Inside Schizophrenia Podcast: Does Language Matter When Discussing Schizophrenia and Psychosis?

Guest Bio & Inside Schizophrenia Podcast Hosts

Ken Duckworth, M.D.

NAMI Chief Medical Officer

Ken Duckworth’s journey into psychiatry started when he was a boy growing up with a dad who experienced severe bipolar disorder. His father was loving, kind, and periodically quite ill, hospitalized for months at a time. Ken became a psychiatrist, in part, to help his father. He serves as the chief medical officer for NAMI and feels fortunate to be a part of this community.

Ken recently authored NAMI’s first book, “You Are Not Alone: The NAMI Guide to Navigating Mental Health ― With Advice from Experts and Wisdom from Real People and Families.” Written with authority and compassion, the book is an essential resource for people and families seeking expert guidance on diagnosis, treatment and recovery. It features inspiring true stories from real people in their own words.

Ken is double-board certified in adult and child/adolescent psychiatry and has completed a forensic psychiatry fellowship.

www.nami.org

Schizophrenia & Psychosis Guide: Care, Advocacy, Engagement:

https://www.nami.org/Support-Education/Publications-Reports/Guides/Schizophrenia-Psychosis-Guide-Care-Advocacy-Engagement/

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.comm.

Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.

Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.

Episode Transcript

Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!

Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline Media podcast. I’m your host, Rachel Star Withers, here with my great co-host Gabe Howard. Most of us in the general population know that you should not call people crazy, insane, psychotic or schizo. But what about other wording? When you are discussing a person who has been diagnosed with schizophrenia, how should you refer to them? Do I say person with schizophrenia? Schizophrenic? Mentally ill person? Is it offensive if you refer to someone as a schizophrenic? Should I even refer to myself as a schizophrenic? Recently, NAMI, the National Alliance on Mental Illness, released a Schizophrenia and Psychosis Lexicon Guide. Joining us to discuss their guide is NAMI’s chief medical officer, Dr. Ken Duckworth.

Gabe Howard: Rachel, I think we need to start with the biggest initiative first, and that’s that person first language where, as you said, are you a person living with schizophrenia or are you a schizophrenic? And NAMI’s Lexicon Guide and a lot of the guides that are out there always say that you should put the person ahead of the illness, and at first blush, that sounds very reasonable. Rachel comes first, her illness comes second. But that often leaves me wanting a little bit because, for example, you can call somebody a doctor first and their name second, and nobody immediately corrects you and says, why are you referring to people by their jobs? They’re not required to lead with their name and then their occupation. We as a society often lead with our occupation, and nobody sees anything wrong with that. So, I’m just curious, as a person living with schizophrenia, what your thoughts are on the whole language discussion?

Rachel Star Withers: Here is my core issue with the wording around person first or condition first. I use the word schizophrenic a lot to refer to myself. And other people will jump to correct me and say no, no, no, you are not a schizophrenic. You are a person with schizophrenia. And I always want to respond, yeah, I know that, I’m not stupid. I know I’m not a giant ball of schizophrenia. You don’t need to correct me. And the thing is, the only people in life who have ever corrected me are people without schizophrenia. I’ve never had another person with schizophrenia correct me. They’ve never said no, we shouldn’t refer to ourselves that way or Rachel, you shouldn’t say that. That offends me as another person with schizophrenia. So to me, when someone corrects me, I find it very condescending that you feel the need to correct the way I describe myself. However, I have noticed a shift, Gabe, and probably the past five years that more and more when I’ve heard other people use the word schizophrenic who do not have it, they tend to be using it in a way that is dismissive to dismiss the opinions or issues of people with schizophrenia. I actually had this come up a few months ago where a psychiatrist met me in normal day to day life, and I was, I mentioned, oh, I have schizophrenia, and I was talking about different people with mental disorders. And they said, yes, schizophrenics are the worst to treat. And that really rubbed me the wrong way. It was I almost kind of wanted to be like, what did you just say?

Gabe Howard: Now. Now, just out of curiosity, though, that that that statement right there, schizophrenics are the worst to treat. Would you have not been insulted if they would have said that people living with schizophrenia are the worst to treat? Would that have fixed it for you and you no longer would have had the issue?

Rachel Star Withers: I honestly feel that would have softened the blow, but I still would have had the issue. Yes, but it would have softened the blow.

Gabe Howard: You do think that it would have soften the blow? I can tell you that as somebody living with bipolar disorder, I would have seen them as equals

Rachel Star Withers: Okay.

