Episode 243: Living with schizoaffective disorder – with Sally Littlefield

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Carolyn Kiel: Before we start this episode, here’s a quick note about some of the topics we cover in our conversation. My guest today talks about her experiences with psychosis, delusions and suicide attempts. If these are difficult subjects for you, please use your discretion when listening to this episode.

Also, just a reminder that the discussions on this podcast do not substitute for professional medical advice. Consult a medical professional or healthcare provider if you are seeking medical advice, diagnoses, or treatment.

On today’s episode, I’m speaking with Sally Littlefield, a national speaker and mental health advocate dedicated to changing how the world understands schizophrenia. After experiencing a prolonged psychotic episode that led to a diagnosis of schizoaffective disorder, she returned to work in communications and fundraising roles at three mental health nonprofits. This professional experience deepened her insight into trauma, stigma, and systemic barriers faced by people with serious mental illnesses.

Sally’s writing has appeared in Slate, STAT News and Psychology Today, and she’s been featured in national media such as The Associated Press and the television network A+E. Now a full-time advocate, she offers talks and trainings focused on stigma reduction, recovery, and mental health crisis deescalation. Her mission is to promote empathy, dignity, and understanding for people with schizophrenia. Sally, welcome to the podcast.

Sally Littlefield: Thank you. It’s so great to be here. And I just wanna say before we get too in the weeds here, I’m recovering from a neck injury actually, so my voice is a little breathier than I would like, or than is typical. So if I have to pause to take a deep breath in, that’s just what’s happening. But I’m good and I’m excited to be here. Thank you.

Carolyn Kiel: I’m really excited to learn more about your story as well. And I think we could just start out to give people a general understanding of schizophrenia and schizoaffective disorder, could you explain like, what is schizoaffective disorder and how is it compared to schizophrenia or bipolar disorder?

Sally Littlefield: That’s a great question that pretty much everyone on earth has when I tell them I have schizoaffective disorder. So thank you for asking right up front.

So basically with schizoaffective, you have symptoms of both schizophrenia and a mood disorder, and there are two types of schizoaffective: bipolar type and depressive type. So people with bipolar type have manic and depressive episodes on top of psychosis symptoms, which is the schizophrenia part. And then people with depressive type have depressive episodes in addition to the psychosis symptoms.

And then with bipolar disorder, the symptom that like, of sort of overlaps or like envelopes, i’m trying to say, the other symptom. So with schizoaffective, you kind of start to have delusions. That’s the symptom that’s enveloping the mania, right? So for me, if I’m slipping, I will start to remember things that aren’t real, that’s delusions. That’s pretty much my first symptom always. And then I sort of get manic with time if I don’t, you know, if there’s no medical intervention.

And it’s interesting, I’m like usually so in psychosis, I don’t even notice I’m manic. Versus someone with bipolar disorder would probably identify much more with the mania aspect of their condition because their psychotic episodes only happen in the context of mania. So that’s the, the difference there.

Carolyn Kiel: Okay, yeah thank you so much for providing some background on that. In terms of the mania, is it more that you are sort of grounded and aware of what’s going on versus the psychosis where you may think it’s real but things are not real? How do you distinguish when you’re in one versus the other?

Sally Littlefield: Well, so for me, like if I’m manic, I’m pretty much already in psychosis. There’s been a few times where I’ve had mania without psychosis, but like that’s pretty rare for me. And it’s interesting. I don’t, I don’t ever like acknowledge, you know, “I’m manic” or think “I’m manic right now” because you know, if I’m really in psychosis, if I’m really far gone, I think my life is a hyperreality psychological experiment, which is like a recurring delusion that I have when I’m really far gone.

And when you think, I mean, you just have bigger fish to fry when you’re that deep in psychosis and you just don’t really like think about the fact that you haven’t slept in three days. This is, this is not like the average day in my life, by the way. This is just like when it gets very severe. But yeah, that’s sort of how I experience it.

Carolyn Kiel: Thank you for distinguishing that. Wow. So how did you get diagnosed with schizoaffective disorder?

Sally Littlefield: It was a really long journey actually, and it is for a lot of people. I think it takes, on average maybe like, I think I heard like 10 to 15 years to get an accurate diagnosis of schizophrenia for most people who have schizophrenia or I should say a schizophrenia spectrum illness, which includes schizoaffective.

I was honestly like really, I mean, schizophrenia to me kind of came out of the blue. Well it did and it didn’t. I did have a family history. A really close immediate family member had it growing up. But I guess my reaction to growing up in that kind of family environment where my serious mental illness was present was to really define my identity as being sort of antithetical to being, you know, the stereotype of someone who’s mentally ill, because that was just a coping mechanism because I saw, you know, I guess the, the destruction it can wreak on people’s lives and people’s families, and I don’t know.

So I just, you know, I went to Berkeley. I graduated. I was working for the governor’s wife, living in San Francisco, feeling very fancy. And then I started to just really annoy my roommates. I, I guess that was like the first symptom. I just talked incessantly and I redecorated our entire apartment without permission and like, like the common areas. And they did not, I mean, I think I’m a good decorator, but my manic taste, like I, I took photos before I left and like, it’s just not tasteful.

But yeah, I mean, so things were tense with my roommates for a while. And there was one night where I hallucinated and I didn’t, it was really scary. I got an email from my brother that was actually completely benign, but I thought it was threatening me. And so it was like sort of a paranoid delusion, a paranoid hallucination I should say.

