The three main stigmas of schizophrenia are:
- People with mental illness are violent and need to be feared.
- They have childlike perceptions of the world that should be marveled.
- They’re responsible for their illness because they have weak character.
Guest Brandon Kohrt, MD, PhD, a psychiatrist and anthropologist joins to discuss stigma surrounding mental illness around the world and ways different countries have approached solutions.
Host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard, explore the stigma of mental illness and share their personal experiences.
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Brandon Kohrt, MD, PhD, is a psychiatrist and anthropologist who has worked for 25 years to improve mental health services in countries affected by war and political violence, disasters, and other forms of adversity. Kohrt is the director of the Global Mental Health Equity Lab at George Washington University. Kohrt has sought to combat the stigma associated with mental illness through work with The Carter Center Mental Health Program, the World Health Organization, UNICEF, and more. Kohrt developed the “RESHAPE mental health” intervention to reduce mental illness stigma among healthcare providers.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal.
Fun Fact: She has wrestled alligators. To learn more about Rachel, please visit her website, RachelStarLive.com.
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, Mental Illness is an Asshole and other Observations, available from Amazon; signed copies are also available directly from the author.
To learn more about Gabe, please visit his website, gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline podcast. I’m the host, Rachel Star Withers here with my amazing co-host, Gabe Howard.
Gabe Howard: It’s always awesome to hang out with you, Rachel.
Rachel Star Withers: Gabe, did you know that May is Mental Health Awareness Month? I bet you did.
Gabe Howard: You really can’t escape it, right?
Rachel Star Withers: Right.
Gabe Howard: If you’re in the mental health advocacy game, it’s all we talk about.
Rachel Star Withers: Yes, and we’re pretty far into May now and with awareness about mental health comes stigma, and that’s going to be a big topic on our show today because, yeah, awareness, I think, is a good and bad thing.
Gabe Howard: Everything cuts both ways, right? Mental Health Month was absolutely created to raise awareness about mental illness, about mental health issues, and help remove some of that mystery. And as you remove mystery, you remove misinformation and that helps reduce stigma. But of course, as I’m very fond of saying, whenever you have to have a month about something, it pretty much means nobody knows what it is, nobody understands it, and we probably ignore it the rest of the year,
Rachel Star Withers: Yeah.
Gabe Howard: Which I understand is pessimistic.
Rachel Star Withers: Coming up in our show, we have an amazing guest, I was blown away by him, Gabe, Dr. Brandon Kohrt. He’s a psychiatrist and an anthropologist and he’s been working for over twenty five years to improve mental health services all over the place. He’s worked with the Carter Center and the World Health Organization and UNICEF. And he’s going to talk about how stigma towards mental disorders like schizophrenia is handled around the world.
Gabe Howard: It was fascinating to listen to your interview with him, because it really drove home to me that it’s not one size fits all. I only understand stigma and discrimination as it relates to, well, frankly, a white male American, because that’s who I am. And what he was explaining and working with in other countries was vastly different than what we work with in America and even in America, it’s not one size fits all. I learned so much and I know that our audience will as well.
Rachel Star Withers: Mental Health Awareness Month, it’s put on by Mental Health America, and the goal is that May is a time to raise awareness for those living with mental or behavioral health issues and to help reduce stigma that so many people experience. And it actually started in 1949, which is weird because when I think of these months, I kind of thought they were like recent things, all these awareness month, I thought maybe they started in the 90s.
Gabe Howard: No, they’ve been around forever.
Rachel Star Withers: I didn’t know that, though, especially a mental health one starting in the 50s, though? Like, I just see I also thought people caring about mental health, you know, was a recent thing. But no, even in 1949, someone was like, hey, we need to raise awareness about mental health. People aren’t taking it seriously.
Gabe Howard: What’s fascinating to me is that I was diagnosed with bipolar disorder when I was 25 years old, I didn’t find out about Mental Health Month until I was probably 30 years old. We have a lot of work to do in getting word out, because until I became a mental health advocate, I never even heard of it.
Rachel Star Withers: Absolutely. Same thing here, and it’s funny because I went to the Mental Health America website and they have a tool kit that you can download with materials. They were really good materials. If I had a real workplace, meaning not me and you podcasting here, Gabe, I would be like I would hang these posters up, like different tips that were really good about how to handle small, everyday mental health issues that might come up in your life. And I was really impressed. But at the same time, I was like, but what are these being used for? Who is downloading them? Where are these posters supposed to be placed without someone pushing them to do it? It’s sad on one way because I’m like this content is incredible. They did some amazing stuff here. But yeah. How exactly, Gabe, do we raise awareness? It’s such like a broad term.
Gabe Howard: Raise awareness is one of those sticky wickets that I always have a problem with. The example that I love to use is if I raise awareness about my mortgage, that just makes people aware that I have a mortgage, it doesn’t do anything to resolve the underlying problem, which is paying my mortgage. We’re aware of a lot of problems in society, like homelessness, for example, which impact people with mental illness disproportionately to the rest of the population. That awareness has not led to a significant reduction or resolution or help. So sometimes I just wonder, do we need to raise more awareness about mental illness? Are there people that don’t understand? The answer is yes. There are people who don’t understand. But when do we move from raising awareness to actually solving the problem? I feel like since 1949, we’ve been raising awareness. Where’s step two? I feel like we’re missing step two, Rachel.
