One of the scariest things about schizophrenia is the very beginning, getting that diagnosis and learning that you — or a person that you love — has a lifelong serious mental illness. Especially in the beginning, it can be a difficult thing to accept. In fact, many people reject the idea that they’re sick at all, often choosing to think, “Hey, I have a problem, but I don’t need help” instead.
However, accepting a diagnosis of schizophrenia is the first step to getting treatment, which is the first step toward living a full and fulfilling life.
Host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard share their personal journeys coming to acceptance of their diagnosis and ways that family, friends, and caregivers can help their loved ones in this episode of Inside Schizophrenia.
Guest Leif Gregersen, writer, teacher, and public speaker living with schizoaffective disorder, joins to discuss his journey of accepting his diagnosis and his need for treatment.
Leif Gregersen is a writer, teacher, and public speaker living with schizoaffective disorder. He currently has twelve books in print, three of which are memoirs of his lived experience with mental illness. His most recent book, “Alert and Oriented x3: A Snapshot of a Severe Psychosis” is available as a free download from his website, www.edmontonwriter.com.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.
To learn more about Rachel, please visit her website, RachelStarLive.comm.
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.
Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline Media podcast. I’m your host, Rachel Star Withers, here with my great co-host, Gabe Howard. One of the scariest things about schizophrenia is the very beginning of it, is getting that diagnosis. That’s with any serious mental illness. That’s a difficult thing to accept. A person may fully reject the idea that they’re sick, that they have a problem. They might just think, hey, I have a problem, but I don’t need help. I got this. Accepting a diagnosis for schizophrenia is the first step to getting treatment.
Gabe Howard: It’s very reasonable to understand why anybody would reject a medical diagnosis like this. It’s serious and it’s scary. And many people are going to say, well, yeah, you know, schizophrenia, it you lack insight. It doesn’t, you’re not thinking in the right mind. No, I think that everybody, every human, upon hearing really serious medical news is like, nuh-uh. Right? The denial kicks in. I really sincerely believe that you would be hard pressed to find anyone who was given a serious diagnosis. A serious medical issue. Just finds out about it and is immediately like, I completely accept that. That sounds perfectly reasonable. What can I do to move on? There is a natural, understandable grieving period and obviously people with schizophrenia are absolutely no different.
Rachel Star Withers: Joining us later in the show today is Leif Gregersen, who is a writer, teacher and public speaker living with schizoaffective disorder. He’s going to be sharing with us his own journey of accepting that he had a serious mental illness. Gabe, how did it go for you with accepting that you had bipolar? Was this an easy thing for you? Was it did you have that knee jerk reaction of, no, I don’t have this? How did it all go down for you? Because me and you have different stories.
Gabe Howard: I was diagnosed in a psychiatric hospital and I was 26 years old and I was told that I had bipolar disorder and I did believe it. I did not deny the diagnosis. I was like, this makes sense. I read the little pamphlet and it started to line up. But what I do want the audience to understand is that I thought I was dead. I thought it was a death sentence. My understanding was that I was going to have to move into a group home. My understanding is that I was I was going to be like a ward of the state, that I was never going to get better. I had very One Flew Over the Cuckoo’s Nest vibes. I had, you know, institutionalization vibes. Sincerely, Rachel, that everyone I knew with bipolar disorder, they were famous people so very publicly died by suicide. And I thought, well, they’re rich, they’re wealthy, they’re famous, they have way more resources than me. And they couldn’t beat this illness. So therefore, I couldn’t beat it either.
Rachel Star Withers: Before you went into hospitalization for the first time, were you suspicious? Were you kind of going in thinking, okay, I probably have a mental disorder of some sort, or was it completely a shock to you?
Gabe Howard: Complete shock.
Rachel Star Withers: Wow.
Gabe Howard: I had no idea that anything was wrong. I thought about suicide every day of my life. And see, here’s the problem. When you think about suicide every day of your life, that’s just the way life is for you. And because mental health wasn’t discussed, because my family didn’t talk about it, mental illness wasn’t taught. I believed all the stereotypical things. You know, mentally ill people are violent, mentally ill people are rocking back and forth in a corner, drooling. Mentally ill people come from bad families. And I didn’t come from a bad family. We, me, my family, everyone around me really bought into the stereotypes of mental illness and therefore completely missed all the giant warning signs that Gabe had psychosis, that Gabe had bipolar disorder, that Gabe had depression and that Gabe was suicidal.
Rachel Star Withers: And I feel that’s so interesting because for me, it’s the almost exact opposite. I grew up having hallucinations, but I thought everybody did. And it wasn’t until I was 17 that I realized, oh, I’m different. And things just kept spiraling out of control. So by the time a few years later when I did get my diagnosis, it was a relief because it was like, Oh, okay, this is what this is. I’m not just a freak of nature. This is something that there’s books about that other people have that. It really was kind of like that relief of, Oh, I’m not just some sort of broken, messed up human freak. There are other people like me and they’re getting treatment. So for me, it really was it was a relief to get a diagnosis of, hey, this is what you have. Look, you have a textbook example. Like it’s so well known, we have a textbook that could have been written about you, but it wasn’t.
