Medication, Therapy, Hospitalization, Electroconvulsive Therapy- what are the treatment strategies for schizophrenia? How do you convince someone they need help? What if someone refuses treatment?
Schizophrenic Rachel Star Withers with co-host Gabe Howard reveal different treatments they have undergone over the years with various outcomes. Guest Barbara Thompson, with the National Alliance on Mental Illness, shares support options for people with schizophrenia and their family in the community.
Highlights from “Treatment Strategies for Schizophrenia” Episode
[02:00] How to bring up Schizophrenia to a loved one
[05:14] What needs to be addressed?
[08:00] Play out the situation beforehand
[12:56] Telling people you have schizophrenia and need help
[16:55] Treatment options for schizophrenia
[22:00] Treatment resistant schizophrenia
[24:09] Types of therapy
[28:55] Electroconvulsive Therapy, Vagus Nerve Stimulation, Animal Support
[37:00] Crisis Plans
[40:19] What if they refuse treatment?
[43:18] Guest Interview with Barbara Thompson of NAMI Indiana
[51:30] We fear the treatment more than actual illness
[52:50] Getting help is brave
About Our Guest
Barbara Thompson – Executive Director of NAMI Indiana
NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.
We offer education programs to ensure families, individuals and educators get the support and information they need.
We advocate for national public policy for people with mental illness and their families and provides volunteer leaders with the tools, resources and skills necessary.
Computer Generated Transcript of “Treatment Strategies for Schizophrenia” Episode
Announcer: Welcome to Inside Schizophrenia, a look in to better understanding and living well with schizophrenia. Hosted by renowned advocate and influencer Rachel Star Withers and featuring Gabe Howard.
Sponsor: Listeners, could a change in your schizophrenia treatment plan make a difference? There are options out there you might not know about. Visit OnceMonthlyDifference.com to find out more about once monthly injections for adults with schizophrenia.
Rachel Star Withers: Welcome to Inside Schizophrenia, a Psych Central podcast. I’m your host, Rachel Star Withers, with my co-host Gabe Howard. The past few episodes, we have discussed different symptoms of schizophrenia. Last time, psychosis, before that, lack of motivation, how all this affects working, socializing, family. Today, we’re gonna be focusing on getting treatment for people with schizophrenia, how friends, family, caretakers, loved ones can help bring up the subject, what they should do, options for different treatment. Our guest will be Barbara Thompson, who is the executive director of NAMI Indiana. She’ll be joining us later to discuss support options for people with schizophrenia and their family in the community.
Gabe Howard: And we do want to get to know you a little better. So please, take a brief three minute listener survey so we can better understand our audience, which is you! You just have to head over to PsychCentral.com/survey19 to complete it now. And everyone who completes the survey will automatically be entered into a drawing for a free $100 dollar Amazon gift card, void where prohibited. That’s PsychCentral.com/survey19.
Rachel Star Withers: When we’re talking about any sort of mental disorder, that’s a touchy subject, whether you talk about bipolar, depression, but especially schizophrenia. I get a lot of different people be like, well, how do I bring it up? Gabe, did someone bring it up to you or did you first bring it up to other people like loved ones about your bipolar?
Gabe Howard: Nobody brought anything up to me because nobody knew anything. And all of the people that I’ve talked to in the mental health space, especially people with schizophrenia, they all sort of tell this like story where nobody said anything to them. Then something happened and everybody was like, oh, we knew there was something wrong, but nobody said anything. They just, like, whispered behind their back.
Rachel Star Withers: I knew something was really wrong with me. I think, again, like you’re saying, other people knew something. Definitely no one thought it would be as serious as schizophrenia. But I went to the doctor on my own after two different therapists slash psychologists, they had told me I had schizophrenia. And I actually sat my parents down and I told them. That was a lot for them to take. My dad has like no concept of depression. He’s one of those people that if you’re not happy, you just need to make yourself happy. So I think it was harder for him to understand.
Gabe Howard: I know the episode where we interviewed your mother, great episode, by the way, the family and supports episode, she was shocked. But she said that you were able to do things on your own and this was one of them. You realized something was wrong. You got yourself to the doctor and you got help. This is atypical, though, right? I mean, a lot of people with schizophrenia, they sort of find out via a crisis. I found out about my bipolar disorder with psychotic features in a crisis. I was taken to the psychiatric hospital, the emergency room, the psychiatric hospital, and I was admitted. Is that common that people just find out because something bad happened? I mean, most people do they have the presence of mind to just go seek help like you did?
Rachel Star Withers: Well, to be fair, I did have multiple crises. The first, I’d say a big, big one, was when I was 17 and definitely that was a huge red flag. I was away from home. I was at a Christian school and they were like, oh, no, something’s wrong with her. Clearly, she’s demon possessed. So that was my diagnosis from them. Had I been home, I probably would’ve went to a doctor and it would have all come out then. Unfortunately, I did not.
Gabe Howard: And let’s talk about that for a second, because somebody did recognize something was wrong. So that’s like a good start, right? Step one. Figure out there’s a problem. But then step two kind of went a little wonky. Right? They came to the conclusion that you were possessed by a demon. And then I imagine that if their conclusion was you were possessed by a demon, that step three, the treatment that they gave you was
Rachel Star Withers: Mm hmm. Was squish out the demon?
Gabe Howard: You were given an exorcism, correct?
Rachel Star Withers: Yeah, it was like, yeah, we have to get the goblins out of her.