Rachel Star Withers: I agree, and then I also feel it’s like there’s a point where some people take it overboard and I know this has happened to you before, but it’s happened numerous times to me. I refer to myself as a schizophrenic. I have schizophrenia. A person with schizophrenia would be a schizophrenic. I honestly put it on the same level of, you know, if you’re from America, you’re an American. That’s just how I handle it. And in the past, let’s say few years, I’ve actually had people correct me, be like, no, no, you are not schizophrenic. You’re a person who has schizophrenia. And I’m like, right, yeah, I know that. Like, no, no, you’re not your disease. Yeah, I know that. Like, OK, but, you know, I’m just like, I feel like they’re trying to be nice and they’re trying to help me. But I’m like, I know I’m not just that, however. The same way I would be like I know I’m more than just an American. There’s lots of pieces.
Gabe Howard: I say that I’m bipolar, I also say that I have bipolar disorder, I also say that I’m a person living with bipolar disorder. I feel that all are equally valid because they come out of my mouth. I feel that I, as the person with bipolar disorder, have the right to describe my experience however I see fit without being corrected, because being corrected, it hurts. It stings a little bit. I hear constantly that we need to have more open and honest conversations about severe and persistent mental illness. But I’m noticing this trend, of course, where we’re trying to sort of determine all of these rules. Look, many people that want to talk about this are new to the game. They have just been diagnosed. A loved one has just been diagnosed. Rules are the last thing that they’re thinking about. And the context of their statements, the context of their questions and the context of their words is somebody that is looking to understand and to get a handle on what they’re going through. And when somebody is that raw and that vulnerable and that honest and says something. And our response is you said it wrong? I really just feel that we’re putting the emphasis on the wrong thing.
Rachel Star Withers: Schizophrenia, the more awareness comes up, the more controversial the term schizophrenia has become. I’ve had a lot of people say to me that maybe I shouldn’t focus so much on the schizophrenia part of my diagnosis, meaning maybe I should call it something else or how would I feel to call it something else. And there’s actually been different countries who have tried this out. They felt that the term schizophrenia was a little too harsh and it was so stigmatized that they renamed the disorder. And my thing about that is I just feel that if you change it from schizophrenia, let’s say, to a little huff and puff, OK, let’s say we
Gabe Howard: Little huff and puff?
Rachel Star Withers: Let’s say we give it an adorable name. You’re not a schizophrenic. You’re a huffy puffle. OK, I know it sounds like a Harry Potter thing, but you know what? To make it adorable. I feel that then over time that, though, will become stigmatized also. Any word is going to have that connotation. So to me, I’m like, I rather just use the word we have and change the attitude behind it. But that’s me. And I’m not necessarily saying that’s correct. I’ve always been fine with someone, oh, you’re schizophrenic because I’ve never felt that someone has meant it in a negative way. Honestly, I feel that some people have meant it in a ignorant way. They just didn’t know what it was.
Gabe Howard: And when somebody says something ignorant or misinformed or stigmatizing that gives us an opportunity to educate them, it also gives us the opportunity to yell and scream and be offended. But I really, really, really encourage people to take a deep breath and understand that perhaps the person who said the offensive thing didn’t say it out of malice.
Rachel Star Withers: Do you think that stigma can ever be fully erased, Gabe?
Gabe Howard: I don’t think that stigma can ever be fully erased because there’s always going to be somebody that just refuses to believe in reality and I don’t mean reality in the mental illness way. I just there’s some people that believe, for example, that the earth is flat. It doesn’t matter how much science or fact or evidence that we give them. So in that way, I think there are some people that just will believe what they want to believe because of their own experiences, their own trauma, their own misinformation. All of that said, I believe that the average person is good. I don’t believe that they’re carrying around this misinformation for some malicious reason. I believe they believe it because that’s what they’ve seen on television. That’s what they’ve seen on the news. That’s what they have been led to believe. And as there become more and more Rachel Star Withers of the world, that will be slowly replaced with something else. Somebody will say, for example, all people with schizophrenia are violence. And they may think of somebody with schizophrenia that has been violent and that will color their thoughts. But hopefully now they will think, well, but then there’s Rachel. Rachel lives with schizophrenia and she’s not violent. So that will start to slowly give them more information to process. And in that way, I think we can make great, great strides forward.
Rachel Star Withers: It’s a little different, but the same thing. I have depression. I talk about it quite a bit, and sometimes I’ll say something about it and people be like, oh, my God, what’s wrong? And I’m like, oh, nothing, nothing’s wrong. I just have depression. OK, well well, I mean, did something happen to your family? How are your parents? What’s going on? And it’s awkward because then I’m like, no, literally everything’s going really great, actually. Um, but no, I still have depression and it’s like they’re not understanding. They want to help. They want to be kind and caring, but they don’t fully understand. They still think depression is caused by something. And there are different types of depression. But what I have isn’t and I get that with schizophrenia a lot. People they’ll be like, how is your schizophrenia, Rachel? And I’m like, I mean, it’s there. I mean, you want me to go call it? I’m not sure you’re asking me. You know, it’s like they think it’s you having schizophrenia is either, oh, you’re really sick or you’re well and there’s no in between.