Gabe Howard: Because the context is of course condescending

Rachel Star Withers: Yes.

Gabe Howard: And I would have responded immediately to the context, And I think that might be a theme of this episode, which is we’re not saying that we need to get rid of these language initiatives. We just need to understand that they are guidelines. They’re ideas. They’re things that you can incorporate into your organizations, your conversation and your lives as you see fit.

Rachel Star Withers: A study in 2021 actually found that counselors, the ones who used the term schizophrenic, tend to have attitudes that were more authoritarian, socially restrictive, and less benevolent, versus saying person with schizophrenia. It’s also important who is saying these words that when you say them, it kind of reflects your attitude. Those in the medical community as far as those in authoritative positions, meaning psychiatrists, doctors, even counselors to someone who’s working in a hospital in any degree should be careful with certain terms that they use. Especially if you’re dealing with someone who’s in the middle of a psychotic episode. And that might be something that kind of makes them even more afraid of you, or makes them not trust you as much as if you said, you know, person with schizophrenia. A word that I always think is interesting is mad. Not like mad as in anger, but mad referring to mentally off. In the US we really don’t use it, but it is used in other countries. For instance, Canada actually has mad studies, which is studies for neurodivergent people, and a lot of people like that term, mad, and they identify with it.

Gabe Howard: It’s also important to realize that our language is constantly evolving as well. So, for example, I remember when I was a kid and I used to say, I’m bad. And this, this really bothered my father because he’s like, you’re not a bad kid, Gabe. And I was like, no, Michael Jackson.

Rachel Star Withers: Yeah.

Gabe Howard: Michael Jackson’s bad, right? I had the song in my head, I,

Rachel Star Withers: Yeah.

Gabe Howard: I meant that I was cool and awesome. So, the English language is inherently problematic whenever you’re trying to come up with guidelines, because what words means today and what they conjure image wise in the head of the listener could be different, as you said, based on where you live could also be different depending on your generation. Could also be different pertaining to your life experience. And that’s where I want to circle back, because I think there’s a real divide in how people living with mental illness see these language initiatives, and how people who are helping people live with mental illness are seeing these language initiatives.

Rachel Star Withers: And people first language. This has been used for quite a while. It’s just now picking up speed in the mental side of things. Back in 1993, the National Federation of the Blind in the US, condemned first person language. They said, no, we actually like to be referred to as blind person. In deaf culture, person first language has also long been rejected. It’s going to be still a person-to-person thing. But a lot of us find that when you talk about a different condition, whether it’s a physical, mental, we kind of find identity in it. And when you try and be too politically correct, it can get a little confusing. For different labels of varying political correctness around schizophrenia have been kind of developed. One of them, consumer of mental health services. That is so vague to me that I don’t know what that means

Gabe Howard: That could be anybody who goes to therapy.

Rachel Star Withers: Exactly.

Gabe Howard: If you go to grief counseling, if you go to a support group.

Rachel Star Withers: Yeah.

Gabe Howard: Of course, it could also mean that you live with schizophrenia, of an experienced psychosis and a everything that goes with it. So it’s incredibly vague.

Rachel Star Withers: Yeah. I feel like if I were to say, yeah, I have schizophrenia. And you responded, I too am a consumer of mental health services, I’d be like, okay, I don’t.

Gabe Howard: Yeah.

Rachel Star Withers: I’m not sure.

Gabe Howard: Did I go through grief

Rachel Star Withers: Right.

Gabe Howard: Counseling or am I also a person living with schizophrenia? Like where’s the?

Rachel Star Withers: Yeah. I’m like, I’m not sure what you’re telling me.

Gabe Howard: We haven’t made a connection.

Rachel Star Withers: Yeah. I’m a little vague on like. Yeah. he next one would be person with severe mental illness. And this goes back to wording I’m not a big fan of adding the word severe, because I feel like it really escalates things. If you’re talking to someone like, oh, I have a mental illness, okay, I have a severe mental illness, I feel like that’s like, oh crap. But I do know SMI, Severe Mental Illness. That is one of the terms we hear a lot, and we even use on the show to kind of differentiate it from not severe mental illnesses, which I’m like, that’s the problem is what’s severe and what’s not severe.

Gabe Howard: It does reek a little bit of the suffering Olympics

Rachel Star Withers: Yes.

