SPECIAL ARTICLE

The lived experience of psychosis: a bottom-up review co-written by

experts by experience and academics
Paolo Fusar-Poli1-4, Andrés Estradé1, Giovanni Stanghellini5,6, Jemma Venables1,7, Juliana Onwumere4,8,9, Guilherme Messas10, Lorenzo Gilardi11,
Barnaby Nelson12,13, Vikram Patel14,15, Ilaria Bonoldi16, Massimiliano Aragona17, Ana Cabrera18, Joseba Rico18, Arif Hoque19, Jummy Otaiku19,
Nicholas Hunter20, Melissa G. Tamelini21, Luca F. Maschião10, Mariana Cardoso Puchivailo10,22, Valter L. Piedade10, Péter Kéri23, Lily Kpodo7,
Charlene Sunkel24, Jianan Bao2,25, David Shiers26-28, Elizabeth Kuipers4,8,9, Celso Arango29, Mario Maj30
1
Early Psychosis: Interventions and Clinical-detection (EPIC) Lab, Department of Psychosis Studies, Institute of Psychiatry, Psychology & Neuroscience, King’s College London,
London, UK; 2OASIS service, South London and Maudsley NHS Foundation Trust, London, UK; 3Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy;
4
National Institute for Health Research, Maudsley Biomedical Research Centre, South London and Maudsley, London, UK; 5Department of Psychological, Territorial and Health
Sciences, “G. d’Annunzio” University, Chieti, Italy; 6Center for Studies on Phenomenology and Psychiatry, Medical Faculty, “D. Portales” University, Santiago, Chile; 7South London
and Maudsley NHS Foundation Trust, London, UK; 8Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK; 9Bethlem
Royal Hospital, South London and Maudsley NHS Foundation Trust, Beckenham, UK; 10Mental Health Department, Santa Casa de São Paulo School of Medical Sciences, São
Paulo, Brazil; 11Como, Italy; 12Orygen, Parkville, VIC, Australia; 13Centre for Youth Mental Health, University of Melbourne, Melbourne, VIC, Australia; 14Department of Global
Health and Social Medicine, Harvard Medical School, Boston, MA, USA; 15Department of Global Health and Population, Harvard T.H. Chan School of Public Health, Boston, MA,
USA; 16Department of Psychosis Studies, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK; 17Roman Circle of Psychopathology, Rome,
Italy; 18Asociación Española de Apoyo en Psicosis, Madrid, Spain; 19Young Person’s Mental Health Advisory Group (YPMHAG), King’s College London, London, UK; 20NHS South
London and Maudsley (SLaM) Recovery College, London, UK; 21Institute of Psychiatry, Hospital das Clínicas de São Paulo, São Paulo, Brazil; 22Department of Psychology, FAE
University Center, Curitiba, Brazil; 23Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN-Europe), Brussels, Belgium; 24Global Mental Health Peer Network
(GMHPN), South Africa; 25Department of Forensic and Neurodevelopment Sciences, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK;
26
Psychosis Research Unit, Greater Manchester Mental Health Trust, Manchester, UK; 27Division of Psychology and Mental Health, University of Manchester, Manchester, UK;
28
School of Medicine, Keele University, Staffordshire, UK; 29Department of Child and Adolescent Psychiatry, Institute of Psychiatry and Mental Health, Hospital General Uni-
versitario Gregorio Marañón School of Medicine, IiSGM, CIBERSAM, Complutense University of Madrid, Madrid, Spain; 30Department of Psychiatry, University of Campania “L.
Vanvitelli”, Naples, Italy

Psychosis is the most ineffable experience of mental disorder. We provide here the first co-written bottom-up review of the lived experience of psy-
chosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically-informed
perspectives. First-person accounts within and outside the medical field were screened and discussed in collaborative workshops involving
numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations.
The material was complemented by semantic analyses and shared across all collaborators in a cloud-based system. The early phases of psychosis
(i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity
and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important
is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to
be denoted by some transitory relief associated with the onset of delusions, intense self-referentiality and permeated self-world boundaries,
tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing
and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and
an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological
treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood
as an enduring journey of reconstructing the sense of personhood and re-establishing the lost bonds with others towards meaningful goals.
These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences,
so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.

Key words: Psychosis, lived experience, experts by experience, bottom-up approach, phenomenology, premorbid stage, prodromal stage, first-
episode stage, relapsing stage, chronic stage, recovery, psychiatric treatment

(World Psychiatry 2022;21:168–188)

Psychotic disorders have a lifetime prevalence of 1%1, with will be lost to the depths of chaos forever”5.
a young onset age (peak age at onset: 20.5 years)2. They are as- K. Jaspers often refers to the paradigm of “incomprehensi-
sociated with an enormous disease burden3, with about 73% of bility” with respect to the primary symptoms of psychosis that
healthy life lost per year4. cannot be “empathically” understood in terms of meaningful
Psychosis is characterized by symptoms such as hallucina- psychological connections, motivation, or prior experiences6.
tions (perceptions in the absence of stimuli) and delusions (er- However, psychotic disorders – especially schizophrenia – have,
roneous judgments held with extraordinary conviction and more than any other mental condition, inspired repeated at-
unparalleled subjective certainty, despite obvious proof or evi- tempts at comprehension.
dence to the contrary). The nature of these symptoms makes In the two-hundred-year history of psychosis, numerous med­
psychosis the most ineffable experience of mental disorder, ex- ical treatises and accurate psychopathological descriptions of the
tremely difficult for affected persons to comprehend and com- essential psychotic phenomena have been published. However, this
municate: “There are things that happen to me that I have never top-down (i.e., from theory to lived experience) approach is some-
found words for, some lost now, some which I still search desper- what limited by a narrow academic focus and language that may
ately to explain, as if time is running out and what I see and feel not allow the subjectivity of the lived experience to emerge fully.

