Inside Schizophrenia Podcast: Understanding Anosognosia (Lack of Awareness)

Dr. Xavier Amador, Founder and President of the LEAP Institute, is a world-renowned clinical psychologist, forensic expert, and author of 9 books, including the bestseller “I Am Not Sick I Don’t Need Help!” His extensive work, books, and clinical research in schizophrenia, bipolar disorder, and other mental illnesses have been translated into 30 languages. Additionally, he has authored over 130 peer-reviewed scientific papers and has contributed his expertise to over 80 death penalty cases. He is also a family caregiver of two close relatives with schizophrenia and another with bipolar disorder.

Dr. Amador has trained tens of thousands of professionals and families on LEAP® (Listen-Empathize-Agree-Partner), a communication approach that creates trusting relationships with people who have serious mental illness and anosognosia.

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.

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.

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 your host, Rachel Star Withers here with my amazing co-host, as always, Gabe Howard. If you’ve ever heard the word anosognosia or anosognosia, it means that a person is unaware that they have a mental health condition or that they can’t perceive their condition accurately. This is a common symptom of schizophrenia, and it is believed that around 50 to 98% of people with schizophrenia have some form of anosognosia. Joining us today is Dr. Xavier Amador, who is the founder and president of the LEAP Institute. He’s a world-renowned clinical psychologist, forensic expert and author. He has spent much of his medical career helping people with anosognosia.

Gabe Howard: I want to start out with the 50 to 98% number. One, that’s a huge range. It covers half to literally almost everybody. What’s the criteria for somebody to have anosognosia.

Rachel Star Withers: It is a symptom of something else. Now I too, when I first saw that range 50 to 98% is a is a very large range there. And I personally do not believe the 98%. What happens though is that sometimes trying to define what anosognosia is versus denial can be difficult. When I get letters from caregivers, family, so many of them bring up anosognosia, and I don’t think that they fully understand the difference between denial or just not wanting to take medication and actually having no concept that you have a problem. So hopefully, today we’re going to shed light on that. And it will help those with schizophrenia and the people around them understand this symptom more.

Gabe Howard: Before we delve into this, I want to state unequivocally that anosognosia is real. It is a 100% real symptom of schizophrenia. Lacking insight is a hallmark of schizophrenia that many people with schizophrenia will go through. But it’s not without its detractors and without its controversy. Unfortunately, many times a patient living with schizophrenia will not want to take their medication. They will disagree with medical treatments. They’ll disagree with the advice of their caregivers, their loved ones, their family. And instead of talking that out or discussing it or looking into their concerns, it’ll just be waved away that they lack insight they don’t understand, and they’re unaware of what’s going on. That is when this becomes very problematic, because if you’re not working with people with schizophrenia to make sure they’re involved in their own care, if you’re instead just declaring them to be essentially incompetent, then you run into problems.

Rachel Star Withers: And this is not a new thing. The actual term anosognosia was coined in 1914 and it translates to without disease knowledge. It has been related to schizophrenia ever since they started diagnosing people with schizophrenia. A basic definition, would be a person who lacks awareness of having an illness. They don’t recognize the signs and symptoms of the illness. They do not attribute consequences and deficits to the illness, nor do they understand that they need treatment for the illness. What can be a little confusing is that this is not an all or nothing situation. I very well could understand that I need some sort of help, but at the same time not think that schizophrenia is the reason. Anosognosia is not just seen in schizophrenia, it is actually seen in other things like dementia, bipolar, major depressive disorder and hemiplegia, which is paralysis of one side of the body. When you look at it in context to a physical illness, it starts to make a lot more sense. In hemiplegia, what will happen is a person becomes paralyzed on one side or part of their body, but they don’t realize this.

Rachel Star Withers: And they will argue with you that no, you are incorrect. This is where we need to look at with schizophrenia. This isn’t a denial thing, it’s just a flat out. I have no idea what you’re talking about. I am, I’m fine. So, if I was to suddenly tell you, Gabe, we need to get treatment because your skin is green. It’s just so green. And I don’t think. Think you realize how bad it’s gotten. And you’re like, Rachel, I have no clue what you’re saying. Like, my skin’s not green. You’re being ridiculous now. Me trying to convince you that your skin is green is probably going to be pretty difficult. If I try and force you to get treatment for your green skin, you’re going to probably resist that, right?