Gabe Howard: That you and I have rejected before. But you can see, of course, where we do need to rank this. I mean, this is what triage in an emergency room is. I mean, could you imagine if we said, look, we just want to treat everybody the same? So the person having a heart attack and the person with a hangnail would both have a physical health condition, but then how would people know that the person having a heart attack needs triaged above the hangnail? With the open conversation surrounding mental health, we do want to understand the difference between situational depression and major depressive disorder. We want to understand the difference between going through a traumatic time versus serious and persistent mental illness, like schizophrenia, for example. And we do need a way to differentiate that.

Rachel Star Withers: So, this is an interesting point. I would say bipolar and schizophrenia are both considered severe mental illnesses.

Gabe Howard: Correct.

Rachel Star Withers: Your take on that was that a suffering Olympics. Like which one’s more important. Which one’s worse? My take on the term severe mental illness is danger.

Gabe Howard: Really?

Rachel Star Withers: Yes. And maybe that’s because I have schizophrenia that we’re more often associated with being dangerous, being violent, that people need to be careful. So when I hear, oh, you have a severe mental illness, I automatically think that sounds more dangerous than, let’s say, anxiety or depression. A severe mental illness is a more dangerous one.

Gabe Howard: The first thing I want to say is I agree with you. I think that the average person hearing that somebody has severe and persistent mental illness or severe mental illness would in fact think more danger. But see, I don’t think this is where a language initiative is going to help. I think we have an educational problem. The very fact that we believe people with severe mental illness are dangerous is the problem. The language isn’t going to fix that. There’s no magic words that we can use to erase the stigma and discrimination against people with schizophrenia. We’ve covered on this very podcast before how that trope got started by the FBI. It’s a great episode, and I highly recommend that people listen to it. But there was a point in America’s history where people with schizophrenia were considered docile unintelligent incapable of defending even themselves. And then suddenly this got changed to aggressive, violent, dangerous. Schizophrenia didn’t change the way that people thought about it did.

Rachel Star Withers: It all comes down to who is using it and what’s the context. I if you were to say, oh yeah, Rachel, she’s schizophrenic you need to be careful versus, oh, man, Rachel’s schizophrenic. She’s like, so cool. She does all of this stuff even though she has this mental disorder. So I use the same word. But it’s the context that changes. The first way is like, okay, you’re implying that that’s a bad thing. The second way is you’re kind of implying, hey, she has this, but it’s not that big a deal. So a lot of it really is how you’re using the word. Whether you’re a clinician, whether you’re a caregiver, whether you’re just a friend or you’re someone who has schizophrenia, that’s what’s important is how are you using it? I’ll be honest, Gabe, if I’m talking about a serious subject, for instance, about violence and people with schizophrenia, I notice I said, and people with schizophrenia. I put the person first language there. But if I’m talking about the fact that being schizophrenic is not a death sentence, you still can have an amazing life. Noticed I use schizophrenic there and it had no negative connotation.

Gabe Howard: I like the language initiatives and that it gives you options. I don’t like the language initiatives when it’s the only option.

Rachel Star Withers: And if you’re listening and you’re like well, Rachel, Gabe, that’s great but that’s a lot of thinking. Is there any hard and fast rules? Let’s give a few questionable descriptors. Ones that I would say for the most part you might want to avoid. Again, context. But still, most people don’t want to be considered crazy or

Gabe Howard: Right.

Rachel Star Withers: Described as crazy. Delusional. It’s one thing if I say I’m in a delusional state referring to an actual symptom, I’m having delusions. But if I’m just describing, oh my gosh, she’s crazy. She’s so delusional that that’s different. Demented or deranged. I’ve never been called either of those things. I feel like those are maybe older words. However, they definitely have like a danger thing to if you call someone demented, there’s an underlying violence there that that’s kind of scary. Insane, lunatic. These are words you just really shouldn’t use to describe people. There’s just better words that you could use. Stay away from those. Psychotic. That one kind of, for me, falls with delusional if I am describing a symptom. Usages of the term psycho, I think across the board. Schizo. Now, what gets weird to me, Gabe, are a lot of people find the classifications offensive, for instance, mental illness, to say, oh, you have a mental illness or mental disorder, brain disorder, brain disease, psychotic disorder. I personally don’t like the term illness. When describing, I usually say mental disorder.