And my mom took me to urgent care. I think it was like psychiatric urgent care. And I just said like, “I have no idea what’s wrong with me. All I know is I’ve never been more scared in my life.” And they didn’t diagnose me with anything related to psychosis, actually. Well, they didn’t diagnose me with anything. They just put me on leave from work. And then I saw my psychiatrist a few days later and he was just like, “I’m gonna go ahead and call this a hypomanic episode.” I’ll never forget the way he said that. It was just so clinical, like I was a specimen. So he diagnosed me with bipolar two.

There’s two types of bipolar disorder. Bipolar one involves psychosis, bipolar two does not. And so he’d like, I, I guess I just bring this up because I mean, it’s actually really interesting. They’ve done studies and if you are white, for example, you are much less likely to get a accurate diagnosis of schizophrenia earlier on than if you’re Black, for example. And that’s because of stereotypes of both people of color, or Black individuals I should say specifically, and people with serious mental illness being violent and dangerous. So it’s interesting that, that aspect of my white privilege, I think. And just, I think also being a woman, schizophrenia is less common in women, but also I think it’s just the stereotype is like a male, I think. And just being well groomed, articulate, all of that just really impeded me getting an accurate diagnosis. So I had bipolar two, took three months off work, went back to work, went into psychosis my first meeting back at work. It was so embarrassing. Went into psychosis at work, just, everyone saw.

And yeah, I mean, it was just like terrible because I thought that I was finally gonna get my life back after being on medical leave for three months for this like, undisclosed mental illness. So I should also say I totally rejected that I had bipolar. Like I did not, I refused to take medication. I. I just told my therapist, I think this is ridiculous. He said, I think it’s ridiculous too. And I just didn’t engage with treatment. And then I went into psychosis for 10 months.

I wasn’t officially diagnosed with anything involving psychosis until about six weeks into my 10 month long psychotic episode because that was when I had my first hospitalization. Like my parents were trying to get me help, but I just presented so normally that like, and I also just refused to go to the doctor.

So, but then I had this super severe manic and psychotic episode where I just like ran through San Francisco, breaking into houses and cars, climbing on top of cars, all that. Yeah. And then I got tackled by cops and handcuffed and taken to the behavioral health unit in handcuffs. And then they diagnosed me with bipolar one with psychotic features. So that’s the kind of bipolar that has psychosis. And then my delusions just didn’t go away, even after the mania went away.

And that’s, I think they typically, I mean, schizophrenia, schizoaffective is like, I think it like breaks their hearts to diagnose us with that sometimes. You know, they really are reluctant to do it because it’s seen in the medical community, even among people who should know better, as a death sentence and they don’t wanna ruin our lives. But yeah, I mean, finally, like no one could ignore or deny like I had a schizophrenia spectrum illness because I just continued to believe that my life was a hyperreality psychological experiment for 10 more months. So that is the story about how I got my schizoaffective diagnosis.

Carolyn Kiel: Wow. So then it sounds like, you know, a lot of misdiagnosis at the beginning and then, you know, you talk about being in a, like a 10 month episode of psychosis, but also sort of presenting normally in some ways, which is an interesting paradox. So, I mean, during that 10 months, did you feel that you were actually in psychosis all the time? Or were you kind of in and out, or what did that feel like for you?

Sally Littlefield: Yeah, I mean, it’s interesting. Psychosis is more of a spectrum than a on-off switch. So in the really, I guess they just say like prodromal phases, or that’s a fancy word, but basically the initial phases of an episode, you might be completely aware that your symptoms are symptoms. And by that I mean like you see a hallucination, but you know it’s a hallucination and you don’t, you don’t like let it trick you, I guess is what I’m trying to say. And you can be completely like “with it,” and that a lot of people, that’s just their daily life, right? Like I have a friend who’s actually in a PhD program and she has voices day in and day out, but she’s still able to go to class and all of that.

For me, I sort of define psychosis like, I can have delusions, but still like go to work and not really be in psychosis. But for me, psychosis is like, I believe my entire life is a hyperreality psychological experiment. Everyone around me is like in on some sort of secret plot to like, help me or, I don’t know, bring me down or something. I often think like everyone is a paid actor and like they’re being fed lines by this team of omnipotent psychologists controlling my life against my will. So yeah, I mean, for 10 months that was what I believed is where I’m going with this. To answer that was a very roundabout way of answering your question.

But yeah, I mean it just got more and more grandiose with time. Like at first I thought just like, sorry, it’s kind of painful to think about because I was in denial for so long. It was just a really painful reality. I think part of me knew emotionally that I had schizophrenia, but I just did not accept it, even though the doctors were telling me that I had schizoaffective or schizophrenia spectrum illness.

And I think like yeah, I just, it just got more and more grandiose with time. At first, like, it was just the doctors I thought were like acting on my behalf. And then I genuinely came to believe, like everyone in the state of California where I lived was like in on the psychological experiment. I thought I was destined to be president. And it’s hard because these things sound like wild. Like, how could you possibly believe that? But like, I, I mean, I’m not saying this to brag, but like, I, I went to Berkeley and like, I was always like the, the good at school kid and like the smart kid. And I just, it, it shocked me too, frankly, when I came out of psychosis that I believed that. But it just started so, it just made sense. Like I was working for a pretty high profile employer and I thought that they were in on the experiment or powering the experiment. I thought they were like financing the experiment and you know, it was the politician. So I thought the entire, you know, DNC was throwing their weight behind making my life in this experiment.

