Second-Generation Psychosis: A Brave New World of Recovery
Guest Post by Sarah An Myers
Sarah An Myers is a writer who examines her lived experience to inform her scientific reporting and creative nonfiction. She has an MA in behavioral neuroscience and an MFA in creative writing from The New School. She is currently working on a memoir-in-essays about her experiences with schizoaffective disorder, reflecting on symptoms against the changing political and cultural landscape over the past 10 years. She blogs for Psychology Today and is active on X: @sarahanmy.
I am a 30 year-old writer who was diagnosed with schizoaffective disorder when I was 23. Five years before my diagnosis of schizoaffective disorder, my child psychiatrist had put me on an antipsychotic as a mood stabilizer to treat PTSD and major depression, and it also happened to treat my hallucinations and delusions that I wasn’t aware enough to tell anyone about. I decided to go off of all the medications I was on for various reasons when I was 22. What followed was a 9-month episode of raging mania, hallucinations, and delusions that left me finding myself in the back of Ubers at 5 am, getting drugged by strangers, on a plane every three weeks, and in the bed of some guy’s place I didn’t know every ten days.
Eight years later, I am mostly functioning. However, the path I took to get here was rife with obstacles that included the difficulty of explaining the nature of my disorder and my recovery and communicating that to my friends and family. As a result, I have spent the past 7 years working through internalized stigma, growing my own insight, working at several jobs before realizing I couldn’t function in the 9-to-5 schedule, and finally coming to accept that my “neurodivergence” was going to put me on a tremendously different path from the way society was set up. So, no 9-to-5, overpowering sleep patterns, and frequent unpredictable times of illness where I might need to drop everything I’m doing to block off time to recover at any instant.
I have had tremendous support from my family—financially, emotionally, and mentally. The support mainly comes from my father, who grew up with two siblings who were diagnosed with schizophrenia at an early age. When I was diagnosed, he was familiar with it all enough to immediately put me in the care of the mental health industry. The effect was that he raised me to be a fully functioning adult who now independently lives in New York City. I was able to get two master’s degrees in behavioral neuroscience and creative writing and I now run a blog at Psychology Today, where I identify the “gaps” in the existing cultural literature and seek to provide the general public with information and hope needed to empower people and to escape the state of despair that often accompanies a schizophrenia diagnosis, which can seem like a death sentence.
Nowadays, I spend a lot of time looking through the scientific literature on schizophrenia and psychotic disorders. I am not an academic researcher by any means, but I do believe that a lot can be done by working with people like me who can integrate the scientific and academic literature with our lived experiences to offer insights that can guide future research and treatment.
Lived experience, heterophenomenology, patient insight, or whatever you want to call it—it seems increasingly apparent to many, professionals and patients alike, that taking patient self-observation seriously is important for clinical recovery as well as scientific understanding.
Insight—a Growth Mindset Trait or an Impossibility?
There was an interesting article I found while writing for my blog at PT by Lopez-Morinigo, et al. that detailed how schizophrenia patients who received metacognitive training and reflection were shown to have increased insight compared to the controls post-intervention. In particular, the skills listed included cognitive insight, self-reflection, illness awareness, and awareness of psychosis as a concept. What I gathered was that the study brings up the possibility that metacognitive understanding can serve as a basis for recovery.
Studies like these seem rare. And if the studies are rare, then it is rarer for those findings to be applied in psychotherapy. Some can argue that a “growth mindset” trait, an idea that encouraged the capability of “learning neuroplasticity and the ability to get smarter” to intervene on the effects of stereotype threat (introduced by Claude Steele and Joshua Aronson), is actually already the exact premise of psychotherapy, but there is obviously some hesitation and barrier to applying that mindset to patients with psychotic disorders. Such hesitation fails to provide patients with environments that encourage the acceptance of reality, which serves as a catalyst for addressing realistic concerns and can potentially prevent patients from falling prey to anti-psychiatry and anti-illness philosophies.