Gabe Howard: It’s fascinating that you say that because I did get there. I did get to the point where I was like, oh my God, I don’t have to live this way. These feelings that I thought were normal that everyone was struggling with, I can I can find a way to cope with, get rid of, move past. And it also allowed my family to approach me differently. And I think that that’s something that’s really, really important for me because my family was very much of the Gabe is a jerk, right? Gabe is problematic. Gabe is belligerent. Gabe doesn’t listen. Gabe is always causing the family problems. And they thought that it was because, frankly, because I was bad, right? They really assigned my behavior into the bad category. As soon as I was diagnosed and they started educating themselves, it moved out of the bad category and into the okay, how can we help him? It was no longer a moral value. It was now a okay, how do we band together, rally around Gabe, get him the supports we need and move forward?
Rachel Star Withers: Now that we know what it is, we at least have a roadmap of how to treat it. And those of us who’ve been living with serious mental disorders know that it’s not a simple road map and a lot of it doesn’t work for you. But at least there’s something. And I think a lot of that was with me also. It was, okay, we know the medications. All right, now, we’re going to do this. This is our next step. Okay. When this doesn’t work, we’re going to do this. Getting a diagnosis of schizophrenia can mean different things so to different people. For one, I think the scariest thing is that you feel that you can’t trust yourself. This isn’t like a physical thing that you okay, my hand is messed up. Something, it’s like, you know, it’s like my brain is messed up. I can’t trust my own thoughts. And that’s a scary thing to have to accept. I always see why people would deny it. Because your whole world falls apart when you think you can’t trust your own thoughts. There’s also the fact that you’re probably going to have to be on medication for the rest of your life. Now, once you accept that, hey, I have schizophrenia, you’re accepting that there is no cure. You’re accepting that this is a lifelong thing, and I can see where I’m like, hey, I’d rather delay this acceptance for a few more years. But that’s just that’s just not how life works.
Gabe Howard: And of course, I really think a big one that maybe doesn’t get enough discussion is the fact that remember all of those stereotypes, misinformation, discrimination against people with mental illness, people with schizophrenia? They grew up in the same world as everybody else. So they believe a lot of those things, too. So now there’s this idea that, look, I’m not violent, I’m not antisocial, I’m not drooling in a corner, I’m not I’m not any of these things. And and now people are looking at me like I am and I don’t want to be looked at like this. There’s also the self-stigma. Well, I guess now I’m bad too, and I don’t want to think myself bad. So rather than change my thought process on all people with schizophrenia are not in fact bad, which is very difficult, especially if that’s all you’ve known your whole life. It’s much easier to say I don’t have schizophrenia and leave your worldview intact. None of this is easy. Pretending that the whole thing isn’t happening is a lot easier than accepting a lifelong diagnosis of schizophrenia. But we do need to move to that acceptance.
Rachel Star Withers: Accepting the diagnosis means that you need help, that it’s time to start that journey of help. I have had so many conversations with friends over the years where they’ll be telling me that they’re depressed or something and I’ll bring up what have you tried antidepressants? They’ll be like, Oh, no, it’s not that bad. Okay. All right. Well, you just have been talking the past hour about how depressed you are and suicidal, but oh, no, I don’t need medication. And I’m like, okay, So but I take antidepressants. Do you think that? Well, no, it’s different for you. And it’s kind of funny because I see that denial in them. I had a friend recently talking about marriage problems and I said, Well, have you tried a marriage counselor? And she was like, Oh, no, it’s not that bad. Okay, but you’re talking about getting divorced. You don’t want to get divorced, but it’s not that bad? Just the thought of I don’t really, we don’t need that type of help yet. And that is that those are denials. That is not accepting the problem. And the reason is because if I accept it, now, I have to treat it.
Gabe Howard: You have to do something; you have to act on it. You have to move forward. And all of those things are frightening because for most of us, we weren’t given these tools because nobody thought we needed them.
Rachel Star Withers: Yes.
Gabe Howard: Rachel, I’m curious, when you were handed this, didn’t you just want to put it down and just walk away from it and just be like, Yeah, I don’t I don’t want to deal with that.
Rachel Star Withers: I think definitely when it came to medication, it was just very overwhelming. The reality of the side effects, how long it takes for medication to work. Like it was just like, I don’t want to go through this stuff. I don’t have a choice. But yeah, I don’t, I don’t really want to do this. Two very interesting definitions I found one was for denial and the definition I read was refusal that a stressor exists. And I like that. Just refusal to like believe that, hey, this is this thing in my life is bothering me and acceptance is accepting that a difficult situation is real and it must be addressed. I love both of those and I think the acceptance one really captures schizophrenia, that this difficult situation is something real and it’s time to address it. If I don’t, my life is going to continue down a path that is not healthy, is not good, it’s dangerous even.
Gabe Howard: Rachel, is this all or none? Do you have to completely accept that you have schizophrenia or completely deny it?
Rachel Star Withers: No. And that’s where it can be kind of confusing if someone might accept that they have schizophrenia but deny, oh, well, this isn’t, you know, a hallucination. Well, these aren’t delusions. I don’t I don’t have it that bad. I have some delusions, but I can deal with them on my own. For a lot of us with schizophrenia, that’s kind of like a dangerous area of, like, half acceptance. I kind of half accept what’s going on, but not all the way. So, I might be getting treatment for some of it, but I don’t want treatment for all of it. And that as far as our treatment plans, is going to hinder us. If you’re out there and you only like partially accept, that is a good first step. I always want to say that’s a good first step, though, is to accept something. All right. So, take baby steps because, hey, in a year you might accept more. That was definitely my journey, was that I accepted the diagnosis right away. A lot of the treatment stuff, I didn’t want to accept. But as I continued to get worse, I didn’t have a choice. It was okay, now I have to go on all of these medications, all five at the same time, juggling left and right.
