Psychosis and Mental Health Recovery: A Workbook of Activities, and Hope (Ep. 64)

Psychosis is a huge part of many serious mental illnesses, including schizophrenia. 

Jennifer Gerlach, LCSW, is a clinician with a mission: to spread a message of hope and recovery to encourage young adults living with serious mental illness. 

She says, “Your Story Matters AND You Are More Than Your Story”

Her story will inspire you as well.

 Recently, she completed a workbook geared toward young adults living with psychosis. The Psychosis and Mental Health Recovery Workbook: Activities for Young Adults from Act, Dbt, and Recovery-oriented Cbt. The release date is May 18.

In the book, she asks:

How can I use my voice to reduce the other voices I hear?

Who should I tell about my experiences with psychosis?

What steps should I take after a mental health crisis?

We ask:

• How do you encourage young adults experiencing psychosis as a therapist?
• What do you wish more therapists understood about the beginnings of serious mental illness?
• How can intervention in early psychosis affect the trajectory of these illnesses?
• How does anosognosia show up in early psychosis and how can families navigate this?
• What did you find helpful or encouraging from those around you when you were a young person?
• How does early psychosis tend to present and change as someone develops a Schizophrenia spectrum condition?
• What things have you found to help and hinder young people's mental health recovery and engagement in treatment?
• Tell us what you would most like people to know from hearing your story?

Links:

Jennifer’s website:

 https://truestorycounseling.com/

Jennifer’s book: https://www.amazon.com/Psychosis-Mental-Health-Recovery-Workbook/dp/1839977329/ref=sr_1_5?crid=3L2UJOGW5ZYU4&keywords=psychosis+young+adults&qid=1676920229&sprefix=psychosis+young+adults%2Caps%2C118&sr=8-5

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam and her book: https://www.miriam-feldman.com/

Hosts:

 Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Transcript

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SPEAKER_01 0:00

But it's hard sometimes to know if you're hearing voices. You know, when we all have thoughts in our head, right? We all have a critical voice in our head. At least most of us I think do. You know, and sometimes it's difficult to draw where is that line between the voice in your head to where the voice doesn't feel like your it's like your thoughts or an intrusive thought where, you know, it's outside of your head to where it's from an outside entity. And I think even for therapists, sometimes it's hard for us to to draw that line. Where does it cut off? You know, where do we say this is a hallucination versus loud negative thoughts? You know, it's a continuum.

SPEAKER_02 0:34

Psychosis, which sometimes includes hearing voices, is a huge part of many serious mental illnesses, including schizophrenia. Our guest on this episode, Jennifer Gerlock, is a clinician with a mission to spread a message of hope and recovery to encourage young adults living with serious mental illness. And she says, Your story matters and you are more than your story. And she's written a workbook geared toward young adults living with psychosis. And she has a story to tell, too. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. With Miriam Feldman, Mindy Gryling, and Randy Kaye. Psychosis and Mental Health Recovery. Have you ever wished there was a workbook to help you recover from psychosis, especially if you're a young adult? Well, there is one, and it's coming out on May 18th, and that's what we're going to be talking about tonight with the author, Jennifer Gerlock, who has a story to tell herself. But first, we are schizophrenia, three moms in the trenches. This is episode 64. We're three moms with three sons with schizophrenia. We've written three books, and we now have 64 episodes of this podcast. Before we bring on Jennifer, let's just start with a little update. I'm Randy Kaye here with Mimi Feldman and Mindy Gryling. And we're living it, guys. We're living it week to week. And there are ups and downs in mental health recovery. And um, Mindy, let's start with you briefly. And what's going on in with your son Jim?

SPEAKER_05 2:27

Well, we've had those ups and downs this past month. And since we've had our last podcast, I found out just because Jim was acting so funny, you know, he was dizzy, he was stumbling around, and he was slurring his words. And you know, it happened so gradually that I it took me a while. I know I'm slow, but I finally pinned him down. And after lying for about 10 minutes, he confessed that he has been for the last six months, whenever he's at his apartment, using marijuana. And then when he's here in a house where he's forbidden from using drugs, that's a condition for him living with us most of the time. He's been using something called Kratum, K-R-A-T-O-M. And for those of us with children with schizophrenia, especially if they're using clozepine, it's a very dangerous drug. Um, Jim's doctor, who is Dr. Leitman, who we've had on here as a guest, told him that the marijuana is not good because every time he has breakthrough psychosis from it, which he does, he shrinks his brain. So that is not appealing. And it the way he wasn't appealing to Jim, but he said, Jim, the kratom will kill you. You're on clozapine, and the interaction results in seizures, you know, difficulty breathing, and other physical problems. So he scared the bejeep bejeebers out of Jim in an in his nice kind of wonderful relating to Jim way. So Jim volunteered himself to have weekly UAs to have his urine checked once a week. He's already been having it done once a month, but you know, these clever substance abusers, he would use right after he'd had one UA and then stop in time for nothing to show up on the next one. And also, Kratom needs a different panel for analysis than your than uh marijuana. So so we Dr. Latman is prescribed that, and now Jim has to go in weekly, which means my husband has to take him in weekly, but we think it's worth it. But it's a real scare that recovery is not linear.