Recovery was difficult for me—my goal was to have a life where I could find myself among people who were activists, cultural leaders, and creatives who I admired for their ingenuity. The barrier to getting to that place was my unwillingness to face the ways that my disorder was contributing to my dysfunction. My delusions of grandeur made me think I was contributing the same ingenuity as others, even though nothing I was doing was the slightest bit remarkable. If I didn’t have the language to explain what was going on, how was I going to be able to produce quality work and explain to my increasingly hostile social circle that I was actually suffering from an illness which inflated my sense of importance, that I wasn’t intentionally trying to be cruel, mean, and volatile, and that I was existing behind a mental barrier that I needed help to come out of?
How many general friends and family would know what to do with an illness that affects only 1% of the population and occurs in a woman who doesn’t “look” schizophrenic? There was little room to exist in the middle, and because of that, I even neglected the fact that I was psychotic. Grappling with the confusion of this dichotomy of expectation over the past seven years has likely slowed my progress. My caregivers had more linguistic capability to explain my situation than I did. In their words, “You’re just a person with problems, just like everybody. Your problems are unique, but we are not going to treat you any less. The goal is to just get you to treatment so you can live a full life.”
My ability to catch up to their understanding was a process of climbing through mud. The only way I can effectively communicate this is to take readers on a journey through the seven years of my struggle. In essence, I am joining the growing, but still woefully short, lineage of patients of psychotic disorders who have offered a public narrative of their experiences. At this point in time, my methodology of incorporating first-person accounts through narrative and academic knowledge fits only within the realm of creative nonfiction.
But not everyone can get to that point. What kind of treatment allows individuals to write a personal narrative, and is that personal narrative vital to restoring elements of the self? Under theories such as the Ipseity-Disturbance Model, schizophrenia is a distinct loss and breakdown of the self. One of those potential losses is the ability to have a narrative that aligns with reality. One could argue that to restore sanity, one would need to bring back that ability to self-narrate in a way that also matches up to others’ observations, in a way that would be calibrated with the outside world instead of the isolated one that frequents psychotic episodes. .
Gualtiero Piccinini, a philosopher at my institution, has built upon Daniel Dennett’s notion of “heterophenomenology” (phenomenology of another, not oneself) to advocate for a self-measurement methodology of first-person data. He sees heterophenomenology as a type of instrument that can be “calibrated and set up properly,” and for which a scientific discussion can take place regarding “what can and cannot be reliably measured by the instrument under the relevant circumstances.” This approach to first-person data also applies to first-person reports and observations of recovery from mental illness.
Learning Recovery
My aunt, who was diagnosed with schizophrenia when she was 14, became stunted at that age and could not develop the insight to recover adequately. As a result, she lived in an unkempt house with her older brother, diagnosed with schizophrenia, where there was exposed flooring and inches of dust due to the compulsion of pacing and hoarding from a lack of caregiving and support.
She often used her teenage self as a fantasy to go back to. Often, she talked to my father for hours about how she wanted to get married and have sex well until she was 60 years old. She often went shopping for clothes, and she would purchase pants for her grown womanly figure that were too small by several sizes, as if in her mind she were still younger and smaller, leaving parts of her body far too exposed to be considered appropriate.
We assumed that she was beyond the point of return, so we didn't intervene. I can’t help but think that the prejudice prevented us from acting more directly to encourage her to be more functional. When I asked her what she wanted for her birthday at the age of 61, she looked at me puzzlingly and told me, “No one has ever asked me that before!” She then looked down in her lap, trying to process the question, and then told me she wanted a picture book of horses.
Some empathy was reserved for her because she was so severe. But the descendants of her like me—I call myself a second generation psychotic—who are more recovered and equipped with resources from their families and who learned a lot after living with her, exist in some kind of new, gray area. The idea of a functioning schizophrenic seems difficult to accept for general members of society, which leaves me in a double bind. Either I need to be severely disabled and dangerous for people to acknowledge my illness, or I am so presentable that there is a tendency to assume that there is nothing really wrong with me.
The idea of a functioning schizophrenic seems difficult to accept for general members of society, which leaves me in a double bind. Either I need to be severely disabled and dangerous for people to acknowledge my illness, or I am so presentable that there is a tendency to assume that there is nothing really wrong with me.