Rachel Star Withers: But keep in mind, mental disorder, brain disorder, psychotic disorder, those are the actual terminology. You need to hear it. For instance, the DSM Diagnostic and Statistical Manual uses mental disorders, as does the International Classification of Diseases. The National Institute of Mental Health (NIMH) and the Mayo Clinic. Brain disorder is used by the American Psychiatric Association, Johns Hopkins Medicine, and the Substance Abuse and Mental Health Services Administration (SAMSHA). Psychotic disorder is a very important one because that’s used by the Social Security Administration. To apply for disability, yes, schizophrenia falls under a psychotic disorder. I think it’s important for doctors and other workers to use those words to someone with schizophrenia so that they know, okay, this is the classification that I fall under. It’s going to be hard for me to learn about schizophrenia if you’re constantly using different wording than what the diagnostic tools use. I want to be aware that I do have a psychotic disorder. I think that’s important for me to know. And if you’re constantly dancing around saying, well, you have a mental condition, you need to be a consumer of mental health services. I’m like, I don’t know how to look that up. I don’t know how to look up, what are the symptoms for being a consumer of mental health services? So sometimes the wording is very important. That’s how you can learn about schizophrenia and how to manage it.

Gabe Howard: One of the things that I think about is that living with serious and persistent mental illness, living with schizophrenia, is wrought with misinformation and stigma. And people hear these words and they think a negative, they’re going to think a negative, because schizophrenia is almost entirely thought of in negatives, some of it justified. If you have a disorder that is a negative, that’s an issue. You there’s nobody listening to this that thinks that their loved one doesn’t need help if they have schizophrenia. You, Rachel, live with schizophrenia and you go to the doctors, you take your medicine, you track your symptoms. You practice good support and self-care so that you can live well with schizophrenia. So I don’t want to do anything to convince people that schizophrenia isn’t extraordinarily serious, because people aren’t able to get the help they need. The mental health safety net is constantly getting cut because people don’t realize the severity of this illness. And then we get to these language initiatives where the first thing that we want to do is tone down and tap down the severity of the illness. Whenever we’re advocating in front of the government. Schizophrenia is serious and deadly, and we need the resources to save our loved ones.

Gabe Howard: But whenever we’re talking to each other, we’re like, oh, it’s not that big of a deal. We need to use softer language. We don’t anybody need to think that it’s bad. We talk about schizophrenia out of two sides of our mouth. One moment we have all these initiatives to explain to people why this is a serious issue that deserves funding, attention and resources so that people can live well and not die from schizophrenia. And then in the next breath, we’re putting out these initiatives where we’re just really tamping it down so it’s not that big of a deal, and everything is fine. Which is it? And this is a real problem in our community because depending on your intersection, you might hear that schizophrenia is deadly serious and needs a lot of resources. Or you might hear that people with schizophrenia are just like everybody else and can pick themselves up from their bootstraps and do well if they just try harder.

Rachel Star Withers: Another interesting area that we’ve hit on a little bit is when people with schizophrenia who have been diagnosed with schizophrenia, they actually like to call themselves schizophrenic. We have had other people on our show who refer to themselves as schizophrenic, including Michelle Hammer, whose website is actually Schizophrenic.NYC. For her, it’s part of her identity, and I feel that that’s the same way with me. For some people with schizophrenia, it isn’t just something we have. We’re not just a person who’s like carrying a bag of schizophrenia around. It is part of our identity because it affects everything I do. Every thought that I think is dipped in schizophrenia. I question my thoughts constantly throughout the day. For one, a lot of the times they don’t make sense. I talk out loud to help myself think straight on a task. Most people don’t do that. I am aware most people don’t talk to themselves out loud to do simple tasks, but sometimes I have to.

Rachel Star Withers: It affects everything that I do. So in a way, it it’s very much part of my core identity. It’s very much part of how I see myself in the world. Whether you agree with that or not, it doesn’t matter because it’s me. If you have someone who chooses to identify as schizophrenic, understand, that’s totally fine. And if you have someone who finds that offensive and says no, schizophrenia is a small part of my life, it’s something I manage. It’s something I take medicine for. It is not me. That’s totally fine, too. It doesn’t have to be your identity if it helps you manage your schizophrenia, to see it as an identity or not as an identity, either way is fine, because it’s you. You’re what’s important, not the schizophrenia. That’s always what I wish to tell people. And it’s long winded. So, it’s hard when someone corrects me and says, no, no, no, you’re a person with schizophrenia. For me to be like, well, let’s, let’s sit down and have this talk because I don’t think you understand what you’re saying.