SPEAKER_02 4:51

Yeah, I'm sorry. That's a whenever you think you can just breathe the air, the clouds come down again. I I totally hear you, and I'm sorry that's happening, but I'm glad that he is willing to take some steps and we'll all keep our fingers crossed because that's kind of all we can do. He's very remorseful.

SPEAKER_05 5:12

Oh I'll say when I was confronting with that him about that, I forgot about the leap method.

SPEAKER_02 5:19

The leap method is Dr. Amador's uh from the book I'm not sick, I don't need help. We've had him on the show as well. As we make these references, Dr. Leitman, Dr. Amador, just go to our episodes and do a search, and you'll see we've also done an episode on marijuana and the fact that it can affect the brain differently if you have schizophrenia. So there's all those warnings in there. My son comes up with not very good ideas when he uses marijuana. I I will say that. Um, you know, this we're okay. Scale of one to 10, we're at about a five stable. But this month, for the first time in a long time, he did impulse spending and ran out of his disability payments in the middle of the month, asking me for money. And so I said, I'll be happy to help you return those items. And that's pretty much where we are. And he swears he's sober, but I always feel like he makes bad decisions whenever he's exposed to marijuana. So I don't know. It's up and down. He has a birthday coming up, and hopefully we're all going to celebrate. But yeah, it's just one foot in front of the other. See, see where, see what's around the next corner. Mimi, how about you? How's Nick this week?

SPEAKER_03 6:39

Well, it's been a rough week. Um, my brother passed away unexpectedly last week, so I myself have been having a hard time. I'm sorry. And Nick turned around and kind of gave me a gift that I wasn't expecting. And I'll share this because I think all the other moms will appreciate this or understand it. Um, you know, Nick is usually pretty uh short with words and things, he doesn't talk about feelings or anything like that. And whenever I give him any kind of major information, he'll basically just say, Okay. And these days we've been mostly uh when we're not together, not talking on the phone, but just he he prefers text. So when my brother died, I had to call him and tell him, and he didn't answer. And I figured I better send a text. So I sent him a text that said, Nick, your uncle died last night, and I'm very, very sad. And my phone dinged, and I looked down on him, fully expecting it to say, okay, well, here we go. And I looked down at it and it says, Are you okay? And I wasn't, but hearing or reading those words meant everything to me. Like sometimes somehow, you know, deep down he's still feeling it, and this was one he couldn't just turn away from, and it meant a lot to me.

SPEAKER_02 8:05

I'm so glad you got that little gift. It's uh people who haven't been through what we go through, and other our many of our listeners go through, don't understand how beautiful normal is. Like what a gift, a moment of normal can be. And so I'm glad you got a moment. Yes, I am too. Thank you. Quite lovely. I also finished referring back to past episodes. We did an episode a while back on a play in Australia called Tell Me I'm Here, which was based on a memoir which I'm holding up on YouTube, but it's by Ann Devison, who's no longer with us. And I finally got around to reading it, and so beautiful and devastating. And her son sadly hardly ever got treatment and passed away early, but it is a beautiful book with a lot of underlined passages. And I do want to mention one more thing, and then we'll bring on our guest that we had a guest a while back, Dr. Judith Smith, who is the author of something uh of a book called Difficult: Mothering Challenging Adult Children Through Conflict and Change. And she has been running support groups and webinars to help support. And yes, dads, we hear you too. It's parents. She wrote a book about mothering, and we do have a show coming up. I'm not sure when. We have done shows about dads, but we are three moms, and that's what we know. But we don't want to discount the parents and the children and the siblings and the spouses of people with serious mental illnesses. And we hope you continue to get something out of our podcast as well. Judith wrote to us just to say how much the people in her support groups love our podcast. And that was just delightful to hear from her. If you want to know more about her webinars or her support groups, you can go to her website, which I believe is difficultmothering.com. I'm not exactly sure. Yes, difficultmothering.com, and you can find out that information there. And people are finding it very valuable because they're re-upping. So this is just an idea of some of the things we've spoken about. And tonight I got an email a while back from a lovely young woman who to tell me about her experience and about this book that is coming out May 18th. You know, psychosis is one of the symptoms of schizophrenia, and it's also a symptom of many serious mental illnesses, including schizophrenia, which our sons have. So our guest tonight at age 13 was hospitalized, followed by a storm of mental health diagnoses, psychosis, multiple mood disorders, and others. As is very familiar to all of us, she did not believe she had an illness. She did everything to evade treatment. She recalls going to the library and finding books written for teens and young adults on anxiety and depression, but nothing on psychosis. And she felt really alone. So, long story short, she did get better and she's now a clinician. And we're going to ask her about her clinician work first. But she has a mission to encourage young adults living with serious mental illness to spread a message of hope and recovery. And she completed a workbook year toward this. It's called the Psychosis and Mental Health Recovery Workbook, Activities for Young Adults. So uh please welcome our guest, Jennifer Gerlock. Jennifer. Hi. Hi. Welcome, Jennifer.

SPEAKER_01 11:47

Thank you. Thank you.