Rachel Star Withers: Whereas I kind of feel like I mean, it’s it’s just chillin’. I’m not having a psychotic episode. Is that what you’re asking me? But I mean, it didn’t disappear. It’s a stigma that they have of either you’re sick or you’re not. And then there must be a cause for it. And they’re not intentionally being mean or anything. Even my parents at times will say things that I’m like, no, no, there’s nothing that you can help me with. And there’s been several themes of stigma they’ve noticed when it comes to people with mental illness. One of them is that people with mental illness are crazy homicidal maniacs. And you need to be afraid because we could flip at any moment and just go on a poking spree. Who knows? You know? The second one is that we’re childlike, amazing marvels of the world and we need to be protected. And we have like this special power and it’s so great. And, you know, you think like A Beautiful Mind. My God, you can just see things. And it’s just so amazing you’re different. And then the third stigma that they found is that we are responsible for this illness and we have a weak character. If we were stronger, this wouldn’t have happened.
Rachel Star Withers: You know, like strong people, they wouldn’t hallucinate. It’s because you’re, like, weak. Yes. I have had people come at me, you know, with all three of those things. And even I’d say the hardest for people to wrap their heads around is the childlike wonder one, because it’s like, well, I’m not thinking of you negatively. If anything, it’s a compliment. I had a boss once pulled me aside outside in the parking lot after work. And be like, Rachel, can I just talk to you for real? And I’m like, yeah, yeah. What’s up? I thought I had to do with work. It did not. And she’s like, are your hallucinations? Really you’re seeing? I think you can see into the spiritual realm. And I think that you’re special and you’re touched by God because you can see the you know. And she’s going into all this stuff and at the same time I’m like, no, no. But she meant it as like a compliment and was trying to tell me that she respected me and I don’t know, it was like slightly offensive and it was hard because she was my boss. So I kind of wanted to correct her. But it was like I just don’t really know how far I can push this correction.
Gabe Howard: When we’re talking about stigma in schizophrenia, I think one of the things that we need to consider is that there is misunderstandings of all cultures and genders and socioeconomic classes, and there’s all kinds of misunderstandings. Now, I really, really, really believe that in the mental health community, we believe that all stigma is of a malicious, willful design that is done intentionally to attack us. And I really don’t feel that the majority of stigma is that way. That said, the outcome is exactly the same. It doesn’t matter what the motive for the stigma is, the effects on all of us are identical. This knowledge only changes how we seek to fix it.
Rachel Star Withers: And I know we’ve spoken on this podcast, I think briefly about it as an example, but there was a movie, 2019, the Joker movie. Yeah, no, that was terrible. On a lot of levels, unfortunately. Yes, it does portray schizophrenia in a horribly, horribly negative, detrimental light that is shocking for this day and age. It is incredibly out of the blue violence and it’s all the negative stereotypes you can think of for schizophrenia. And they did a study on this just recently. And yes, people who watched the movie afterwards when they were asked, did they now have like more of a prejudice towards mental illness? They were like, yes, absolutely. They found they were more scared of people who talk to themselves, people who just were different. It made them think, I can’t trust them. But what was scarier to me was that it also, after seeing the movie, exacerbated self-stigma, that people said they were less willing to seek help if they thought they had a mental illness because they were being afraid of being seen that way. That’s what’s scary to me, Gabe, is that it’s not always just about other people stigmatizing you, but you stigmatizing yourself. That people who might be dealing with something and now they’re afraid to get help.
Gabe Howard: I don’t think that people consider self-stigma enough. When I was in the psychiatric hospital, obviously, I didn’t plan to go there. I just sort of woke up there one morning and I was diagnosed with bipolar disorder. The first thing that I thought was that I was going to have to liquidate all my assets and move into a group home. The next thing that I thought is, thank God they caught this before I murdered my family. And the last thing that I thought is how could I just be so incredibly mentally ill and not have caused more problems? And the reason that I believed all these things is because I believed that people with mental illness looked a certain way, acted a certain way and had certain attributes. And now that I was diagnosed with mental illness, I self stigmatized myself. I just believed all of those things. And I was also lucky that I started blurting this stuff out to various doctors, support groups, therapists, et cetera. And they were able to give me a better understanding of how this worked, because if they hadn’t, I could have gone years not getting adequate care because I believed myself to be unworthy, bad, etc.
Gabe Howard: And when we talk about feeling unworthy or bad or not wanting people to know for fear of the fallout, well, we have mental illness. So feeling unworthy and bad is kind of a symptom of that. So we’ve got our irrational or sick brains telling us that we’re unworthy and bad, and then we have our logical brains believing that we’re unworthy and bad. So there’s no respite, right. Even when we have full control of our faculties, we’re now self stigmatizing ourself. And then when we’re symptomatic, Rachel, it’s like this awful circle that you can’t get off of. And I think that’s why it’s super important that we understand that self stigma is a thing, because I saw how easy it was for me. I believed upon getting a diagnosis of bipolar disorder that suddenly I was a person who is capable of harming my own family and I believed it instantly. That is a devastatingly lonely thing to think. I think that’s something that we need to improve upon. We’re really good at talking about the stigma that society places on us, but we’re not so good at placing that microscope on ourselves. Now, that said, a lot of stigma comes from society. And I know, Rachael, it’s happened to you a lot.
