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Hey, what's up, you guys? My name is Rachel Starr Withers.
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Rachel is an entertainer, director, podcast host, stuntwoman, and probably why I'm on this.
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Podcast is that I also have schizophrenia. I actually grew up hallucinating, and I just assumed everybody did. But it wasn't until I was 17 when I actually, like, said something out loud. And one of my friends was like, what are you talking about? And I was like, oh. Oh, my. Okay, this is high school. So I know real quick never to bring this up again.
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This is an example of how stigma can show up in our lives. She didn't feel comfortable expressing herself about mental health, and her world started to fall apart as she approached her 20s.
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I really didn't talk about it for another while until my symptoms got worse and out of control.
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Not talking about our problems does not make them disappear. But stigma and fear affected how she was able to get support.
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Age 20, I went to the doctor for the first time. Super scared. Didn't understand how, like, psychiatrists work. A lot of us kind of think, oh, no, they'll just lock me up. So I held back and they diagnosed me as early schizophrenia. And then my life just continued to fall apart. And then around age I'm not sure 20, 21 was when I started antipsychotics.
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Stigmas can be so powerful. They affect how we see ourselves, how we express ourselves when getting help, or even if we decide to get help in the first place. That's what we explore this week on the podcast. Stigmas show up around our mental health conditions and affect our decisions around getting help, namely with medication. The best way to dismantle stigmas is talking openly and honestly about our truths, which is exactly what we'll do today.
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Foreign.
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This is the Turning Points podcast, a show about navigating mental health. Sponsored by Point 32 Health. I'm your host, Francis Leese. Before we break apart stigmas, let's start from a place of learning what schizophrenia is and is not.
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For people with schizophrenia, our main symptom is actually disorganized thoughts. So kind of hard to think. Your thoughts get jumbled up and then isolation. Unfortunately, I will isolate and I won't realize it until it's too late. And I've just kind of shut myself off from reality. Mine is predominantly visual, so a lot of times I have to be careful. Cause people's facial features will change. I won't always understand what I'm looking at. And it's not like a horror movie. It's more like a puzzle. You just kind of like something's off. That also means I don't really look in mirrors and that. And people are like, how do you get ready? I'm very good at like focusing on just my eyes because if I look at my whole face, it starts to change. And then I start getting freaked out. Audio wise, I'm always hearing like tapping in the walls, like rats. I've checked, there aren't any. And then it's like someone left a radio on two rooms away. So it's like I hear voices, but I can't quite make out what they're saying. I get so confused at the gym. And usually I try and work out every day. Big into fighting, boxing, kickboxing. When I go to the gym, I ignore people and I always apologize cause I'm not 100% sure what's real and what's not. So sometimes people will talk to me and unless I'm looking right at them, seeing their lips move, I tend to think it's just voices I'm hearing. I think because I had my hallucinations for so long at this point, they're like always happening and they're just kind of hanging out. I'm used to it. And if you're out there and you have hallucinations, that's one thing I want to stress people is that they may not be able to make them go away, but you can get used to certain things. So it is like, this is a major part of my life. And for me, yeah, I have to accept it and acknowledge it to have a normal life.
B
Yeah. And you're sort of owning the narrative for yourself versus having somebody else tell you what that narrative is. And that can be quite empowering, I believe.
A
Yeah, definitely.
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But television movies and just ignorance can magnify these symptoms of schizophrenia into something different.
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I think in the past, the stigma, to me, it felt like it was unknown and it was just a scary thing. And if you were to say schizophrenia, most people were like, I don't even really know what that is. Maybe I've seen it in a movie. Unfortunately, nowadays schizophrenia has been really connected with school shootings, with all this stuff, and especially for other communities. I'm white, but I have a lot of friends with schizophrenia who are black and who've been put in much worse positions. I've had a. One of them unfortunately died while having a schizophrenic episode. And I think if you have a serious mental disorder, that can be kind of scary. So I've seen over the past 10 years a big shift, stigma wise of it going from people not knowing to people being like, oh, you're dangerous.