I soon realized that my existence as an anomaly was not restricted to public perceptions of psychosis but also extended to some professionals. After hiring a lawyer to file for disabilities, we were told that even one of my therapists wrote in his notes that I was making all of my psychosis up. I don’t exactly know why he wrote that, but I believe he thought I was making up my psychotic symptoms to distract from my “real” issues (which also were unclear).
Nonetheless, my father and I were dedicated to my recovery and we even bought a graduate school textbook on CBT for psychosis. No therapist that I worked with seemed capable of helping me deal with the emotional turmoil of hallucinations, delusions, and mania. Psychotherapists specializing in psychosis were hard to come by, and without a trained clinician addressing these issues, metacognitive insight was difficult for me to acquire. Psychiatry ended up being the most beneficial to me, since I am fortunate enough to have found an antipsychotic that significantly reduced the hallucinations and delusions without having life-altering side effects. I will perhaps be forever dependent on these medications, but that is something I’ve long accepted after repeated failures of adherence allowed hallucinations and delusions to take over large chunks of my life. When I was off of my medications, my grades dropped in school, and I was functioning so poorly that I had to leave early. That was another step in my recovery—to acknowledge the weaknesses that came with my disorder.
The process of recovery from a highly stigmatized illness comes with a harrowing mix of necessary emotional transitions and acknowledging one’s humility, fragility, vulnerability, embarrassment, grief, and pain. Without tailored support systems specifically geared towards psychosis, it is less likely that patients can move through the grieving process of accepting the real changes to your life after the condition sets in, thereby never reaching the ultimate goal of insight required to make changes in their lives.
There are therapeutic methods to help a patient come to terms with their diagnosis, like illness management, family psychoeducation, and more, but from my experience, I was never shown those methods until I realized I needed them and took action myself.
The evidence of the consequences of the failure to integrate is very real. An NIMH article cites a 2019 estimate that the cost of schizophrenia amounts to $342.2 billion, which includes housing, healthcare, and caregiving failures. Social and cultural perceptions grow increasingly prejudiced towards those with the condition. Without awareness that these skills are learnable, there is plenty of fertile ground for hostility from patients towards institutions and the general public.
The alternative is harrowing. Committing us to psychiatric hospitals, imprisoning us, or leaving us without an economically rewarding incentive to contribute value in the workforce renders a constant sense of fear, paranoia, and shame to a point where patients themselves acquire a huge burden on our futures and sense of trust, possibly preventing insight that could lead to flourishing.
A Different Type of Physician Strategy
In the summer when I was 22, I found a new clinic. It was admittedly kind of a wooey functional medicine clinic, but it was the only clinic that I thought could help me relieve the burden of darkness that I was experiencing while trying to live my life. This clinic offered me primary care, psychiatry, a gym membership, and a food center that encouraged patients to focus on dietary changes. The recognition of my holistic needs made me feel seen as an equal among others deserving of recovery.
The clinic psychiatrist was older, with a little hint of eccentricity himself, and had a degree of prestige from a series of professional accomplishments in his career in psychiatry.
One of the first concepts he introduced me to was neuroplasticity. He prescribed me things like calligraphy and a particular type of dance. The clinic taught me that way of movement by starting one part of my body (like stomping my feet) on beat one. Then I would add my arms by moving them side-to-side at double the speed for beat two. Finally, I would shake my head from side to side on beat three in a way that all body parts were coordinated together. His reasoning was that this customized dance process engages one’s capacity for new learning, which is what I needed to help me unlearn my old habits that were contributing to my mental illness.
Each session, he would sit in the chair across from me with his chin on his hand and a face scrutinizing my body language. When I would laugh off my behaviors, he would scrunch his face up and maintain direct eye contact. “Sarah, why do you think these things like impulsive traveling, money spending, and reckless sex aren’t serious?”
I didn’t know what to say to him. At that moment, I was embarrassed that someone was calling me out. When he did that, it was like I came down from a high horse I was riding. I thought I could outsmart my condition. People were right; I was in denial. I was denying the vulnerability that I had with my disorder.
The conversations continued. Each time I would enter his session, we would discuss how my specific actions were contributing to my psychosis, leading me to realize that what I was doing was counterproductive to my goals in life. I wanted people to like me, and I wanted to be a successful careerist—whatever that meant at the time. What I was doing, he said, was that I was scaring people and hurting myself, and it would be helpful if I was on an antipsychotic.