Gabe Howard: Of course I am looking at my skin. It is not green and therefore I disagree with you. I do not have green skin.

Rachel Star Withers: That is a way to think about anosognosia, is the person has absolutely no concept that they have this problem.

Gabe Howard: It’s really important to keep in mind that a lot of the research that we have on Anosognosia is across all different types of minds, ages and disease states. Obviously when we use it for schizophrenia, what we’re really interested in is the lack of insight for somebody with schizophrenia. When do they regain control? Can they regain control? How is the anosognosia symptom playing out in the schizophrenic mind only? Since much of the research is done across all different types of disease states, brains, people, etc. It isn’t a one size fits all.

Rachel Star Withers: To make things more difficult is that in schizophrenia, anosognosia is also seen to fluctuate, meaning that you could be completely unaware. Then as you’re on medication, things change. You become aware. And then, let’s say, I go into a psychotic episode and I now lose that again. People with schizophrenia have to be aware that this is a possibility, that in the future, things could change with your symptoms. And this is just like any hallucination, delusion, depression, any of the other symptoms that are related to schizophrenia, they can get worse and they can get better over time. They fluctuate.

Gabe Howard: It’s important to remind our audience that there is no definitive test for schizophrenia, and there is no definitive test for the symptom of lack of insight or anosognosia.

Rachel Star Withers: Typically, health professionals will diagnose the symptom of anosognosia when they’re talking to a patient. Sometimes they’ll use an actual scale, and it’s the scale to assess unawareness of a mental disorder. Does the person realize that they have a condition? Do they notice the symptoms of their condition? And do they know that there are consequences to this condition? Does the person understand that they need treatment? Do they believe that their symptoms result from a mental health condition. The doctor would sit down with the patient and ask them a bunch of questions and figure out what understanding do they have. So if you were to sit down with me, Gabe, and say, Rachel, do you recognize that you have a condition? Yes, I do. I was diagnosed many years ago with paranoid schizophrenia. Do you recognize your symptoms? Absolutely. I hallucinate a lot. I have delusions. Sometimes I don’t recognize the delusions right away. It might take me a little while, because I’m. I can go psychotic and don’t understand. Rachel, do you understand that you need treatment for this? Yes, I do. I understand that the consequences are that I can’t live alone. I get really weird. And I do need treatment, and I need a very strong support system. Much stronger than, quote, unquote, a normal person.

Rachel Star Withers: Do I believe that the symptoms result from this mental health condition? Absolutely. I absolutely believe that my hallucinations stemmed from my schizophrenia. I don’t do drugs. I don’t drink alcohol. There’s really no other explanation for my hallucinations. On the scale of awareness, I don’t think I would come up for having anosognosia at the moment. But things could change. I could go psychotic. And you re-interview me in a few months and say, Rachel, do you realize you have this condition? And I could say, yeah, I have schizophrenia, but that is not causing the CIA to come after me. And you’re trying to talk to me. It’s like, would you realize you need treatment for the CIA following you? Like, what are you going to treat me for? No, it’s the CIA’s problem. We have to take down the master board. Do you kind of see the difference in the talking there, where I’ve now become unaware that a part of my schizophrenia needs treatment.

Gabe Howard: Anosognosia and lack of insight gets discussed much too plainly and much too simply. People believe, oh, people with schizophrenia, they lack insight. And that’s why we need to do the following things for them. I disagree with that statement. I don’t think that there’s enough safeguards in place. I want to be very clear. Lack of insight, anosognosia. Absolutely real, but it is very easy for it to be abused. It is very easy for it to be weaponized, and it’s very easily mistaken. And that’s why robust safeguards need to be put in place. Due diligence, investigation, observation, declaring that somebody completely lacks insight of their own condition, their lives, their wants and their needs is very serious. And it’s often discussed in advocacy circles as just expected for people with schizophrenia, as we saw from the stat at the beginning, 50 to 98% suffer from anosognosia. Those are those are extraordinarily high numbers.