Rachel Star Withers: And it’s funny because I’ve had so many people ask me, like, oh, have you ever been discriminated against for your schizophrenia? And I’m just kind of like, not really. Other than I always tell this one story, of I had a boss, you know, I went to H.R. and they knew I had schizophrenia and he would make a joke that like I was high. And that bugged me because I’m really against drugs, you know, little DARE lion all the way. And it would bug me that he would say that out loud. But I’m like, not really. And when I was researching for our episode, I remembered something, Gabe, and it just I realized that, yeah, actually, you know, I grew up incredibly religious. And I was going to be a missionary for a while. And I actually went to a special Christian missionary training school when I was 17 and 18. And I’ve, you know, alluded to it a few times throughout this, is that I had an exorcism performed on me there. And it wasn’t until I was researching this episode that I started realizing that I was very much so discriminated and stigmatized when I was there.
Rachel Star Withers: I didn’t have the diagnosis of schizophrenia at the time, but I had tried to seek help for my hallucinations to the counselor there, and they had decided that meant I was demon possessed because I saw things, the hallucinations. And when I look back now, I went through all of those stigmas. First it was very wow, you can see, you know, the demons and the angels fighting, you have this special power. And then it turned into pretty much now the schizophrenia is my fault. We did an exorcism on you. And then I came and told them that I was still hallucinating. And they said, oh, OK. Well, that means you’re causing this. This is your fault. You’re weak. You chose to let the demons in. That’s why you’re hallucinating. And that turned into you can’t be trusted. You can’t be trusted around people. And this was a year of my life where they, I was put aside. And it’s hard to explain. I did live at the school. It was far away. But they pulled all responsibilities from me and they let all the other thousand students know that I was dangerous. And
Gabe Howard: Wow.
Rachel Star Withers: Yeah, and I kind of
Gabe Howard: And you were a teenager, right? I mean, let’s
Rachel Star Withers: Yes, 17, 18.
Gabe Howard: That’s very young to have a thousand peers look at you like you’re dangerous
Rachel Star Withers: Yeah.
Gabe Howard: Or be afraid.
Rachel Star Withers: Uh-huh, all of my duties were stripped from me and they told people that there was something spiritually wrong with me. One person actually came up and told me, this is a story that has stuck with me and it’s been buried in my head, I think, because it hurt me so much. They said that God gave them a vision about me. And they said I was in a room and I was crying to God for help, but God wasn’t in that room because he’s disowned me and doesn’t want me. That’s why you see demons, and translation of all of that, that’s why you hallucinate. That’s why you have a mental disorder. And that didn’t occur to me till just the other day that I was like all those people had been stigmatized to believe all this crazy stuff. And it did hurt me. You know, luckily, it was good that I didn’t flourish at that school. As you could see, it had some backward ideologies. So I think in the long run, that was great, that everything was stripped from me. But I remember there being like this training where all one thousand students on campus were in the training except for me, because I was not allowed. And everyone, you know, was then walking around like, oh, hey, that’s that girl who can’t do the training with us. It was a hard, horrible time. And not even just with Christianity, I know I’ve had other people talk to me from different religions, it is very steeped in so many people’s thoughts. It’s so steeped in different cultures and not just like, oh, well, this culture out in such and such country, but no, even here in America, you have people who think certain things.
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Gabe Howard: And we’re back discussing the stigma of schizophrenia.
Rachel Star Withers: We’re excited today to be speaking with Dr. Brandon Kohrt, who is a psychiatrist and anthropologist, he has worked with numerous countries and organizations all around the world, including the World Health Organization and UNICEF. First off, Brandon, right away, the thing I have to ask about is you are a professor of global psychiatry, right?
Brandon Kohrt, MD, PhD: That’s correct.
Rachel Star Withers: What is that? What is global psychiatry?
Brandon Kohrt, MD, PhD: Well, we increasingly try to say global mental health to be more inclusive, but the idea is how do we think about mental health, not just within, and I know many of your listeners are based in the US. So how much can we go beyond the US and think about mental health as a global issue, given that it affects people all around the world, and that if we as a people here in the USA are only focusing on treatment solutions or stigma reduction or policies that will work for people in our own country, we haven’t addressed the needs of all of those others around the world. And a lot of the models that we develop, the diagnostic tools, the medications, the psychological treatments can’t just be for people in our borders, but we really need to do things that can be adapted and modified and delivered around the world. So this field of global mental health, global psychiatry, really expands our thinking beyond just our own borders. And it also really emphasizes the idea of equity, right? That everybody should have access to quality care. It’s not something that should be limited based on your nationality.
Rachel Star Withers: And as you approach this subject, can you tell us what are some of the generals of the difference between global psychiatry and then just, let’s say, psychiatry in the U.S.?
Brandon Kohrt, MD, PhD: Sure, well, often when we come up with a treatment, we think about how the health system operates in this country and so we assume, OK, well, there’s got to be private health insurance and then there’s government provided health insurance. And, you know, what is the housing situation like in the country? Who pays for medications? What are the training systems like in terms of how many psychiatrists and psychologists are available? But all of those solutions, if they’re limited to the US context, might not work in other places. For example, if we think about parts of the world where I worked, like in Nepal or Liberia, there might be one psychiatrist to a million people or two million people or three million people. So we can’t just say, oh, if you’re having mental health problems, just go call your local psychiatrist, because they don’t exist. And so we need to think about other types of solutions to mental health that involve maybe people at the community level or in primary care or in schools doing a lot of the things that a psychiatrist or psychologist or a clinical social worker might do in high income countries like the US.
Rachel Star Withers: Now, you’ve worked on different projects with numerous countries all around the world. Can you share some of those projects with us?