Gabe Howard: So we can learn from this experience, and I’m very sorry that you had this experience. But what we can learn from this experience is that people are able to spot when something is wrong. But because of the lack of discussion, the lack of information, they can easily come to the wrong conclusion. And obviously, if you come to the wrong conclusion, you’re going to provide the wrong sort of support. So if a friend or a loved one, a family member, notices that something is wrong with you, what should they do?
Rachel Star Withers: First, they need to figure out what exactly are they noticing? What is the situation? Too often it’s just like, oh, man, they’ve been acting so weird. Like what? What’s been going on? Has it been they’ve been lashing out? Or is it as far as they’re having delusions? They think that God’s been talking to them or that they are God? Is it a violent situation? Has it been they’re just, they’re not wanting to wake up anymore? So figure it out. What exactly is different and what needs to be addressed? I think too often when there is a problem like the friends and family will overload the person. It is just kind of like the straw that broke the camel’s back. And so the loved ones kind of snap at the same time. Like you do all this and you do this and you got a serious problem and you’re . . . Whoa. Which is only going to cause more problems because now the person who is dealing with a potential crisis, you’re really pushing them. So sit down, figure out what exactly needs to be addressed. What are the big problems? Don’t just kind of go off on every little thing. Then get actual examples, because if you come to me with, Rachel, you have been so lazy. I’m gonna be a little offended. Like you don’t know my life. I got a lot going on. Like, you know, you used to wake up and work out. Now you won’t even get up, you know, before 10.
Gabe Howard: And here is a good space for I – statements, right? Don’t say, Rachel, you are so lazy. Say something like, I miss cooking breakfast with you. And you used to get up and cook with me or I miss going for walks with you or carpooling into work or whatever it is that you saw. You know, being accused is going to make the person defensive. And coming at somebody with anger? Well, then obviously the person who’s trying to help is angry. So, you’re not on your best space to give help.
Rachel Star Withers: Yes, one thing that my mom is really good about, because she’s seen me kind of deteriorate a little bit over the past few years and saying, you know, you used to do these mud runs, you used to do like compete in 26 mile mud runs, you would box every other day, like the MMA boxing. And now you get winded, you know, sometimes just jogging. And when she actually reminds me of all that, I’m like, oh, yeah, you know, you’re right. And our way around that was we started walking together. Get me out more. I just kind of started secluding myself. So, whenever you are talking to the person here, the person that could be having a mental situation, read up on it. Okay? Don’t go online and diagnose them. Don’t be your own doctor, okay? Don’t say, well, I’ve decided the Internet and Wikipedia that you have this. No. Just read up on general mental health. And I always suggest playing out the scenario. How do you think the person’s going to react? Is it someone who they’re going to be offended if they’re offended easily? Is it somebody who’s gonna be chill? And I kind of think about that, like, how do I want to bring it up in the space? Is this something that we can kind of be watching a movie and bring up, or is this I need to sit this person down? Make sure you’re not in a high stress situation.
Gabe Howard: There’s a couple of good points to make here, right? One, you should never say we think you have schizophrenia. We think that you’re crazy or we think that you’re a bit insane. Because the reality is, is while you may be right, you don’t know. Unless you are a doctor, you don’t know. And if you are a doctor, you’re not your loved one’s doctor. You’re your loved one’s aunt, uncle, father, mother, friend, sibling, brother. So, your goal is not to diagnose them. Your goal is to partner with them, to get a diagnosis, to get help, to get to a medical practitioner. Sometimes family members and loved ones, they miss that. They’re there putting the cart before the horse. Your goal is just to get them to acknowledge that maybe, maybe they see something wrong, too, or they’re willing to go get it checked out because they love you and they respect you. And you blow all that up if you set yourself up as the master or the owner or the the decider, that’s not what a partnership is. Right? That’s not participatory.
Rachel Star Withers: Well, few other little tips is do not make the person feel trapped. I think we’ve seen in the past there used to be the reality show Intervention and that was so intense where they would, you know, kind of have, the TV cameras for one going, but, the entire like family sits the person down and says, like, you are destroying all of us. And then a person usually like would freak out. And you’re like, oh, there’s so much drama. Yeah, don’t do that. While it makes for amazing reality TV, it does not make for great reality. And I have a question for you on this, Gabe. I’ve never had a situation of multiple people coming to me to, like, kind of make me address something. I prefer one on one. The times I’ve had situations that have escalated, I’ve had people come to me one on one. How do you see the whole getting everybody together, sitting the person down, Intervention style?
Gabe Howard: I have no idea if the intervention style works or not. I understand that it works well in substance abuse and this show is not about substance abuse, it’s about schizophrenia, which is on the mental health side. I’ve never seen it work particularly well on the mental health side for any number of reasons. But honestly, I think the biggest reason that it doesn’t work is because it it often seems to be about the group in the room, not the person who needs help. I firmly believe, and what I’ve seen work, is that the group gets together and elects a spokesperson and the spokesperson should really only have one quality and that be the least threatening to the person they’re going to talk to. Little sisters have saved more people with mental illness than any other person. And that’s because baby sisters, their role in the family is usually not threatening. There’s usually that history of them idolizing their older brother, their older sister. So often the parents are like, well, I want to be the one to do it. I want to be the one to tell them. I want to get it off my chest. And I understand that. But that’s your issue. Find the person who has the best rapport and is the most non-threatening to the person. Unload on that person. Have a meeting ahead of time and then have that person go in and talk to the loved one. And, you know, they can say things like, look, the family is worried about you, but it’s just a lot, right? Even when I’m completely well, if I had 3, 4, 5 people come at me all with their emotions and their trauma and their worry, and they’re just there being there. That’s a lot. Like you said, it makes for great reality TV. There’s a reason, it’s because it’s dramatic.