Rachel Star Withers: We live today in a society that loves to push neurodivergence and loves to push, you know, being yourself. And the other thing that frightens me is that so many people you’re like, hey, they can live their lifestyle, they can do whatever they want. If you want to be a hippie, if you want to live on a commune, hey, that’s your stuff. But then when it comes to people with schizophrenia, when they don’t fit into the mold, everything falls apart. I’ve known people who have chosen to live a very nomadic life that you might describe by some as homeless. I might see someone doing a van life and think, oh, that’s cool. Those little hippie people just want to live in a van. And yet, when you see someone with schizophrenia choosing to live in a van, it takes on a whole new meaning. People with schizophrenia can sometimes just make bad decisions or decisions that don’t fit the norm. And their family members look at that and think, okay, this is the schizophrenia. This person is choosing not to work a full-time job. They just lump all of this as they need treatment. I don’t know where the line is on that, Gabe. Because it’s easy to look at quote unquote normal people. And if they choose to live a certain way, you’re like, oh, that’s that’s fine, that’s nice, that’s quirky. But if they have schizophrenia. Whoa whoa whoa whoa whoa whoa whoa whoa. They shouldn’t be allowed to live that way. There’s something wrong with them if they choose that.

Gabe Howard: One of the things that’s worth considering is the complex relationship between parents and children, not the complex relationship between parents and their schizophrenic children, just the complex relationship between parents and children. There’s all kinds of examples of people who want to pursue a career in something that the parents find objectionable. There’s people who make choices about their lives that their parents don’t agree with all the time. Hard. Stop. The minute you put schizophrenia on this, it really ramps it up, because now the parents have an ability to enter into the conversation in a legal and meaningful and medical way.

Rachel Star Withers: Very true. All of this combined, it’s going to come down to, well, okay, what do we do now? If they have anosognosia. What do we do now if they’re just in denial? What do we do now? If the person is having a psychotic episode, what do we do now? Thankfully, the answer is the same for all of them. You need to focus on the symptoms. Focus on what the person can recognize. So, let’s say I don’t believe I have schizophrenia. Gabe, I have no idea what you’re talking about. This is just wild. And you’re like, Rachel, you know, you dropped out of college. You you’ve lost your job. Let’s focus on that. Why did that happen? And you don’t even have to say, remember, you have schizophrenia. Rachel. You’ve been diagnosed. Don’t. Focus on the symptoms. Rachel, we need to get you to have a job. What has to change for you to be able to hold down a job? What has to change for you to be able to go back to school? If we’re talking about the hallucinations, do I realize they are hallucination or not? If I do, then let’s talk. Rachel, what do you think is causing these hallucinations? Are you taking drugs? Are you are you on any illegal substances? Finding out where that person is but not trying to push the diagnosis on them. Just step back a little and focus on how can I help this person with a specific issue, and that could lead them into getting treatment for schizophrenia.

Rachel Star Withers: It might not start with schizophrenia. It could just be as simple as, okay, let’s go to the therapist and talk. We need to figure out what’s going on here because you’ve shut all your friends off. You have quit your job. You have quit school. We need to focus on how to change that. One way of treatment is called MET, Motivational Enhancement therapy. And that basically consists of helping someone look at their symptoms, look at their behaviors and their relationships objectively. This could lead to a realization that point to the existence of a condition, or it can also just help to focus on the symptoms. Another very popular method is called the LEAP method, which is done by listening to the person, empathizing with the person, agreeing with the person, and partnering with the person. You know, it’s just like, well, yeah, that sounds like being a friend. Like, that’s just like the basics to being a friend. And that’s kind of what I thought until I got to speak to Dr. Xavier Amador, who developed the LEAP method. And honestly, he blew my mind because it is so much deeper than that. And his method is built around relationships and creating an open dialog.