Brandon Kohrt, MD, PhD: So my first work was actually with former child soldiers in Nepal. So there had been a 10 year civil war and I was working with a local NGO in Nepal, as well as with UNICEF in the country, trying to figure out how we could get kids who were former child soldiers to go back home. And that was the first time I began to think in depth about stigma, because we had found that although these, you know, often teenagers had experienced really traumatic events during the war, when I talked to them, they said, you know what, the trauma was bad. But you know what’s the hardest for me? Coming back home and not being allowed to go back into school or my family not wanting me in the household or not being able to join a sports team or a drama club because everybody’s stigmatizing against me. And it was really the worst for former child soldiers who were girls, who said they felt just tremendous amounts of stigma. And then I realized that trauma is an awful thing. But if your society and community rejects you after a traumatic event, that can be worse than the event itself. And that really got me on the path of saying, hey, we need to think about stigma in any type of mental health services we’re doing.
Rachel Star Withers: Now, when we talk about stigma, that’s such a huge word and stigma towards mental health, you know, it’s just so many different levels. This podcast, we focus on schizophrenia, but of course, there’s so many pieces that go into mental health. What are some of the differences as far as different countries and the types of stigma that you’ve dealt with?
Brandon Kohrt, MD, PhD: In my work, I’ve seen the whole ranges of different types of stigma around the world, and at first it might seem like, oh my goodness, the stigma is so much worse in other settings. If you just look at kind of your first impressions. About twenty five years ago, I was working in Nepal for the first time and wanted to see how mental illness, including schizophrenia, was treated. And I was in a pretty rural community and there were no psychiatric hospitals or even general hospitals nearby. But there was a temple where people were taken who had psychiatric symptoms and nobody was there who had formal biomedical mental health training. But there were people there who prepared food, who talked to people who were in distress. There were kind of some religious priests who would do prayers with them. And when I first got there, I noticed how many people were chained up. And my first impression was, oh, my goodness, this is so awful. Look at the really miserable stigma here. But then I realized that that was kind of all they could do. And so if somebody was in a pretty severe manic episode or psychotic episode and there was nothing else, no medications, no other supports around that this was done, at least in their thinking, as the best thing and the safest thing they could do to protect them.
Brandon Kohrt, MD, PhD: And the longer that I spent there, I lived there for a couple of months. I realized that as people got better, then they could go about their community, they could interact more, they could get out and about. And so that first glimpse made me think, oh, my goodness, the stigma is so awful. But I think there’s also a much there’s a much bigger picture in terms of how people are treated in different cultures, which is a pretty stark contrast from my experience as a psychiatrist here. And that is once somebody has a diagnosis of schizophrenia, it’s seen as a permanent label.
Brandon Kohrt, MD, PhD: It’s always with you. It’s always going to be there. You know, you’re a schizophrenic. That’s how society and the medical system might treat you. But in many parts of the world, that same framing isn’t there, that you might have psychotic symptoms or symptoms we’d call psychosis from time to time, but those might go away. You might get a little bit better. You might have problems again, but it’s not seen as a permanent forever condition in the same way that we see here in the US. The other thing that’s really interesting about differences culturally is that some of the types of expectations we have regarding schizophrenia and violence might not be the same in all parts of the world. For example, one study was done and they looked at the content of auditory hallucinations and they found that among 20 people in the US, a lot of those were pretty kind of negative and violent command auditory hallucinations. But in India, among about 20 people there, mostly it was hearing the voices of family members talking to them. And then in 20 people in Ghana, they were hearing kind of religious or spiritual voices. So the experience of mental illness might also differ based on the part of the world you’re living in.
Rachel Star Withers: So, Brandon, sometimes there is a debate about what language is appropriate, for example, we don’t want the media to call people with mental illness crazy, and yet some people who have mental illnesses often refer to themselves as crazy as like a form of empowerment or like taking the term back. Is there a balance to that stigma wise?
Brandon Kohrt, MD, PhD: I think language is so important, and when we work cross culturally and have to find words in other languages to describe mental illness, we spend a lot of time thinking about that because of how it can change how people are viewed. I think, first and foremost, going with the language that somebody chooses to use to describe themselves and the idea of, say, taking a stigmatizing term and owning that and wanting to use it and take power in that way, there can be tremendous benefit from that. Then it’s like I’m going to call myself crazy before somebody else does. There’s also a lot of thinking that can go around when we look at people in different parts of the world, does it really make sense to use the same exact terms that we might use in English when other local terms and look at ways of describing mental illness that might be far less stigmatizing? And in Nepal, we’ve done a lot of work around this where there are terms like broken brain or the brain is blown out, things like that that often are used even by health workers to describing mental illness. But then there are other terms like suffering in my heart-mind or pain in my heart-mind that everybody has. And that is something that can open up a conversation about mental illness without being as stigmatizing. And so we spend a lot of time, whether it’s looking at terms for in Creole in Haiti or terms in Liberia or Uganda or other parts of the world, what are ways that we can locally describe mental illness that don’t come across quite as stigmatizing and open up conversations between people? And so at the end of the day, trying to find as many terms as possible is very important. And letting people who live with mental illness choose how they want to be described really is absolutely crucial.
Rachel Star Withers: I like that, the letting them choose. I think that’s a very important part, although as you were talking there, I do kind of like the brain blown out. I don’t know. I feel like I might use that. That’s
Brandon Kohrt, MD, PhD: You’re welcome to.
Rachel Star Withers: Going to come up and say
Brandon Kohrt, MD, PhD: You’re welcome to.