And it just, there were just signs in my surroundings that I couldn’t like, ignore. Just, I would see things that, and hear things that I just thought that just confirmed this version of reality to me. And I don’t know, I guess I feel a little vulnerable even saying this ’cause I’m like, do people here listening to this think like, I don’t know, that you have to be stupid to believe these things? I think often people do assume that we have lower intelligence, especially when we’re in psychosis, but even when we’re not in psychosis. But yeah, you can be smart and you know, that doesn’t go away just ’cause you’re in psychosis. It’s just, it’s just the fact of the condition is you just can’t tell what’s real.

Carolyn Kiel: Yeah. Yeah, psychosis really has nothing to do with intellectual ability or, or development. It really impacts all kinds of people. And yeah, our brains are interesting mechanisms and our brains create our realities.

So yeah, that sounds really hard. And being, you know, in a situation like that and, and truly believing that all of these things were happening to you and having some rationale in your head. As you said, you went to Berkeley and you were in this high powered job, so it, it made sense in some ways.

And it’s gotta be so hard to accept help from people who are trying to help you because you have this delusion that people are trying to hurt you. So that in a way, kind of isolates you additionally. So that’s gotta be a really hard situation to be in.

Sally Littlefield: Yeah, I think like so many people were just like frustrated with me. People in my life just, why can’t you just like snap out of it? Why can’t you just like accept the help? Like why don’t you listen to the doctor? All this stuff. And I just, I think people really, unless you go through it yourself, I think it’s really easy to underestimate the grieving process involved in accepting that you have schizophrenia.

And it’s interesting, like you asked me a second ago about when I got diagnosed, but that’s like, when I got diagnosed, it’s such a blip in my life history, because it wasn’t when I accepted it, because I didn’t believe it. Right? When I accepted it was just like this huge moment of just like, oh my God, am I disabled for life? Like, that’s what I was told from a lot of doctors and it didn’t end up being true. But just, I don’t know.

And then like people in my life were like, oh, you were such a burden. ‘Cause you were just being so irrational. Like you weren’t, you know, you wouldn’t listen to doctors. You just sat on the couch for a week. Like you wouldn’t participate, you wouldn’t engage in conversation. And I was just like, yeah, I don’t know. It was, it was just really hard.

Carolyn Kiel: Wow. Yeah, because you’ve got, you know, I think there’s just so much stigma and so many misconceptions and assumptions about people who have schizophrenia or experience psychosis. So it’s, you know, it’s hard enough dealing with that yourself and then to have the attitudes and stigma from society and even like close family and friends who really just don’t understand and can’t understand what you’re going through, also makes it hard to reach out and ask for help.

So it’s just such a difficult situation. And that’s, and I really appreciate you sharing so vulnerably about it because again, I think society really misunderstands schizophrenia and psychosis so much and really views it from an outside thing, whether it’s like sensationalized or stigmatized. So it’s so important for people like you with lived experience of schizophrenia to be sharing like what, what you’re feeling and what you’re thinking, what it’s really been like for you. So I, I absolutely appreciate that.

I think you talked about this a little bit before, but like what were things like for you growing up and did you have any early indications that you had schizophrenia or schizoaffective disorder? I know you said you had some family history with that.

Sally Littlefield: Yeah, not really, honestly. And that’s some people, that’s not true for everyone. Some people might have struggled with socialization growing up. I think that’s a really common way for this disease to manifest early in life. But for me it was just, it was shocking. Like it shouldn’t have been quite as shocking because like, I think if you’re related to the disease genetically the way I am, I think your odds of getting it, they go up a lot.

Carolyn Kiel: You mentioned that your diagnosis was really just sort of a blip in your journey, and that it was really when you came to accept that you had schizophrenia, was when your advocacy and life started to change.

How did you come to accept that you had schizophrenia? Like was there an event or was it just something that came together that said like, no, I, I have this diagnosis and and I’m going to accept it?

Sally Littlefield: Yeah, I mean. It’s really interesting because I, I came out of psychosis. Lemme see if I can remember the exact date. I think it was October 26th, 2019. I have it written down, but I’m, yes, it is October 26th, 2019. It’s like a little anniversary to celebrate every year. But yeah. And I, in August, 2019, I had a three week long psychiatric hospitalization and they told my parents like, we’re not gonna discharge her until she comes out of psychosis. And I didn’t come out of psychosis and they still discharged me.

I think part of it was I was masking a lot. Not even intentionally. Later, like a family member got angry at me, ’cause they were like, you know, “you lied to the doctors and said you weren’t delusional when you really were.” And I was just like, not really how it works, right? Because if you’re delusional, I don’t know, I just realized the doctors were nicer to me when I pretended I wasn’t delusional. So that’s just why I did it. And I also came to understand that if I acted quote unquote normal, I would get discharged. Like I just picked that up from context clues in my surroundings. So I did. And then I didn’t come out of psychosis for another couple months.

And I bring this up because I think like, they would surprise most people to learn how I came out of psychosis, which it was not in a medical setting, it was not in a hospital setting. It was literally just, my mom is a writer. She works for herself. So she likes to work at Panera Bread ’cause they have cheap food, it’s good. And they have wifi. So she was just there. She took me with her. And at this point I was very withdrawn. I was not talking to many people because psychosis is so isolating, right? Like, I was just living, I was all consumed by my dream reality, my psychotic reality. And like, no one wanted to talk to me about it, right? So I was just really lonely and depressed, honestly, because I didn’t have social interaction, because it’s hard to communicate with people in psychosis.