Gabe Howard: Well, I’m excited to hear this interview. Let’s go ahead and play it right now.

Rachel Star Withers: I am so excited to be speaking today with Dr. Xavier Amador, who is one of the experts in anosognosia. Thank you so much for joining us, sir.

Dr. Xavier Amador: Great to be here.

Rachel Star Withers: What is your definition of anosognosia in relation to schizophrenia?

Dr. Xavier Amador: It’s essentially a neurocognitive deficit. It’s another symptom of the illness, like a hallucination or a delusion that leaves the person blind to what other people see and say about them, that they have an illness. So in short, it’s cognitive blindness to having an illness. Unawareness.

Rachel Star Withers: What do you think the percentage is for people who have schizophrenia actually having the symptom of anosognosia

Dr. Xavier Amador: Roughly about 50%. Research we did back in 1991. We found, my colleagues and I at Columbia University, found just short of 60%.

Rachel Star Withers: You are very well known in the medical community and you run the LEAP Institute. What about this part of schizophrenia? What about anosognosia that grabbed your attention?

Dr. Xavier Amador: Two things happened. One is when I was 22, I was working as a psychiatric nurse’s aide on an inpatient unit, and I’d meet these people who had schizophrenia and other psychotic illnesses. The doctors would prescribe medication. And from my perspective, they got better, at least to the extent that they stopped hallucinating, being delusional. Discharged the person and three months later they’d be back. And what happened was over and over and over again, the person said, these people would say to me, well, I don’t need the medication. There’s nothing wrong with me. I’m not sick. But the other thing that really propelled me into doing research in this area was my brother, Henry. Henry developed schizophrenia in his mid 20s, an older brother. We were so close. We trusted each other. We confided in each other. We laughed together. He taught me how to ride a bicycle.

Dr. Xavier Amador: When he got schizophrenia and I realized he was ill, the whole family thought he had an illness. You know, he fought back. We thought he was being difficult and defensive and, you know, the difficult person or the difficult patient that my colleagues sometimes refer to. And he wasn’t. He was, he was following his heart. He was following his values. He knew, from his perspective, he knew he didn’t have schizophrenia. So, it started years of us, arguing and fighting with him, trying to convince him he was ill, trying to convince him he needed medication. I would see him going to the hospital from my perspective, getting better, leaving the hospital, and literally finding his medication in the garbage can.

Rachel Star Withers: As someone with schizophrenia, what’s hard for me to wrap my brain around is when we’re talking about anosognosia, is it all or nothing? So, for instance, can I know that I have schizophrenia but feel that, hey, I’m managing fine, I don’t need medications? Or does it have to be, no, I do not have schizophrenia. You are all incorrect? Like, where is the line of when does it become a symptom and when is it just, no, I have schizophrenia, but I think I’m fine. I’m managing well.

Dr. Xavier Amador: What a great question. This has actually been researched extensively. What you see are pockets of awareness and pockets of unawareness. So some people have real severe unawareness. They’re unaware of even the signs and symptoms. Let’s say they have disorganized speech. They’re tangential, they’re circumstantial. They’re, you know, thought disordered. And you can ask that person and the research that we did, do you have trouble communicating or do people have trouble understanding you? And about 54% of people in our studies who have thought disorder don’t even know they have that symptom. It’s not an all or none phenomenon. The other thing is, like all kinds of symptoms of any medical condition, the symptoms can wax and wane. So some days it’s worse than others. Generally, when we say someone has anosognosia, it tends to be a pretty consistent unawareness of the of the diagnosis, unawareness of signs and symptoms.

Rachel Star Withers: Something that a lot of patients with schizophrenia worry about is patient rights that when you’re talking about

Dr. Xavier Amador: Yeah.

Rachel Star Withers: Anosognosia, where does the, where do you find the line for? Is it my right to just refuse treatment? Where is the line of, no, we need to take over because you are in denial versus I just don’t want medical attention?