168 World Psychiatry 21:2 - June 2022

 Some evidence syntheses have summarized various aspects was included if consisting of primary accounts of the lived expe-
of the lived experience of psychosis7-13, but again they were writ- rience of psychosis across its clinical stages (premorbid, prodro-
ten by academics. On the other hand, numerous reports describ- mal, first episode, relapsing, and chronic). Primary accounts of
ing the subjective experience of psychosis have been produced the experience of recovery or of treatments received for psycho-
by affected individuals14-26 (see Table 1). Although useful, these sis were also included.
reports are often limited by fragmented, contingent and contex- We performed automated semantic analyses on Schizophre-
tual narratives that do not fully advance the broader comprehen- nia Bulletin first-person accounts, extracting the list of experien-
sibility of the experience. tial themes relating to the disorder across its clinical stages and
To our best knowledge, there are no recent studies that have their interconnections, loading them into Gephi software, and
successfully adopted a bottom-up approach (i.e., from lived ex- building up network maps.
perience to theory), whereby individuals with the lived experi- In a second step, the core writing group selected the lived
ence of psychosis (i.e., experts by experience) primarily select experiences of interest, tentatively clustered them into broader
the subjective themes and then discuss them with academics to experiential themes, and identified illustrative quotations. The
advance broader knowledge. Among the various forms of col- material was stored on a cloud-based system (i.e., google drive)
laboration available in the literature, co-writing represents an fully accessible to all members of the group.
innovative approach that may foster new advances27,28. It can In a third step, the initial selection of experiential themes and
be defined as the practice in which academics and individuals quotations was collegially shared and discussed in two collabo-
with the lived experience of a disorder are mutually engaged in rative workshops, which involved numerous individuals with the
writing jointly a narrative related to the condition. Co-writing is lived experience of psychosis as well as family members and car-
based on the sharing of perspectives and meanings about the in- ers, to ensure that the most prominent themes were being con-
dividual’s suffering. Collaborative writing must honour the chal- sidered and to collect users’ and carers’ interpretation of these
lenge of maintaining each subject’s diction and narrative style themes.
without capturing or formatting them in pre-established narra- The workshops involved representatives from the Global M ­ ental
tive models29. Health Peer Network (https://www.gmhpn.org); the Glo­bal Al-
The present paper aims to fill the above-mentioned gap in the liance of Mental Illness Advocacy Networks (GAMIAN) - Europe
literature by providing a bottom-up co-written review of the lived (https://www.gamian.eu); the South London and Maud­sley NHS
experience of psychosis. Foundation Trust (https://www.slam.nhs.uk); the Young Person’s
In a first step, we established a collaborative team of individu- Mental Health Advisory Group (https://www.kcl.ac.uk/research/
als with the lived experience of psychosis and academics. This ypmhag); the Outreach And Support in South-London (OASIS)
core writing group screened all first-person accounts published (https://www.meandmymind.nhs.uk) Service Users Group; the
in Schizophrenia Bulletin between 1990 and 202130, and re- South London and Maudsley NHS Recovery College (https://
trieved further personal narratives within and outside the medi- www.slamrecoverycollege.co.uk); the Black and Minority Ethnic
cal field through text reading (e.g., autobiographical books, see Health Forum Croydon (https://cbmeforum.org); the UK Mental
Table 1) and qualitative research (e.g., narratives from clinical Health Foundation (https://www.mentalhealth.org.uk); the Faces
records or service users’ magazines or newsletters). The material and Voices of Recovery (https://facesandvoicesofrecovery.org);

Table 1 Selection of publications on the lived experience of psychosis considered for the present review

Beers CW. A mind that found itself 14

Boisen AT. Out of the depths15

North CS. Welcome, silence16

Sommer R et al. A bibliography of mental patients’ autobiographies: an update and classification system17
Clifford JS et al. Autobiographies of mental health clients: psychologists’ uses and recommendations18
Saks ER. The center cannot hold19

Colori S. Experiencing and overcoming schizoaffective disorder: a memoir20

Weijun Wang E. The collected schizophrenias21

Sechehaye M. Autobiography of a schizophrenic girl22

Benjamin J, Pflüger B. The stranger on the bridge23

Geekie J et al (eds). Experiencing psychosis: personal and professional perspectives24

Williams S. Recovering from psychosis: empirical evidence and lived experience25

Stanghellini G, Aragona M (eds). An experiential approach to psychopathology: what is it like to suffer from mental disorders?26