Gabe Howard: So, then what did you do once you reached that level of acceptance? Was it smooth sailing? Everything’s happy. You’ve accepted it. It’s now. It’s now time for recovery.
Rachel Star Withers: I know it’s just constant because schizophrenia to me is always changing. And sometimes you’re better, sometimes you’re worse. I think it’s hard to accept when you’re worse, especially if you’ve been maintaining, you’ve been managing, you know, you’ve been hitting it out of the park and then suddenly you go downhill and you have to go back to your doctors and be like, hey, we got to we got to rework everything. You know, this what this medication that’s been working for three years just doesn’t anymore. And I have to start this all over again. I hate changing medications. I will delay it as long as possible because I just I don’t like going through that cycle of what it takes to find what works. I have to do it and eventually I’ll be pushed to do it. But no, I try and hold out as long as possible, which isn’t healthy because the only person I’m hurting, of course, is myself.
Gabe Howard: To be completely fair, these are reasonable things for scared people to think. I don’t know that that has anything to do with psychosis, schizophrenia, bipolar disorder, serious and persistent mental illness. Being afraid of medical treatment is a very human thing.
Rachel Star Withers: Yes.
Gabe Howard: And often when people with schizophrenia are afraid of their medical treatment, afraid of their symptoms, afraid of changing medications, afraid of what’s happening, people are like, oh, they lack insight. They don’t understand. Again, I think that you would be very hard pressed to find anybody with any cancer diagnosis or somebody who needed heart surgery who wasn’t afraid. And could you imagine if, oh, I’m afraid I need a triple bypass and I’m going in for surgery tomorrow and I’m afraid. Oh, you lack insight. You know, being afraid of the triple heart bypass shows that you don’t understand what’s going on. And that’s a symptom of heart surgery. Nobody would say that. This does complicate the situation. And of course, it can lead a person to feel isolated, alone and increase their level of anger and hostility. You’re allowed to be scared of physical treatments, but you’re somehow not allowed to be concerned or scared about mental health treatments.
Rachel Star Withers: Also with schizophrenia, you have to understand that part of the symptoms of schizophrenia is not thinking rationally. Normal life. I’m very, very rational. However, if I’m in the middle of a psychotic episode and you’re trying to tell me, Rachel, you need help, but I’m believing very strange thoughts, there may be nothing you can say or even that I can say that’s going to make me believe that I need help because I’m having a psychotic episode. My brain is not working normally. Also, you could be having hallucinations and delusions that are telling you things. For instance, your delusions might be telling you, Hey, nothing’s wrong with you. This person is trying to hurt you. This person is trying to trick you. It’s one thing when someone you love says, hey, you need help, but at the same time, I’m hearing voices that are saying you can’t trust this person. They just want to destroy you. They just want to make you sick. They want to control you. Loved ones of people who have schizophrenia understand that it can be very difficult for them to even comprehend what you’re saying, because they might be hearing completely different things constantly in their head.
Gabe Howard: Rachel, I want to ask why acceptance is so important? Because there’s lots of conversations about forced treatment, assisted outpatient treatment, medical compliance with like long lasting injectables and things that really happen to people with schizophrenia against their will. And many people hear, well, their acceptance is not important because, after all, we have all of these other interventions. But acceptance is very important. Right?
Rachel Star Withers: Yes. In fact, active acceptance of specific symptoms of schizophrenia, like hallucinations and delusions has been found to be associated with perceived control and being able to understand and have more insight into those symptoms. It’s not even just a treatment thing there. It’s okay. I’m understanding what’s going on more. It’s not going to make those hallucinations go away. But you understand maybe what’s happening. Also, they found that individuals, when they accept their diagnosis, are more willing to work with their support groups, the people around them, and educating them and saying, how can you guys help me stay on my treatment plan? I think that’s huge because that’s the big difference between me fighting the treatment plan, you forcing it on me and me saying, yes, let’s do this. And by the way, I might not always want to do it. I need other people to help me stay on this path.
Gabe Howard: Rachel, I love that. I love that explanation and I love why it’s so important for people to accept their diagnosis, even acknowledging that it’s very difficult to do so.
Rachel Star Withers: One thing we hear about a lot in life is the stages of grief. I’ve heard about that from, like from school, from TV shows. And I never until I was doing research for this actually thought about it when accepting a mental disorder. Like, yes, you do go through the stages of grief, denial, rejecting that this is happening to you. In the beginning you might be saying, Hey, it’s not that bad. You know, it’s just in my head. This isn’t like a serious thing, rejecting that thing that’s going on, ignoring your symptoms, even hiding your symptoms. The second stage of grief is anger. Why me? Being angry at your doctors, being angry at your family. Why did you do this to me? You guys caused this. Angry at yourself. I’m the cause of this. I think that’s the Taylor. The Taylor Swift song right now. Hi, it’s me. I’m the problem. It kind of like that. You’re like, Wait a minute. This whole time I’ve been messing things up. I can’t blame anyone but myself. Then depression, bargaining. What if the doctor’s wrong? What if this. Well, I don’t need it that bad. You know, some people really need help, but I don’t.