Rachel Star Withers: And what surprised me was while I was doing research for this episode, that style came up a few different times that I just thought that was interesting because in my mind I’m thinking I would not want that. And I think too often the idea of substance abuse gets kind of squished in with mental health. And there’s a kind of overlap there, I think, in people’s minds about how to talk to the person. So, kind of back to the first point, know exactly what you’re addressing. Now, for me, I had to be the one to address it to my parents eventually. And so, some tips if you are out there, you have schizophrenia or you have something and you are kind of like, I need help for this and I don’t know what to do. I need to go to my loved ones to start this process, especially if you’re under insurance, under like your parents still, which was part of my problem because I went to the doctor on my own money and then I was out of money. It only took two times, only two times without insurance. So, here’s some tips. If you have schizophrenia and you’re talking to your loved ones, know what you’re going to say, okay? And my biggest thing, be prepared for them to not understand right away. And don’t get upset about that. Already have like some info prepared for them, whether it is a video, a podcast, for
Gabe Howard: Perhaps.
Rachel Star Withers: Instance. You know, I know of a good one. But anyway, give them time. My dad, he needed time to fully kind of wrap his head around what was going on. And I do believe it’s taken him a few years to fully understand schizophrenia and what it is that I’m going through. And I think he’s great now, but it has taken him a long time, unfortunately, and be ready to discuss treatment options. What do you think you need? Like say, OK, this is what I think my next steps are. Can you help me with this? If that’s something that you need.
Gabe Howard: I really like what you said, Rachel, about, you have to give people time. This is big, right? This is a big life change and it’s scary. Like your joke, it has a “Z” in it. Anything with a “Z” in it is scary. And if you’re honest with yourself, you took some time to come to it. But then we tell people and we want them to understand it instantly. That’s not really reasonable. And it’s on us, unfortunately, to be patient. And I know that you had to sit down and tell your parents. A lot of people that we talk to, their parents knew, their siblings knew, their close family knew. But as you reach recovery and as you start doing more and more, you’re eventually gonna have to tell somebody, whether it’s an employer, whether it’s a new friend, or whether it’s your cousin that just wasn’t paying attention for ten years because they were walking the Grand Canyon. There is going to be that moment where you need to tell somebody and this is good advice no matter who you’re telling.
Rachel Star Withers: And don’t feel like you have to tell everybody in the beginning. I dealt with feeling kind of ashamed, like I felt my parents were gonna be ashamed of me, that I had this huge weakness, you know? And that that was one of the hardest things is that I didn’t want them, I didn’t want them to feel sorry for me. And I didn’t want them to be like, oh, gosh, you know, we failed. A lot of times, family members, unfortunately, will think that they had some hand in a mental disorder and it’s nothing to do with you.
Gabe Howard: It really is a common trope in our society. We see on pop culture all the time that schizophrenia is caused by mothers, or it’s caused by something that the parents did early in childhood, or some trauma you didn’t protect them from. This is largely nonsense. It’s not even worth considering. What you need to focus on is that you have an illness and that your family loves you and you want to inform them of this. And that’s it. What happens after that is, there’s a million different possibilities. And we can’t discuss all of them in this podcast. But we can definitely get you to the point of be patient, be firm, give them a pamphlet. Maybe tell them about this podcast. Rachel, now let’s move into treatment, because now they’re on board. OK, Rachel, we believe that you have schizophrenia. We understand. We are scared. We’ve all hugged it out. They’re gonna ask what you’re going to do about it. And if you are on the loved one side and you want to talk to your loved one about having schizophrenia, you know, we believe that you might have mental illness. They’re probably going to ask, okay, what do you want me to do about it? There is no shortage of options.
Rachel Star Withers: Yes. Let’s talk about all of those many options. The goals in treating schizophrenia include treating the symptoms. So, what are they? Preventing a relapse and increasing your functioning, so that you can pretty much get back to living life. A basic treatment plan for a kind of crisis mode, sudden onset of psychosis or what not, would be drug therapy. That would be administered by a doctor and usually during the first seven days of treatment, the doctors’ hospital’s goal is to decrease hostility, if there is any, and to attempt to return the patient to like normal functioning level. To you’re able to kind of maintain the basics, and then followed by, let’s move back in to how we used to be. So, maintenance therapy, learning to socialize, and function. One thing that you need to understand is that maintenance treatment, OK, that is necessary to prevent relapse. So many people, they want to like get better, and then that’s it. They think, OK, well, now I’m good. I don’t ever have to take medication again. I don’t ever have to go to the doctor. It was just that one time. And, as for many of us, it isn’t one time. It’ll be multiple times, even if they’re months apart. The incident of relapse among patients receiving maintenance therapy is 18 to 32 percent. If you are receiving therapy versus 60 to 80 percent, if you did not do maintenance therapy. And that’s a big jump.
Gabe Howard: Big, big jump,
Rachel Star Withers: Big, big jump.
Gabe Howard: When it comes to the type of treatment for schizophrenia. Everybody is familiar with medication, drug therapy, pharmaceuticals. We’re all very, very familiar with that. So, I don’t want to spend a lot of time on it except to say that you need to work with your doctor to find out what’s right for you. The big thing that I hear a lot and that’s medication roulette. That’s I went to the doctor, I got a medication, it didn’t work. All they do is pump me full of drugs, they’re evil. Listen, there are 15 different pills for a headache. And even when there’s 15 different pills, some people take two pills, some people take one pill, some people take four pills. Some people like this pill. Some people like that pill. That’s for something as simple as a headache. And we all can’t agree on what medication is best. It is unreasonable to think that doctors are magicians and they’re going to hand you the right pill at the right dosage immediately. So be prepared for some trial and error, for some guessing. Once you find that right medication, as Rachel stated, your chances of staying in recovery go up dramatically.