After finding a physician who maintained my dignity and believed that I was capable of confronting these issues, I began to reflect on how my disorder had completely taken over my life. I made the choice to fully commit to recovery. The social integration of the clinic, in all of its beautiful decor and equally beautiful people, conveyed to me that just because I had a “fringe” disorder, it didn’t mean I was restricted from accessing resources I needed. It reinforced the idea that I was deserving of recovery.
After finding a physician who maintained my dignity and believed that I was capable of confronting these issues, I began to reflect on how my disorder had completely taken over my life. The social integration of the clinic, in all of its beautiful decor and equally beautiful people, conveyed to me that just because I had a “fringe” disorder, it didn’t mean I was restricted from accessing resources I needed. It reinforced the idea that I was deserving of recovery.
It is true that not everyone with a psychotic disorder has enough insight and capability (and finances) to have a space to critically think about their symptoms in order to self-soothe or prevent episodes from happening while in the process of breaking down denial and protective mental barriers. But doesn’t everyone deserve the opportunity to discover if they do?
New Therapies for the Whole Person
Recently, at one of my fencing warm-ups, my coach had us do a game. We clasped our hands behind our backs while sitting on the floor, and our goal was to figure out how to stand up without using our hands. We did the same thing, holding our earlobes while lying down, before we figured out how to stand up. After it was done, she asked us how it felt.
I said, “It didn’t feel physically exhausting, but it felt mentally challenging.” She explained that the exercise was a method she learned in Hungary, and it was a method that helps people return to the time periods where their brains were developing in childhood.
In a way, it reminded me of the therapeutic dance my psychiatrist prescribed me. The idea is that the body’s ability to figure out new ways to interact with the world helps the mind form new ideas about how to navigate challenging situations. In fact, research even shows that factors associated with recovery include exercise, which fosters neuroplasticity potential and integrates patients into socially neutral environments, although I am quite aware that that finding is somewhat of a cliché without significant impact yet for the severely psychotic population.
The question remains: how many patients know the options enough to seek encompassing treatment strategies? The only reason I found my coach from Hungary and my psychiatrist was because I was doing research about treatment that was beyond the standard drug options. I was searching for therapies with some grounding in science and had access to these options. Essentially, I had taken charge of my recovery. I was fully alive and awake. I spoke up during therapy sessions. I told doctors that they were wrong. I asked for second opinions. I quit and left doctors when I felt they weren’t supporting me.
Oftentimes, people do rely on the expertise of physicians due to their respect for the profession. Since I come from a family that primarily consists of doctors, engineers, and PhD scholars, I wasn’t intimidated or threatened by “authoritative” titles. The agency that I believed I had was encouraged in me from the very beginning by my father, and I was surrounded by a family that already existed in a world where thinking about complex ideas and forming creative solutions to problems was embedded in my family culture. Schizophrenia patients are less confident in their ability to protest. And how can they if their entire mental faculties are lost?
Oftentimes schizophrenia is a loss of the sense of individuality and selfhood. The disorder robs the person of their distinct traits that make them aware of their difference from others. A disappearance of personality can distract them from pursuing any ingenuity that might come from their unique perspectives. It would be reasonable to surmise then that including a way for patients to find their way back to their selves would be important for treatment to restore what would have been if the disorder didn’t hijack their life direction. What would happen if physicians and hospitals provided spaces for people to explore their experiences through rehabilitating the connection between the mind, body, and sense of grounding that shapes their psychosis and alternate realities? Yoga, for example, has been shown to be beneficial for schizophrenia patients provided the exercises are tailored to the capabilities of the patient. The point being that the process can be started at all.
Treating psychosis seems to be no different from treating any other mental disorder, if we assume that people with psychosis can in fact recover—that recovering, insight, and self-initiative are things that can be grown, trained, and learned over time. The fact that I was able to recover more than my aunt could also be due to the differences in diagnosis—she had schizophrenia, while I have schizoaffective disorder, and those diagnosed with schizoaffective disorder are generally believed to have a better prognosis than others.