And that combined with the fact that my delusions, when I first went into psychosis, most of them were actually really cool and whimsical. And I refer to the first like six-ish months of my psychotic episode as an adventure I went on. But with time, I think it reflected my emotional state. Like I was getting increasingly antsy in the psychological experiment. I would just wanted it to end ’cause I thought I would be rich and famous when it was over. And I was just really lonely. And I think it’s definitely true that your emotional state when you experience psychosis can affect how your symptoms manifest. And so I started to have these really, like terrible, honestly just downright horrifying delusions. It’s really, it is interesting. If I ever talk about them to people who don’t have schizophrenia, they’re just like, “oh my God, you didn’t prepare me for that. That is like horrifying.” And the only people I ever really talk to about them in like explicit terms are other people with schizophrenia. ’cause it’s just, you know, if you have schizophrenia long enough, you’re gonna have delusions like this.

But just all of that made me, like I talked earlier about how powerful denial is. And, and then there’s also what’s called anosognosia, which is the symptom of schizophrenia that prevents you from realizing you’re sick. So it’s kind of, there were a couple different things going on. There’s just the, the chemical feature of the illness that prevents people from understanding that they have an illness. But it was more than that. It was really also the denial. And, at the end, I think the anosognosia went away before the denial did. And I was just sort of pushed out of my dream world because it became so painful to live in.

So I was just at this Panera Bread. And I started smoking in psychosis because I honestly don’t even know why. Like, I, I just, I mean, I did believe that when the experiment was over, the psychologist would connect me to like state-of-the-art, world class, cutting edge healthcare that would more than make up for any cigarettes I smoked. And I didn’t think I was hurting my body. But even then, I don’t, it never really appealed to me. I just started doing it. And so I was, I was smoking a cigarette outside. I went outside, outside to just smoke a cigarette. And I just, I just like pulled out my phone and I was just like, okay, Sally, like you are going to face the music right now. You’re gonna Google “characteristics of schizophrenic delusions” and see if it is what you’re experiencing. Then that’s it. Like you have to face this.

And yeah, I mean it was just kinda a lesser of two evils thing. Like no, I did not want to accept I had schizophrenia, but continuing to live in what had become a really traumatic reality was just not really feeling like an option so much anymore. So I Googled it and then I get this list from Google that’s like: delusions of grandeur, thinking messages are being sent to you through the media. Just like all these really specific things that I had been experiencing. That I just, like, do you get what I’m saying? Like getting messages sent to you through the media is like a very specific type of delusion. It’s not just like, oh, like scary delusions. It’s like extremely specific. And so I was like, that’s exactly it. And I just couldn’t deny it anymore.

And so I went back inside, I asked my mom like, Hey, can we leave? And she just said, sure. We got in the car. And I just said like, mom, I have, I like realized I, I’m sick and I have schizophrenia. And she was like, wow. Like, I don’t even remember what she said, but she made me feel comfortable and I just, I like slept in the same bed as her for like two weeks because it was just.

Like I just, I mean, in the same moment I realized I had schizophrenia, I realized I had a pretty severe case of it, you know? Because I, like my family member at their onset was not in psychosis for 10 months. And so my frame of reference was I guess, not quite so severe for what schizophrenia onset looks like. And I just, it was a really hard time, but I was just kind of like, I am gonna give recovery a shot. And if it doesn’t work out well, I’ll just deal with that later. But, yeah.

Carolyn Kiel: Wow. Thank you for sharing that and it sounds like your mom was a really great support for you throughout all of this and gave you a safe space to come out finally with this realization and, and be completely vulnerable and, and accepting of your schizophrenia.

And I think a lot of the stigma around schizophrenia that you were alluding to earlier is that, you know, you called it a death sentence. And I think that’s what a lot of people, even people who should know better think about it, is that, oh no, your life is over. You can never do anything with your life ever again if you have this horrible illness. But but there are so many people living with schizophrenia who are, are out living their lives. And I think that’s, that’s really important for people who are listening to, to realize. Even though it is a very serious condition to deal with, but it is generally not the end of the world. And as you said, it’s a spectrum, so it really depends on, on the individual as well.

Sally Littlefield: I always try to say, I kind of hate it when people look at my story and they, they reduce it to just the one sentence, like, “recovery is possible.” Because the reality is yes, some people can recover. And it’s really painful to be told you’re not gonna recover, and then recover, and it’s not even true. And then you’re like, why’d you make me go through that when it wasn’t even true?

But I mean, I have friends who are more limited by their schizophrenia than I am, and it’s not, it’s not, yeah, I, I have survivors guilt in a way because like, it’s, honestly, I’m thinking of one friend in particular who’s much more responsible than I am in terms of managing it, but I just don’t have as severe symptoms.

And I just, I always really like to stress that that does not make me better than her. Like that’s not, I actually, I think I had a lot of people who didn’t outright reject me for over my schizophrenia, but they really sent the message. It’s like, you know, I only want you on good days. Like you’re only like worthy if you recover, basically. And, I don’t know. The word recovery, it can mean so many different things for different people, but in this context it kinda meant like if you basically returned to the career you otherwise would’ve had, which I kind of did, but that was kind of not guaranteed. So, and I just think like, I, I really try now intentionally to only surround myself with people that I really believe, even if I had to be on disability for the rest of my life suddenly, like would still want to be in my life. So yeah, it’s taught me that lesson, I guess.

Carolyn Kiel: Yeah. Yeah. I think some people may hear “recovery” and think like, oh, when, when is this person going to quote unquote go back to normal? Like, when are they gonna go back to who they were? Like, you know, when they were on a good day and, and I was comfortable working, talking with them. Like, I, I don’t know.