Rachel Star Withers: What do I have? Brain blown out. That’s it. The doctors will be like, eh . . .How have you seen since you’ve been doing this work, stigma change worldwide?
Brandon Kohrt, MD, PhD: In the past 10 years, I’ve seen pretty significant changes in how we think about and respond to stigma. Ten years ago I was in Liberia and we were organizing one of the first nationwide anti-stigma campaigns. So at the time, we first went around and tried to talk to people and learn some of the different beliefs and thoughts that they had around mental illness. A lot of people felt that mental illness was a punishment from a 14 year war that had gone on in the country. And the idea was that, well, if you had survived this awful, awful war, you must have made a deal with a spirit or a bush doctor or somebody like that, somebody who had spiritual powers. And so you violated that spiritual promise. And because of that, you have mental illness. And so people were quite stigmatized thinking that, well, this was their punishment. So what we thought at the time and what many of my colleagues in medicine think and others in public health think about is, you know, you just need to teach people that schizophrenia is a biological disease, it’s a brain disease. And if you can convince people of that, then they’ll suddenly stop stigmatizing. So we thought, OK, well, let’s test this actually in a research study. And so we organized call-in shows. We organized dramas. We made messages that could be played on the radio. And through all of that, we tried to send around the message that mental illness is not a spiritual affliction. It’s not because somebody’s done something bad, that it’s really related to a brain disease. So we did this just like we thought was important to reduce stigma.
Brandon Kohrt, MD, PhD: And then we came back six months later to see, OK, did this work? And we were happy at first because people said they heard our messages, they remembered our messages. But then we talked to them a little bit longer and found that those stigmatizing beliefs about not wanting to spend time with somebody who had schizophrenia, thinking that they were violent, not wanting them to watch their kids, not wanting them to share a meal at a restaurant, those same beliefs were all there. So we thought something’s wrong here. Like we’re trying to change how people think about mental illness. Why are they still stigmatizing? And what that showed us was, you know, if we’re just changing knowledge about mental illness, that doesn’t actually change stigma and we needed to figure out something else to do.
Rachel Star Withers: What is that something else? What helped with that?
Brandon Kohrt, MD, PhD: So in thinking about what were the alternatives, we then went back to some of the scientific literature and one of the things that was really helpful was actually looking at the US in like the 1950s and 60s and racial integration in schools. And they came up with this thing called the jigsaw classroom, where they got people who were black Americans, white Americans, and they got the students to work together in the classroom with a common goal. And this was a field of kind of group psychology where the idea was if people spent time together, that would actually change their attitudes and their behavior and reduce prejudice. So it wasn’t about increasing knowledge of one group to the other group, but really just promoting human experience. Well, there were also people in the US who had been using similar approaches saying, OK, can we for mental illness try and improve social contact or social interaction? Just spending time together. And I don’t mean time together like I’m a doctor, I’m going to spend time with my patient. But really on a human to human person to person level, can we spend more time together? And so we said, well, could we try that same approach and use it in these international settings to try and reduce stigma? So we came up with a program called Reshaping Mental Health or Reshape Mental Health.
Brandon Kohrt, MD, PhD: And this was the idea of could we train people in low and middle income countries around the world who maybe even didn’t even have basic literacy, couldn’t even read or write, to be able to somehow tell their personal stories to others in their community, to health workers to try and reduce stigma. So we used a technique where people take pictures to tell stories of their lives and we train them to basically develop a three part story. The first part is what are pictures that represent what it’s like to live with schizophrenia or another mental illness? Take some pictures then to describe what it’s like to go through treatment, and then take some pictures to demonstrate what recovery is and what recovery means to you. So we spend about 8-12 weeks meeting once a week, giving them cameras, teaching them how to tell their stories. And we found that people living with mental illness, they just loved it. They had never done that before. People hadn’t been interested in those stories. And they got really creative with the photography they were doing. Then once they’d done that and they felt comfortable, we would have them in community settings or in primary care, like a doctor’s office or meetings with other health care workers, go and tell the story of what it’s like to live with mental illness, to try and create these human to human connection.
Brandon Kohrt, MD, PhD: And we studied it in our research framework to see if it made a difference. And it really dropped stigma. And we said, well, why is it happening? And we think it is because it’s creating the person to person connection. And what’s really impressive about the types of photographs that they did was that it wasn’t about symptoms, it was about their lives. So, for example, somebody who had severe mental illness, their early pictures might be of isolation, of being alone. Then the pictures of treatment aren’t pictures showing pill bottles and things like that. But they’re actually pictures of their time with people in their community that are helping them, with a counselor or a doctor or a nurse. And then the most impressive, Rachel, the stuff that really took me back was their recovery pictures, because it really showed, look at me, I’m living the life that I want to. We had one woman who had severe mental illness and her recovery pictures were helping her children study after school, which was just beautiful to see because she said when I was suffering with mental illness, with no medication and no treatment and no support, I couldn’t even help my kids with their homework.