Rachel Star Withers: And as technology’s kind of increased, I love that we have different ways of taking the medication. Someone recently we were talking about like different medications and they were kind of comparing patches, injections, and all that. Just there’s so many things that I’m like, oh yeah. Like there’s so many different ways they have now to take medication that isn’t the actual just, OK, let me set out my 50 pills today. Like in my little compartments, I have a morning, afternoon and nighttime pill compartment,
Gabe Howard: Hey, so do I.
Rachel Star Withers: [00:19:37] Ok, yeah.
Gabe Howard: [00:19:38] That’s why we’re friends. But that is a good point to bring up. You know, people talk about this. I talk about this a lot. I was 25 years old, carrying around a pill minder that was literally twice the size of my grandmother’s. That made me, one feel really badly, and two, that made the uncomfortable people around me make some unfortunate jokes about how I was old. And they were just trying to bury their discomfort using humor. And I respect that. Believe me, I respect that. But at the time, it was probably too soon. So that’s an important thing for caregivers to understand. You know, be careful about what you make jokes with. And an important thing for people living with schizophrenia to understand is, you know, not all jokes come from a malicious place. You know, sometimes people just don’t know what to say and they try to be funny because they’re on shaky ground. So, the takeaway of this is if everybody just takes a deep breath and doesn’t go straight to they’re being mean to me, maybe go straight to my family’s an idiot. That tends to work sincerely better. When I realized that my parents were just ignorant of the fact that it was hurting my feelings, I felt a lot better than when I thought my parents were just being mean to me.
Rachel Star Withers: So I have had schizophrenia quite a long time and people love to ask me what medications you’re on? And I never tell them because I’m like, I’ve been on a lot. And what worked at one time might not work now. And it’s been frustrating because I have had a situation where that I get used to medications really easily. I had no idea there’s a thing called “treatment resistant schizophrenia.” I kind of just thought my doctor once was just saying that like, oh, you’re treatment resistant almost. But that’s an actual thing. And around 10 to 30 percent of people with schizophrenia still have a lot of issues, even with taking different medications. I didn’t realize the percentage was that high. I kind of thought maybe I was in like 3 percent of people. And it really made me feel better because it’s one thing to feel like your mind’s broken and you have schizophrenia, but then be a broken schizophrenic? It’s like, well, come on.
Gabe Howard: It’s important to understand this as a caregiver, of course, because so often when our loved ones aren’t getting better, when they’re not seeing the results we want, we tend to jump to a dark place. Well, they’re not taking their medicine. Unfortunately, a lot of trust erodes during this process. It’s important to be open to the possibility of treatment resistant schizophrenia because again, 10 to 30 percent is not a low number. If you had a 10 percent chance of winning the lottery, you’d play. And if you had a 30 percent chance of winning the lottery, you would spend the money in your head. These are big numbers. So, we just want to make sure that we don’t reach a breaking point where we decide that our loved ones aren’t doing what they need to do. Because after all, if they were taking the meds, it would be working. That’s not completely true.
Rachel Star Withers: Yes. And I am still on medication. Unfortunately, I have to like regularly change it. But I also want to say, don’t just assume that you’re out there listening like, well, I’m treatment resistant, probably. So, I don’t even need to worry about it.
Gabe Howard: You should continue working with your medical team forever. You should never give up. The best chance that you have at the best life is by working with your medical team. And even if you have treatment resistant schizophrenia, as Rachel does, there are still treatments available. Even if you have treatment resistant schizophrenia, as Rachel does, she’s still in much better control than if she swore off all doctors. And as Rachel stated earlier, new technologies and new medications are coming out monthly, it seems.
Rachel Star Withers: Yes. Yes.
Gabe Howard: I swear I read about a new process, a new treatment, daily. So, don’t give up. It’s worth the fight.
Rachel Star Withers: And whether you have great response to medications or not, you still need other forms of treatment to really get you fully functioning. One is psychotherapy and there’s a few different types. But cognitive behavioral therapy, that’s where pretty much you’re changing your thinking and behavior. With most of us, that’s what we end up having. We’ll have a combination of therapy and medication kind of to learn what are your triggers. So, what might be the signs that you’re going into a psychotic episode? If there’s something that might cause your hallucinations or delusions to flare up, finding ways to avoid or stop them. And then there’s just, you know, you can just have regular therapy of how to deal with life. That helps me a lot when I can go to my therapist and just talk about what’s going on in my life. Not saying that, you know, it all has to be, I have schizophrenia, so that’s why I’m having this work issue. Sometimes you’re just having a work issue. It’s great to be able to talk to someone who understands there could be a different level with you. It might not just be as easy as, oh, ignore them.
Gabe Howard: One of the things that’s great to learn in therapy is the difference between a schizophrenia symptom and a life symptom, having trouble at work is not something that only people with schizophrenia have. But it is possible that the reason you’re having trouble at work is because of a symptom of schizophrenia. But it’s equally possible that it’s just not a good fit for you. Or the aging process, you know, maybe you just can’t work the all-night shift anymore, or maybe you can’t work on your feet anymore. And it has nothing to do with schizophrenia. Obviously, your mileage may vary depending on where you work, how much you work, what your job entails. Finally, I think that therapy is really, really, really beneficial because being diagnosed with an illness is scary. It’s a traumatic event. It’s something that you did not plan for. Nobody hoped for you to have this. You probably didn’t think about it at any point in your life. And boom, you have this scary illness that’s worth discussing with somebody.
