Diagnosed with adult-onset schizophrenia shortly after his 24th birthday, the author transitioned from a perceived state of spiritual awakening to grappling with one of the most stigmatized illnesses. Initially, he internalized societal stereotypes, envisioning a future as a marginalized individual. However, with support from family and providers, he re-engaged with school and work, fostering an expectation of normalcy despite early struggles. The author discusses his psychotic episodes, marked by rapture, absurdity, and terror, in light of current neurobiological literature and mechanistic hypotheses such as salience network dysfunction and impaired corollary discharge. Over time, he sought to reconcile these intense memories with scientific understanding to find meaning in his lived experience. As co-chair of the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ), he advocates for an integrative approach combining scientific inquiry and lived experience. This perspective not only fosters a more accurate comprehension of psychosis but may also enhance research and care.
I received the diagnosis of adult-onset schizophrenia shortly after my 24th birthday. In the brief span of a few weeks, I went from what I considered a state of spiritual awakening to being diagnosed with one of the most stigmatized and misunderstood illnesses. As a result of this jarring transition, I could no longer see myself as a messianic-like figure in the midst of a gnostic epiphany; instead, marred by my own ignorance and internalized stigma, I became increasingly convinced I was marked with a scarlet letter and fated to exist on society’s fringes, amounting to nothing more than a social pariah. Although difficult to admit, I readily accepted the stereotypes associated with the condition, believing the best I could hope for was merely surviving on a disability check, spending my days in front of a television, cigarette in hand.
In retrospect, I was fortunate that my family, friends, and providers encouraged me to quickly return to school and work, compelling me to learn how to adapt to life in my community following my diagnosis. This re-engagement provided an expectation of normalcy despite the reality of my early struggles standing in stark contrast. Even months into treatment, as I stood flipping burgers at my first fast-food position, facing the steaming grill while grappling with lingering symptoms and sweat beads on my forehead, I couldn’t help but think, “This is no job for the son of God.”
This ironic self-reflection mirrored the tumultuousness of my psychotic break—a cacophony of the profound, absurd, and, at times, utterly terrifying that defined my everyday reality for over a year. It would take many more years before I could reconcile the blow to my self-esteem, gradually accept the immense vulnerability of my situation, and find meaning in the experience. Having now surpassed a decade in my recovery, certain aspects, particularly the more emotionally charged or extreme episodes, have permanently imprinted themselves. They’ve left me with unforgettable memories that I now sift through, challenging me to interpret and understand them in light of the science of psychosis.
Profound rapture
One hypothesis of psychosis concerns the abnormal functioning of the salience network1,2. The salience network is a collection of brain regions working together to select which stimuli deserve attention. This network helps identify the most critical aspects of our environment, and its overactivity can lead to the over-assignment of salience to internal thoughts or external stimuli that are typically considered irrelevant, contributing to delusions or hallucinations.
In my experience, everything around me took on a mystical significance. Jogging late at night through the suburban neighborhoods of Miami, I would hear the wind whispering through the rustle of the palm leaves as if speaking directly to me, urging me toward a higher calling. Tears streamed down my cheeks as the pulse of electronic dance music in my headphones amplified the awe-inspiring beauty of nature, magnifying the moment’s mystique. During those runs, I felt as though every element of my environment was intricately connected, further guiding me toward a deeper comprehension of the universe. Even the advertisements of commercial products and luxury car brands lining the streets seemed to impart special, holy messages.
These revelatory episodes stirred an insatiable hunger for religious texts as I read the Bible, the Torah, and the Koran with fervor and certainty that I was being spoken to through scripture. Yet, my new-found religiosity failed to bring me closer to others; rather, my fixation with religious material became pathological and obsessive, increasingly isolating me. As I retreated further into solitude, I began hearing voices that called me a prophet and praised my beauty and goodness—“You’re an angel! You’re so beautiful! So pure!” The allure of these divine assurances, suggesting I was different and chosen for a greater purpose, had an intoxicating and seductive quality, drawing me farther into my inner world.
Overwhelmed by a brain in dopaminergic overdrive, my mind struggled to make sense of these experiences. With my rational capacities failing, I found nowhere else to turn but to the supernatural for comfort and insight. I interpreted what was happening through a framework of spiritual revelation—a chaotic yet ecstatic communion with God—and I was convinced I was bearing witness to eternal wisdom as the veil between the metaphysical and the real lifted. My perceptions were not merely altered but wholly transformed, as I felt overcome by a sense of connection to everything. And the undeniable truth is that hearing the voices of the heavens was, at times, nothing short of rapturous splendor, even as they plunged my life and those I loved into chaos.