Gabe Howard: There are really tipping their hand that it’s negative. Right? They’re really saying, Rachel, schizophrenia is bad, that that’s the context of them correcting you. They don’t want you to put the bad thing first. And I think that’s what people with schizophrenia hear. As a person who lives with bipolar disorder, when everybody corrects me, I think oh, you’re tipping your hand that you don’t like bipolar disorder and that you’re somewhat distrusting of people with bipolar disorder. And that’s why you’re trying to correct me. Now, that may or may not be true. They may not be doing that. I’m only saying that that is what I hear when I get corrected. It’s that only negative that we hear that that causes the issue because we don’t have this in other areas. For example, my big famous one is anybody who says I’m a diabetic never gets corrected. I’m a diabetic. Well, I’m a diabetic. Oh no, no, no, you’re a person living with diabetes because we don’t consider diabetics inherently bad or dangerous or scary, so nobody bothers to correct them. But there’s dozens of others examples in our language.

Rachel Star Withers: When people ask me what my job is, I actually say producer or creator and no one says no, Rachel, you’re not a producer. You just produce videos or you just produce content. No one corrects me and no one says, oh, producer shouldn’t be your identity because they don’t think it’s a negative thing. They think it’s okay to describe yourself that way. But yeah, if I say I’m a schizophrenic, it’s people are real quick to say, no, no, no, that’s not your identity. That’s just, you know, a small, small part of something you’re dealing with or you’re struggling with, which I don’t like. Most people don’t want to be told they’re struggling with something, especially by someone else.

Gabe Howard: Well. And there’s the rub, isn’t it? It’s people who don’t understand what you’re going through, correcting it. This is the literal equivalent of like, mansplaining, for example, right? This idea that a man is explaining a stereotypically female centric thing to women. People think, well, what right do you have as a, as a male who hasn’t experienced this or lived through it to correct my lived experience? And I use that example not to polarize the audience, but because I think people understand that. Almost every woman I have ever talked to has been lectured by a man about something that they cannot possibly, that the male cannot possibly understand, and it hits a certain way. It hits that same way for people living with schizophrenia, to hear from somebody.

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Gabe Howard: And we’re back discussing language initiatives in schizophrenia.

Rachel Star Withers: To help us with all this wording. NAMI, the National Alliance on Mental Illness recently launched the Schizophrenia and Psychosis Lexicon Guide, a resource crafted to refine the language around mental health through improved language awareness.

Gabe Howard: Now, NAMI’s Lexicon Guide is designed to support individuals, health care providers and the media in understanding and using language that positively shapes perceptions and outcomes for those experiencing schizophrenia and psychosis. They believe that by focusing on language that is both accurate and empathetic, that their guide will enhance therapeutic alliances and reduce stigma, and they believe strongly that this will resonate with you. We’re very thankful for NAMI for being here.

Rachel Star Withers: I’m excited to be talking with Dr. Ken Duckworth, who is a psychiatrist and NAMI’s chief medical officer. Thank you so much for joining us.

Dr. Ken Duckworth: Thank you, Rachel, and I appreciate you having me.

Rachel Star Withers: Before we get started, what is NAMI?

Dr. Ken Duckworth: NAMI is known as the National Alliance on Mental Illness. It’s the largest mental health grassroots organization of people who live with mental health conditions, like schizophrenia and the people who love them. So family members, siblings, friends it’s a remarkable group. It exists all across America. So wherever you are, there are free support groups, free education programs. And if you want to jump in and fight for better services because the service system is a mess, NAMI is a great place to start.

Rachel Star Withers: What attracted you to working in the mental health field?

Dr. Ken Duckworth: My dad was very loving and had bipolar disorder. And, you know, he was loving and fun and creative. And he would periodically become manic, psychotic, have a total lack of awareness of what was going on with him. Then he would disappear to a hospital for months at a time, and then we would never talk about it. So this is how you take a kid who was not a good STEM student, was not a calculus whiz, and you get him to go to medical school because I wanted to help him and make sense of it.

Rachel Star Withers: Recently, NAMI has put out the Schizophrenia and Psychosis Lexicon Guide. Talk to us about what is this?

Dr. Ken Duckworth: One of our partners came to us and said, how should we talk about schizophrenia? How should we talk about psychosis? We said, good question. So, what we did is we interviewed a series of people who live with schizophrenia. Kind of the core of NAMI’s mission is talking to real people about their experience. The idea that an individual is actually an expert. All right. So I have an MD. I did all that extra stuff. I learned some stuff there. But there’s other stuff that’s learned by people who live with things. And so the Lexicon Guide was to ask people how they think about talking about schizophrenia, psychosis, what ways might be helpful in addition to people with lived experience, it’s also conversations with subject matter experts. This is to promote a conversation between clinicians and individuals they’re working with. This is not a directive. Right? But to have the conversation. So a good example would be people don’t like the word noncompliance. If you’re not compliant, right? You’re thought to be misbehaving in some way. Non-adherence means you’re not sticking to the regimen, and that has less judgment attached to it. So it could be, for example, because you have side effects. It could be because you don’t notice that it’s helpful in any way, shape or form. Right. So then you aren’t adherent. You aren’t sticking to a regimen prescribed by someone. It’s not that you’re not a compliant person because you are showing up.