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In fact, it's more common that a person with a mental health condition is a target of violence rather than the person causing the violence. Taking ownership of your own narrative can bring you power against stigmas. For Rachel, she started by pressing record and creating YouTube videos. Rachel has found that sharing her story has made people feel less alone in their experience. She started posting way back in 2008.
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This was a long time ago, okay? The Internet was a baby. When you would ask Jeeves or whoever existed back then about schizophrenia, only thing that would come up were, like, these cold medical articles or scenes from, like, One flew over the Cuckoo's nest. Iconic movies, but not the best if you want to be associated with the situation. And I was like, you know what? I want to at least make a video so that when another person tries to google or whatever schizophrenia, it may be on the 1000th page, but there's going to be at least a video of someone normal talking about it. So that was really my whole goal was I just wanted to find other people like me so they knew they weren't alone. When I was making my videos, I just slowly started to open up more and more. And the more I opened up, the more people would be like, oh, my God, I'm going through the exact same thing. So it's one thing with the stigma, because the more I talk, the more I feel less alone. I'll have so many who will be like, that's the exact same thing that happened to me.
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For Rachel, medication is a standard part of her day to day life. But medication can also be stigmatized.
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Well, first thing I do when I wake up is I take my meds. I take those usually on like a little bit of food, and then I have a second set that I take usually around 4 to 6, depending on, like, my schedule, to kind of help me. And that, of course, depending on what type you're on is gonna change throughout your medical journey. But that is a big part of my day. I gotta make sure I got my pills with me because if I miss a dose, I'll be okay. But if I miss a dose for three days, there is a very big change in me. And I go, for me personally, I go downhill very, very quickly. So it is very important that I at least make sure I get one dose every single day.
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Talking with her community has been a place of empowerment for her.
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You kind of hear all these horror stories, but once you actually start to share what has happened, like, with individual people, you'll find so many connections and be like, oh, wow, wait, how did you survive this side effect? And now I'm learning from them, they're learning from me.
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Our next guest also finds that posting online has broken down barriers surrounding stigma.
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My name is Kati Morton. I'm a licensed marriage and family therapist, and for the past 12 years, I've been creating educational mental health content online.
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She's also written the book Are youe okay? A Guide to Caring for your Mental Health.
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I realized in talking to my friends and family about that book and trying to get there stories and insights that people don't know what they don't know. So often we don't even know where to start. We don't even know what questions to ask. And so how can we expect people to reach out and find a good practitioner or to even know what that's like? And so my goal of being online is to bring that to the masses so people can understand themselves, understand other people in their lives, and then feel empowered to make good decisions about their mental health.
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As a therapist, she sees how stigma can affect someone's ability to live a good life.
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The stigma of mental health in general, and the fact that, you know, you're, quote, unquote, so bad that you need medicine. There can be, like, judgments around that. Even I find it with people saying, like, oh, you, you're so crazy. You need therapy. And I'm like, everybody needs therapy. So there's that piece. But then, because I've seen this more recently, which is interesting to me, this thought of judgment around the fact that you're taking a medication in general, like, people are like, you shouldn't take Advil. You shouldn't, you know, should change things through diet and exercise and that kind of like, quote, unquote, wellness or wholesome thinking without really clear understanding of medication and research and how it comes to be and what we need to make ourselves better shouldn't be something that's judged because you don't know me and what my struggles are, and I don't know you and your struggles in that way.
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So aside from the fact that the misconception is, oh, it's that bad that you need medication, have you heard of any other kind of misconceptions?