And I, I don’t know if there, for anyone, if there is any concept of going back to normal because things have changed. And as you said, like, you know, some people may be much more affected by it on a permanent basis, may not be able to do as much, and other people may be capable of, of doing other types of things. And, and it really depends. And it’s not a value judgment on like one person’s better than another.

Sally Littlefield: Yeah, you can totally live a meaningful life, even with severe psychosis symptoms, even if you never really accept that you have an illness. I’ve seen, I mean, obviously that makes life much harder and you’re much, you’re in danger if that’s true in, in a lot of situations.

But I was just thinking about earlier this year, I was hospitalized and they didn’t have enough. I actually wasn’t relatively that sick, but they, they didn’t have enough beds in the, the sort of step down ward. So they put me in the high acuity ward with a lot of people in psychosis who had sort of gradual cognitive decline as a symptoms. Some people experienced and some people don’t. And a lot of people had it, and a lot of them didn’t really, they were like, “if I do have a mental illness,” saying things like that.

I just remember there was, I had a roommate, I have, I wanna say her name, but I won’t. But she was great. She had cognitive decline and I don’t know if she really fully grasped that she had schizophrenia, but I just remember, like, she checked out a pair of headphones and was listening to Say My Name by Destiny’s Child. And I just went up to her and started dancing with her. And we just had this great moment of connection.

And I just, I don’t know, I guess I come back to this idea of like, a lot of people in our capitalistic culture that fetishizes productivity and defines your worth as your output, really think of people who can’t produce as wastes of resources. I mean, they wouldn’t say it that explicitly, but that’s an undertone I feel like a lot of people treat people with disabilities with. When I was in psychosis and after psychosis, I did a lot of reflection on what made life worthwhile, because I had to. Because the things that used to make my life worthwhile, like conventional gold star metrics of success, weren’t really there for me anymore. And I just thought like, I mean, the thing that makes life worthwhile is giving and receiving love. And everyone in psychosis is able to do that. And it comes out in different ways. We may fear our loved ones because of the paranoia, but we still are capable of love. And I just, I don’t know, I guess I just want everyone to know that. Because I think, it’s weird, it’s like, when I was in psychosis for 10 months, I felt like a ghost in my own house. Often like people would talk about me in front of me like I wasn’t there. But people in psychosis are still people. They can still hear everything you say. They still have feelings, they still have thoughts, they can still remember things. That’s a message I really like to communicate as much as possible.

Carolyn Kiel: You’re absolutely right. In our capitalist society, we do tend to value people by their output and what they are able to quote unquote produce. That’s just capitalism. That’s not anything human related. So a lot of people with disabilities do tend to get, like, pushed by the wayside or stigmatized or dismissed because of that.

And it’s so important to realize that your, your value is not in your output. Like your worth is not in what you’re able to be productive and do. So, yeah, it’s really important and to remember that, you know, disabled people are people, so kind of fundamental things, but I think people may need more reminders about that these days. Some people.

Yeah. Wow. Again, thank you so much for sharing your, your story and your journey with me. How do you experience schizoaffective disorder now, and how does it impact your everyday life?

Sally Littlefield: Well, I would say I’m fortunate that it doesn’t impact me on a daily basis. But the flip side is like, at least for me, every once in a while I have acute severe episodes that are honestly dangerous. And yeah, it’s, it’s pretty fresh to talk about, but I’ll share it with you all since you’re all being such a great audience, i’m sure.

When I was hospitalized twice earlier this year for psychosis, I had a string of stressors in my life. So this is how it happens for me typically is I just, I have like sort of the perfect storm of factors in my life. So what had happened to me was I had to go off the medication that was working for me because of an insurance interruption, which was really stressful. And so my stress went up and I wasn’t on the best medication for me. And then I just had like a couple big stressful events in life that were unrelated. And I also, it’s, it sounds weird and I’m almost reluctant to say it because I feel like it’s just gonna sound weird and people won’t understand it. But one of the biggest triggers for me in getting delusional is having a conversation that I like ruminate and spin out about later on, which I think a lot of people can relate to. But the problem for me is like, when I have an anxiety spin out about this conversation I had, and I’m replaying it again and again in my head, the seams of my real memories come apart and all the fake memories come brushing in and I start to remember things that never happened. So basically that’s what happened both times. And, and then I just get like sucked into the memories. And it’s, I’ve been known to like walk around. So like I was doing this. In February, I was like walking down the street in Alameda where I live, and talking to myself and my mom was like following me on the phone with mobile crisis. Like, hey, like she needs help, she’s talking to herself.

And you know, I, I started to have issues. Or, I hate the word “issues” because I, I like to think like if someone’s not hurting someone, then what’s wrong with their presentation or the way they’re showing up in the world? And I wasn’t hurting anyone, but I just, so, I just think that’s a little stigmatizing. But I was just behaving in ways that were kind of earning me stares from my neighbors and stuff like that. So that’s kind of how it happens.

And then yeah, I mean, to go back to what I was saying earlier, like it’s, psychosis can be really dangerous. It can be, it can be whimsical and beautiful sometimes. Sometimes honestly, I have delusions that are really positive memories and I don’t realize that they’re delusions. I think they’re real memories and I obsess over them kind of as a form of escapism. Like I escape into my psychosis in a way. Not intentionally, ’cause that makes it worse, but it happens. But psychosis can also just be downright terrifying.

And yeah, so in March I had delusions so severe, I tried to end my own life for them. And it was just a really humbling experience because I did not want to die. If I had been lucid, I would not have done what I did. But I just, I don’t know. I guess that’s just how powerful this illness can be.