Dr. Ken Duckworth: You are doing your best. You’ve just concluded that there’s a problem to be resolved. So that’s a good example of how people suggest it, that people have that conversation. But I really encourage professionals and practitioners to talk to their patients, to talk to their clients. How do you want to talk about this? I was trained in something that I thought was helpful, to use the patient’s words. And that’s something that we also heard from people. If I say the word voices, you say the word voices. If I say hallucinations, that’s something that I feel good about. Let’s talk about hallucinations, right? If I think I’m having paranoid thoughts, I say, well, let’s tell me a little bit about how your paranoia experience is going today. So, I think the idea of the guide is we should be able to talk about it. And, Rachel, this gets back to my origin story. My family could never talk about it.

Dr. Ken Duckworth: So my dad, when he was psychotic, had no awareness of his illness. He would literally communicate with the microwave. And then after he was treated, he would get his awareness back and he would use the same microwave to heat up his coffee before work. What I lived with way back in the day in the 70s, you know is something the guide is trying to promote, have a conversation about these things, ask people how they like to talk about it, how they think about it. So, this isn’t a directive. You’re a bad practitioner if you don’t use A, B and C language. It’s really a conversation, but it has a couple starting points. There are some words that people tend not to like. Don’t call people a schizophrenic would be a good example, right? People don’t like being defined by this particular vulnerability. And I feel like promoting conversation with some guidance and some input from people that we interviewed is a good start. But it’s really between you and your patient and having the permission and courage to say, how do you want to talk about this process that you’re living with, what’s the best language for you? And the person might feel relieved that we can have that conversation, because they may be thinking about it in a way that might be different than your training.

Rachel Star Withers: Who was the Lexicon Guide intended for?

Dr. Ken Duckworth: Well, the Lexicon Guide kind of conceptualized for caregivers writ large. Health care providers, family members. And it basically is an invitation to have that conversation. How do you want to talk about this? Which again, represents radical departures for many of us, because people are afraid of these conditions, they don’t want to talk about them and know how to talk about them. Lexicon Guide just provides a few Guideposts. The goal is to facilitate conversation between family members, health care providers, allied supports that are in the world, and basically make sure that you’re having conversations with people in a way that works for them. Which is going to be unique to them.

Rachel Star Withers: Why is this lexicon so important? Why do we even need to have a guide on how to talk about schizophrenia and psychosis?

Dr. Ken Duckworth: Those are still a lot of secrecy, isolation and shame. Prejudice and discrimination about schizophrenia. And so the idea of talking about it using preferred language that the people want to talk about it kind of opening the windows and allowing air to flow through the conversation. This is what we’re looking for because people aren’t that shy talking about their cancer diagnosis. People share their hemoglobin A1 C score. Hey, I’m walking more. I’ve got my score down, you know. We’re not there with the major mental health conditions, and this is part of promoting that conversation.

Rachel Star Withers: I like that. And very true. I do hear people I work out at the gym a lot. So people love to tell you when they got their blood pressure down or love it.

Dr. Ken Duckworth: Yeah, look at me

Rachel Star Withers: I definitely don’t walk in and say, hey, I haven’t had any suicide attempts lately.

Dr. Ken Duckworth: Exactly.

Rachel Star Withers: That’s not something. Even though that’s one of the main reasons I go to the gym is to help with my mental health.

Dr. Ken Duckworth: Even though you run this amazing podcast. There isn’t really a social space for your success.

Rachel Star Withers: One question that I had when I was going through the Lexicon Guide is that it has a part where it says words to avoid using, and brain disorder was one of them, which is kind of confusing because I feel like brain disorder is what the American Psychiatric Association uses.