Rachel Star Withers: I’m not that bad. Okay it with me. What if it’s not that big a deal? I don’t think I really need that much help. A scary one that is brought up to me a lot is, well, what if it’s really a spiritual thing? That always worries me. It scares me more when other people ask me, Well, Rachel, how are you sure your hallucinations are not you seeing into the spiritual realm? Oh, boy. Loved ones, please don’t. Don’t bring that up. That’s only going to hinder someone from getting help. And my response is always, if you saw the things that I saw, if you heard the things that I heard, the thoughts that I did, you would not want to live in that world. I think people think the spiritual realm is like, oh, you see angels and butterflies. And it’s just like, I don’t know, like The Matrix and cool and exciting and no, it’s not. It’s not. It’s a torturous thing and it’s not a spiritual realm. And then that final stage of grief is acceptance and accepting the reality of what’s happening, accepting the pain, accepting the responsibility. It’s not just saying, hey, I have this disorder, it’s okay, let’s do this. I’m ready to face it head-on.
Gabe Howard: Many of our listeners are caregivers, family members, friends of people that live with schizophrenia, and they play a vital role in helping people reach acceptance and staying accepting for lack of a better phrasing. What can they do to help?
Rachel Star Withers: First off, you cannot force someone to accept that they have a problem. If you’ve ever tried to convince someone they’re drunk and they shouldn’t drive, it is so hard because, no, I’m fine. I’m fine. And you’re trying to take their keys and like, no, I’m fine. I’m like, No, you’re not fine. And they’re like, No, I am. Trust me, I’m fine. You’re like, No, believe me, if you’re pulled over right now, you would get a DUI. I’m taking your keys. Many times, the person becomes belligerent. It can be like that when you’re talking about medical diagnoses also. You can’t force the person to be like, Oh, okay, you’re right. I have a really bad problem. Here are the keys. I’m ready to do all the treatment. It’s just not something you can do. What you can do is celebrate the little wins. Okay, so I might not be fully on board, but, okay, yeah, I have a problem.
Rachel Star Withers: And I’m willing to at least start looking into it. Just like that little meme, you know, a win is a win they keep doing. I love that because, hey, a win is a win. All right. Take those little wins. If you’re the caregiver, if you’re the loved one, take little wins where you can. Be like, great, they know they’re hallucinating. They still don’t believe that I’m a person they can trust, but at least they know they’re hallucinating. Take that win, okay? Don’t be upset that they didn’t jump in the deep end. When you’re talking to your loved one, try to understand their point of view. Like put yourself in their situation. Okay. If you had just been told if you’re going about your life and someone tells you, Hey, everything you think is incorrect, how would you respond? Place yourself in their situation. Ask questions, avoid statements. Some really good questions I found were What does accepting your diagnosis mean to you? In other words, asking the person, you know, if you accept that you have schizophrenia, what do you think’s going to happen? What does that mean to you? You might be surprised by the answers. They might be like, Well, that means that I’m an idiot. Well, that means that everything’s wrong or that means that you no longer trust me. You don’t really know what’s holding that person back. Another good question, what kind of evidence do you need to be convinced that you have this disorder? And that’s a really good one that gets people thinking, okay, here are the symptoms of schizophrenia, hallucinations, delusions, depression, the negative symptoms, the positive symptoms, and actually comparing it to their life.
Rachel Star Withers: And that can be very eye-opening when you’re like, oh, wow. Actually, I check all these boxes. Another is why don’t you want to take medication? What are you afraid of happening if you take medication? Why don’t you want to go to a doctor? And the last one I love is What are you afraid will happen if you get help? Probably the number one answer is, well, they’ll hospitalize me. They’ll lock me away. I’m always told that. And that was something I thought was if I if I actually tell the doctors what’s going on in my head, man, they’re going to lock me away for so long. And in reality, it’s really difficult to lock people away and there’s a lot of steps you have to go through. So just asking, what is it that you’re afraid will happen when you get help? It could be that they’re afraid they’re going to lose their job. It could be they’re afraid of losing you, your family members. Maybe you’re not going to trust me around your kids anymore. You know, these are all valid things. And it’s good to just ask to get their point of view what’s going on with them.
Gabe Howard: I want to touch real quick that you might not be able to have this conversation with your loved one, depending on where they are in their illness process.
Rachel Star Withers: Yes.
Gabe Howard: And that’s why you as the family member, the support system, the caregiver, you got to pick your moments. So often we have shows like this and people are like, Oh, well, there’s no way that I could have this conversation with my loved one. They’re just they’re just they’re so sick. They don’t understand anything. They think that a dragon is chasing them. And we always ask back as politely as we can, Is that 24/7? And they’re like, Well, but most of the time, okay, most of the time it’s not all of the time. Can you pick their moments? Is there an opportunity? When are they, you know, are they more pliable in the morning? Can you have this discussion in the evening? It’s really important for people to understand that a lot of these conversations, everybody wants to have them in crisis. As soon as something goes wrong, as soon as there’s unrest in the house, as soon as there’s a crisis moment, they’re like, aha, I’m going to pull out the questions that Rachel just said. That’s not the right time. It’s a bit like having a fire drill when the house is on fire, it is too late.