SPEAKER_02 11:49

Thank you so much for joining us tonight. And and rather than start with your story, let's start with your experience as a clinician. We'll hear your story later with your permission. What is it you most want young adults to know? I mean, you're a therapist, you help young people. Let's start with what you'd like young people to know about psychosis and some of the things they can do.

SPEAKER_01 12:16

Yeah, so it's a big scary word, right? And I I think that, you know, both families and individuals when they hear the word for the first time are quite scared. And I'd like to give a message of hope that you know, a a good life, a meaningful life is totally possible with these types of challenges. And also sort of challenge some of the ideas that people tend to identify with psychosis, some of the stereotypes, some of the stigma that's associated with it.

SPEAKER_02 12:51

Can you say more about that? Like you you want to give a message of of hope, and obviously you're a working adult who is a clinician, so clearly your path to recovery has happened, but you were in psychosis, so um it's really hard to ask you without knowing your story, but let's take you as a clinician first. What kind of work do you do? Who do you work with? And what are some of the things you tell them?

SPEAKER_01 13:16

Yeah, so I started out doing crisis intervention. So going to the local ERs, you know, individuals experiencing a health crisis, figuring out are they going to go to the hospital, are they going to be discharged? What's going on there? From there, I went on and did uh communal health work and in a uh psychosis specialty care program. So it's for people experiencing their first episode of psychosis. And the last about four years, I've been doing private practice, but I still really specialize with young adults, and I still have an interest in specialty and psychosis.

SPEAKER_05 13:48

So my granddaughter is a freshman in college, she's 18 years old, and right now she has um uh a little depression and anxiety, and a lot of her friends do. It seems like half the college kids do. Um and she's seen a therapist. How do you, you know, you're especially interested in psychosis? And obviously she doesn't have that, she's just talking to people and seems to be doing pretty well, actually. But um how would, you know, her grandmother, me or her mother or her, how would what signs would you look for if this was going to turn into something more scary like psychosis?

SPEAKER_01 14:34

Yeah, so you know, I was in school when people talked to me about schizophrenia and major mental health conditions, it was very much, I felt, you know, it either the person has it or they don't. And it was like one day they have it and the next day they don't. But the research shows that's not the case at all. It's often a long trajectory and it starts out with what they call the clinically high risk for psychosis, uh, which can show up as more of the negative symptoms, the cognitive symptoms, less care for appearance, more withdrawal, you know, different sorts of things like that. That can lead into brief psychotic type things. So the fancy term, I think, is called a brief psychotic episode or brief psychotic experiences, but they're not necessarily to a point of qualifying for a diagnosis. Once a person hits a full criteria of a psychotic disorder, that's when it's considered a first episode of psychosis. So that's the delusions, the paranoia, hallucination, where they really can't be talked out of it, where it's really fixated at that point. And then that's when you see beginning to develop the full illness, whatever it may turn into.

SPEAKER_05 15:41

If you had a patient who was, you know, didn't have psychosis, how would you prepare them for that, or would you prepare them? I was uh recently in uh an event for my book, but it also had a mental health panel component to it after I spoke about my book. And there were local experts, and they seemed to, one of them was a therapist, and they seemed to um think that it was uh premature to talk about psychosis or to, you know, just to not scare people and to just with the here and now. And you know, all of us started out with anxiety, depression, and substance abuse and teenage behavior, and never thought about schizophrenia. And in hindsight, I wish someone would have told me about that. Most people that do get schizophrenia start out that way, and then often they get the you know, depression with psychotic features, and then they get bipolar disorder, and then they get schizophrenia, and then if you know my son then got schizoaffective disorder. But um, so what is your philosophy or or take on somebody getting um both families and the person with mental illness getting a little clue at the beginning? Or do you think that's too scary and they should not be told that until more develops?

SPEAKER_01 17:13

Sure. So when a person's in that clinically high risk state, it's not necessarily guaranteed that that will transition into psychosis. It's just that there's a higher risk. And there are in some areas programs geared toward individuals showing those types of symptoms if they're just maybe hearing an internal voice or having just some very mild psychotic-like symptoms, or they have a family history where they can kind of jump on it early. My philosophy is, you know, watchful waiting. If they have a family history, I'm gonna be more likely to refer to psychosis specialty care earlier than if they don't. Um, I don't think it's necessarily dangerous to bring the word psychosis out. Uh, sometimes I'll give some, you know, very friendly sort of psychoeducation about it that, hey, this is something that we might want to monitor for. I don't think they meet criteria yet. I really encourage, you know, meeting with a psychiatrist, making sure that's not the case. And if it if it is, at least just monitoring it from here on. You know, because if you can catch it, the earlier you catch it, the better outcome will be. And ideally, if you can catch it right at the beginning, that's great. But as you pointed out, I mean, there's a lot of overlap between these and other conditions. And then also just typical adolescent behavior, you know, a lot of teenagers withdrawal, go to their room. A lot of teenagers have a drop in grades or whatnot. And so we certainly don't want to take every teenager showing any kind of abnormal behavior and say, this is the first stage of psychosis. Uh but, you know, the more signs that you see, the the more risk that there is as far as family history, the more likely to refer. And then also catching in the early stages, really encouraging a decrease of any substance use, especially as you guys pointed out, marijuana. Uh, sometimes youth aren't very aware of the risks of cannabis or they feel like it's been exaggerated. And and and some of them have had that experience, but unfortunately with psychosis, there is a real risk. Uh, use of cannabis can hasten the onset of psychosis, trigger the onset of psychosis, and worsen psychosis once it's once it's in. So, you know, that's an area I also will give some psychoeducation on.