And it just brings up a lot for me because, I dunno. Earlier on in my advocacy career, I was a lot, I think I, I rebelled against involuntary treatment a lot more because I thought that it felt infantilizing. It felt, like I’m a Berkeley grad. You don’t get to tell me that I can’t make my own medical decisions. But honestly, like sometimes I need that or I will literally end my life. This was actually the second time I’ve had a suicide attempt driven by psychosis.

So I’d really love to say like that doesn’t, I think, take away from the whimsy and beauty of some of my psychotic episodes. And I do still view it as the single greatest adventure of my life. But it’s just, I don’t know. That’s why I take my meds. That’s why I avoid psychosis at all costs, even though sometimes it’s enjoyable. It’s just because I don’t wanna die. And it’s just such a vulnerable state.

We’re actually, this isn’t really related to what I was just talking about, but just sign out on that topic. We are 14 times more likely to be victims of violence than perpetrators because it’s so vulnerable. Sometimes people call schizophrenia an invisible disability. I, I prefer the term dynamic disability because it becomes visible sometimes, like if you’re talking to yourself in the street. I’ve walked through the streets of downtown Oakland at four in the morning, like talking to myself. And I, I’m sure people, when I’m in psychosis, I don’t think people look at me and think schizophrenia. I think they look at me and think drugs.

And I’ve, I’ve had like cops, you know, be like, oh, she’s on meth. She’s probably homeless. Things like that, when I was just in psychosis and just disabled. But I just bring this up ’cause you know, on a good day when I’m not in psychosis, like today I can fend for myself, but when I’m in psychosis, I dunno. I’ve talked to doctors about like that experience and they accept that like, wow, it’s like shocking that you weren’t the victim of a violent crime. Because yeah, I put myself in dangerous situations sometimes when I’m in psychosis. And it’s just, it’s just incredibly humbling to know that I just have to accept that I have that potential to endanger myself. And there are things I can do about it, like I can take my meds, but there’s also like, you can’t really, psychosis isn’t a choice, right? So there’s also not everything I can do about it. So I just have to live with that possibility, and that’s been something I’ve been working on accepting recently since this happened in March.

Carolyn Kiel: Wow. Yeah. Thank you so much for sharing that story. I, I think it’s so important for people to understand, you know. I think the stereotype of a person with schizophrenia is that they are, you know, a dangerous and scary person, but really the danger is, they potentially can become victims of other people who want to take advantage of them. And that’s where the danger truly lies. Much, much more than anything else. So, and I think people don’t realize that, so thank you for highlighting that for people.

Sally Littlefield: Of course. Yeah. It’s, it’s unfortunate because a lot of advocates without lived experience, so caregivers, doctors, et cetera, they really like to resort to these violent stereotypes to justify the expansion of involuntary treatment and I mean, I think that’s not really how it typically manifests for most people. Like you said, we’re much more likely to be harmed than to harm other people. And so I just don’t think that narrative is ever justified in that context.

Carolyn Kiel: Yeah. What types of treatments or supports tend to work well for you?

Sally Littlefield: Yeah. So I just think like my journey with antipsychotics is such like a love hate relationship because, I don’t know. I mean, most people with schizophrenia do have to take meds. Not all I, I do have friends who don’t take medication and are able to work and things. But I mean, I just, I need medication and that is, it’s just hard when you have the potential inside yourself to just, I mean, go into psychosis and just completely lose control of your own brain, it’s just hard to accept that, like, yeah, I mean, if I stop taking my meds, I will, I mean, I just talked about potentially try to end my life and that’s hard. So I’ve just reflected on the emotional journey, I guess, because the first thing I think of when I think of the treatment that I need is long-acting injections. So I think people think of psychiatric medications as tending to come in pill form, which I think is true for a lot of conditions, a lot of treatments. And most antipsychotics are available, I think all maybe are available in pill form. But there’s also been a push within schizophrenia treatment to get them in injection form and then to proliferate the injection form.

Because honestly, I mean, at the end of the day, like when you have schizophrenia and in my case bipolar disorder as well, it is just really hard to take your meds on a daily basis. And it’s just weird because for years I was working these like, you know, full-time professional nine to five jobs. Like, everyone’s like, “wow, you have schizophrenia and you work full-time, like you’re so functional!” And I just like could not remember to take my meds. It was just like, it was just weird. I was really ashamed of it. And it’s just, it’s been such a journey to accept that I have to be on a long acting injection.

But it’s also in, in our community with people with schizophrenia, there’s a lot of distrust of healthcare. And long acting injectables, unfortunately, yeah, I mean, in an ideal world, clinicians would present them as like a first line of defense because when you’re on an injection, the research shows that relapse rates go way down. Risks of suicide goes way down. All of that. People are just more able to enjoy prolonged recovery with LAIs. Some people are able to take oral meds, I’m just not one of them. And it’s just unfortunate because clinicians tend to present them as like a punishment almost. Like, “oh, you can’t take your medication. Like if you don’t take it, it’s gonna be the injection for you!” And then you’re like, oh no, that sounds bad! I don’t wanna do that.

And also just, I mean, just accepting that you have to be on antipsychotic medication is, even if you rationally on some level, know that like intellectually you do, it is just such an emotional trip that like, it’s just a lot. It feels like coercion and control to have an antipsychotic in your body for a month. They last a month or three months and you can’t get it out. It’s just, I mean, just think about the loss of control that comes with having psychosis in the first place. Losing that form of autonomy. And I’m not just talking about losing control of your mind, I’m talking about getting restrained and like physical or chemical restraints, like getting tackled in a psych ward, getting sedated, things like that, which can be necessary for safety. But even when it is, it’s still very traumatic and I think autonomy becomes really sacred in that context. So that’s why we distrust LAIs. Long acting injectables, LAIs, same thing.