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I think some people assume that it's like a crutch, like that it shows weakness. I've heard things like that too. When I'm like, actually, it shows intense strength. I think it's easier, not more comfortable, but easier to stick our heads in the sands and pretend that, oh, I'm okay. It's no big deal. People will say the whole time, it is what it is. I don't want to deal with it. It's much harder to admit. Yeah, this sucks. I feel bad, and I need a professional to help me feel better. You know, as a therapist, obviously, I cannot prescribe medication. I'm not a medical doctor, but I have had patient after patient, year after year, who is unable to participate in therapy because their symptoms, whatever they are, depressive symptoms, anxious symptoms, maybe they have hallucinations, maybe they have mania. Whatever's happening to them, those symptoms are so great that they can't take the homework or the behavioral changes I'm trying to offer because they're unable. They're what I call it, drowning in the symptoms. Medication I always see as a life raft. It's a way to get our head above water so that then we can actually utilize the tools. And I believe that's why research time and time again proves that it's therapy with medication that render the best result. I don't believe one or the other, it's together that we can get our head above water, then we can make the changes. And I think I've always viewed it that way. Depending on what we're diagnosed with, medication may be more or less necessary. You know, I have patients who will always be on medication, and then I have patients who for, like, half of the year will have to be on medication. You know, there's seasonal depression. There's times of year. Anniversaries can be very difficult for people. So that might be a time when we need to go on and then titrate back down. Obviously, this is all done with, you know, the overseeing of your psychiatrist. But I do believe that medication definitely has a place in the treatment of our mental health and shouldn't be thought of any differently as someone takes a blood pressure medication or, you know, something for their diabetes or anything like that.
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Rachel has faced a stereotype that you're weak for taking medication.
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I've had people tell me that I'm weak for taking medication. I've had people say, like, oh, like, why are you still on it? Thinking that, okay, I should have taken it and gotten better and went off of it. And, like, no, this is a lifelong thing. I will be on antidepressants, antipsychotics my entire life. There is no, I'm going to take this. It's not like an antibiotic that I could take. And, okay, I'm better. Two weeks. I have so many people tell me, well, Rachel, maybe you're seeing into another world, and maybe the medication is blocking your view. And I'm just like, okay, if you saw the things I saw, you would not like this other world. Okay? It's very distorted, very scary. And that is stigmatizing. You know, you have one side of people, it's dangerous, and the other side of, oh, you're special and you have this amazing gift. And the medication is like taking your gift away. It's like, no, the medication for me is helping me survive the day and be able to live life.
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Understanding how medications work can help you decide what's best for your particular situation. Medication can help with conditions like adhd, depression, anxiety, ocd, bipolar disorder, and more. Katie explains some of the brain chemistry involved with medication.
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And I think a lot of people don't understand what's causing a mental illness in the brain. What we understand thus far, I'll give you two, actually, three prime examples. There's going to be, like, more research that needs to be done, and there's probably things we don't understand. But a huge component of what creates ADHD is a low level of dopamine as well as a low level of dopamine. Transporters, now they call them transporters. It's essentially like a chemical in the brain that helps bring the dopamine into, like, the reward center in your brain to help things that you're doing feel good, feel rewarding. That's why people with ADHD struggle to concentrate. It's not because they're not interested. It's because that thing's not rewarding. So they're going to go out and find something that is more novel. Maybe it's a time crunch that pressure gets us going because I got to do it. And then people say, okay, good, you're done. Yay. We feel rewarded, right? We finish. The same goes for depression. Low levels of dopamine and serotonin in our brain causes symptoms of depression. And I would argue is because depression and anxiety are like these nasty cousins that, like, hang out together, I would argue, argue that anxiety probably has lower levels of serotonin and dopamine as well. But then on the flip side, things like schizophrenia or anybody who has psychosis, meaning like delusions, hallucinations, you're hearing, seeing things that aren't there, believing things that we maybe don't have facts to support, that is excess dopamine. So just from that, those few kind of examples, you can see how medication that we can take could help mitigate the level of dopamine in our brain, it could bring us out of a psychotic break. It could also pull us up out of a depression or help us focus. Right. And so that's just one example of how we know medication can work and why it works.