World Psychiatry 21:2 - June 2022 169

and the Asociación Española de Apoyo en Psicosis (AMAFE) stage is characterized by attenuated psychotic symptoms that
(https://www.amafe.org). can last years, do not reach the diagnostic threshold for a psy-
In a final step, the selection of experiential themes was revised chotic disorder, but are typically associated with some degree of
and enriched by adopting a phenomenologically-informed per- functional and cognitive impairment41-45. These manifestations
spective31-33. The revised material was then shared again across can then progress to a subsequent stage of fully symptomatic
all collaborators in google drive and finalized iteratively. All indi- mental disorder (first episode of psychosis) and then persist, es-
viduals with lived experience and researchers who actively con- pecially if treated sub-optimally, leading to a relapsing stage and,
tributed to this work were invited to be co-authors of the paper. for a proportion of cases, a subsequent chronic stage38.
Representatives from service user and family groups were reim-
bursed for their time according to the guidelines by the UK Na-
tional Institute for Health Research (https://www.invo.org.uk). Premorbid stage
In this paper, the words spoken or written by individuals with
the lived experience of psychosis are reported verbatim in ital- An early, inner experience of loneliness and isolation
ics, integrated by co-authors’ comments and phenomenological
insights. “When growing up I was quite a shy child… I was usually un-
comfortable around kids of my own age”46. Figure 1 shows that
the most frequent cluster of lived experiences in the premorbid
THE LIVED EXPERIENCE OF PSYCHOSIS ACROSS stage of psychosis is represented by feelings of loneliness and iso-
ITS CLINICAL STAGES lation – variably referenced as being “introverted”47, “loner”48-50
or “isolated”51 – already reported during childhood: “I admitted
This section addresses the subjective experience of psychosis I was a loner and was probably somewhat backwards socially.
across the clinical stages of this condition: premorbid, prodro- I had never had a boyfriend, rarely even dated, and my friend-
mal, first episode, relapsing, and chronic34-37. ships with girls were limited and superficial”48.
The premorbid stage starts in the perinatal period and is often This weak “attunement” in social interactions during child-
asymptomatic; it is generally associated with preserved function- hood52 has been captured by Bleuler’s53 concept of “latent schiz­
ing38, although delays in milestones may emerge39. Accumula- ophrenia” and Kretschmer’s54 definition of “schizothymic” and
tion of further risk factors during infancy and young adulthood40 “schizoid” temperaments. Recent meta-analyses have confirmed
may lead to the emergence of a clinical high-risk state for psycho- that loneliness is a core experiential domain during subclini-
sis; this stage is often termed “prodromal” in the retrospective cal psychosis55. Loneliness has been frequently associated with
accounts of individuals with the lived experience. The prodromal experiences of social anxiety46,56 and recurring fears51,57-60, ob­­

Figure 1 Network map of lived experiences of psychosis during the premorbid stage. The nodes represent the experiential themes, and the
edges represent the connections between them. The size of each node reflects the number of first-person accounts addressing that experiential
theme. The thickness of the edges reflects the number of connections between the themes.

170 World Psychiatry 21:2 - June 2022

sessive ruminations59, depressed mood57, and a heightened very early on”75.
sensitivity to social interactions14,60,61: “I was too shy to raise Empirical studies have confirmed that this odd “feeling like
my hand, and although my parents were very sociable and a stranger”62 (see Figure 1) and isolated (e.g., schizoid or schi-
outgoing, I would hide behind my mum when meeting strang­ zotypal) personality organization may present features qualita-
ers”23. tively similar to psychosis76, and be associated with an increased
These experiences color the emotional life of the individuals risk of later developing the disorder52. Detachment from com-
before the emergence of attenuated psychotic symptoms51,58. mon sense is also related to a pervasive sense of “perplexity” (see
Loneliness is also frequently associated with early adverse Figure 1), frequently characterizing the premorbid stage of psy-
experiences, such as social discrimination60,62, school bully- chosis51,67: “A certain perplexity has always been a part of how I
ing50,60,63,64, abuse or exposure to prolonged familial conflicts experience the world and its inhabitants”67.
and violence65,66, which further amplify the sense of subjective Abnormal body experiences, such as the sense of being a dis-
alienation, fear and isolation (see Figure 1): “The abuse I had in embodied self, may also be reported: “The first disturbing experi-
my years of schooling… exacerbated anger and fear, which as I ence I remember was discomfort in my very own body. Because I
remember had always been there anyway”60. didn’t feel it. I didn’t feel alive. It didn’t feel mine. I was just a kid,
but ever since, I never felt a feeling of fusion or harmony between
‘me’ and ‘my’ body: it always felt like a vehicle, something I had
Loss of common sense and natural self-evidence to drive like a car” (personal communication during the work-
shops).
“When I was younger, I used to stare at the words on the pages Overall, the disconnectedness from common sense trans-
of a book until they became so unfamiliar that they were practi- lates into real-world feelings of inadequate social skills48,56,60,66,
cally incomprehensible to me even if I had learnt their meanings difficulties at school57, and problems in mundane daily activi-
before. Then I would wonder, why do words mean anything any- ties51: “It made me inept about mundane things such as washing
way? They are just letters put together by some unspoken rule… up, getting a haircut when I needed it, doing the bins, and little
What is this hidden rule? The hidden rules that govern thoughts things like that – which really have to be done, just to get on with
and behaviors were not transparent to me although others seemed life”51. These impairments can be so profound as to disrupt the
to know them”67. Another core experiential theme during the pre- individual’s identity51,58,60 (Jaspers’ awareness of the identity of
morbid stage of psychosis is this diminished intuitive grasp of how the self, or ego-identity6).
to naturally conduct natural, everyday tasks like reading a book or
interactions: “I was forever making remarks and behaving in a
way that would slightly alienate people. This was because I would Prodromal stage
have to grasp situations by apprehending their parts rather than
grasping them intuitively and holistically”60. A feeling that something important is about to happen
Common sense is defined by Blankenburg68 as the tacit (im-
plicit) understanding of the set of “rules of the game” that dis- The subjective experience of the psychosis prodrome is mark­
ciplines and guides human interactions. A “crisis in common ed by an intense feeling that something very important is “about
sense”68 is the main root of the premorbid subjective experi- to happen”77, that the individual is on the verge of finding out
ence of psychosis since childhood, intensifying over the subse- an important “truth” about the world78,79 (see Figure 2). K. Con-
quent stages69: “Rules about how to deal with others were learnt rad calls this initial expectation phase the Trema (stage fright)77.
and memorized instead of being intrinsically felt. What should The Trema can last from a few days to months, or even years6,
come naturally, and without effort, became a difficult cognitive and is characterized by delusional mood (Wahnstimmung in the
task”67. German tradition): an “uncanny” (“unheimlich” in the German
Fragile common sense erodes interpersonal attunement (and tradition), oppressive inner sense of tension, as if something om-
vice versa) and may drive individuals towards an eccentric self- inous and impending is about to happen (“something seems in
positioning that is marginal to commonsensical reality, situat- the air”6), but the individual is unable to identify what this might
ing them at the edges of socially shared beliefs70 and values69,71. be precisely77: “Something is going on; do tell me what on earth
Fragile common sense relates to the subjective feelings of be- is going on”6.
ing “odd”60,72 or “weird”56 (see Figure 1). Individuals may feel During this experience, time is suspended. Individuals live
ephemeral, lacking a core identity, profoundly (often ineffably) in an elusive and pregnant “now”, in which what is most impor-
different from others and alienated from the social world, a state tant is always about to happen. Premonitions about oneself (“I
that has been termed “diminished sense of basic-self”73,74: “I felt something good was going happen to me”60) and about the
remember it very precisely. I must have been 4 or 5 years old. I external world (“Something is going on as if some drama unfold-
was starting dance class, and I was looking in the mirror. I was ing”60) are common.
standing next to the other kids, and I remember that I looked al- Delusional mood, according to Jaspers, marks the irruption
ien. I felt like I sort of stuck out from that large wall mirror. As if of a primary psychotic process (i.e., not due to other condi-
I wasn’t a real child. This feeling has been very persistent from tions) that interrupts the development of personality81. As the