Gabe Howard: You need to figure out when things are calm, when people are rational, when people can remember the skills that you’re going to teach them, you know, reading the exit signs, lining up single file, where to meet you want everything to be reasonable and calm and then have the conversation. And so many people are like, well, but I don’t want to have it then because we’re having a good day and I don’t want to upset the apple cart. I understand. Rachel understands, but our goal is to get you to as many good days as possible.
Gabe Howard: And we’re back discussing accepting a schizophrenia diagnosis.
Rachel Star Withers: Of course, after acceptance, what is the next step that always comes up? Well, Rachel, well, now they, they’re starting treatment, but what can I do as their loved one? You know, I can’t take the medication for them. I can’t go to the doctor for them. You can go with them if they want you to. But your next step as a loved one is helping them create their new normal. Helping them understand that, yes, there are going to be some major changes and you’re right there and you’re totally going to help them roll with it. I did a workshop recently and in it the leader of the workshop was Dan really cool. He said, When you’re doing martial arts or anything physical, your style should change every five years because your body changes so much in five years. And he says, So you should have a whole new style and you should be working with your body. And he’s like, the things I wanted to do when I was 30, I can’t do now in my late 80s, but I can do a lot of other cool stuff that I never cared about in my 30 ‘s, but I can do it now in my late 80s, and I love that. When I was thinking about treatment, I think looking back on my life, that’s kind of how my treatment’s been. Every few years I have to have it like majorly adjusted and I can’t even tell you why. Why the medication stopped working, why suddenly I started having different types of psychotic delusions? But yeah, I have noticed that. And I kind of like that idea of expecting the change. Looking ahead and being like, okay, you know what? Probably in the next 2 or 3 years I’m going to have to switch up my medications again and being actively ready for that.
Gabe Howard: Rachel, I love what you said there because I think we all have that older relative in our life who still thinks that they can do what they did when they were 20.
Rachel Star Withers: Very true. Sometimes it doesn’t matter what you say, your loved one is not going to listen to you. And one of the best things you can do is help them find others who’ve already been through it. Whether it’s a book about someone with schizophrenia, whether it’s a podcast by someone with schizophrenia, talking. When I was first learning how to navigate my disorder, I got a book called “An Unquiet Mind” by Kay Redfield Jamison, and she’s a psychologist who also had manic depressive, which later became renamed as bipolar. And her writings about being psychotic, it was just incredible because I was like, I identify. It was like I could have written that. And that’s what touched me. And the fact that she was a psychologist and it just blew my mind. And that helped me, you know, really start leaning into my treatment because I was like, I want to be like her. She wrote this incredible book. She’s so smart and it sounds like she has what I have. It’s also one of the reasons that on this show I go out of my way to try and find other people with schizophrenia who are doing amazing things in life.
Gabe Howard: And Rachel, you do not disappoint. You found another great guest. Leif Gregersen. He’s going to share his story of living with and accepting that he has schizoaffective disorder. Let’s go ahead and play that interview now.
Rachel Star Withers: Today, we’re speaking with Leif Gregersen, who is a teacher, public speaker and writer with 12 books to his credit. Thank you so much for being with us, Leif. So, right away, give us like the quick tour of who you are.
Leif Gregersen: Um, well, I like to think of myself as an advocate for the mentally ill. Um, I write a lot of articles, op-ed articles about mental health and around a lot of people who are just generally underserved, homeless people who are mentally ill, people with addictions who are mentally ill. Um, I sort of feel that my own mental illness has given me an insight and a viewpoint and even a mission to be able to help others who are going through what I went through and maybe make their journey not so quite so difficult.
Rachel Star Withers: Now, three of your books are actually memoirs. Can you tell us about those?
Leif Gregersen: Well, when I was young, I always wanted to be a writer, and I learned early on it was actually a trick my brother taught me as a teenager. He said, If you want to relate to girls, get them to talk about themselves.
Rachel Star Withers: That’s smart.
Leif Gregersen: Yeah, I realized that talking about ourselves is something we’re just very comfortable doing. And so I wanted to start by writing a book about myself, you know, because it was that much easier to, to write about. And I knew the subject. So my first book was called “Through the Withering Storm,” and that book is a memoir of my teen years living. Um, it actually says on the cover of my teen years with bipolar, although my diagnosis was later changed to schizoaffective disorder, which is a combination of schizophrenia and bipolar disorder. My second memoir came a couple of books later. I wrote a couple of different books, poetry and different things. And then I wrote my second memoir, “Inching Back to Sane.” And I wanted to tell the story of after I admitted that I had a mental illness and accepted that I needed treatment for it. It basically tells a story of my recovery. The third book that actually came quite a while after my recovery. What happened was I had been taking medications and they were working very well for me and I was doing well. I had, you know, I had published books. I had given a lot of presentations for the Schizophrenia Society and things were going really well. But then my medication was changed and the new medication being an antipsychotic didn’t work very well at all. And the problem that ended up happening was I slipped right back into psychosis as severely as I ever had, perhaps even worse. And it was a very difficult time of my life. I ended up having to go into the hospital for five weeks for treatment. And so that was where my third memoir came out. That’s called “Alert and Oriented x3,” which is kind of a nursing term that assesses a patient, like if a person is alert and oriented to person, place and time and different things like that. So, “Alert and Oriented x3” is actually quite a unique book because it includes poetry I hand wrote while I was in the hospital ward. It includes essays I wrote, a lot of different things. Um, it even includes my clinical notes from the hospital visit, and I really wanted to just give an accurate snapshot of what psychosis is really like in that book.
