it’s listening to this podcast or different problems they’ve been having? What’s the first thing they should do?
Dr. Ali Mattu: First thing is to talk to a doctor, talk to a medical professional because there are effective treatments and it’s never too late and it’s never too early to get that evaluated to some degree and I think this is something a lot of people don’t understand is a lot of what we’re talking about is on a spectrum of what is common and what is uncommon. So every now and then when I’m at home and the lights are off and I’m home alone and I hear a sound I’ll start to wonder what was that? And this is something that’s just built into our psychology. It’s how we work. And every now and then when I’m struggling emotionally and I’m really stressed and I’m thinking about things that I’m worried about maybe my worries get out of hand and I start to believe things that are pretty far away from what is actually happening. That’s pretty common. But what we’re talking about on this podcast is a more uncommon version of these symptoms that might be causing you a lot of problems in your life. But for a lot of you who might not be sure is what am I guess what I’m experiencing is this one of the more common things that everyone goes through or is this less common. A medical professional, a mental health professional will help you to figure that out and it’s never too late and it’s never too early. One of the things we know about treating schizophrenia is the sooner you can catch it and the sooner you can get effective treatment the better off it’s going to be in the long term. So if you have any doubts and I know this is a hard thing to talk about, find a medical professional that you feel comfortable with and talk to them and they’ll help you to figure that out.
Gabe Howard: Thank you so much.
Rachel Star Withers: Yeah. That was absolutely awesome. Thank you so much, Dr. Ali Mattu, we absolutely loved having you on here.
Dr. Ali Mattu: Oh thanks for having me. I’ve been looking forward to this conversation all week long and it’s been a pleasure.
Rachel Star Withers: If you would like to learn more about Dr. Ali Mattu, you can check out his YouTube show at YouTube.com/ThePsychShow. Thank you so much for listening to Inside Schizophrenia with your hosts Rachel and Gabe. The official Web site of Inside Schizophrenia is PsychCentral.com/IS. Please like, share, send this to all of your friends, and subscribe if you haven’t yet. Help us get the word out there so people actually start to see schizophrenia how it really is.
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 email [email protected] The official web site for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening and please share widely.