SPEAKER_02 19:23

Can you say brief psychotic episode?

SPEAKER_04 19:27

Yes.

SPEAKER_02 19:29

What do you think that feels like to a teen? Because a lot of this starts in the mid to late teens, especially with with men, but not necessarily. And teenagers tend to be rather isolated at times and not say what's going on. And there's so many changes that go on with them. So is it possible they don't even know they're experiencing psychosis? Like this is normal. So what what is a brief psychotic episode compared to full-blown psychosis?

SPEAKER_01 20:06

Yeah. So these would just be brief symptoms. So things like say seeing a shadow person, but they only saw it for 30 minutes. It's something they reported that happened during the week. They're not too concerned with it, but they felt like they'd mention it. Um, something like, oh, I had an experience where there's just something crawling on me, but I wasn't sure, you know, that would be something. Maybe somebody might say something like I had a just an odd feeling that somebody could be reading my mind. But then if you're able to kind of get them to challenge it a little bit, probably not to a point of a full psychosis, but we're thinking, you know, okay, we're going to monitor for thought broadcasting because if that continues and they're like, okay, someone definitely is reading my mind, they have access to my thoughts, and we're looking more at a full psychosis. But it tends to be little bits and pieces. And sometimes teens that don't tell, you know, and and young adults, I imagine, wouldn't tell either, you know, might not even think it's anything wrong, might not be bothered by it at all, you know, and certainly like we aren't thinking, oh, I could have a psychotic disorder, you know, I need to ask, you know, as you guys are well aware, you know, there's danasygnosia, let alone, but like, you know, most teens don't know what psychosis is, you know.

SPEAKER_03 21:12

So well, so what do you think is the path, you know, in dealing with that? Because it's a really important component. When I give talks and when I talk to mothers, so often, you know, I give this shtick about how um the if you were to make a list of the red flags for serious mental illness and a list of normal teenage behavior, you'd have basically the same list. So, how the hell are we supposed to know are kids getting seriously sick? And the question that I get from mothers a lot is you know, people tend to want to normalize and they don't want it to be a horrible thing. And the question is, you know, well, how do I know when it's something that's serious? And the answer that I always give as a layperson, as just a mom, is err on the side of overreacting, because it's better to overreact and be an idiot than it is to ignore symptoms.

SPEAKER_01 22:15

Absolutely. Absolutely. I totally agree. And in a 48 out of 50 states now, there are uh coordinated specialty care uh programs for individuals experiencing a first episode of psychosis, and most of those have an element of assessment. So they can do an assessment, say where they are on the continuum, are they clinically high risk? Are they no psychosis at all? Are we looking at a first episode of psychosis and go from there? But but I agree with you, there's a lot of overlap. Uh the two markers I look for are impairment and distress. You know, if it's getting in the way of the youth's life, that's a problem. If it's bothering them, or the people around them sometimes as well, then it then that's a problem as well.

SPEAKER_02 22:55

So we certainly it goes without saying that you as a clinician are likely to be seeing patients and families who at least know something's up. Right. So unfortunately, those who are still suffering in their rooms and never sought help or never got hospitalized, that's a different category because they're not reaching out for help. But as a clinician, you're trying to help those who who have at least an awareness that something has happened, right? So and you know, and I can look back, we can all look back and go, oh yeah, I should have seen this and I should have seen that. So I think yeah, I think overall including in general education of families and of students, if in classes, health classes could include information about psychosis and could include information about some of the mental illnesses, then everybody, even those who've never experienced it, would at least have a clue. So that's one thing to advocate for. But going back to your work as a clinician and this workbook that you've written. So let's say you've had a client and they have they've had full-blown psychosis and they come to you and say, How do I how do I deal with this? What do I do? Is this what your workbook is about? About I'm assuming it doesn't replace medication and treatment, right?

SPEAKER_01 24:30

No. So yeah. So my first my first step would be absolutely, hey, are you seeing a psychiatrist? If not, can I help you get in with one? Can we get some family member involvement? I mean, there has to be a team. But my workbook goes through strategies from different psychotherapies that are used to help with some of the challenges people have with psychosis. So some of it's drawn from recovery-oriented cognitive therapy. So focusing on challenging some of the thinking, you know, moving towards some of the value-based goals that might have nothing to do with symptoms. Some of it's focused on things like sleep, focus, um, anxiety, depression, other mental health symptoms that might be dealing with. Have some psychoeducation about paranoia, some psychoeducation on coping with voices, a little bit from acceptance commitment therapy or a strategy of sort of being able to have an experience.

SPEAKER_02 25:23

Acceptance, you're talking psych to me, and I don't know what it is. So sure, sure. What is acceptance?

SPEAKER_01 25:30

Acceptance commitment therapy.

SPEAKER_02 25:32

So can you accept have you guys heard of that, Mindy and Mimi? Okay.