Rachel Star Withers: And friends and family caretakers also consider like family therapy, going with someone to therapy. If you have a person with schizophrenia and they’re very resistant to talking to a doctor, it may help to just be like, hey, let’s go do this therapy together, OK? And that could be your window open. We’re having problems in the family, not just say it’s his or her fault that we’re having problems. This is the one who needs it. I have been to a family therapy before, and it’s great because it definitely takes a lot of the pressure off any one person. And that really could just be a good way to step into the water for certain people.
Gabe Howard: And this is also a good place to bring up nontraditional types of therapy, group therapy, support groups, peer support groups. I can tell you that I personally have been helped by sitting in a room full of people with the same diagnosis as me and listening to them talk about the same struggles I’ve had that they’ve had. It just makes me feel better. And one of the best moments for me was when somebody who had been diagnosed for a long time, she was older than me, she talked about getting married and buying a house. And I thought, oh, my, if somebody with my diagnosis can get married and buy a house, then somebody with my diagnosis can get married and buy a house. That opened up a whole new world for me. And it had nothing to do with therapy. Right? It’s easier to do something after you’ve seen somebody else do it. I do think that there is value and safety in numbers. So, in addition to our regular cognitive behavioral therapy, cognitive enhancement therapy, and all the different types of therapies that are done by professionals, don’t overlook support groups. Especially since, as Rachel said, it is something you can do with a family member.
Gabe: We’ll be right back after this message from our sponsor.
Sponsor: It can sometimes feel like another schizophrenia episode is just around the corner. In fact, a study found that patients had an average of nine episodes in less than six years. However, there is a treatment plan option that can help delay another episode: a once monthly injection for adults with schizophrenia. If delaying another episode sounds like it could make a difference for you or your loved one, learn more about treating schizophrenia with once monthly injections at OnceMonthlyDifference.com. That’s OnceMonthlyDifference.com.
Gabe: And we’re back, discussing treatments for schizophrenia.
Rachel Star Withers: Yes. Wanted to hit on just a few other treatment options. A lot of dealing with schizophrenia is actually going after the symptoms. More and more, they are pushing electroconvulsive therapy. And whenever I bring this up at anything, there’s always someone who gets really upset. And you do need to understand that electroconvulsive therapy, electroshock therapy, ECT, has come a long way. And that is for treating deep depression, and it really helps with catatonia in schizophrenia if that’s the situation. It really can bring people back very quickly. Most people see it as like a last resort situation. I had ECT in my early 20s and it changed my life. I would not be here if I had not had that. It saved my life. Did it have some bad parts to it? Yes. But it knocked out a lot of the deep, deep, severe depression that I was in and that helped me deal with my other symptoms.
Gabe Howard: And of course, it’s important to realize that the pop culture representation of ECT is exactly that, it’s the pop culture representation of ECT. This is a medical treatment done by medical professionals in a safe way. So, if you are considering it, don’t watch a movie. Talk to your doctor and ask what the treatment entails, what the risks are, and what it looks like. Don’t just believe the 1970s movie with Jack Nicholson.
Rachel Star Withers: It’s far more boring than you would expect. You’re like, oh, that’s not . . . okay. That’s not much to fit in a movie. Moving on to a different sort of treatment. Now, this has been around for a while, it’s the vagus nerve stimulation. And in my early twenties, the only option was you had a very quick and easy kind of little baby surgery where they put a device inside of you that stimulated it, kind of shocked this nerve. And now they have external ones. Which is great, because you just put it up against you. And this again is also to help with treating depression. It can help with thinking clear and whatnot. So again, you’re looking at these symptoms. It’s not like some great thing where I can, like, shock the side of my neck and suddenly I don’t have schizophrenia. It does not work like that. I am currently trying this. I’m still on medication, but I have currently been doing this and I can’t really tell you much about it working because I just started it. And it does take a little while apparently to take effect. And last and I was so excited, Gabe, when I saw this, no one has ever suggested this to me. Like I’m also slightly offended, is animal assisted therapy. More and more that’s been coming up to help with schizophrenia. Most of us with schizophrenia have anhedonia, where we don’t like, pretty much, experience joy or pleasure. We’re just kind of, we exist, you know, just, eh, meh, just don’t feel anything. And they have shown that animal assisted therapy, whether you’re talking about dogs, not even so much support trained animals or therapy animals, but just being around animals in general, really just ups your pleasure feelings in your brain. I was so excited because I’m like, why was that never prescribed? Why is no doctor prescribed this? But anyway.
Gabe Howard: One of the things that I think happens, of course, is that schizophrenia is very scary and we’ve all seen the symptoms of schizophrenia play out in others. And those of us who live with it, we’ve seen the symptoms play out in ourselves and it’s terrifying. And then somebody says, and I’m going to give you a poppy and we’re
Rachel Star Withers: No, no.
Gabe Howard: Like, you’re not taking this seriously. It’s important for everybody to realize that nobody is saying to pick one of these.
Rachel Star Withers: Yes.
Gabe Howard: You’re supposed to use multiple therapies. A puppy all by itself is not the only treatment that you need for schizophrenia, but it’s proven to be helpful when used in conjunction with things like medication management, family therapy, support groups, one on one therapy. It’s all part and parcel of the same thing. And as I love to say, when you buy a house, you want the house to have a lot of things. Nobody says, OK, do you want electric or plumbing? You can only have one. No, you want both. You want both electric and plumbing. Otherwise, your house sucks.
Rachel Star Withers: Yes.
Gabe Howard: So, let’s take a turn and talk about the thing that scares the hell out of people, let’s just call it like it is, Rachel. Hospitalization is probably one of the most terrifying things that both people living with schizophrenia are afraid of, and believe it or not, it’s the thing that their loved ones are most afraid of.