But yeah, I mean I was hospitalized five times in 10 months. And then I you know, I talked about having a, a suicide attempt. Earlier on, this was in 2023, I jumped in front of a car and I lost a tooth and my front tooth this is Vic right here. Oh, I guess it’s a podcast, so you can’t see, but I just pointed my tooth.

Carolyn Kiel: Mm-hmm.

Sally Littlefield: And that was just kind of a wake up call that like, like I just can’t take orals. I need to be on long acting injectable. And I enjoyed a year and a half of prolonged recovery on them. And then I had, you know, this insurance issue I talked about earlier, but I’m back on them now, which is great. So I would say that’s like kind of the number one thing for me.

And then beyond that, it’s kind of like all the classic things that help any mental health condition. Socializing and going on walks and living a balanced life, not getting too stressed, avoiding substances, all of that.

But I guess one other thing that might be more specific to schizophrenia, I don’t know, that I wanted to mention is just, it really helped me to know and then act on the knowledge that I had the right to pick my providers. Because I don’t think, I just say this because I don’t know if the average person who’s like freshly diagnosed really understands that. Like I went to an early psychosis center. I was assigned a therapist and a psychiatrist, and I just felt like stuck with them and I don’t wanna be a burden and like ask for someone else. But they were both very discouraging of my recovery. Or not discouraging, but just like, you’re not gonna recover. They didn’t really give space for me to grieve that. I mean, it wasn’t even true. But if I had been true, that would’ve been a lot to grieve and they didn’t really gimme space to grieve that.

I’ve also just had, you know, I, I’ve written an article actually about how much stigma I face from medical providers of any kind, mental health professionals or otherwise, who just see my diagnosis on my chart and treat me completely differently. And it’s just like with psychiatrists, I, I feel very condescended to by a lot of them. I, I feel like I wanna be like, “Hey, like I did go to a fancy school too! Like maybe I could have gotten into med school one day, like in another life.” Because they just look at me and like, I have to remind them I work full time. They just assume I’m on some form of disability. And they always assume I have substance use issues, which is just an ableist stereotype that just wears you down and it’s hard to deal with.

So I bring this up because if anyone listening to this podcast has schizophrenia, maybe is newly diagnosed and they’re just feeling kind of meek because, I don’t know, you’re just sort of told like you’re a danger to society, you’re a burden. Like if you wanna be less that way, you have to do everything the doctor tells you. Like, and yeah, I mean, in general, following medical advice is good, but if your doctor is not supporting you and making you feel seen as like a whole person and supported and just not working for you, you can totally switch providers. So I think like people hear the phrase “doctor shopping” and it’s generally frowned upon, but honestly, like I’ve just, over the past like five, six years, I’ve just slowly assembled like a dream team of like superhero doctors. So I have like my PCP, my dermatologist, my eye doctor and then my psychiatrist and my therapist. And I’ve just slowly like, curated this little collection of providers and they all treat me well. And you know, even the ones like it, it sucks, but like, even if it’s not really relevant, like I have to tell my dentist I have schizoaffective just because they ask if I’ve ever been hospitalized and stuff when I go there. And so it always comes up. And you deserve, frankly, someone who’s not gonna make you feel bad about your diagnosis.

Carolyn Kiel: Yeah, absolutely. That importance and that ability to be able to choose your own doctors and providers because yeah, not every provider is a good match for everybody. So that’s important. Absolutely.

So then how did you eventually decide to become a mental health advocate and, and start sharing your lived experience publicly and help supporting people?

Sally Littlefield: Yeah, so it’s interesting. I started doing it really early on in my recovery. Okay. So I came out of psychosis October 26th, 2019. I had a relapse over Christmas 2019. One of my favorite essays is called Merry Christmas from the Psych Ward. I’m sorry, one of my favorite of my essays. Not my favorite essay of all time. But yeah, and it’s just about that hospitalization and I, I really like it. But yeah. And then, so seven months later I returned to working full-time. And then within a few weeks of returning to work full-time, I started just sending like cold outreach emails to the local NAMI chapters. That stands for National Alliance on Mental Illness. It’s a big grassroots mental health organization, probably the biggest one in the United States for anyone who doesn’t know. And they have chapters pretty much everywhere that provide really great support for people with serious mental illness and their families and a variety of other services too.

But yeah, and I think my motivations, I mean, it was a few things I think. I think the biggest thing was just like, this sense of like, I get it now. Like I understand psychosis, like I, I thought I did before because I grew up around it. I thought in some ways, like I’m more qualified to speak to it than someone who has it because I don’t experience anosognosia. Like, I am in touch with reality. So, and like I witnessed it, then that gives me some sort of perspective on it. And it does. I’m not saying that being a caregiver for someone or being a family member to someone with psychosis doesn’t. It does give you some insight, but the only way to fully understand psychosis is to go through yourself, I think.