SPEAKER_05 25:35

When I first looked at it, I thought it was like act teams because that's what uh ACTs to me. So then I saw this other definition, but I'd like to hear it from yeah, yeah, I would love to share with you about this.

SPEAKER_01 25:49

Most people have heard of CBT, but not everybody has heard of it.

SPEAKER_02 25:52

Yeah, CBT is cognitive behavioral therapy, and we've heard of that, but I haven't heard of the others. So this is some I'd love you to share a little bit about it. And I'm assuming this is some ways that you help your clients in a session or something. So tell us about it. What is that?

SPEAKER_01 26:07

Yeah, so acceptance commitment therapy is very much based on an idea that the most important thing for us to do is figure out what matters to us and move toward that. And that sounds very simple, um, but ironically, it's not that simple. So it focuses on values, clarification, who you are beyond your diagnosis, what matters to you, moving toward that. And then also there are skills that are focused on coping with intrusive symptoms like voices. So, for example, if you're hearing a voice, you have a choice of engaging with the voice, um, which is a choice some people choose. But there's also some ways sometimes to step back and to observe and refocus on other things. And so that would be a strategy called diffusion. And in the book, I don't use all these fancy terms, but it's strategies based on those types of therapies that I'm trying to disseminate in a way that's youth-friendly that they can read and apply to their lives and feel not pathologized. I try to include a number of chapters that would be just general youth mental health as well, not just for psychosis, but a number are geared towards people with psychosis because honestly, there's not a lot out there, uh, specifically for youth with psychosis. There's a lot of books written for uh youth with anxiety, youth with eating disorders, youth with depression. And I think that there needed to be at least one, at least one that they could access to at least say, hey, that other people live with this and they get through this, and it doesn't have to be this horrible thing. And there are some strategies, some things that you can do to cope.

SPEAKER_05 27:38

I think you're filling a real void with this. And um, you did send us a link to the workbook so we had a chance to get a preview because I don't think it's it comes out in uh in about a month. Is that right? Yes, can't wait to get my hands on it. I know it. And so I want to see the whole book. I you've specifically mentioned a couple sections that we might want to preview for this program. And I have to say I love the way you wrote about the family, and and I like the fact that people that were your clients or were using this workbook would read a little something, get educated, and then they could write how it applied to them. It was just, I thought, a very non-threatening way that even a younger child than a teenager could take something away and use the format. But since our listeners haven't gotten to read the family section, could you just kind of sketch out a couple of highlights of um how you uh talked about the family to the to your clients? And I also loved what you said earlier that this is a team and you involve family. So that's all of our years.

SPEAKER_01 28:50

Absolutely. So in terms of family, you know, we're discussing both triggers but also supports. You know, family can be one of the best supports. Research shows that family engagement is a big predictor of recovery. So we we want that if possible. Um, but I tried to write it in a way that a youth, regardless of the relationship with family, could relate to and might be able to explore some things that they find triggering as well as things that they find supportive and have some language to ask their family for the kind of support that they need.

SPEAKER_02 29:24

Can you give a concrete example for our listeners? So they'll go out and get your workbook and read the rest of them. So, like, what are what are some specific phrases or questions that someone could use to enlist their family for support or help their family to understand?

SPEAKER_01 29:41

Sure. So there's one worksheet that's just like my family can support me by, and there's check boxes, you know, of things they can check off, things like, you know, listening to me. Um you know, as well as there's things my family can support me by not, you know, for example, not telling anyone of my diagnosis unless I want to tell them, you know, like being the one to disclose that. Those sort of things. Those sort of things.

SPEAKER_02 30:08

So to help people really get clear about what they need so that they can then communicate it to other people. Yes. Yeah, absolutely. You mentioned something in your book where it says, and the release date, by the way, is May 18th, but it's available for pre-order on Amazon, Jennifer Gurlock, G-E-R-L-A-C-H. It's the psychosis and mental health recovery workbook. You'll you'll find it. But in the book, you ask, how can I use my voice to reduce the other voices I hear? Can you elaborate on that? Sure. So And I know that you're aware that that you're if you if you need medical treatment and medication, that just using your voice alone isn't going to cut it. But this is a way if there's residual voices that you can so how tell us about that.

SPEAKER_01 31:10

Of course. So I believe that refers to one of the chapters on hearing voices and a particular strategy for coping with voices. Now, mind you, this doesn't make the voices go away. But a number of people do report that when you are speaking, it's harder to hear a voice, you know, but just because that part of the brain is activated. And so I have a chapter on amplifying your own voice, um, using positive self-talk. Hey, you know, I can be in charge. My voices don't have to be in charge. And it gives some positive messages about voices as well of hey, you never have to do what a voice tells you to do. It's important to tell somebody about your voices. You don't have to keep this hidden. This is something your doctor should know about. And, you know, absolutely do want to just make very clear this isn't replacement for antipsychotics or anything else. But, you know, sometimes people take medication and still have some residual symptoms. Unfortunately, I wish that that was never the case. I wish there was, you know, magic, but and so for some people there is, but you know, if they are still experiencing that, just wanted to give a checklist of things that these are things you can do to help you cope with that experience.