Rachel Star Withers: Many times, it is required. When you’re having a crisis situation, that person with schizophrenia needs to get stabilized. They might need help that a caregiver, a family member, whoever cannot provide on their own. And that is where a hospital or inpatient treatment system comes into play. A person with schizophrenia might need to be hospitalized when, if they’re in the middle of like severe delusions or hallucinations and they’re unable to care for themselves, if they’re a danger to themselves or others, and, I cannot stress this enough, especially if they are a danger to the family members. The family tends to kind of like, well, that’s just how he is. That’s just what she does. And they kind of let some very violent things go by that shouldn’t. Unfortunately, I’ve had many, many mothers reach out to me saying that they don’t want to hospitalize their child, their adult child, even though the child has pushed them down. The adult child has like lashed out at them in very bad ways. So, understand that you cannot take care of someone fully. Okay? Hospitalization is required at certain times. Another thing is, if the person with schizophrenia is dealing with any sort of substance abuse, you cannot treat schizophrenia on your own with substance abuse. And when that comes into play, you’ve definitely moved past any help of like friends and family, because that is just going to make the symptoms of schizophrenia worse.
Gabe Howard: It seems like more often than not, people think of hospitalization and jail as the same thing and nothing could be further from the truth. I have been hospitalized for bipolar disorder because I suffered from psychosis. I didn’t know where I was, who I was, and I was very, very suicidal and I needed help. I am not saying that it wasn’t scary. I am not saying that it wasn’t traumatic. And I’m not saying that my grandmother didn’t try to call a lawyer and send them to get me out because she thought that I was being held against my will. It was a traumatic time for everybody involved. But I was where I needed to be. And we have to understand, especially when it comes to treating schizophrenia, that just because something is scary doesn’t mean that it’s not helpful. Surgery is scary. Having a root canal is scary. You know, going to the doctor can be scary. But these are all very helpful things. It seems like more often than not, people consider hospitalization as a last resort and they end up there because of police involvements or they end up there because something really, really, really serious happened. And when you look back and you follow the paper trail, you find out that that person really should have been hospitalized before the police got involved or before the really bad crisis happened. And I really want to stress that point, because people who need to be hospitalized often end up hospitalized anyway. But now they have this other problem. They have a legal problem or they have something on their conscience that they can’t get off or they hurt somebody that they love and somebody that loves them. So we have to start thinking about hospitalization in a different way. And that’s just because it’s scary doesn’t mean that it is not helpful and it won’t get you where you need to go. And where you need to go is, of course, living in recovery with schizophrenia.
Rachel Star Withers: In episode two, we actually spoke with police officer Rebecca Skillern, and she runs the crisis intervention team and she’s a trainer and she actually went over different ways to respond. And the best thing is to have a plan for hospitalization way before you need it. Know what your insurances is, have things like your doctor’s info easy to grab. If a situation comes up, make sure your loved ones know the information that they need to. It’s really hard to follow out a plan when you’re in the middle of a psychotic episode. So, if possible, let people know, hey, if this happens, I need you to do this. Something that I encourage people with schizophrenia to look into is a psychiatric advance directive or it’s also called a Ulysses contract. And that’s a document and it’s specifying what you want and need with treatment should you lose the capacity to make those decisions for a period of time. And every state has different laws about this. Some are great. Some are very confusing. I did look up South Carolina’s law and I downloaded the paperwork for that and I have started the process. I am 34 and should something happen, my parents are gonna have a really hard time stepping in hospital wise, since I’m an adult. And this is just a nice, pretty great fallback plan. And I think it’s important for me to have and I encourage others to at least consider it.
Gabe Howard: Advanced directives and living wills and do not resuscitate, it’s something that we are hearing about in the media. Luckily with schizophrenia, a psychiatric directive isn’t for end of life decisions. It’s just about what you want to happen when you are not available because of psychosis or because of symptoms or because of whatever.
Rachel Star Withers: And it’s not permanent. I do want to stress that.
Gabe Howard: That’s an excellent point, Rachel. It only comes into effect if you are unable to decide for yourself and then you actually are deciding for yourself because the decisions that you made before the crisis hit. And then to your point, Rachel, as soon as you are out of the crisis, as soon as you are back, for lack of a better word, then the psychiatric directive goes back in the drawer and Rachel is walking around doing whatever she wants. I feel that it’s a very powerful therapy step as well to sit down and think about, OK, if this symptom happens, what do I want? If this symptom happens, what do I want? If I find myself in this position, what do I want? I think it’s good for two reasons. One, because if you ever find yourself in those situations, what you want will be done, and two, a little bit of planning. You know, if you’re aware of everything that can happen, you’re going to be more vigilant in preventing it from happening. So I do feel that it’s a good therapy step as well. But all of it is designed to put the power in your hands and take it away from other people. And I think feeling empowered is very important when living with schizophrenia.
Rachel Star Withers: On the opposite side of the coin, however, is what do we do if a person who is in crisis or with schizophrenia pretty much refuses help? First thing to look at, why are they refusing? What is the situation? So are they saying, you know what, you are wrong, I do not have this problem. I am not this bad. Or are they worried about something? Let’s say the side effects of taking medication or they’re refusing treatment because they don’t want people to know or are afraid of what will happen if someone finds out. And they also might be in the middle of a psychotic episode. It’s very hard, as we’ve talked about last episode, to convince someone who is actively having hallucinations and delusions of things, especially that they may need to get help. So in that situation, I suggest, provide options, provide some different options. Look, we can do this, we can do this, or we can do this. Something has to happen. We have to deal with this in some way.