And I think the biggest thing was just like, when I was in psychosis, it was so confusing the way people were treating me. Like I, I had this idea of myself, this is going back to why I didn’t accept my first few diagnoses along the, the trail was that I just had this idea of myself as too functional to have schizophrenia. And I also, at the same time, was starting to believe that I would be president and all these like, delusions of grandeur, rich and famous, all this stuff. And like everyone around me was just treating me so terribly. I had a therapist that’s like, ” if I have to work this hard to pull information out of you, therapy isn’t productive.” And then just canceled all my sessions. I had like, yeah, I mean, I would, I would talk to myself on the street. I would pick up other people’s used cigarette butts and smoke them because I didn’t understand germs because of my illness. And I got stared at a lot. And it was just not the way I was used to being looked at, as someone who never struggled with hygiene. Like I was in a fricking sorority in college, you know? Like I was very conventional feminine presenting. And it was just weird to be looked at. It was painful to be looked at this way, frankly. And I just thought like, I need to humanize this. I just felt like I was so different from what people were projecting onto me and what people were seeing when they looked at me was just so inaccurate to what I actually was.

I started my advocacy career as a writer. And it wasn’t like I set out to be an advocate, I just kind of was like, I’ve always liked to write. And like, I mean, the thing about getting schizophrenia is it gives you tons of material for life because it’s like such a weird experience everyone’s curious about. So I just started writing about that. And I wanted to tell people that psychosis was not terrifying all the time, Has I actually looked back on it, certain parts of it fondly. So that became a couple essays. One called My Schizophrenia Has a Soundtrack and another called Schizophrenia Was The Greatest Adventure of My Life.

I also really wanted to tell people that I didn’t get dumber, I just believed things that weren’t real. So that became an essay called A Window Into Psychosis: What People Who Talk to Themselves Are Really Saying. And I just wrote about, just the content of what I said when I talked to myself on the street. And it was smart stuff. Like it was informed by, as I wrote, my UC Berkeley education and my addiction to NPR. I remember like solving, quote unquote solving like net neutrality and our toxic relationship with Russia, like all of the geopolitical problems in the world, I solved while I was smoking other people’s used cigarette butts and talking to myself on the street. And like, okay, maybe my solutions wouldn’t have worked in the real world, but they weren’t crazy. Like they were something anyone who took like Poli Sci 5 at UC Berkeley like I did might have reasonably said, you know?

And then another message I wanted to communicate to the world was that we remember things accurately. And that might seem like a lower stakes message, but it was just, I think that justifies excessive force when we’re in psychosis often, is people just think we won’t be traumatized ’cause we won’t remember it. That certainly happened to me. So that was another one. That one was called What I Learned About Psychosis From My Police Records, if that’s like a request I went through getting my police records to check my memory and see how much I can trust my own mind.

I just bring those all up as examples of just, yeah, I just really, it’s the most random like inexplicable wild adventure journey you can possibly go on. I just felt so misunderstood and I just needed, like, yeah, it was nice to get published, but I just needed like my friends and family to understand me and just writing it down in written form was something I could share with them and that really helped.

So for like the first year I did advocacy, I only did little blogs here and there. I didn’t tell anyone in my job. Like I was totally trying to pass at work. Then I got offered the TV spot like a year in and I was just like, okay, can’t like, cat’s not going back in the bag! I’m just gonna be out with my schizophrenia and hopefully future employers don’t care. And it’s worked out for me ever since. So, yeah.

Carolyn Kiel: Your writing I think really provides a very unique perspective that doesn’t really get shared very often about, you know, what the experience of having schizophrenia is really like. Wow, that’s really valuable. And yeah, and very cool that you got to be featured on TV talking about your experience because yeah, it’s really important for people to learn about it from people who have that lived experience.

Sally, it’s been really great talking with you and thank you so much for sharing your experience, your lived experience of having schizophrenia.

How can people get in touch with you if they wanna read your writing or just learn more about your advocacy?

Sally Littlefield: Yeah, so I have a website I’m very proud of. It’s a little bit of a work in progress. I’m currently going back and forth with my website guy, but it does, I think, look pretty good. It’s just SallyLittlefield.com. Very easy to remember. There’s a Contact Me form on the website. I do check it, so anytime you wanna drop me a line, you can always reach out to me there. My email is also on my website.

And then I am, you know, getting active on social media. As I say that I feel a little, I dunno, I guess imposter syndrome or just, I don’t know, a little, like, don’t wanna be one of those people, but I will give you my handles if you want them. So I am most active on LinkedIn under Sally Littlefield. I’m also on Instagram. Just launched an Instagram recently. Very excited about it. It’s called schizophrenicsally, all one word. No periods, no spaces, no hyphens. And yeah that’s where you can reach out.

And I have just recently switched to doing schizophrenia advocacy work full time. So I’m very open to hearing from folks. I have a very open-minded approach to it right now since I am so new to it. So yeah, any potential collaborations, potential ways I can help others, I’m all ears.

Carolyn Kiel: Wonderful. And yeah, I can put links to your social media in the show notes of this podcast. And remind me again what is, what’s your website address?

Sally Littlefield: www.sallylittlefield.com.

Carolyn Kiel: Okay. I’ll put that in there too. Very cool. Alright, so yeah, Sally, as we close out, is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Sally Littlefield: Yeah, I mean, I guess I just would love to hear what anyone thought of this podcast or just, I don’t know. I always just, every time I get a message from someone that is either thanking me, like or just expanding on what I do or you know, people tell me about what they’re working on, that really means the world to me to just be in conversation with folks who have either gone through something similar or even maybe never have and don’t know anyone, but just learn something from what I did. So yeah, I’m always available if anyone wants to reach out. That would mean a lot. Thanks.

Carolyn Kiel: Wonderful. Yeah. Well, thanks again, Sally. It was great talking with you. And yeah, thank you again for sharing your experience and helping to de-stigmatize and spread awareness about what it’s like to have schizophrenia. Thank you so much.

Sally Littlefield: Of course, my pleasure.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at Beyond6seconds.net. Until next time.