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So with these conditions, we just mentioned that they operate on a spectrum and they can be. Their levels and intensity can vary depending obviously on the person to help individuals who might be experiencing some of these symptoms. How do you know when it's time to try a medication? Whether it's schizophrenia, depression, anxiety?
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I always tell people it's better to see somebody early and get all the information and then you can make a decision. Nobody says you have to go in and get on it right away, but to know what's available. And so as soon as you get an inkling that I'm not able to do what I need to do every day I'm in therapy, but I just can't wait till that next appointment. I have so much to talk about. If you feel like you're just not moving forward, even though you're trying to, that's when we should reach out and look for other options like medication.
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Once you decide it's time to start medication, you can work with your doctor on the right type of medication for you. It might take a few tries to find the right medication or dosage.
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It may take a little while. And this is the part that sucks, and I'm sorry, but it takes a few weeks. When it comes to SSRIs and SNRIs. Atypicals like what I talked about, atypical antipsychotics, they or faster or if you have an injectable version of a medication, that can happen faster. And you can get the. Whatever you're going to experience as far as effectiveness, you're going to get that efficacy more quickly. But sometimes it takes a couple weeks. And that's why it's important to track. Track your symptoms, track how you're doing. Because the funny thing is we will notice if things get worse. We're like, hey, I am not sleeping. Like, this is bad. It was bad before and now it's worse. We will notice that, but we won't notice. I feel better. I'm sleeping good. I have patients that be like, I can't tell it's working at all. And I'm like, well, how has your sleep been? They're like, it's been fine. I'm like, how's your appetite? Fine. Have you been making it to work or school? Yeah. Your relationships that's good. I saw my sister yesterday, and I'm like, so things are way better. We just don't notice sometimes when things feel good. So keep track of it and know that it can take a few weeks. I usually tell my patients, like, give it a month to really see, and then they might increase the dose. So if you start to feel a little bit better, you're like, hey, my sleep is better. But I still have these down moments where I, like, cry in my car or something. Like, just notice. That's why we have to track. Otherwise we won't notice when things are getting better, and they won't know if we should increase or if we should try something different.
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I would say if you're looking at medication, there's probably a reason.
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Here's Rachel again. Your doctor, psychiatrist, or nurse practitioner can help you weigh the pros and cons of medication. When you're investigating the cons, be sure to ask about side effects.
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If you are not happy with how your life is, then you probably need to make a change. If the side effects are what you're afraid of, talk to the doctors. Let them know that. Be very clear up front. This is what my hesitations are, because there are other options. The tardive dyskinesia snuck up on me. I didn't know what that was. And if you're listening, it's kind of uncontrollable shaking and odd movements with your tongue. And it can be permanent from some antidepressants and even, and very much so, antipsychotics. So I started shaking and noticing my tongue would be, like, kind of moving all over the place in my mouth. And I went to the doctor, and they were like, oh, yeah, it's a side effect. Like, it was nothing. And I'm like, okay. Like, no one had ever told me this was a potential side effect. Sometimes certain meds make it a lot more worse and some don't. The biggest side effect that I always watch for is weight gain, because a lot of the antipsychotics make you pack on weight. And I always suggest, like, bringing that up to the doctor because for me, yeah, I'm like, okay, I can't gain 60 pounds. Every time we try a new medication for the job that I do in entertainment, it's not the best. Certain meds cause certain side effects, and some may be worse than others. They're always coming out with new medications and mental health that have less and less side effects. And doctors have learned now to look for things like tardive dyskinesia and when they see that, they're supposed to kind of start tweaking the dosage.
B
And as you said, if you miss three days of your medication, then things start to change a little bit. How did you find the right medication regimen that works for you? Because, you know, finding the type of medication could be a whole journey within itself and you could get a bit discouraged throughout the process. So how many tries did it take? How did you find the right fit?
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Years.