World Psychiatry 21:2 - June 2022 171

Figure 2 Network map of lived experiences of psychosis during the prodromal stage. The nodes represent the experiential themes, and the
edges represent the connections between them. The size of each node reflects the number of first-person accounts addressing that experiential
theme. The thickness of the edges reflects the number of connections between the themes.

world transforms, the crisis of common sense of the Trema panied by a strong need to unravel their obscure meaning67,79:
­intensifies, and known places or people become strange57,82 “A leaf fell and in its falling spoke: nothing was too small to
and lose their familiarity83, often acquiring a “brooding”47 or act as a courier of meaning”69. Seemingly innocuous everyday
threatening connotation62,67,82,84: “Suddenly the room became events assume new salient meanings78,83,89. Previously irrelevant
enormous, illuminated by a dreadful electric light that cast false stimuli are brought to the front of the perceptual field and be-
shadows. Everything was exact, smooth, artificial, extremely tense; come highly salient90. This perceptual background, until then
the chairs and tables seemed models placed here and there. Pu- unnoticed, now takes on a character of its own77: “At first, this
pils and teachers were puppets revolving without cause, without started with sudden new perspectives on problems I had been
objective. I recognized nothing, nobody. It was as though reality, struggling with, later the world appeared in a new manner. Even
attenuated, had slipped away from all these things and these peo- the places and people most familiar to me did not look the same
ple. Profound dread overwhelmed me… I heard people talking, anymore”83.
but I did not grasp the meaning of the words”22. The enhanced salience of the environment can become an
Individuals feel as if they are the only ones noticing these overwhelming experience79,89: “It was shocking the amount of
changes: “I felt I was the only sane person in the world gone cra- detail I found in this new world. In a day, there are so many
zy”62. In contemporary terms, the uncanniness of the delusional things the mind relegates to background information”79. There­
mood has been described as “living in the Truman Show”, quot- fore, individuals become increasingly preoccupied with new
ing a movie in which the protagonist, Truman, gradually starts to themes and interests – often involving religion48,91, the paranor-
realize that he has been living his life in a reality television show, mal59,91, or sciences49,92 – and ideas of reference emerge46,47,51,
becoming increasingly suspicious of his surrounding world85,86: 62,72,82,84,92-95
(see Figure 2).
“All seemed ever more unreal to me, like a foreign country… Then
it occurred to me that this was not my former environment any-
more. Somebody could have set this up for me as a scenery. Or Perturbation of the sense of self
else someone could be projecting a television show for me… Then
I felt the walls and checked if there was really a surface”67. Another core experience is described as follows: “I thought I
was dissolving into the world; my core self was perforated and
unstable, accepting all the information permeating from the ex-
Heightened salience of meanings in the inner and ternal world without filtering anything out”67. The normal lived
outer world experience of the world is intertwined with a stable sense of self-
hood96 (“core self”67), which demarcates the individuals from the
During the prodromal phase of psychosis, individuals feel surrounding world. During delusional mood with heightened
assaulted by events personally directed to them67,79,82,88, accom- salience of meanings and paranoid interpretation, the bounda-