Dr. Ken Duckworth: Yeah, I thought that was an interesting little corner of it, too. People told us they didn’t like the term brain disorder. And so that was just, you know, this is just the part of doing kind of what is equivalently qualitative research, interview a bunch of people and listen to them. People would say, the idea that my brain is disturbed or broken is really troubling to me. Like, the idea that your brain was problematic. So I think we’re all trying to make sense of these conditions, which we don’t know enough about. We do know that listening respectfully to people and collaborating with them and helping them do things like get a job, become a peer, maybe try a different medicine or approach, you know, really might be valuable. If a person says, you know, I think of this as a brain disorder, right? This is the best way I’ve come to understand it. Then I would probably use that term with them. But the general stroke was the general theme was schizophrenic brain disorder psycho. These are things people genuinely did not like for the most part, but this is a very individual experience. It’s a very individual process. How do you understand what you’re going through? Critical question.

Rachel Star Withers: Yeah, I, I’ve mentioned it on the show many times. I do refer to myself as schizophrenic.

Dr. Ken Duckworth: Mm-hmm.

Rachel Star Withers: And back when I was first diagnosed, I was diagnosed paranoid schizophrenic. That’s literally what it says

Dr. Ken Duckworth: Mm-hmm.

Rachel Star Withers: On some of my papers from, you know, almost 20 years ago.

Dr. Ken Duckworth: Back in the day. How did you how did you become comfortable with that terminology? What was that process like for you?

Rachel Star Withers: For me. I’ve just been through so much. I’ve been through all the antipsychotics.

Dr. Ken Duckworth: Yeah.

Rachel Star Withers: I’ve had electroconvulsive therapy, lots of other types of therapy, and it is such a big part of my life. It isn’t when to me, when someone says person with schizophrenia, it sounds like that’s like a bag you’re carrying along with you

Dr. Ken Duckworth: Right.

Rachel Star Withers: Or like another person, like schizophrenia is like your friend.

Dr. Ken Duckworth: Like it’s a, it’s a carry on. Right?

Rachel Star Withers: Yeah. I don’t mind being described as a schizophrenic because I hallucinate almost 90% of the time. I’m constantly having issues like it really does saturate everything that I do.

Dr. Ken Duckworth: Yes.

Rachel Star Withers: I went to the salon today, and I had a very hard time in the salon because they make you sit in front of a mirror. I can’t look in mirrors. I start to hallucinate when I look in mirrors. So I’m having to, like, sit awkwardly the entire time. I didn’t tell the salon lady, oh, I’m a schizophrenic. I just said, hey. And ironically, I said brain disorder. I said, I have a brain disorder,

Dr. Ken Duckworth: Right.

Rachel Star Withers: So mirrors kind of bother me. But that also is I’m used to those words, so they don’t bother me.

Dr. Ken Duckworth: Yeah. This is the beauty of the Lexicon Guide because what works for you, Rachel, might not work for the next person.

Rachel Star Withers: Talk to us about this book that you were a part of and you wrote called You Are Not Alone.

Dr. Ken Duckworth: I always felt NAMI deserved a book. The radical idea of the book was to ask real people who used their names and say where they’re from to share what they have learned. And I was so impressed at how many people I literally had to stop at 130 people because I was running out of time. All these people that I’ve met with and connected to. They are experts, too. If you’ve lived with schizophrenia for 20 years, you’ve learned something. If you’ve loved somebody with bipolar disorder, undoubtedly you have learned a few things about communication, pattern recognition. This is the gap that I found in the literature. I happen to be a psychiatrist, so I trained at fancy places, and I met with a lot of, you know, amazing people discussing randomized controlled trials.

Dr. Ken Duckworth: I participated in clozapine research. And, you know, it’s all been great. Nobody ever talked about how becoming a peer can be transformational for an identity. I was never taught about how a dog could help regulate a sleep schedule. I was just all these things were not involved in my training. And this is kind of folksy wisdom from real people that genuinely helped them. And I thought, well, this is the gap that I was interested in developing. I also went to the smartest researchers. The idea that you could have a book where real people are experts and then what people think of as experts is all in one place. And so it was a fun project, it’s USA Today best seller. It’s helped a lot of people.

Rachel Star Withers: Thank you so much. How can our listeners find your book, You Are Not Alone?

Dr. Ken Duckworth: So my book is on Amazon. You Are Not Alone: The NAMI Guide to Navigating Mental Health. It’s on Amazon, it’s at Barnes & Noble. It might be at your bookstore, and there’s an audiobook, there’s a Kindle. You know, it’s out.

Rachel Star Withers: How can our listeners learn more about NAMI and find their own local chapter?