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Yeah.
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So the honest answer is that it never really ends. You just slowly find something, hey, this one's working. This one might not be. It takes years of for one, finding the right medication and then the right dosage. And most people aren't on just one medication. I take three for mental stuff. Some are antipsychotics, some are antidepressants, and it's like a concoction. And with me, my body likes to get used to things, so they're regularly have to changing them, like the dosages every six months, because I just get used to them. I've been on some medications where it might have helped my hallucinations 1%, but the side effects made it unable for me to live a normal life. They either pretty much kept me sedated 24, seven or worse. And I do think that's an important thing because so many people will start a medication and the side effects are so bad, so then they quit and they just stop there. And I always want to say, no, there are other medications that work differently. And then again, finding the dosage. So it might take a while to find that concoction. And then, of course, keeping up with okay, it's starting to not work as well. I think any serious mental disorder, it's not like cut and dry. There's just so many symptoms. If you have a loved one with schizophrenia, you know, you might be like, okay, they were doing so good, and now they're not. They're just dealing with it. The kind of waves of takes courage to admit you have a problem. However, if someone has a heart issue, anything physical, we're always very quick, okay, let me go. I gotta take the medicine. The doctor said I have to. But it comes to mental stuff, People are like, I could probably. I could have to deal with it on my own. No one says that with cancer. No one says, I can deal with this cancer on my own. I can deal with this heart problem on my own through a great attitude that you would think, oh, this person has something wrong with them. Like, no, that's not how life works. But people tend to think that about mental health, even serious mental disorders.
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I love that Rachel mentioned courage. It's courageous to come face to face with whatever fears you may be experiencing to get help. Katie suggests we challenge our expectations and where the stigma may have come from.
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I always want to challenge people to consider where their beliefs come from. So often we have these, like, thoughts about life or expectations about what we should and shouldn't do that aren't ours, and we've taken them from somebody else. And so just take some time to consider where it's coming from. And then one of my favorite tools to use even in my own life, but also with patients, is what I call play it out. It's a CBT tool, but it's essentially like, what's the worst case scenario? Okay, so we have a stigma about medication. What's the worst case scenario? Know, I don't try medication. I have the worst side effects. I try therapy. My therapist is an idiot. I don't like them. Okay, worst case, what's the best case? I try one medication. It changes my life. I find a therapist that allows me to change my behaviors, my relationships improve. I finally ditch that toxic friend that's been around forever and things are great. I get a good job, right? Think about it. And then what's the most likely case? It's somewhere in the middle. And that kind of, for a lot of people, takes away that fear, which I think stigma lives in fear. It's really just the unknown or the feeling different. You're not alone. You're not weird. We all have a mental health. We all have to take care of it. So just check in with yourself. Kind of challenge those beliefs or those stigmas that you have, because they might not be yours or they might be old and they're not serving us anymore. And so take a minute before you add, act on them to just be curious about them.
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My message has always been, you're not alone. You know, whatever it is that you're going through. There's schizophrenia groups. You can go on TikTok, and there's like, people who make these hilarious TikTok videos, like Cody Green, Michelle Hammer, and they're very open about their schizophrenia. Like, it's just a normal thing that everyone else is talking about. And I just. I love it because the idea that, that you aren't the only one going through this, and there's other people going through this who are thriving, that's amazing. I love that. That is the community that's been growing over the past few years. You know, it's hard to find people in real life who are like you when it comes to schizophrenia. Most people aren't shouting it from the rooftops like I am. But you could find so many people online. And I encourage you, if you're out there, just you're not alone at all and whatever, like you think you're a freak or you think you're weird, you're not. You're not. Other people have this.