Brandon Kohrt, MD, PhD: Somebody else took pictures who was a painter and said when I was suffering from mental illness, I couldn’t paint houses well. And he had this beautiful picture of a ceiling that he had painted. And then there was one more thing, which was pictures of goats. And we thought, why are we seeing all these people in Nepal who talk about recovering and have pictures of goats? Like this is a really common theme, what’s going on here? And they said, you know what, I’m so proud now that I’ve gone through treatment, that I’m in recovery and I can actually raise my own goat. People thought before that I had severe mental illness, I couldn’t do anything for my family, my community. But look, I’m raising a goat. Goats are important for festival season. They’re often eaten for a major festival. And it’s just a sign of kind of wealth and prosperity to be able to do that. And so what you saw people hearing those stories think about is not the symptoms that a person had, but the type of life that they could live and feel those shared connections, their shared aspirations, those shared aspects of what it’s like to be human and be alive.
Rachel Star Withers: That is really sweet. I love the little, the thought of the goats. A lot of what you’re saying, I feel it’s the kind of thing that on the surface, we all know. That once, you know, you connect with someone personally, the stigma goes away, regardless if you’re talking about race, different countries, mental health, physical health. But it’s so hard to put into practice. What advice do you have for people like me, for people who have schizophrenia and other severe mental illnesses? How can we start to tackle stigma around us?
Brandon Kohrt, MD, PhD: Yeah, so I think there are a number of things that people can do. I want to say, though, that we always want to think about also how we can change the system around people with mental illness. So you don’t feel like it’s your responsibility that somehow it’s your fault you’re being stigmatized and you need to fix that. So one of the things that I think we need to do as a society is also change some other aspects. So one is really trying to focus on journalists and having journalists present mental illness in newspaper and social media, television, whatever it may be, in different ways. And the Carter Center and Rosalynn Carter, Jimmy Carter’s wife, have started the great journalism program to help journalists be more accurate and human in the reporting of mental illness. I think the other thing that we really need to do is change the police treatment of people with mental illness. And one of your episodes you had a CIT or Crisis Intervention Team officer on describing that as one of the things that can be done. And we’ve tried that in Liberia as well as in other parts of the world. The other thing we need to do is to get health workers, doctors and nurses, to approach people living with severe mental illness as people first and second in relation to their disorder and to really find out what that person wants to do with their lives as opposed to just focusing on their symptoms. And this brings me to what a person with mental illness, a person living with schizophrenia, or one of their family members can do.
Brandon Kohrt, MD, PhD: And that’s when you go to see a health worker, they are going to immediately start asking you about your symptoms and everything else. But go and share with them something that’s important to you about who you are. To be able to say I’m a painter or I really like dancing or I like hiking or I want to go back to school or some other goal that you have so that you and the health worker can work towards that goal and not just focus on eliminating symptoms, because as you’ve talked about a lot lately, some of these symptoms get better from time to time, but then they come back again. And if all we think about is people in terms of those symptoms, that stigma is always going to be there. But if I think about you as a podcaster or somebody who’s spreading the message of how people can live full lives with schizophrenia, that moves beyond just thinking about symptoms. The other thing is, as a caregiver of someone who has mental illness for a loved one or a family member is also when you go to meet a health professional to introduce all these things about a person beyond just their symptoms to share with that health worker. Here’s some of the other things that are important about this person that you should focus on.
Rachel Star Withers: I love that. Yes, very, very powerful and being able to just connect on a human level, like you said, podcaster. I’m sure me and Gabe have both kind of come across as everybody has podcasts now. So it’s kind of easier for someone to connect when they’re like, oh, you do a podcast. That’s cool.
Brandon Kohrt, MD, PhD: Yeah, yeah.
Rachel Star Withers: So does my cousin’s friends, whoever. And they’ll, like, automatically have an opening. Versus, oh, you have schizophrenia? Usually there’s dead silence. There’s not that connection. But, yeah, almost, you know, really focusing on the human aspects that connect so many of us.So how can our listeners find out more about your current projects and your work?
Brandon Kohrt, MD, PhD: So, I wanted to share a couple of different resources, not just my own, but others that are out there that I think can be really helpful for family members, for people living with schizophrenia, for folks who want to do better treating and interacting with people living with schizophrenia. So there’s a great resource in the UK called Time to Change. TimeToChange.org.uk. There’s a lot of wonderful resources about being a mental health champion, dealing with mental illness, stigma in schools and also in the workplace. And the UK really strikes me as one of those countries that’s really trying hard and doing some really innovative things to be able to address stigma. And one of the most striking and interesting things is that one of my mentors and collaborators, Sir Graham Thornicroft, he’s a psychiatrist in the UK and he was actually knighted by the Queen in 2017. And so if you can be knighted for slaying stigma as opposed to slaying dragons, I think that’s a good sign that a country is really is dedicated to challenging this. A couple of other great programs.
Brandon Kohrt, MD, PhD: One is NAMI, as you’ve mentioned many times on the program, but they have a stigma free pledge and a number of resources such as see the person, not the condition. Another great resource, you know, if you’re someone living with schizophrenia is the Global Mental Health Care Network that is currently led by Charlene Sunkel out of South Africa. And that’s just a great way to actually connect with people who are living with mental illness in Africa or Asia or South America and just kind of talk about the global experience of what it’s like to live with mental illness. And there’s also a great new book by a colleague of mine, Richard Grinker, who’s an anthropologist at George Washington University, called “Nobody’s Normal: How Culture Created the Stigma of Mental Illness.” And this is a really nice book to kind of trace the history of stigma, but also to see how it’s changing, how as we are moving forward in the 21st century, how we think about mental illness looks a lot different than it did 100 years ago.
Rachel Star Withers: Well, it has been awesome speaking with you today, Brandon. Thank you so much and thank you for all the work that you’re doing around the world, dealing with stigma towards all the different mental disorders, mental illnesses and stuff. Really awesome work that you’ve been up to.