Dr. Xavier Amador: Right. Well, let me wordsmith for a moment. It’s not denial. This is a deficit. This is an inability to understand, to see, to comprehend that you have an illness. So it’s not denial. Denial means that you know something deep down inside and you’re denying it. With anosognosia, you don’t have that knowledge buried deep down inside.

Sponsor Break

Rachel Star Withers: And we’re back discussing anosognosia, a lack of insight into schizophrenia.

Dr. Xavier Amador: Boy, the individual rights thing is so important. And when I work with people with schizophrenia, I’m profoundly aware that they have the right to make choices. That said, when I see the illness leading them to homelessness or into the criminal justice system, I think we as a society have a responsibility ethically to help that person. So if somebody with Alzheimer’s wandered off into the street and was missing, what do we do? We do a Silver Alert. We get that people, we gather them up, we get them help. We keep them safe. So with schizophrenia, it’s tricky because somebody with schizophrenia, people can be very articulate and, when they’re actively ill and make a lot of sense.

Rachel Star Withers: So you came up with the LEAP Method and the LEAP Institute. Can

Dr. Xavier Amador: Mm-hmm.

Rachel Star Withers: You talk to us about that?

Dr. Xavier Amador: LEAP is, it’s counterintuitive in some ways because we’re trying to help people. So we want to educate them. We want to teach them about the disorder that we believe they have. It’s the worst possible thing you can do with somebody with anosognosia. If I’m telling somebody who’s certain they don’t have an illness, hey, you’ve got an illness, you need treatment. I’ve lost them. I’ve immediately created an adversary, if not an enemy. And that was my experience with my brother Henry, who had schizophrenia. That was my experience, and it continues to be my experience as a clinician, as a clinical psychologist, I can’t tell the person that they’re ill if they’re certain they’re not. What I can do is talk to them about their problems. So, LEAP stands for Listen, Empathize, Agree and Partner. So, you’re reflectively listening. That’s the L. You’re actively listening. You’re absorbing the person’s experience. So, if the person tells me my problem is my parents keep calling the police on me and trying to throw me in the hospital. And my real issue is the CIA, and nobody believes me. Well, how do I listen to that? With respect and without judgment, I have to be active. I have to talk.

Dr. Xavier Amador: So what you’re telling me, if this person said this to me, is the CIA is your problem and your parents are your problem because they think you’re ill and you know you’re not? Did I get that right? And then I would empathize, the E in LEAP. You know, if I were you, I’d. I’d be frustrated too. I’d be angry too, or I’d be scared. Whatever feelings they tell me about. And then you go to agree. What can we agree on? What, what goals might we be able to partner on? And usually one of the first goals is get my parents to stop calling the police. Staying out of the hospital. Getting a job. Having love in my life. So, we can agree on all those things, and that’s what we can partner on. And yes, if I think the person needs treatment, I am going to try to link treatment to their goals. I am going to try to do that. So the LEAP method is first and foremost about meeting the person where they’re at, respecting and not judging their goals, their experience, their beliefs. And from that, treatment often is possible.

Rachel Star Withers: I love it, and I love the way you talk about people with schizophrenia and the way you talk about your work with the LEAP Center, because I definitely feel that you respect those you’re talking to, whether it’s caregivers and you’re trying to explain the relationship aspect or whether you’re talking to someone with schizophrenia.

Dr. Xavier Amador: Thank you. Thank you.

Rachel Star Withers: So many caregivers, family members reach out to me and they tend to reach out to me at the point of crisis. And the

Dr. Xavier Amador: All right

Rachel Star Withers: Person with schizophrenia and schizophrenia refuses to get help, and they’re usually in the middle of a psychotic episode. What advice do you have for those caregivers? Where pretty much the whole world is coming down around them?