That amount of time might be years or an entire lifetime, as it has taken about fifteen years for me to navigate psychosis to a point where I am functioning well. What I have taken from my various treatments is that it is important to keep the body as a priority in recovery. Many tools that I learned for emotional grounding for my hallucinations and delusions involved, in addition to medications, doing yoga, maintaining a healthy diet, and surrounding myself with those who remind me of who I am.
It has taken about fifteen years for me to navigate psychosis to a point where I am functioning well. What I have taken from my various treatments is that it is important to keep the body as a priority in recovery. Many tools that I learned for emotional grounding for my hallucinations and delusions involved, in addition to medications, doing yoga, maintaining a healthy diet, and surrounding myself with those who remind me of who I am.
When I have a routine, I am able to stay within reality. The experience of having hallucinations and delusions makes it so that time is a lost quality, and the moments spent contributing to real life seem to be sacrificed with the time spent in a delusional state. Dietary changes help cope with the unfortunate downward spiral of bodily deterioration that would affect self-esteem and self-image, which hurt my ability to maintain a consistent self. Surrounding myself with those who focus on my individualistic personality traits instead of my illness helped me learn that I truly was not my illness, and if I could distinguish between the two, I at least had a direction I could point to growing into.
The providers at the clinic addressed my entire wellbeing—the center was founded on the belief that every aspect of life was important to good health. I do not believe that mental illness is a single issue; mental illness recovery for me requires lifestyle changes, social support, and creative expression that allow my entire personality to outshine my condition. I felt seen and heard by my psychiatrist. I could see that he cared about my future, and my potential to contribute to society. We had the shared goal that I could integrate into the world in a way that would be unique to the intersection of my illness and my personality.
And at last, the cooperative nature of discussing the different types of medications were most useful. Medications were not thrust onto me. My psychiatrist and I thoroughly discussed the well-researched pros and cons of each medication (I said I didn’t mind if it made me sleep a lot; I just didn’t want to have tardive dyskinesia and weight gain), and I felt like I was actually being asked for my consent to be put on the antipsychotic instead of being pressurized to take one without much discussion. He walked me through the reasoning as to why an antipsychotic would be helpful instead of authoritatively declaring that it would be helpful and that I needed to take it. I was included in the clinical decision-making process.
This comprehensive and integrative focus on my well-being from empathetic clinicians who take my autonomy and ambitions seriously has worked for me. It has been seven years since this treatment approach, and I am able to lead a full and rich life that once seemed unimaginable to me.
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Thanks for this wonderful piece. It is interesting how similar psychosis is to the structural dissociation I have, though, of course, also different. The difficulty finding someone who can understand and help is similar. “Psychotherapists specializing in psychosis were hard to come by, and without a trained clinician addressing these issues, metacognitive insight was difficult for me to acquire.” It may be that even fewer clinicians know how to work with dissociation. At least clinicians believe in psychosis; many don’t believe in dissociation.
In particular, this: “schizophrenia is a distinct loss and breakdown of the self. One of those potential losses is the ability to have a narrative that aligns with reality. One could argue that to restore sanity, one would need to bring back that ability to self-narrate in a way that also matches up to others’ observations”
Dissociative amnesia is also a breakage of the self. Without memories of critical events of my past, and continuing to dissociate/forget as an adult, I was unable to form “a narrative that aligns with reality.” And my recovery has required building a self-narrative that aligns with what happened to me, and who people really are, and who I am and might be.
Also, thanks for sharing the insights on movement; I will try them out.
Soon after I started reading this I thought "oh it's another one of THOSE, supremely privileged people from highly educated and very affluent backgrounds making pronouncements that have no relationship to the situation of the vast majority of humans struggling with mental illness, especially psychosis". But I kept reading, and found an interesting, informative and self and society aware account, and was reminded of a need for open approach to others' accounts and withholding judgement. Ok, fencing coach almost threw me off that path of humility, but only briefly. Thank you for this text.
As to the main point (not a psychiatrist) I think working on the metacognition level is important and can be helpful with all care and recovery, physical and mental, because humans are creatures of meaning; even if it might be more challenging in psychosis.
[I'm not sure of I have any followers interested in those topics here, but highly recommended a read]