172 World Psychiatry 21:2 - June 2022

ries of the self are “perforated”67, the self becomes “permeated”67 comprehension. In fact, I experienced it, but I also experienced
by the external world51 and “unstable”67 (see Figure 2). terror and hell”110.
A pre-reflective sense of “mineness” (“ipseity” and Jaspers’
awareness of being or existing6) is the necessary structure for all
experience to be subjective, i.e. to be someone’s experience, in- Compromised vital contact with reality
stead of existing in a free-floating state appropriated post-hoc by
the subject via an act of reflection74,97,98. This sense of ownership During the prodromal phase of psychosis, individuals tend
and agency (sense of “I”) of actions and emotions, that healthy to lose vital contact with the world, experiencing increasing
people typically take for granted99, is essentially based on self- difficulties in interacting and communicating with others92,111:
presence and immersion in the world. The person’s experience “People were incomprehensible, as well as the world. I did not
of being a vital subject of experience97 is disrupted in psychosis, understand my peers why they could have so much ‘fun’ just by
leading to experiences of dissolution67 and losing one’s sense of engaging in gossip or in a party. I much preferred my own com-
identity51,66: “This vacuousness of self… one cannot find oneself or pany”67.
be oneself and so has no idea who one is”51. Individuals describe withdrawing from family and friends62,95
A key component of ipseity disturbances is hyper-reflexiv­ity from the early years gradually, over a long time60,64,112, and expe-
(exaggerated self-consciousness and self-alienation), in which riencing emotional distress, a sense of isolation46,66, and impair-
inner mental processes such as thoughts become reified and ment of social skills66,82 (see Figure 2). They feel out of place or
spatialized, resulting in hallucinatory experiences97. During unable to communicate with others113 or grasp commonsensi-
the prodromal phase, these abnormal perceptual experienc- cal implicit social codes60,67, or feel excluded46,114 as if they were
es are reported as brief and remitting100, or intensifying over different or inferior51,57 (see Figure 2): “I felt different and alone.
time47,101: “At first, hallucinations are often small or momen- Seeing so many people in the school halls made me wonder how
tary and can be as small as the appearance of eyes or a whisper my life could be significant. I wanted to blend in the classroom as
of a voice”100. Perceptual experiences include hearing indis- though I were a desk. I never spoke”57.
tinct chatter or distorted sounds61,95,101, voices61,67,102, or visions These experiences have been variously linked to the concept
78,82,88
. of “autism”115 in psychosis, which has been understood as a
The “mineness” of thinking and emotions is gradually com- “withdrawal to inner life” (Bleuler53), or as the “loss of vital con-
promised (diminished self-affection97): “Some thoughts didn’t tact with reality” (Minkowski116) and, more recently, quantified
seem to be my own. They seemed foreign, as though someone by deficits in the related construct of social cognition117-120.
was putting them there”88. Individuals complain about intrusive
thoughts or impulses103, losing control over their emotional and
cognitive processes51,79,104,105, or feeling under the influence of Keeping it secret
external forces82, although these experiences are typically tran-
sient. During the prodromal phase of psychosis, individuals typi-
cally keep their anomalous subjective experiences secret: “These
things caused me considerable anguish, but I continued to act as
Perplexity as lack of immersion in the world normal as I could for fear that any bizarre behavior would cause
me to lose my job”62.
An intense sense of perplexity is the hallmark of the emo- Individuals often hide their experiences from family and
tional experience during the prodromal stage of psychosis67,77,78: friends over a very long time82,111 because they feel ashamed58,79
“During that time reality became distant, and I began to wander of negative consequences82, and fear being labeled as “crazy” or
around in a sort of haze, foreshadowing the delusional world that “insane”51,78,108 or being laughed at64, hoping for their problems
was to come later”78. Perplexity here refers to a lack of immer- to “clear up”121: “At 18, I couldn’t study or focus but still kept every-
sion in the world, an experience of puzzlement and alienation106 thing to myself. My behavior looked ‘normal’ to others, as I was al-
which may acquire a threatening quality: “The sense of perplexity ways a quiet child, an introvert” (personal communication during
and feeling threatened by others preceded the fully formed voices the workshops). Help-seeking during the prodromal phase may
by just over two years”67. be hindered by this difficulty of sharing the unusual experiences
A pervasive sense of insecurity starts to creep in82,84,89, poten- with others122. For children and young adolescents, it is generally
tially leading to panic attacks107 and experiences such as feeling harder to conceal their emerging symptoms123.
empty, shut-off, depressed50,62,88,101,108, angry or frustrated57,105. On the other hand, because of the insidious onset of the ab-
Substance use and social withdrawal are typical coping mecha- normal experiences, individuals may not realize that something
nisms (see Figure 2)84,101,103. “might be wrong”67,82. They may believe that it is common for
However, the prodromal phase of psychosis is not always other people to have these experiences64,67, or consider them
tainted by anxiety109. Pleasurable emotional experiences can “plausible”49.
coexist49,58,61,110: “At that time I was working on an entirely new Notably, not all individuals describe a prodromal phase, but
reality… with emotional gratification beyond any reasonable some report an abrupt onset of the first episode89,92,124,125: “I ex-

World Psychiatry 21:2 - June 2022 173

perienced a great and normal life I was thoroughly enjoying, Individuals report being unable to shift away from or tran-
then I went straight into the first episode phase” (personal com- scend77 these new delusional perspectives83,113,129-131: “I told my-
munication during the workshops). self that I suddenly saw the real truth of the world as it was and
as I had never seen it before”79.
The onset of delusions can provide the individual with a new-
First episode stage found role in the world that is more thrilling and meaningful than
the uncanny reality of the Trema60,67,83,89,132,133, alongside a sense
A sense of relief and resolution associated with the of excitement60,61,126 or relief67,83,89 (see Figure 3): “A relationship
onset of delusions with the world was reconstructed by me that was spectacularly
meaningful and portentous even if it was horrific”60; “My desti-
The first psychotic episode is characterized by an intensifica- nation after this is a place where everything is vibration, a pure
tion of abnormal experiences, as visually shown by the increased state of consciousness, so elevated that everything is peace”128.
density of Figure 3 compared to Figures 1 and 2. However, the sense of relief associated with Apophany is fre-
A sense of resolution emerges as a core experiential theme quently contrasted with a difficult personal situation: “There was
(see Figure 3): “It really feels as if I am suddenly capable of put- going to be a nuclear holocaust that would break up the conti-
ting things in perspective, that the light has suddenly switched nental plates, and the oceans would evaporate from the lava…
on inside of my head and that because of this I am capable of My future wife and I were going to become aliens and have eter-
reasoning again”63. The pervasive sense of uncanniness and per- nal life. My actual situation [however] was a sharp contrast. I
plexity of the Trema is replaced by Conrad’s Apophany (revela- was living in a downtown rooming house with only cockroaches
tion)77, an unexpected experience of clarity or insight60,83,126,127. for friends”112.
The individual suddenly “puts the pieces together”89,126,127, be­ Delusions can be understood as new beliefs providing a sat-
coming aware of the “truth” in the world79 or the “essence” of isfactory explanation of a strangely altered and uncanny reality
things83, discovering a delusional motif behind the abnormal and a basis for doing something about it – rather than incom-
perceptions and distressing experiences79,83 (“aha experi- prehensible and meaningless phenomena. Delusional beliefs
ence”77): “All of a sudden there came this ‘intuition’: that they can alleviate distress by replacing confusion with clarity, or pro-
had chosen me for the experiment. I was chosen to incarnate my- moting a shift from purposelessness to a sense of identity and
self in one body and come to earth. That explained why I felt a personal responsibility134,135. Delusions can indeed enhance a
stranger in my body. And a stranger on the earth too”128. person’s experience of meaning and purpose in life136, contrib-

Figure 3 Network map of lived experiences of psychosis during the first episode stage. The nodes represent the experiential themes, and the
edges represent the connections between them. The size of each node reflects the number of first-person accounts addressing that experiential
theme. The thickness of the edges reflects the number of connections between the themes.