Absurdity and tragedy
My family and friends, who undoubtedly were as confused as I was, found unintended yet temporary levity in moments acknowledging the irrationality of psychosis. For instance, I would often focus my gaze on unusual spots or avoid eye contact with others due to the social anxiety or cognitive impairments associated with the disease3. My eyes would fixate on the ceiling as if I were a figure in a Renaissance painting—a martyr or saint looking upward, awaiting the arrival of kingdom come. This frequent, intense upward stare prompted those around me to ask, “What’s up there, Carlos? What’s going on?” This behavior distanced me from normal social exchanges, leaving my friends and family feeling awkward and confused by my detachment. Nevertheless, they found some respite in appreciating the absurdity of these moments; otherwise, they would have been left to face only the tragedy of my deteriorating state.
Sheer terror
Another hypothesis concerning psychosis concerns the concept of corollary discharge4. Each movement transmits a corresponding discharge associated with the motor command to the sensory cortex. This signal either reduces or negates the resulting sensations, identifying them as self-generated. However, research on schizophrenia reveals an impairment where the brain fails to distinguish these self-generated sensory events. This failure can lead to internal thoughts being erroneously perceived as coming from external sources.
In my experience, it felt as if my brain’s ability to differentiate between myself and external reality diminished, causing a blurring between my internal thoughts and sensory inputs from the outside world. The filter designed to sieve out unnecessary information eroded, leaving me inundated by a torrent of environmental stimuli. The very bedrock of my identity—my memories, dreams, and sense of self—seemed suddenly turned to sand, swept away by the relentless waves of sensory overload. This feeling of dissolution was not merely unsettling. In this unmoored state, I could no longer discern where I ended and the rest of the world began, leading to a frighteningly disorienting experience. It was as though I was drifting away in a vast, endless void, struggling to piece together fragments of my splintering psyche into some semblance of reality.
Additionally, abnormalities in brain chemistry and structure, particularly in areas such as the amygdala that regulate fear and other emotions, and disruptions in functional connectivity, which affects how different brain regions communicate, can make it challenging to accurately interpret facial expressions and intentions, which contributes to an exaggerated perception of fear and hostility towards one’s surroundings5,6,7. To me, the once familiar and loving faces of family members, like my mother, transformed into something resembling a demonic force. Their features appeared grotesquely distorted, almost caricature-like, with the corners of their smiles unnaturally arched upwards into their cheeks and their eyebrows forming sharp peaks. I often found myself gawking at others with an expression that was part deer caught in headlights and part lost child, the face of someone beholding something simultaneously horrific, mesmerizing, and inexplicable as their faces morphed into threatening, hellish expressions.
One of the crueler aspects of psychosis is that it often insidiously strips away self-awareness, leading to a troubling ambivalence or outright antagonism toward recognizing the need for help. Yet, in a strangely merciful twist, it also grants a form of grace by shielding the individual from fully grasping the severity of their dire condition. Nonetheless, during those rare instances when the chaos and confusion momentarily receded, allowing brief flashes of clarity, the realization that I was spiraling into madness was absolutely horrifying.
Beyond Stereotypes
Because psychosis is an experience that often eludes our understanding, we tend to reduce it to stereotypes that oscillate between extremes. This attitude manifests as a stigma fluctuating between romanticized and demonized depictions, and such black-and-white portrayal reduces individuals to mere caricatures. For example, people with psychosis might be labeled as either geniuses, like Dr. John Nash or Vincent Van Gogh, or as outcasts linked to extreme behaviors such as violence or anti-social tendencies. This reductionism fails to capture the full spectrum and unique experiences of those living with the condition; rather, people with psychosis are frequently “othered,” and perceived as fundamentally different from societal norms8. Unfortunately, these misperceptions, driven by fear and misunderstanding, can also significantly influence mental health policies and practices, resulting in marginalized individuals or inadequate support9.
As co-chair of the steering committee for the AMP® SCZ program—a public–private initiative dedicated to promoting early interventions for individuals at clinically high risk for psychosis10—I have come to appreciate how a scientific comprehension of this illness can profoundly shape the personal journey of finding meaning in lived experience. It has facilitated my recovery by deepening my sense of hope and purpose. Furthermore, by embracing a holistic perspective that marries neurobiological literature with a narrative of living with the condition, I hope this article fosters a more empathetic and accurate understanding of others and informs and enhances psychiatric research.
I believe that the future of psychiatric research lies in this integrative approach11. By bridging the gap between scientific inquiry and human experience, we can develop more effective, personalized treatments and create mental health care delivery and research systems responsive to the needs of those it serves12. This vision of compassionate care, informed by cutting-edge science and enriched by the voices of those with lived experience, is one that I am committed to advancing through the work of the AMP SCZ program. For more information about AMP SCZ, visit https://www.ampscz.org.
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CL occasionally receives remuneration from the pharmaceutical industry for presentations on his lived experience and consultation on research and disease awareness campaigns.
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Larrauri, C.A. Messiah or pariah? Psychosis, science, and finding meaning in lived experience. Schizophr 10, 67 (2024). https://doi.org/10.1038/s41537-024-00486-w
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DOI: https://doi.org/10.1038/s41537-024-00486-w