SPEAKER_03 32:15

I have a question a propos of anasygnosia. My son, for example, has never admitted that he heard voices, you know, to something that uh I mean, now he he's he has insight and he understands that he has schizophrenia, but for some reason the voices thing was something that he just wouldn't tell anybody. Is there, have you found any sort of a path in or any sort of ideas of dealing with people who clearly are hearing voices and yet won't admit that they are? And so all the help is pointless because they don't consider themselves needing it.

SPEAKER_01 32:57

Sure. I I use the language that they use. If they use the word stress, I use the word stress. If they use the word trauma, I use the word trauma. With voices, it's difficult. There is a real stigma to voices. A lot of unfortunate jokes I've come across and nasty things related to hearing voices when it's a very terrifying experience for somebody going through it. It's not uncommon for me also to meet people, especially with schizophrenia, where they genuinely don't believe they're hearing voices. They believe that, you know, somebody's sending a radio chip in through their head, or um, you know, that there's a demon communicating with them. So without leaning into it, kind of doing some of what you guys were talking about with Leap, I love that book as well. Uh, you know, I'm not sick, I don't need help. You know, same thing of just, hey, you know, I'm hearing you're having this concern about the voices, the demons, you know, and let's talk about that and how you can cope with that. Not looting with it, but trying to give whatever I can to help them deal with what their experience is, what their reality is in that moment. But it is a real problem. And I think that's also one of the reasons that early intervention is so important, because as the illness progresses, um, if early intervention is not applied or if intervention is not applied, there's this thing as the duration of untreated psychosis. Longer psychosis goes on, the worse often the anasognosia gets. And so it's a lot easier in the beginning. I notice people are more likely to say, yes, I'm hearing a voice in my head, uh, or I'm hearing a voice outside my head, and I know it's not, versus years later, if they hadn't gotten the help and then it's a radio chip. I know that they're trying to send me the message and it's just really upsetting. And that's a little bit more difficult. It's not impossible, you know, but it's a lot more of like the leap strategies rather than giving a worksheet of how to deal with voices. And they're like, Well, I don't hear voices, you know, what are you talking about? I don't have psychosis, I don't want to deal with this. Like, why are you pulling that up for me? You know, it's got to be different, meet the person where they are.

SPEAKER_05 34:55

That's uh my son doesn't like to admit he hears voices either. And that was a big tension in writing my book. I wanted to, I wanted and I did say he was hearing voices because it's otherwise the way he explained it, it would have been a whole paragraph every time how I wanted to use in his language in order to say what he was experiencing. So he finally agreed I could use that shorthand, but we knew between ourselves that that wasn't um what he wanted to call it or what he thought it was.

SPEAKER_04 35:25

Sure.

SPEAKER_01 35:26

And and I'll be uh I want to be conservative. I I've been given a number of diagnoses and I don't know which I identify with this anymore. I don't even know what my current diagnosis is. Um, but it but I can say there was a time when I experienced what I called voice-like experiences. And my first uh person that I reached out to was a priest, you know, because I did think that demons were harassing me. And I thought, well, if I talk to a doctor about this, they'll have another idea and they'll be wrong. Whereas I talked to a priest and um he did give me some Catholic type things, say the prayer of St. Michael, but he also spent some time with me and he eventually did talk me into returning to a doctor and sharing some of that information. But but it's hard sometimes to know if you're hearing voices, you know, and we all have thoughts in our head, right? We all have a critical voice in our head, at least most of us, I think, do, you know, and sometimes it's difficult to draw where is that line between the voice in your head to where the voice doesn't feel like your, it's like your thoughts or an intrusive thought where, you know, it's outside of your head to where it's from an outside entity. And I think even for therapists, sometimes it's hard for us to draw that line. Where does it cut off? You know, where do we say this is a hallucination versus loud negative thoughts? You know, it's a continuum.

SPEAKER_02 36:44

Absolutely. Mimi, you you said something, but we couldn't hear it.

SPEAKER_03 36:47

So say Oh, I'm sorry. I I was saying I've often wondered about that. Because I think about that. We all have voices in our head, and I just wondered like, how is it different for them? You know, it's a completely obviously different experience, but maybe not as different as I think.

SPEAKER_01 37:05

Yeah, and and I think for different people, it's different, you know. In my experience, it was more loud, negative thoughts. It felt like they weren't from me, it felt outside of me. Um, but I've also known others who very clearly hear voices outside their mind, who hear voices talking to each other, you know, having conversations about them is common.

SPEAKER_03 37:26

So my big question now is how did you get from there to here? Yeah. Like it was a long journey. Yeah. I mean, give us some of that story, please.