Brandon Kohrt, MD, PhD: Thank you so much for this opportunity, I was so happy to be invited to this because I think it’s a great resource and I’ve referred some of my students to this. I’ve referred new patients who were newly diagnosed to this. And I hope to share what you’re doing with my colleagues around the world and inspire some podcasters in different parts of the world where I work to do similar things and share their stories. So thank you very much, Rachel, for what you do. I really appreciate it.
Rachel Star Withers: Oh, thank you.
Gabe Howard: Rachel, excellent interview, as always. Now, he talked mostly about stigma in other countries and cultures. Were you able to relate to that personally in any way?
Rachel Star Withers: Well, it’s funny because he’s talking about those goat pictures and I do love goats, but it was funny because when he said that, that the people were so proud to show off that they were able to help their family, that they were able to contribute, being able to give their family the goat that they’ve raised. That actually meant a lot to me because I don’t think my parents fully grasp how much it means to me to be able to help them. But I love being able to buy things for my parents and not even like amazing things. If you ever saw the show Pimp My Ride, I have been quietly pimping both of my parents’ cars out. Like, just it’s just been this thing I’ve been doing where I’ve taken over the esthetics of their cars. I’ve been cleaning them, detailing them. My mom likes the color purple so slowly her Altima is getting more and more purple accents. I don’t have the financial means to go out and buy my parents new cars. I would absolutely love to, but this is something that I can do. I can do little things like that, buy them like gifts, I’m able to buy them groceries, surprise them with food. And it really means a lot to me because I feel like I’m contributing because they have done so much for me. And it helps me feel, and this is a little bit of self-stigma, but it helps me feel like I’m not being a burden to them. So when he said that about the goats, like I identified because I feel the same way, how much pride when I’m able to bring home food or do something special for my parents.
Gabe Howard: Rachel, I also love goats to just a ridiculous extreme, but I know exactly what you mean. It’s not the size of the gift or the contribution, it’s the contributing. Because we all want to feel like we’re giving back in some way, like we are meaningful to the equation. Rachel, what can be done about stigma? Is this solvable at all or is this the best we’re ever going to get?
Rachel Star Withers: You know, I mean, stigma, raise awareness, these are all like these very vague words, you know, and it’s like how do you even begin to tackle a worldwide problem? But it’s also like a very small problem where it can be just the stigma that you tell yourself, the stigma that you believe about your family members, about a loved one or something. And that actually has a very simple answer. They did a study where they were trying to figure out what type of information reduces stigma of schizophrenia. And what they did was they had these different subjects and they presented them with some different stories about schizophrenia and people with schizophrenia and different things happening. And before they were asked, did they know someone who had a mental illness of any sort? Across the board, they found out that the people who didn’t know anyone did have some very negative reactions and very kind of stigmatized views of people with serious mental illnesses. However, those people who knew someone did not. If they knew someone personally, across the board, they did not have as many negative ideas about people with schizophrenia. Now, here’s the interesting part to me, though.
Rachel Star Withers: Most of the time, the people couldn’t even tell you what the person they knew, like what their illness was. And sometimes it wouldn’t even be a mental illness. It would be something like, oh, well, my cousin has Down syndrome. So I that I can identify with this person who has schizophrenia. And so you have two different things. But it’s like, no, I know someone too, who struggles with a problem with their brain. And then they weren’t as scared. They didn’t have as many negative connotations about the word schizophrenia. And I think that’s so powerful that at the end of the day, it wasn’t even like, oh, you have to know another schizophrenic to not be scared of them. It was, no, you just have to know another person who struggled with their brain. That’s I think is what’s powerful. Most people cannot be as open about their diagnosis as me and Gabe. Me and Gabe, this is our job. We’re very lucky. There really isn’t going to be a repercussion if people found out that Gabe has bipolar.
Gabe Howard: And part of that is because we have such great families, I mean, let’s be
Rachel Star Withers: Yes.
Gabe Howard: Honest, it’s not just us, it’s we have very supportive families backing us.
Rachel Star Withers: Yes, and it’s great, I’m very open about my schizophrenia because I know a lot of people cannot be and to my loved ones out there, my friends and my family, I’m not saying put your loved one who has schizophrenia on blast and tell everybody they have it. But, you know, you don’t always even have to say it’s schizophrenia. Just being able to share that you have someone in your life who struggles with something can help other people’s views and find that the unknown becomes less scary because you’re connected somehow and it’s all about, you know, a human connection. We have this wonderful month of mental health awareness, but keeping it aware all the time, it’s just making those connections with people, letting them know that, hey, everybody’s human. And that makes us less scary. That makes us less scary to each other across the board.
Gabe Howard: When you said keep mental health month all year round, I thought of the end of A Christmas Carol where it said, keep Christmas in your heart all year round. So keep mental health awareness month in your heart all year round. Don’t be Scrooge.
Rachel Star Withers: Oh, that is so sweet. We need some little Christmas music now to play. Right here during summer. Thank you so much for listening to this episode of Inside Schizophrenia, please like, share, subscribe and rate our podcast and share it with all of your friends and family as that is a great way to raise awareness for schizophrenia. Look, we made it easy for you, right? Thank you so much. And we’ll see you next time here on Inside Schizophrenia, a Healthline podcast.
Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at PsychCentral.com/IS or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.