174 World Psychiatry 21:2 - June 2022

ute positively to establishing a “sense of coherence”137 and par- voices100,104,146-148, distorted sounds or whispers149 or physical-
tially provide a sense of purpose, belonging and self-identity138. ized thinking150, visions104,111, tactile sensations of radiation65,
electricity151 or burning149 on the skin (see Figure 3).
Some reported experiences seem to support phenomenolog-
Feeling that everything relates to oneself ically-informed models suggesting that hallucinations represent
an organization of the inner dialogue152 emerging from the ip-
The experience of delusion is often subjectively reported as: seity disturbances described above97: “I avoid the use of ‘voice’
“Everything I ‘can’ grasp refers to ‘me’, even the tone of every voice to describe what occurs in my thinking. Instead, I prefer to con-
I hear, or the people I see talking in the distance”139. In Conrad’s ceptualize these occurrences by saying it is as if I hear ‘voices’…
model, Anastrophe (“turning back” of meanings) is the third phase It’s difficult to really concretely define ‘voices’ for someone else.
following the “aha experience”77. All events and perceptions are Sometimes it seems they serve as reminders of things I should or
experienced as revolving around the self (the “middle point”)140: shouldn’t do – doubts vocalized”150.
“I have the sense that everything turns around me”, “I am like a The sense of agency and ownership153 and the boundaries of
little god, time is controlled by me”, “I feel as if I were the ego-center the self are particularly disrupted by commanding voices giving
of society”, “I became in a way for God the only human being, or orders104,139,146, warnings147, insults104, soothing104,150 (more rarely
simply the human being around whom everything turns”141. encouraging66): “I felt trapped in a bewildering hole; felt like wreck-
The increased centrality of the self during a first psychotic epi- age on a derailed and deranged alien train; felt like I was about to
sode (see Figure 3) is substantiated by the delusional self-refer- be destroyed”64. The emotional correlates of these experiences are
ence of messages on the radio or television57,60,88, the gestures or ontological fear78,89 and pervasive terror84,126,139 (see Figure 3). The
conversations of people in the street57,100,139, or even the color of word “nightmare”89,126,151 is often used to describe such intense
people’s clothes130: “Colors of jeans got more realistic”142. This is anguish. A sense of entrapment is frequently reported84,88,89, along
typically accompanied by a transformation of the experience of with feelings of guilt, embarrassment66,103,151 and self-blaming111,154
the lived space (i.e., the meaningful, practical space of everyday (see Figure 3): “My shame at even hearing these words in my head
life). Individuals feel they are uncomfortably center-stage. Other ran deep, but I couldn’t make them stop. I tried my best to suppress
people look at them, spy on them, send them messages, or hide them, but they welled up like poison in a spring”79.
something from them. While in the center of the stage, individu- The experience of an increased permeability of ego bounda-
als feel things directed to them bearing personal meanings: “Cat ries or the blending of the internal and the external fields78,155-157
jumping cardboard box signified a spiritual change in me” or is sometimes explicitly mentioned: “I lost my ego-boundary
“TV, radio, people on buses refer to me”142. Individuals eventu- which meant everything external and internal seemed like one
ally become “overwhelmed”79,89, “flooded” or “swarmed”139 by blend”156 (“transitivism” for Bleuler53, “loss of ego-demarcation”
these external or internal stimuli, and the subjective experiences for Jaspers6).
become exhausting60,79,89,139,143.
The self-referential experiences are frequently associated with
grandiose delusions49,57,60,79,89,91,104,124 (“To feel like I have every- A dramatic dissolution of the sense of self and devitalization
one following me around, whether it’s negative or positive, that
alone is a force of power… knowing that you can influence peo- The dissolution of the sense of self, already present during
ple’s mind in the right way”144), or with Truman-like49,72 delu- the prodromal phase (see Figure 2), becomes more intense: “I
sions85,145 (“I deduced that I had been on a secret TV show all of had the feeling that I was dissolving and that pieces of me were
my life, similar to the Truman Show”49) (see Figure 3). going out into space, and I feared that I would never be able
to find them again”78. Individuals feel different from the usual
self65,101,114 (“I felt distinctly different from my usual self”114; “I am
Losing agency and control of the boundaries between the only a response to other people; I have no identity of my own”158;
inner subjective and the outer world “I am only a cork floating on the ocean”158), split, divided or scat-
tered into various pieces57,63,78 (Jaspers’ loss of awareness of unity
In the Anastrophe stage, the individual’s sense of agency and of the self, or ego-consistency and coherence6).
control over the delusional belief is lost (see Figure 3): “As my de- The disorder of the basic sense of self leads to a disruption of
lusional system expanded and elaborated, it was as if I was not the feeling of “mineness” in relation to one’s psychic or bodily
‘thinking the delusion’: the delusion was ‘thinking me’!”60; “My activity (Jaspers’ awareness of activity of the self, or ego-activity6)
paranoid delusions spun out of control. I was a slave to mad- and to experiences of deanimation or devitalization159 (Scharfet­
ness”79. ter’s160,161 loss of awareness of being or existing, or ego-vitality):
The experience of hallucinations dissolves the boundaries “It was not me who was engaging in such behaviors. I was una-
between the self and the surrounding world: “When I am psy- ware of my actions, observing myself in the third person”155; “I
chotic, I feel as though my awareness is happening to me. It’s a walk like a machine; it seems to me that it is not me who is walk-
passive experience. I’m at the mercy of ‘my’ thoughts and ‘my’ ing, talking, or writing with this pencil”122; “A feeling of total
perceptions of people”139. Individuals report single or multiple emptiness frequently overwhelms me, as if I ceased to exist”162.