Rachel Star Withers: When did your first signs occur that you were having some sort of serious mental disorder?
Leif Gregersen: Well, it goes back a long ways. I can recall being just a toddler and from watching TV and stuff, I had an idea of secret organizations like the CIA, and having thoughts that my family had been replaced by another family and that there were there were cameras behind the walls watching me and stuff like that. Into elementary school, I had a lot of depression and I was always had my head down and it was always, always sad and things like that. My dad did a lot of things to try and ease me out of it. One of the things he did was to take me on trips, and it seemed if I went on a long car trip, like to the mountains or something like that, that I would I would come out and I would be able to interact with my brother and sister and play like a child and stuff like that. My first hospitalization came when I was 14. What had happened was I, I had been put into air cadets, which was something I really loved. It’s sort of a youth organization where you wear military uniforms and you do different things. Air Cadets was was a really positive experience for me. But the trouble was it was so positive, I started to obsess with it and I was wearing like army uniforms to school and I was carrying matches and jackknives and all these sorts of things.
Leif Gregersen: And what really culminated in in the big event that made my parents most concerned was I got a hold of a BB gun, which I didn’t have permission to have, and I was shooting out my neighbor’s windows. And all the windows needing to be replaced in my neighbor’s house, it was like a six, $6,000 worth of damage and something had to be done. And so, I was sent to my mother’s psychiatrist and he decided that I should come in for two weeks of observation. I left the hospital and for the next maybe four years, I didn’t take any medication or anything and I, I was just in crippling depression. And the only thing that seemed to get me out of it was having a few drinks, and that would shoot me into sort of the manic phase. And this sort of went on for a while. And then in my second year of grade 12, I actually started to have delusions and hallucinations. And that’s when the diagnosis of schizoaffective disorder started to come up.
Rachel Star Withers: What was the turning point for you when you decided that I need to get help for this?
Leif Gregersen: I was forced into help the first few times, and it was very difficult for me to admit that I had a problem. I went into the hospital, you know, just ranting and raving, thinking that I was a millionaire. Thinking all these different things. The hospital got me better within a short amount of time with medication and treatment and care, but I didn’t admit that I had a problem. When I finally admitted I had a problem was when I sort of reconnected with someone that I really cared about. She got quite concerned over my declining mental health and didn’t know how to deal with it, so she just cut off all contact. But I just decided that, you know, I had enough of living, you know, a marginalized life of dealing with depression, dealing with hallucinations and things like that. And it was it was a very difficult time. And I just decided that, you know, I’m going to take any treatment I need.
Rachel Star Withers: What was your first step when you decided, okay, I need help, I’m accepting this. What did you do?
Leif Gregersen: Um, you know, it was funny because the first help I got, um, I remember I was staying in a traveler’s hostel in Vancouver, and I had a very disturbing dream. And it was a dream of such reality or realism that I was unsure as to whether it happened or not. And it was it was a really terrible dream. And I got up to kind of clear my head and go for a walk. And I went for a long walk. And I started thinking that I was in I that I had been transported forward in time, that that I was in a replica of Vancouver, that I was in the future, it was on the moon and that I was a robot. All these different strange things. And but part of me knew I really needed help and part of me knew that, um, you know, I had to get to a hospital somehow. But I was so ashamed of having a mental illness. I ended up going to a payphone. Yeah, this was a long time ago.
Rachel Star Withers: Yeah.
Leif Gregersen: Um, but I’m going to a payphone and calling 911, and I told them that I thought someone had put hallucinogenic drugs in my food because this was the lie that would get me out of the guilt of, uh, of being mentally ill. And a police constable came down and he saw through my, uh, my lie pretty quickly and he brought me to the hospital. They assessed me and they put me into treatment. And, um. I was I was defeated. I was, you know, just completely, you know, at at the worst level of my life. I was I had lost so much weight. I hadn’t been feeding myself properly, you know, all these things. And I just decided, you know, I have to comply, comply with treatment.
Rachel Star Withers: There’s a lot of people with schizophrenia, bipolar, schizoaffective disorder that struggle to accept a diagnosis. What advice do you have for them?
Leif Gregersen: Um, you know, just, um, some advice I give to a lot of people is, is to keep a written journal and to, to write down, you know, how you’re doing each day, your thoughts, things like that. And I think, I think if a person who is suffering from a mental illness keeps a journal and then goes back over it and takes an honest look at at what they’ve said and what they’ve done, they should be able to get a pretty good idea of their own mental health. And if their mental health is something that’s, that’s a concern. Um, then it can be really important just to talk to a psychiatrist. Talk to a counselor. I don’t know, the advice is just to look honestly at yourself and decide, is this the life I want to keep leading? You know, do I want to keep on being so depressed? Do I want to keep on having delusions? Do I want to keep on doing things that drive people away from me? And just I think the most important thing is that life can get so much better if you accept medical science and get the proper treatment for your for your illness.