Dr. Xavier Amador: Shut up and listen. That’s what I had to do. I had to learn to shut up and listen. So rather than telling your loved one what their problem is, you’ve already told them that. So, now you can pivot to this counterintuitive LEAP approach. It’s not intuitive and say, you know what? Tell me what’s going on. I told you that you were you were sick. I told you were ill. But you know, I wasn’t listening. And I’m sorry. That’s another one of the LEAP tools is you apologize for things that were hurtful to the person. So I’m really sorry. I’ve been coming on so strong. Tell me what your problem is. And if they say you know, it’s the alien transmitter in my brain, it’s the FBI. It’s. I’ve developed a formula that’s going to cure all illnesses, and Putin is trying to get it from me. I mean, these are a number of delusions I’ve heard just this week. I want to listen to that. I want to respect it because that’s that person’s reality. That’s their truth. How many times have you told your son or daughter that they have a mental illness? Oh yeah.

Dr. Xavier Amador: For years. Has it worked? No. So who’s the insane one? Einstein’s definition of insanity. Doing the same thing over and over and over again, expecting a different result. So the first thing I help them to do is that shut up part. You know, I never say shut up to the families I’m working with, but I said it to myself with my brother. Stop telling them they’re sick. Stop telling them they need treatment. You know, I told my brother and how I helped him choose treatment. I called him up, and I said, Henry, I’m sorry for all the times I told you you had schizophrenia. I promise I will never say it again because I know it hurt you. I kept that promise. And then I apologized. Henry, I’m sorry for all the times I told you you needed to be on antipsychotic medication. I will never do it again. And I kept that promise. Within six months of that change in me and how I was communicating with him, he accepted a long-acting injectable medication, stayed on it for the rest of his life. Almost 20 years. He passed away, unfortunately, young, in his 50s.

Rachel Star Withers: How is it possible for someone to even accept treatment if they don’t even believe that they have schizophrenia?

Dr. Xavier Amador: Relationships. The research is abundantly clear in this area as well. We have a double blind, placebo-controlled study of LEAP. And where we found that the relationship predicts who will accept treatment. My brother, 18 years in treatment. But, he was very proud of his little brother, as he always called me. And I said, Henry, people ask me all the time when I do presentations on this book, does your brother believe he has schizophrenia? I haven’t asked you in years. What do you think? And he laughed. I mean, he really laughed. He said, no, I don’t have schizophrenia. Then I said, well, then I have to ask you, why are you in treatment? Why are you taking these injections of antipsychotic medication? And you know what he said? That I do it for you and for Mom and Pops. So what was his answer? He did it for relationships. Relationships where he felt respected. He felt trust. He felt loved. And I tell doctors this all the time. In other mental health professionals, you can love your patients. You can be friends with them. Friends with boundaries. But friends. Befriend your patient. Your relationship matters.

Dr. Xavier Amador: What’s your goal? What’s your goal? Influencing behavior. Not changing minds. Not changing ideas. Not changing your beliefs. So what’s the behavior you want to influence? Well, behaviors that you believe as a family member are healthy behaviors. So maybe accepting treatment, accepting housing if the person cannot work, agreeing to apply for disability.

Rachel Star Withers: I’m here in South Carolina, the Bible Belt. And something that comes up a lot is in churches, people refusing medical help and choosing to let God heal them. I’ve

Dr. Xavier Amador: Prayer. Yeah.

Rachel Star Withers: Actually been in sermons where someone with cancer said, I’m quitting chemo. God is now my doctor. Where does that fall? When we think about anosognosia? Why can’t someone with schizophrenia Their delusions almost kind of be like, well, no, I don’t need this. Where is the line there?

Dr. Xavier Amador: Yeah.

Rachel Star Withers: Like, when’s acceptable-ish and one isn’t.

Dr. Xavier Amador: I think that spirituality and religion is always acceptable. When somebody with a religious delusion, or maybe deep religious faith says to me, I just need to pray. I don’t need any help. I listen and I empathize, and I respect their perspective. I still will likely give my opinion in the soft way I described earlier. Hey, I’m sorry I could be wrong about this and I hope we don’t argue. I think maybe God also created these medicines to help us and to help people. And I’m sorry I have that opinion because I know that’s not what you believe. So I’m going to respect their spiritual religious beliefs. And if they let me, because I always ask, can I tell you what I think? I don’t just tell people what I think. I always ask permission. If they let me, I’ll tell them what I think. But in a humble way.