World Psychiatry 21:2 - June 2022 175

 The experience of dissolution of the self is more marked Persecutory delusions disrupt the atmosphere of trust that
when the ego-world boundaries are compromised by passivity permeates individuals’ social interactions and familiar environ-
phenomena involving feeling under the influence of external ments167: “For me, it was about losing trust to everyone” (per-
forces114,155; thoughts being read, inserted or broadcast88,114,163 sonal communication during the workshops). The loss of trust
(see Figure 3); body boundaries being violated by entities or forc­ extends to the individual’s immediate social network, with sus-
es (“Someone cut open my head and inserted a bag”, “Areas of piciousness towards neighbors, family members, friends or
the body where forces enter”164) or parts of the body being dis- colleagues78,92,95,107: “I was afraid of people to the extent that I
placed (“Mouth was where hair should be”, “Arms sticking out wouldn’t come out of my room when people were around. I ate
of chest”164). Some individuals may even feel that their body or my meals when my family was either gone or asleep”78.
parts of it are projected beyond their ego boundaries into outer A sense of helplessness101,155 can be associated with these expe-
space (“Arms disjointed from the body”, “Legs and arms dropped riences: “You feel very much alone. You find it easier to withdraw
off”164). Altered corporality experiences such as the disembodi- than cope with a reality that is incongruent with your fantasy
ment or distancing from one’s own body or mental processes157 world”111. Therefore, the first episode is lived as an intensely iso-
often co-occur, sometimes leading to somatic delusions78,110,112 lating and solipsistic experience60,101,111,155 (see Figure 3): “Having
(see Figure 3): “I thought my inner being to be a deeply poison- no friends to visit and living alone in my apartment… I began to
ous substance”78. spend weekends sitting on the couch all day”147. Individuals fre-
These experiences are often associated with the sense of the quently withdraw (Figure 3) from family and friends66,147, college
world turning into an unfamiliar place57,65, at times chaotic and or school79,88, adopting a reclusive lifestyle104.
frightening57, which can resolve in apocalyptic beliefs about in- Withdrawal from social life is often associated with the sub-
coming wars65,89 or the inevitable end of the world88,110,112, or ni- jective inability to cope with the disrupted sense of self and the
hilistic delusions114,155: “I had the distinct impression that I did world5,111, the loss of pleasure and interest in social relation-
not really exist, because I could not make contact with my kid- ships66, delusion-fueled fears78,104, increasing difficulties in
napped self”114. understanding social interactions79, or communication difficul-
The dissolution of the self can result in extreme self-harm be- ties58,91,101,114: “I thought that I must be in hell and that part of
haviors: “When one’s ego dissolves, it becomes a part of everything the meaning of this particular hell was that no one else around
surrounding him; but at the same time, this unification entails understood that it was hell”78.
the annihilation of the self – hence the suicidal ideation”155.

Relapsing stage
Feeling overwhelmed by chaos or noise inside the head
Grieving a series of personal losses
The disorganization of thoughts is a prominent experiential
theme66,84,108,163,165 (see Figure 3): “My head is ‘swarming’ with “At the time, my diagnosis was equal to the death sentence.
thoughts or ‘flooding’. I become overwhelmed by all the thinking Nothing could have been more devastating. Not even death it-
going on inside my head. It sometimes manifests itself as incred- self”62. During the relapsing phase of psychosis, individuals are
ible noise”139. Words such as “rollercoaster”124, “whirlwind”114, frequently confronted with a series of losses, leading to an expe-
“vertigo”79 or “maelstrom”5 are used by individuals to try to con- rience of grief for their pre-psychotic self124,168 (ego-identity6) that
vey an experience of inner chaos and confusion, which is diffi- impacts their confidence and self-esteem102,169,170 (see Figure 4):
cult to articulate accurately through language151 (see Figure 3): “It’s hard to recall the past. Hard to accept things will be like this
“Being in a whirlwind is not a very good metaphor for that expe- from now on” (personal communication during the workshops).
rience, but I have trouble finding words to describe it”114. These losses frequently include their past identities, as in-
As one individual describes, thought disorder can be expe- dividuals often feel that they have to assume the new role of
rienced as a “weakening of the synthetic faculty”. “My thoughts “mental patient”: “I entered the hospital as Robert Bjorklund,
seemed to have lost the power to squeeze things to clear organi- an individual, but left the hospital three weeks later as a ‘schizo-
zation”84. The weakening of the natural “core self” that organizes phrenic’”171. Individuals also grieve their individuality65,171, as
the meaning and significance of events166 can lead to a disturbed they feel different compared to others133: “At first, it made me
“grip” or “hold” on the conceptual field97. think that I was weird and different from everyone else. I didn’t
like feeling that I wasn’t a part of the main group of people in life
who were healthy and/or “normal”156.
Losing trust and withdrawing from the world Public stigma94,156,170,172,173 towards mental disorders fuels
feeling of rejection50,56,126,156,174, further reducing social networks
50,66,101,130,169,174,175
During the first episode of psychosis, individuals frequently and personal relationships105,107,156,169,173
report losing trust in others (see Figure 3): “While I was in hos- (see Figure 4): “People would constantly joke about mental
pital, I was frightened, but at the same time I felt safe. I knew the illness, and it was difficult for me to deal with”172. As a result,
workers were there to help me, but I just couldn’t trust anyone”66. individuals typically hide their diagnosis92,94,102,156,173,174,176:

176 World Psychiatry 21:2 - June 2022

Figure 4 Network map of lived experiences of psychosis during the relapsing stage. The nodes represent the experiential themes, and the edges
represent the connections between them. The size of each node reflects the number of first-person accounts addressing that experiential theme.
The thickness of the edges reflects the number of connections between the themes.