Dr. Ken Duckworth: NAMI is everywhere. So whether you’re in Fresno, California or Kansas City, Missouri, or Austin, Texas, or little old Cape Cod, Massachusetts, where I hail from, there is a NAMI group, and what you will find is a group of loving, devoted people. It’s kind of the most amazing mental health volunteer army. We provide support for peers. Peer classes. Peer-to-Peer is a formal education class. We provide support for families, education for families, Family-to-Family has been given to way more than a million people across the country. And NAMI.org.

Rachel Star Withers: And that’s N A M I, NAMI.org.

Dr. Ken Duckworth: NAMI.org.

Rachel Star Withers: And we have found lots of great schizophrenia info on there specifically, and including the Schizophrenia and Psychosis Lexicon Guide that everyone can go check out. Thank you so much for joining us today, Dr. Duckworth, and all of your amazing work with NAMI.

Dr. Ken Duckworth: Rachel, thanks for everything you’re doing and it was a joy to connect with you.

Gabe Howard: Rachel, as always, you did a great job. I’m just curious, how did you personally, as someone living with schizophrenia, feel about the word choices from the lexicon? Did it resonate with you? How did you feel about Dr. Duckworth’s examples, etc.?

Rachel Star Withers: I do not agree with parts of the lexicon. Some of it I’m like yes, that exactly correct. But, I don’t agree with all of it. But it’s a guide and not all of it is directed towards me. I think especially the guide would be great if every newscaster had this for when something happens. If they knew to say, oh, I shouldn’t say schizophrenic when I’m describing, you know, a person that may or may not have even been diagnosed. But when I’m describing an event or a person, the correct wording is person with schizophrenia. I think the guide can be a wonderful thing for different people in different situations. One of the bits of advice that Dr. Duckworth gave, and I think is wonderful, is that you should say back the words that a patient uses. So for instance, if I say I’ve been hearing these voices, then you respond back that, oh, you’re hearing voices, as opposed to, oh, you’re having an audio hallucination, you know, using the words that the person uses. At the same time, I do think it’s important to let that person know, okay, so you’re having an audio hallucination. You’re having a command hallucination. Let them know that, hey, this this is a real thing. You are not alone in this. I think when I first got my diagnosis again many years ago of paranoid schizophrenia, for me it was a weight off my shoulders. It’s like, okay, I’m not this freak. I’m not alone in this. I have something that is very well documented. Other people have this. There are whole books written about schizophrenia, and I’m not alone. For me, knowing that there was a technical term made me feel better. I wasn’t alone in this. So I do think it’s important both sides to use wording that the person or patient is comfortable with, but also let them know, hey, this is the actual term.

Gabe Howard: I think there’s a real need for people to understand that this isn’t the way that we talk in the beginning. Right. Nobody lies awake at night and wondering if they’re having a mental health crisis. They lie awake at night and wondering if they’re going crazy. They wonder if they’re going insane. They wonder if they’re a whack job, all of these offensive things. But this is our internal dialog, especially if we’re sick. So I do think that we need to have some understanding for people before they’re diagnosed, before they understand what’s going on. They’re not using any of this conscientious language. They’re thinking, quite frankly, that they’re going insane. So we don’t want to remove these words entirely, because then somebody might not recognize that we’re the help. They might think to themselves, well, I’m going insane. And they’re only helping consumers of therapeutic services. And then they won’t know that we’re the solution. So this is a very complicated thing. Nobody is saying that these initiatives are bad. I believe Dr. Duckworth said it best when he said that they’re guidelines and that guidelines are good, because then we can choose which words we want to use. We can choose the time and the place, and we can make sure that they fit in the context that we are trying to put forward in the world. And in that way, I think these initiatives are amazing.

Rachel Star Withers: As the person who has schizophrenia or another serious mental disorder, it is 100% up to you how you want to refer to it. If you feel comfortable to speak up and tell people, then do it. But you don’t have to. For me. I don’t mind teaching people. I don’t mind talking about my schizophrenia openly. I also don’t mind correcting people because I’m so open about my schizophrenia. It has allowed me to meet so many other people who have schizophrenia and people who are connected to mental disorders. And it’s cool because right away we have this immediate intimate bond. But it is intimate because whether you say person with schizophrenia, schizophrenic, patient with a serious mental illness, you are referring to someone who has problems interpreting reality, who may struggle with confusing, disturbing, and even horrifying hallucinations and delusions, who may feel or have felt alone, scared. Confused. Hopeless. No matter what wording you use. This is what those words carry. It’s not so much about the person first or the condition first, but the experience of living with schizophrenia. Thank you so much for listening to this episode of Inside Schizophrenia. Please like, share, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia, a Healthline Media podcast.

Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at psychcentral.com/is or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.