Gabe Howard: And remember, those options can be, we can make an appointment with a psychiatrist, we can make an appointment with your general practitioner, we can make an appointment with a psychologist or a therapist. All of those things are good options and they all have different pluses and minuses. But the advantage is when you present that to your loved one, you’re giving them some control. They get to decide where they go and make sure when they choose it, you don’t question their decision. If they say, well, I don’t like the general practitioner and I refuse to see a psychiatrist because I’m not crazy, I want a therapist. Your response is, deal. Your response is to make the appointment with the therapist and leave it at that. Don’t do that thing where, well, what do you have against Dr. Jones? He’s been our family doctor forever. He’s such a nice man. Why would you say that? It’s tempting. I understand. But remember, you got the answer that you wanted. You wanted them to seek help, they agreed to seek help. You’re their partner. Make the appointment. Move on. You can worry about that later.
Rachel Star Withers: And to my friends, family, loved ones, please remember, get support for yourself also. It can be very stressful and you can’t help other people if you are completely burned out. If you are stressed beyond your means, you can’t step in and be there for that person. So do remember that you are important also.
Gabe Howard: It’s very important to remember that. Obviously, you wouldn’t want a doctor who’s been up for three days and who isn’t taking care of themselves, who isn’t awake. You want your loved one to have the best care, and that starts with you. Remember, self-care is advocacy. You are advocating for your loved one by being the best that you can possibly be. And with that in mind, we’d like to introduce you to the interview with Barbara Thompson. She’s the executive director of the National Alliance on Mental Illness, Indiana. And she called in to speak with Rachel about all the services that they offer, not just for people with schizophrenia, but also for their family members.
Rachel Star Withers: We’re talking today with Barbara Thompson, who’s the executive director of NAMI Indiana. Thank you so much for being with us today, Barbara.
Barbara Thompson: Thank you, Rachel. Thank you for having me.
Rachel Star Withers: Starting off, why don’t you tell us what exactly is NAMI?
Barbara Thompson: So, NAMI is the National Alliance on Mental Illness. And we’re actually a three-tier organization. So, NAMI is the national organization. And then you have state organizations, which is what I am with NAMI, Indiana. And then you have local affiliates who are at that like local level within counties and cities. And so the really nice thing about having that structure is that our national NAMI is able to create and provide programs that are research based, and they do all the curriculums and program planning. At the state level, we provide training to people who can take it into those counties and cities and provide the programs at local level. And that’s where you really get at the grassroots. So, we call ourselves a grassroots organization. And in fact, we’re the largest grassroots organization around mental health.
Rachel Star Withers: You’re over Indiana, but how big is the NAMI network or organization?
Barbara Thompson: You’re going to have a NAMI in every state, and you’ve got your state organizations as well as your local affiliates. For example, here in Indiana, we have over a dozen local affiliates that cover a lot of the state. Some NAMI states have even more affiliates. We’re kind of spread far and wide, if you will.
Rachel Star Withers: What I love about NAMI is that there’s so many different things going on, classes, support groups. Today’s episode, we’ve been discussing different treatment options when it comes to schizophrenia and we’ve gotten in to the medication and the doctor side and NAMI is really the other side of that. The not even so much emotional support, but just the community support. Can you tell us a little bit about the different support groups and classes you all offer?
Barbara Thompson: Absolutely. So, we’re really here for support. We have, like you said, lots of different types of support options on the national level. Those programs that we are really able to bring into communities all over the country are going to be support groups for individuals who are living with a mental illness, and those are called NAMI Connections. We have support groups for family members and friends, and those are NAMI Family Support Groups. We also have education classes and these are more short term but allow you to gain knowledge on mental illness. We actually have those classes for individuals, again, who are living with a mental illness, and those are called Peer-to-Peer. And we have ones for family members that are called Family-to-Family. And we even have one for parents who have younger children who are showing signs possibly of having a mental illness, and, you know, as a parent, want to know what to do. We have some additional ones for family members of veterans. There are several options that we have available where you can really find that community and support.
Rachel Star Withers: And one thing I liked going on the Web site just yesterday, I saw you have different plans and even groups and pretty much what to do in crisis situations. Which is something we actually spoke about in a previous episode, when it comes to dealing with an immediate crisis plan of what to do with someone who has schizophrenia, who may be experiencing their first breakdown.
Barbara Thompson: Oh, absolutely. So, if you go onto the national Web site, NAMI.org, there’s an entire guide on how to handle a crisis and navigate a crisis situation. We don’t necessarily plan for crises, but it’s good to have that to know what to do ahead of time for these specific types of situations, when we’re talking about mental health crisis.
Rachel Star Withers: I know I went to a support group once. It took me a long, long time to get the courage to go, which is funny because you would think, well, it’s a support group, Rachel, it’s people like you, but it did. It took me a really long time to get up that courage. What have you seen as far as the different support groups, have you seen that affects people?
Barbara Thompson: I actually was just talking to one of our support group leaders who’s been doing it for years. And one of the things that she talked about in the support group that she does is it really gives people that sense of community. And you get to see and hear about the changes that are going on in their lives and it provide you hope. So, you see other people who had, you know, these really stressful situations and start to see things get better. And that provides you hope. It’s a safe, it’s a nonjudgmental environment. It’s one of those places you can go where people understand, you know? Sometimes we’ll talk to people, you’ll try to tell people kind of what’s going on. And they’ll be like, oh, it’s not that bad. You know, kind of dismissive of your feelings. And support groups are definitely a place we can get those feelings validated. All of our programs are actually led by peers. What that means is if you’re in a support group or you’re doing an education class, that’s for families. these are led by people who are family members. If you’re going to a support group or taking one of the education classes that are for people with lived experience, the person who’s leading that class or who’s leading that support group is in fact, someone who is themselves living with a mental illness. I think that’s one of those things where you’re providing that community for people that they can talk to, someone who has been there and get tips maybe or better understand how they can cope or just again see hope in someone else and know that recovery is something that’s possible for you. NAMI being a three-tier organization, we have the national NAMI who they create the curriculums, they do the research planning on the programs. And so, we actually send our volunteers who are leading the support groups or who are leading education classes through training.