SPEAKER_01 37:37

Yeah, yeah. So, you know, I was first kind of flagged as having some mental health issues aged 13. Um, and my side of the story would be that um my mom drove me to a hospital and said I wanted to be admitted, and I was admitted, and I was very unhappy about that, but that's not other people's side of the story. But but anyway, like I was in hospital, I got out of the hospital. I didn't think I had an illness. And so I got out of this hospital and I stopped taking medicine, as I'm sure sounds familiar to you guys. Um, I found out if stopping taking medicine would result in me going back to the hospital. My mom gave me the medicine, I started spitting it out. Um my mom got on that I spit it out, so she checked my mom for it. And I got to where I took some vitamins, put it in the medication container. My mom was giving me vitamins that she thought she was giving me the medicine. Um, so it was very much a push and pull, you know, in adolescence. I didn't like lying to my parents. I was I was scared of the medicine. I thought it was mind control. It was a whole thing. Um things that helped though. Uh, you know, I got involved with uh we got involved with NAMI. Uh so I went to support group. It one was called Connections. Um I went to a depression bipolar support alliance group that was helpful. Schools stepped in and they sent me to a therapeutic school, which similarly I was unhappy about at first, but actually ended up being one of the best things for me. I was able to get back on track with school. Um, over time, a lot of that faded away. For me, a lot of it was really melded into depression. So I think that that kind of put me at a little bit of an advantage. But then, you know, the experience I described about the demons, that was actually something in college that had happened after I'd, you know, grown out of my what I had as far as health insurance. You know, I lost my Medicaid, turned 18, and I didn't have, you know, health services. And so after about a year of that, maybe less, I it's hard to remember exactly. That's when I had that experience where, you know, I was meeting with the priest, and then eventually them referring me to a doctor. And, you know, even then I was hesitant. You know, I would talk about focus issues, I talk about sleep issues, I'd talk about things that I thought they could relate to that weren't so abnormal, but I didn't talk about my depression, I didn't talk about the more um esoteric things until some time had passed. I'd had another new psychiatrist and a psychiatrist after that. And each time I met with somebody, I built a little more trust. And yeah, I know that was a long answer and probably quite confusing.

SPEAKER_02 40:06

Um but it was it was quite familiar. It was quite familiar, actually. I mean, the the timeline was a little off, but clearly you have been in the shoes that our sons have been in and all that uh you've been through a lot. Are you currently in treatment with medication?

SPEAKER_01 40:26

Yeah, I take medication. Um, I see a therapist every week. Um, I went through transcranial magnetic stimulation. Okay. And that was helpful as well with the depression. So my treatment's very important to me. And uh I I plan to be in treatment for life and I have no qualms about it. I'm, you know, I like my psychiatrist, he's very nice. Uh, my therapist is very nice, and uh, I feel like they're on my team. Whereas, you know, when I was 13, I felt like these were people that I needed to get out of my life and evade and who were trying to ruin my life and and brainwash me with drugs, and I was very unhappy about it. But um, I'm actually very, very grateful for my treatment today.

SPEAKER_05 41:07

Do you bring any of that into working with clients, or is that not considered kosher to do?

SPEAKER_01 41:14

Sure. So there's a whole thing about self-disclosure. When it's to the benefit of the client, you can self-disclose. And I do self-disclose sparingly to my clients when it is to their benefit. You know, with psychosis, I think sometimes it can be because it is such an esoteric thing. A lot of times people think, well, if you have this kind of thing, that that's it. Like at least that's what I thought. And that was one of the reasons that I didn't like that um when I was given the more serious mental health diagnoses, because I thought, well, hey, if I say that this is going on, then I'm saying I can't go to college and I'm saying I'm not going to be able to work, and I'm saying all these other things, then ended up not being the case at all, you know, that you could have a good life um with a mental health challenge. So, you know, I do disclose at a minimal level, you know, and and I'll always ask, hey, is it okay for me to share something personal? If they say yes, great, or they say no, great. And then afterward, I'll I'll ask, hey, how was that for you? And I because I want to hear, you know, how it was for them. I don't I don't want to make it about me.

SPEAKER_02 42:15

You sound like a wonderful clinician.

SPEAKER_01 42:17

Thank you.

SPEAKER_02 42:18

You know, I my daughter recently ran into someone who knew my son, who I call Ben for public purposes, who knew him as a teenager. And you know, you talk about sometimes they you don't know if the voices are supposed to be there and this is what happens to everybody, or so part of it may be adolescent stubbornness, but part of it is just like, well, maybe I guess this is normal because it's happening to me. So this friend told my daughter that I he used to hang out with my son in high school when things were just ramping up in the way that you describe. And and this friend said, Yeah, Ben used to just sit there and go, Did you know there are ghosts behind those walls? Yeah, there are definitely ghosts behind those walls. And that it was something he really believed. Now there are many paranormal shows on TV for people who believe the same thing. So again, where do you draw the line? I think I've mentioned this on the podcast before. In one of the rooms that was my son's bedroom for a while, there are burn marks on the ceiling.

SPEAKER_04 43:22

Wow.

SPEAKER_02 43:22

Almost as if he took a match and held it up there, and it's just like he didn't burn the house down, but there's that that black residue. He to this day will not tell me what ritual he was performing to get the ghosts out of the walls or whatever. These are things he never told me, but he did tell his friends. So I think that you have so much on your in your platform to make sure that early intervention and early education is important to young adults. It sounds very much like the support of other people going through psychosis was really important to you. You mentioned that. NAMI National Alliance on Mental Illness Support Group that was helpful to you. Um we have about five ten minutes left. I don't want to rush you, but there is it's going very quickly. So I want to make sure that we get a chance for you to. There's so many questions, and you've told us a bit of your story. Is there anything else about your story that you want us to know that you haven't had the chance to tell us?