Rachel Star Withers: Beautiful. That’s a beautiful answer to that.

Dr. Xavier Amador: Thank you.

Rachel Star Withers: Does it tend to be more parents coming to you for help with their children? Spouses? Friends? Who is the major demographic?

Dr. Xavier Amador: Yeah, about 80% are parents coming to me for their adult children. And then the other 20% are spouses, aunts, uncles and friends. I even worked with the police officer who does crisis intervention work, who wanted me to help him with the work that he’s doing. There’s one thing I really want to say, which is that people with schizophrenia who have anosognosia are among the loneliest people I’ve ever met. They deserve to be reached out to. They often people who I’ve talked to with anosognosia are cornered. Everyone around them thinks they have an illness that they are certain they don’t have. That’s a lonely place to be. And because they have schizophrenia, oftentimes they’ve lost the ability to work when they’re ill, they’ve lost friends. They’ve lost intimate relationships. These are people who need connection. So remember, people with anosognosia for schizophrenia are lonely and deserve us reaching out to them and connecting with them.

Rachel Star Withers: That’s an amazing point when you think about just all the things you’ve lost. And then I see the brain is very scary during psychotic episodes.

Dr. Xavier Amador: Yeah.

Rachel Star Withers: I said it’s one of the scariest places to be is inside your own head during them.

Dr. Xavier Amador: Right. I call it stuck between enemy lines and I’m stuck between my ears. I have my own mental. I suffer from clinical depression. And when I’m actively clinically depressed and not in treatment, and I’ve had cognitive behavioral therapy and I’ve had medicine as well. And I’m on medicine now but boy, when I am in a depressive episode and I’m stuck between my ears, I am stuck behind enemy lines, you know? That’s how I think of it. I need help, I need to talk to someone, and I need, I need medicine. Medicine in my case. I’ll tell you, it is heartbreaking when families, when parents come to me and say, please, you know, help us get our son or daughter in treatment. They’re trying so hard and they too are lonely and need, need support.

Rachel Star Withers: The vast majority of emails that I get from family members are that situation.

Dr. Xavier Amador: Right

Rachel Star Withers: The person won’t accept help at the moment, and they’re trying to come to me. Well, how do you switch their mind? And I’m like, you know, it’s difficult, you know?

Dr. Xavier Amador: Well, let me, let me, let me get into language matters a little bit more.

Rachel Star Withers: Okay.

Dr. Xavier Amador: It’s not that the person won’t accept help. It’s that they can’t. How can I possibly accept these powerful antipsychotic medications when I don’t need them? And they cause all these terrible side effects? I can’t do that. So it’s not a question of willfulness. It’s a question of capacity and ability. You know,

Rachel Star Withers: Okay.

Dr. Xavier Amador: It’s different. And when you think about it differently, you behave differently. You communicate differently with your loved one. Don’t say he refuses to understand. He’s ill. Would you ever say somebody refuses to stop hallucinating? No, but we say that. Say instead cannot comprehend. Is unable to see. Is unaware.

Rachel Star Withers: caregivers, family members, friends that are listening right now. What’s their next step to finding out more about the LEAP method?

Dr. Xavier Amador: You can go to LEAP, LEAPInstitute.org and go to resources and free videos. There’s a TED talk I gave. It’s 18 minutes of your time and we’ve gotten over a half a million views and people love it. People write us emails all the time. This was a game changer. It really helped me repair my relationship with my loved one.

Rachel Star Withers: What is your book?

Dr. Xavier Amador: The book is called “I’m Not Sick I Don’t Need Help!” And the subtitle is “How to Help Someone with Mental Illness Accept Treatment.” So, LEAP is really a generalizable communication strategy. It’s not a psychotherapy. Anyone can learn how to use it. You can use it with your teenager who doesn’t have schizophrenia. You can use it with your spouse, with your partner. You can use it with your boss. I have another book called “I’m Right. You’re wrong. Now what?” And that book is another book on LEAP. And it’s about using LEAP in a lot of different situations like I just described.