Rachel Star Withers: So one of the classes NAMI offers is Family-to-Family classes. Can you tell us a little about that?
Barbara Thompson: So the Family-to-Family classes is actually, how I got started with NAMI. My brother is living with schizophrenia and I really just took the Family-to-Family class as a support for my mother. I took it with my mother. So, I wasn’t really expecting that I was gonna get anything out of this class. So, I was really just going to support my mother, you know, as a caregiver. And taking the class really gave me the ability to empathize with what my brother could be experiencing, to better understand things like the side effects of medication, better understand how to communicate with him when maybe he’s more symptomatic. I find for siblings it can be difficult when you have one sibling who maybe is needing more of the attention, obviously having an illness. And it allowed me to look at his symptoms as that, as symptoms. Whereas had I not maybe had the education and better understanding of what his illness is doing, I might look at it more as behaviors and be upset that why is he behaving this way? But now I can look at it and say these are symptoms and I don’t have to be upset about it. I can be supportive and possibly help in his recovery. It was so helpful for me that now, you know, I want to try to help get these programs out to more and more people.
Rachel Star Withers: Tell us, how can people find out about their local NAMI chapters? How can they start to look into these great support groups and classes and just overall mental health community?
Barbara Thompson: You can really start at our national Web site at NAMI.org. From there you’ll be able to find local NAMI affiliates.
Rachel Star Withers: Thank you so much, Barbara, for talking with us today and letting us know about the different support options that NAMI has to offer. And I hope everyone out there definitely checks out your local NAMI chapter.
Gabe Howard: Rachel, that was incredible. Is Barbara as nice as she sounds?
Rachel Star Withers: She is. She is just very, very sweet.
Gabe Howard: Well, I’m glad she was able to talk to us about that, and I hope people do look up the National Alliance on Mental Illness. It’s NAMI.org. And their Family-to-Family class is a class that helped my family personally when I was first diagnosed. So, I do recommend it. It’s two and a half hours for 12 weeks. It’s extremely thorough. But this isn’t a small thing to deal with and they don’t have a small solution. And I think that shows that they are taking it really, really serious.
Rachel Star Withers: And it is the community support of it all. Just again, like you said earlier, being around other people who went through what you’ve went through. Even family and friends being able to look around and you can find other parents who are going through something or they can be like, yeah, we had this exact problem with our child. Our first episode of this season, we actually talked about stereotypical views of a schizophrenic person. You know, we’re crazy, drooling in the corner, locked away in an insane asylum. And, you know, on some level, it’s almost kind of funny to me, and you, Gabe. To other people in mental health like, ha ha, it’s crazy that normal people believe that.
Gabe Howard: How could they be so gullible, like like, sincerely?
Rachel Star Withers: Yeah.
Gabe Howard: Right? You’re like, you’d have to be crazy to believe that this is what mental illness looks like. Pun intended.
Rachel Star Withers: Right? It’s a horror movie, of course, it looks like the person starts eating people.
Gabe Howard: Yeah.
Rachel Star Withers: It’s meant to, it’s a movie.
Gabe Howard: But it’s false, it’s completely
Rachel Star Withers: Yes.
Gabe Howard: False, and if you thought about it for even a nanosecond, you’d realize that these portrayals cannot possibly be true, but people don’t
Rachel Star Withers: Mm hmm.
Gabe Howard: Stop and think about it because
Rachel Star Withers: No.
Gabe Howard: They’re not challenged to.
Rachel Star Withers: And yet so many times people with schizophrenia are so afraid of getting help. And we stereotype the treatment a lot of times as being way worse than the actual illness. You know, I hear people all the time that are like, oh, I just, I don’t want to get treatment. I don’t want to have to depend on medication. Oh, well, that’s, that’s too extreme for me. Meanwhile, they are suffering. They’re not functioning. They’re miserable. They’re not leaving their house. But they don’t want to be dependent on medication. You know? That, that’ll be way worse. Getting treatment does not make you weak. It means you’re brave because you are accepting, hey, I need to deal with something and I’m going to do it instead of just hiding from it, instead of trying to pretend it’s going to go away. Coping with schizophrenia is a lifelong process. And the word recovery does not mean, hey, everything’s good, now we chill on a beach. We are not going to experience any more challenges from this illness. It means that you are managing, that you are developing a support team. It means that you have found a way to function and you’re on your way to living an amazing life. And with that, I want to tell you all, thank you so much for listening. I do need a personal favor, though. We want to get to know you a little better. Please take a brief, three-minute, listener survey so we can better understand our audience. You guys go to PsychCentral.com/survey19 to complete it now. Everyone who completes the survey will be automatically entered into a drawing for a free, one hundred dollar, Amazon.com gift card. Void where prohibited. With that, please, like, share, subscribe to this podcast. And we’ll talk to you guys next time.
Announcer: Inside Schizophrenia is presented by PsychCentral.com, America’s largest and longest operating independent mental health website. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. For questions, or to provide feedback, please e-mail talkback@PsychCentral.com. The official website for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening, and please, share widely.