Rachel Star Withers: What were some of the ways that you got through difficult times in your life, like when you were in the hospital?
Leif Gregersen: Well, you know, one of the most significant times I remember was I was in the lockdown ward. Um, I had one friend. It’s always so essential to have a friend when you’re in the hospital. We were sitting in the smoking room, which was really the only place to sit during the day, and the walls were just brown with tar and there was a small TV going that that was just playing something I had no interest in. And I was just sitting there and I was practically fuming. There was smoke coming out of my ears, you know, and I was just stagnating. And my friend was drawing something. And just out of nowhere, he said, Do you like to draw? And I said, Well, you know, I really do like to draw, but I’m not very good at it. And he just he handed me this picture of a tiger and he said, Here, try and draw this. And he handed me a blank piece of paper and a pencil. And I started just, you know, just sort of trying to follow the artistry of it and everything. And after a few minutes, I was starting to really get into it, you know, and it was just really interesting to see the shape of the tiger’s back and the tail and all these different details.
Leif Gregersen: And, out of nowhere, my friend just said, you see, now we’re no longer in a mental hospital. And it just that that moment, you know, I realized that I was focusing on something and it was taking me out of my situation. And that’s one of the big things I try to emphasize to my students when I teach creative writing classes at the hospital is that they can get themselves out of the mental hospital by, you know, maybe by writing poetry or writing in their journal or, you know, doing drawing or doing anything creative, you know? Um. Yeah, that’s the way I would suggest people try to, to deal with difficult situations. Just find a way to focus, find a way to get yourself out of the situation.
Rachel Star Withers: So, many times people have advice and it’s kind of like, yes, write in a journal, draw a picture paint. But they’ve never explained it the way you just did,
Leif Gregersen: Hmm.
Rachel Star Withers: Saying it’s like taking you someplace else. I love that because I’m usually the one who rolls my eyes when someone tells me to write in a journal. I’m like, Oh my God, do you know how many journals I’ve written in? But I love the way you just described. It’s like, yeah, you can take your yourself someplace else,
Leif Gregersen: Yeah.
Rachel Star Withers: See it from different views. A journal can actually be a best friend because you can you can write down all your thoughts and feelings and everything, and you can trust that they’re not going to they’re not going to tell it to anyone.
Rachel Star Withers: For family and loved ones who are watching someone struggle with accepting their diagnosis. Honestly, is there anything they can do? Was there anything that the people in your life could have done to make you accept your diagnosis quicker?
Leif Gregersen: Um hm. I don’t know if my diagnosis could have been accepted quicker. Sometimes. Sometimes you really need to go through the difficult times. Um. Yeah. As far as family members go, there is a way to sort of have an intervention. You can kind of just get the whole family together and just say, you know, we know you’re struggling. We know you’re hurting. There’s help out there. I know it’s difficult to admit that you have a problem. I know you don’t you don’t want to admit you have a problem. You don’t want to take medication. But basically, we’re here because we want to support you. And we’re sadly going to withdraw that support if you don’t get serious about treatment.
Rachel Star Withers: One thing that I think is so cool about you is you actually teach a class now at the hospital you were treated at.
Leif Gregersen: Actually, two classes now.
Rachel Star Withers: Okay, how is that? That seems like going full circle to me. Tell us about that.
Leif Gregersen: It’s a really amazing experience because I get to sort of interact with patients who sometimes are going through what I went through. There’s some long term patients who may never leave the hospital, and I just try to give them a little snippet of, uh, of what life can be like when they, when they concentrate and focus on something like writing. Monday when I went there, my class ended and I walked out and I saw my first Canada goose and basically Canada geese are, are migratory birds. They leave during the winter and they come back in the spring. And just, just seeing that Canada goose gave me a real feeling of new beginnings, you know. And this Canada goose just kind of symbolized the new beginnings that I’m trying to give to my patients.
Rachel Star Withers: Do you have any poetry from some of your work that you would like to share with us in our listeners?
Leif Gregersen: There is something. Now, back in on January 4th, my dad passed away and he was an incredible support to me. Uh, this is my book, “Alert and Oriented x3.” And my dad wrote a foreword for it. So, here’s my dad speaking. Then came the big breakdown that removed every hope we ever had, The realization that Leif was now beyond any hope. That there was no help would ever come was finalized. The devastation was impossible to comprehend. During a ski trip to Jasper, Leif became increasingly incomprehensible. The reports we received were mixed and differed in what happened. We gathered that the group had eventually left Leif to his own devices, apparently feeling stretched out, not alone, just off by himself. Within a day of returning home, Leif was admitted to U of A hospital and remained there for a short period. He was later sent to Alberta Hospital. From there, it became a treadmill in and out of hospitals, experimentally discharged only to become violent and be forced back into a setting he had become very fed up with. Having alienated himself, it was impossible to live with him. Violence, destruction were repeated again and again. The next years passed, with Leif living more like a derelict than anyone deserves. Ultimately, he was given decent living quarters in a group home. The beginning of a return to normalcy began. The progress did not stop and is still going. Today, Leif can boast of the accomplishment of writing ten volumes of books. Unable to find a publisher, he single-handedly conducted a sales campaign that has yielded great results and kept him fairly affluent, also in part due to support received from people who became his friends.
Rachel Star Withers: Why was that passage important to you?