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Thank you so much for listening to this episode. By listening, you're helping make some of these stigmas disappear. That leads me into my first takeaway. Talk about your mental health experiences. If you feel comfortable, you don't need to start a YouTube channel or a podcast. You could even just talk to a loved one or post privately on social media. When we openly share what we're going through, whether it's finding the right medication or a challenge, with a mental health condition, we can feel less alone. We take the power back from the stigma. The next reminder from this episode is to take your meds. There's absolutely no shame around using medications to support your mental health. Some people will need to use medication for their entire lives. Just like someone with diabetes needs synthetic insulin, some people will need to shift and change their medication frequently. And maybe your relationship with medication is different than what we talked about today on this podcast. All of this is okay. Offer yourself some compassion. You're doing the right thing for for your mental health. Know that you're always in control of your own narrative. Rachel has made a comic book series about living with schizophrenia. She also hosts the Psych Central and Healthline podcast Inside Schizophrenia. She recently played a movie character that disrupted all sorts of stereotypes.
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Shock Fight is a horror action movie and I was really excited to make it. I play a character called Schizo and I. All of the characters are kind of these stereotypes who end up acting differently than what you expect. It's a horror movie. She's not, you know, better or worse than the other characters. And that's the point. Having a mental disorder doesn't make you better or worse than everyone else.
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We'll leave it there for this episode of Turning Points. This is actually our last episode of this season. You can go back and listen to earlier episodes covering topics like postpartum mental health, mental health at work, the search for a therapist as a person of color, and more. Follow rate and review the show in your favorite podcasting app. This really helps support the show. Visit globe.com turningpoints for more information on mental health care and resources. Thanks to our production team at Pod People, Anne Fuse, Amy Machado, Brian Rivers, Danielle Roth, Michael Aquino and Shay Woditz. And Special thanks to Point 32 Health, the studio B team at Boston Globe Media and hill holiday. Point 32 Health is committed to connecting the community to personalized solutions that empower healthier living. Sam.
Episode: Overcoming Stigmas in Mental Health and Living with Schizophrenia (S3E5)
Date: October 11, 2023
Host: Francis Leese
Primary Guests: Rachel Starr Withers (entertainer, director, podcast host, person with schizophrenia), Kati Morton (licensed marriage and family therapist)
This episode examines the deeply rooted stigmas surrounding mental health, with a focus on schizophrenia and the role of medication in mental health management. Through honest conversations with those directly affected and mental health professionals, the episode seeks to dismantle stereotypes, encourage open dialogue, and provide insight into the complexities of diagnosis, self-acceptance, and treatment decisions. The show emphasizes that sharing personal experiences can be a “turning point” toward self-empowerment and community support.
Early Experiences and Stigma
Daily Reality of Schizophrenia
Stigma in Society and Media
Medication as Daily Life
Community and Exchange
Kati Morton’s Perspective
Medication Mechanisms and Misunderstandings
When to Consider Medication
The Search for the Right Regimen
Mental vs. Physical Health Stigma
On adapting and acceptance:
“For me, yeah, I have to accept it and acknowledge it to have a normal life.” — Rachel (A, 03:58-04:11)
On stigma and violence:
“It’s more common that a person with a mental health condition is a target of violence rather than the person causing the violence.” — Francis (B, 05:19-05:26)
On courage:
“It takes courage to admit you have a problem… People tend to think that about mental health, even serious mental disorders.” — Rachel (A, 20:54-21:13)
On internalized stigma:
“I always want to challenge people to consider where their beliefs come from. So often we have these like, thoughts about life or expectations about what we should and shouldn’t do that aren’t ours.” — Kati (C, 21:31-21:54)
Host Takeaways:
Representation in Media:
The conversation is candid, positive, and solution-focused. Both guests share personal stories, advice, and practical resources, balanced with professional insight from a therapist. The tone is empathetic, empowering, and rejects sensationalism, instead inviting listeners to be curious, challenge stigma, and seek support.
This summary offers a comprehensive, structured overview with details, quotes, and timestamps. It’s suitable both for listeners and those seeking a deeper understanding of mental health stigma and the lived experience of schizophrenia.