SPEAKER_01 44:25

Oh man, I I think that I shared what I'd like to share there. Um, if you guys have any questions, I'd be glad to elaborate. But you know, the big thing I just want to share is yes, this can be a really dark thing. But yes, you know, recovery. Recovery is possible. And I don't think it matters. You know, I think that there's recoveries possible where wherever you are in the illness, you know, but if we can catch it early, you know, ideally even before the onset of psychosis, you know, have some watchful waiting, have some skills acquisition. And if the person crosses over into psychosis, they can get help. And if they don't cross into over into psychosis, at least they can have skills and good things going for them.

SPEAKER_03 45:03

I think that we've touched on something that's important here. Uh what you were saying, Randy, about Ben's friends and them saying things. I recently had an experience where I interacted with a very good friend of Nick's when they were teenagers, and he was telling me things that were such red flags. And I said to him, Jack, why didn't anybody tell us back then? I mean, we would have known to react to this. Yeah, I was flabbergasted. You know, he's an adult now too. And he says, We were kids, all that was in our mind was we didn't want to get our friend in trouble and we didn't want to narc on him and you know, all of that. And also, I think a lot of the kids when when the other when somebody starts acting really weird, just assume they're doing too many drugs, and that's another thing that it's like the code of silence. I'm thinking that you know, there needs to be more education for young people that it's not always drugs, and it can be this really serious thing. And, you know, there are certain red flags that should be told to the parents, and nobody's gonna get in trouble. I know that's a behemoth to even begin to touch, but boy, it would have made such a difference.

SPEAKER_01 46:26

I I think that it needs to be made something that's not feared, you know, that we can talk about openly. I I think that, you know, families, individuals, and even clinicians sometimes are afraid to say the word psychosis, you know, because if we say it, do we make it that? You know, and we don't want it to be that. But sometimes in that pushing back, or you know, I don't like the word denial, but you know, that that pushing back of saying, well, maybe this isn't that, or let's just hope it's not that people miss out on getting the help they need, you know. And sometimes in retrospect, we look back and we're like, oh, make all this makes sense, you know, like there's that hindsight bias too as well.

SPEAKER_03 47:02

But but I think we need kind of a mental health equivalent to if you see something, say something. You know, I mean, that's so dug into our culture now, and and I think we need to correlate that.

SPEAKER_01 47:14

Yeah, absolutely. Absolutely, because it's it's a critical period. They say the first 18 months to five years of psychosis onset, there's a lot going on in the brain, and you know, a lot that can be done in that time to lead to a better trajectory of the illness.

SPEAKER_05 47:32

I totally agree. And one thing um why I'm really glad you're doing this workbook, and you have done this workbook, is because so often people think that we're so open in 2023 now about mental illnesses. But what we're talking about, as you said, is depression and anxiety. And occasionally now someone will come forward and say they have bipolar disorder, but it's very rare that anyone wants to admit publicly, if they're some sort of figure that has made it, that they have schizophrenia. So I think what you're doing is so important. I was looking over um the youth psychiatrists and all the services that they offer, and schizophrenia wasn't listed. You know, so when you think it's so unspeakable that you can't talk about psychosis, or because it must be really bad if you've got that, or it's so unspeakable that you cannot talk about schizophrenia, that must be really bad. And then when you find out you're having those things, that just adds to the layers of not wanting to admit it or not wanting to accept help. And you know, I just think it's all part of that same ball of wax that you're addressing. So thank you so much.

SPEAKER_01 48:56

Yeah, I think there still is a lot of fear, and and you know, even colleges, universities, you know, mandated leave of absence, you know, if a student is having certain mental health issues or sort of pushing them away from re-enrollment, uh there's still a lot of ableistic policies in that area and and you know, real reasons people have fear of disclosing their experiences. But, you know, psychosis is no more uh evil or dangerous than any other mental health condition. And you know, if we can say it, you know, and get somebody help early, there's a much better chance of recovery.

SPEAKER_02 49:34

Absolutely. And one of our future guests is going to be Dr. Jeffrey Lieberman, who wrote a book called Malady of the Mind, just talking about that how schizophrenia is an illness, and let's treat it like one and let's talk about it and let's put research into it. That's among the shows that are coming up. We're also going to have another part two of our Families Tell Their Stories episode, and we'll be talking to more case managers, and there's a lot coming up. Jennifer, what uh last words and how can people learn about the book and get in touch with you?

SPEAKER_04 50:11

Sure.

SPEAKER_01 50:12

So um, as far as getting in touch with me, very easy. Um just look up Jennifer Girllock, LCSW, you'll come up with my name, True Story Counseling. It's got my email address, you know, phone number and all that. And I'm very open, you know, as far as uh, you know, anything I can do to to assist or any questions anybody has. Um, as far as the book, uh it's on Amazon, um, Barnes and Noble, and just the psychosis recovery workbook, um, activities for young adults from um act dbt and recovery-oriented CBT, which is just long. I I think just the the psychosis recovery workbook should bring it up.

SPEAKER_02 50:51

So I think it definitely will. Well, it's been absolutely such a pleasure to to talk with you. Congratulations on the book. And um thank you so much for being with us tonight. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.