Leif Gregersen: Um, just. Just a matter that being able to see it from my dad’s point of view. Like all my life, I had no idea that my dad saw that I had a mental illness and that he was trying to help me in any way he could. You know, I just have these these ideas in my head of an authoritarian parent, you know, don’t do this. Don’t do that, you know? Um, you know, there was some corporal punishment involved in growing up. Um, but my dad was doing the best he could, and he was really, um, as I got to know my dad when I when I was older, I really found him to be an incredible human being. And, um, looking back, being able to look back at that and see what he, he, he went through while I was growing up really touches me quite a bit.
Rachel Star Withers: That’s amazing. And thank you so much. I know there are loved ones, family members listening right now who are in the exact same boat, and they’re at those different stages, whether it’s they’re dealing with a teen to a young adult, to an older adult, to even like their parents, you know, and how can they help them with this diagnosis that they’ve now received?
Leif Gregersen: It’s funny because, well, my dad started to decline with dementia before he passed away for, for quite a while. And, um, you know, I found the best thing I could do for him was simply take him for a walk. You know, it was just something. Um. There’s something about walking about, you know, having a little light exercise, some fresh air and some good conversation and some companionship. Um, that I think helps such a great deal with people who were struggling. And that was something that my dad did for me when I was younger. I had a very difficult hospital stay at one point in my life, in my late 20’s. I was in the hospital for six months and I got out and I was a wreck. And my dad took it upon himself to come and pick me up every day, take me to the beautiful Edmonton River Valley, and we would just walk for an hour. And this daily exercise, you know, it just it did so much for me and it’s something I did for him when he was struggling. So yeah, I just wanted to recommend that as, as probably one of the best things you can do with a family member who’s, who’s having difficulties.
Rachel Star Withers: I love that. It’s simple advice, but definitely so helpful. Now, how can our listeners learn more about you and your books?
Leif Gregersen: Probably the first step would be to go to my website www.EdmontonWriter.com. E D M O N T O N W R I T E R dot com. Uh, you can also go to Amazon and look up my books. If someone was interested in a book or wanted to contact me with any questions, I have an email. Viking3082000@yahoo.com. And I’m more than welcome to answer any questions people have or you know if someone was interested in having some books mailed out or something like that. Um, very happy to connect with people. I actually find quite, quite often that when I do interviews that people with, people who are struggling with family problems and mental health in their family reach out for advice and direction and stuff like that. And I’m always willing to help people.
Rachel Star Withers: Thank you so much for sharing your life and your works with us today, Leif. I hope all of our listeners check out your website and check out your wonderful writings. Thank you so much for joining us.
Leif Gregersen: Thanks for having me.
Gabe Howard: Rachel, great interview as always. I’m required to say that in every podcast episode. I was really surprised. I really was, because while his journey was different, it did mirror yours. It mirrored mine. There were so many similarities, even though there were also lots of differences. What was it like for you to to listen to that? Did you feel the same way?
Rachel Star Withers: I did. And he was so good at explaining things and I loved that he had so many simple things to try. So many simple like just things you can do, whether you’re a loved one or you’re the person with schizophrenia. One of the things he was saying was just walking with them, taking them on a walk. And I thought thtat was really powerful how his dad helped him with his schizoaffective disorder by walking and talking with him and just spending time. Then as his father got dementia, he did the same thing. He walked with his father. And I was I honestly, I thought that was beautiful. You know, you have one person helping the other accept something and then kind of paying it back, being able now to help that other person. I just I thought that was beautiful. The other things that he said was the drawing being able to draw or write and it taking you away to a different world, you know, to get you out of this, to give you a break. I never thought of journaling that way. I’ve always thought of journaling as, okay, this is what happened. And I hate to journal. I hate it. My counselor is always on me about it. But the idea of I can write for it to take me away, to give me a break from this, that’s really cool. And it’s a break that I control. It’s not like I’m breaking from reality in a psychotic episode. It’s like, no, I’m taking a break, drawing whatever I want and I’m in control of this break. Those simple ways to accept life. That was incredible.
Gabe Howard: The walks with his dad were so meaningful for me as well, because so often in these discussions it’s what are the caregivers do for people living with schizophrenia? What is the support system do for people living with schizophrenia? And even people living with schizophrenia are like, I don’t know how to give back. I don’t know how to reach equality or become an equal or a partner in this because of everything that we’ve been through. This this is a monumental thing. I don’t think anybody listening thinks that going for walks with your father, who is experiencing dementia is a small thing. It’s a huge thing. And I, it touched me a lot to Rachel.
Rachel Star Withers: Leaf Gregersen’s overall story I think was that acceptance is a journey and many times it’s accepting something repeatedly. Accepting that now you might need a different type of help. Now your symptoms may be worse. Now you might not be able to work like you did. Now you might need help with your family. Accepting a diagnosis of schizophrenia means that you’re making room in your life for schizophrenia and its symptoms. You’re acknowledging that having schizophrenia is something that’s out of your control. You’re taking steps towards treatment and management and understanding that this is a lifelong journey. Some days are going to be worse. Some days are going to be better. But acceptance is a process. Thank you for listening to this episode of Inside Schizophrenia. Please like share, subscribe and rate our podcast and we’ll see you next time on Inside Schizophrenia, a Healthline Media Podcast.
Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at psychcentral.com/is or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.