Rachel Star Withers: How can our listeners learn more about you?

Dr. Xavier Amador: I would go to LEAPInstitute.org. And you’ll see about Dr. Amador, and you’ll see other videos of things I’ve done. If you look in the press section, you’ll see me talking about a number of different topics, and you’ll learn more about me. I’ve done a lot of forensic work. I’ve worked on some very high-profile cases, like Ted Kaczynski, the so-called Unabomber, Elizabeth Smart kidnaping, over 100 death penalty cases. My work in forensic psychology is all about getting people off death row and letting them live their lives out in prison. . And, and I’ve done quite a bit of work in television that you’ll find out about that. But the thing I’m most proud of, honestly and the thing that I is most meaningful to me is, is the development and teaching of LEAP because I’ve seen it change people’s lives and I get a lot of really wonderful feedback about it. It’s my life’s work, it’s my life’s work. Yeah. Before I had kids, Rachel, before I had kids, I thought, at least I did this. You know, I’ve helped people.

Rachel Star Withers: Thank you so much for joining us here on Inside Schizophrenia. And I hope all of our listeners out there look more into the LEAPInstitute.org.

Gabe Howard: Rachel. Excellent job, as always. I have to ask, when he discussed building relationships. What were your thoughts? Do you think this would work on you as a person living with schizophrenia

Rachel Star Withers: I really love that he said relationships will help people get help. And it made me think like, yeah, there’s a lot of things I will do for the people I care about, whether I believe them or not. If my mom were to sit down with me and say, Rachel, you have an anger problem, we just need to talk about this and I think you need to get help. Honestly, if it makes her happy, I would be like, you know, let’s go. If me doing this small thing helps you. Okay. And I think when you approach the idea of treatment, this way, not so much as you have to go, because you’re messing up and you’re the problem versus can you please do this for me? Can we go together and at least explore this idea that absolutely would work with me? It’s not aggressive and it puts the relationship first is, look, I love you. We’re both struggling with this situation, and we need to change it somehow. I think it is a very respectable way to deal with this symptom. It’s not just attacking the person who has schizophrenia or who might have the anosognosia

Gabe Howard: I am a firm believer in the partnership theory of schizophrenia management versus the do as I say method of schizophrenia management. I think that people with schizophrenia, especially as they approach wellness, are going to resent being told what to do. Working together has excellent long-term results, and it looks like the research has shown that. And I know that that is also something that you and your parents do. You work together to manage schizophrenia. They’re not telling you what to do any more than you are dictating what to do. Everybody is working together, but you feel firmly in control and in charge. And I know that’s very empowering. And it leads to recovery and wellness and a good life for you.

Rachel Star Withers: For the caregivers, the loved ones, and the family members who are listening right now. Something that Dr. Amador said was that the goal is influencing behavior, not changing minds as the loved one. It’s not your job to make the person realize that they have schizophrenia. It’s not your job to make them accept their diagnosis. Your job is to be that loved one is. To care for that person is to be the friend is to be that family member. The mother, the father, the sister, the brother, the cousin. That’s your job. And using that relationship to help influence the behavior of the person who has schizophrenia. It really touched me when Dr. Amador brought up the fact that people who have anosognosia are scared. They are scared and they’re lonely because it feels like the world is against them. Having schizophrenia is very scary. And if everyone is attacking me, it’s very lonely and it’s going to make me more hostile. It’s going to make me want to attack back and be like, no, I don’t have this. I want to push back. Keep that in mind that those loved ones are scared, and there are things happening to them that they may not understand or they might not even realize is going on. Don’t judge them and remember that this is a medical condition. It’s not stubbornness or self-destructive tendencies. And be supportive. Some days are going to be better than others.

Rachel Star Withers: Things could be rough right now, but know that things change and they might get a lot better in the future. They might be great now and you have a rough spot coming up. Keep in mind that even if someone totally loses their perception of their condition, they’re not doing it on purpose. They just need you to keep being their friend and loved one. Meet them where they’re at. Thank you 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.