“I struggled with accepting the diagnosis, and I never told any- years under psychiatric care and in the three years leading up
one about it”156. to them was the existence of an inner reality that was more real
Another personal grief is for the premorbid sense of auton- to me than the world’s outer reality”78; “The difference between
omy, as even the most mundane activities can now represent normal reality and psychosis feels extraordinarily subtle. It can,
enormous challenges89,94,102 (see Figure 4): “Something as ba- in its subtlety, encroach on me without my even noticing… That’s
sic as grocery shopping was both frightening and overwhelm- why, today, I have a healthy respect for the cunningness of psy-
ing for me. I remember my mom taking me along to do grocery chosis”139. Individuals can also feel split about the diagnosis and
shopping as a form of rehabilitation… Everything seemed so the need for ongoing medication: “I find it difficult to accept the
difficult”94. Difficulties in completing daily activities, perform- continued professional opinion that I should take medication for
ing at school or work57,58,78,102,110,175-177 and maintaining employ- my ‘condition’ over the long term”107.
ment47,57,94,95,101,110,114,124,174 trigger sentiments of frustration and This phenomenon of “double awareness”179, in which the
discouragement47,57,59,101,102,169,177 (see Figure 4). person continues to simultaneously live in two realities98 (i.e.,
Individuals also mourn the loss of the sense of meaning or the real and the delusional world), was originally referred to by
purpose that psychotic symptoms provided during the “aha” Bleuler53 as “double-entry bookkeeping”.
and Apophany phases132,133: “In my delusions, I had been a hero-
ine on a mission; now that I was back on medication, I spent
most of my days lying in bed, hating myself with a vengeance. An uncertain future
Grief? Who knows?”133. Commonly, individuals struggle with
post-psychotic depressive mood following the remission of acute Following remission of acute psychosis, individuals face the
symptoms101,108,112,132, feeling “flawed”94 by a lack of accomplish- task of rebuilding their identities and goals124,154,169: “Eventually,
ments169, leading to feelings of hopelessness and fragility178 or as discharge from my two years of treatment drew close, I was
the belief of being a “failure”94 (see Figure 4). asked the big questions. What did I want to do now?”154. In this
context, a psychotic relapse can be interpreted as a threat or even
the complete abolition of a person’s goals and future. Individuals
Feeling split between different realities can feel that past aspirations and plans in life are now completely
out of reach94,127,177: “In my eyes, my life was over. Everything I
Following remission of florid symptoms, individuals can had dreamt of doing, and all my aspirations in life, were now
feel “split” between the outer world and the private delusional nonexistent. I felt completely nullified”66.
worlds78,155,176 (see Figure 4): “A constant during most of these The sense of uncertainty is enhanced by the lack of a clear

World Psychiatry 21:2 - June 2022 177

roadmap ahead: “That’s what getting out of schizophrenia is like: missed (see Figure 5): “I go out among people almost every
there are no clues, no map, no road signs like ‘wrong way’, ‘turn day and, although I still feel ‘stared at’ and occasionally talked
here’, ‘detour’, ‘straight on’. And it’s dark, lonely, and very fright- about, I do not believe, even if I am psychic, that I am an agent of
ening. You want nothing to do with it, but your return to sanity God”91.
is at stake”139. The unpredictable evolution of the disorder also During this stage, individuals have often also learned how to
contributes: “However, now what I want more than anything cope more effectively with their symptoms, for instance ignor-
else is to be sure that the things that I went through will never ing the voices and delusional ideas, partially regaining a sense of
happen again. Unfortunately, that is not an easy thing to guar- agency or control50,112,127,150 (see Figure 5): “I think the quality of
antee”46. the thought-voices evolved as my health evolved. I no longer hear
The acceptance of the diagnosis and the related uncertain fu- suggestions to run into traffic; if I did, I would refuse. I’m able to
ture typically begins during this stage, but often requires several judge the appropriateness of the advice”150.
years of inner struggles66,88,92,139,156. All this aids the individuals to come to terms with the diag-
nosis and its impact: “At 42, I think I’m slowly getting better or
at least getting better at dealing with the difficulties that re-
Chronic stage main. I feel stronger and more stable now than ever before”58.
Acceptance of psychosis and the new self60,150,169,170,180,182,183 is a
Coming to terms with and accepting the new self-world slow process that typically takes several years: “For a long time
I searched for a lesson from my experience. What I learned was
During the chronic stage of psychosis, individuals often re- to build a new life and new dreams based on what I find myself
port feeling more optimistic about the future or believing that capable of doing today”89.
the worst is now behind them47,57-59,61,62,78,91,94,95,101,124,129,150,170,177 However, a sense of grief and loss for the old self and the life
(see Figure 5): “After more than 40 years of psychosis, I can now before the disorder can still persist124,133,150,168,175,184: “Though I
say, I feel better than I have ever felt in my life”95. Individuals may am working again, I have a pervading sense of loss about my life.
also report feeling more satisfied with their occupational activi- This illness has affected all aspects of how I perceive myself and
ties than before47,49,50,59,62,78,82,91,101,112,129,133,173,177,180,181 (see Fig- how others perceive me”184. This is accentuated when the indi-
ure 5). viduals with lived experience of psychosis compare themselves
As the intensity of psychotic symptoms and the associated with healthy peers108, feeling worthlessness or inferior124,133,185,186
distress frequently decrease127,147, they can be more easily dis- (see Figure 5).

Figure 5 Network map of lived experiences of psychosis during the chronic stage. The nodes represent the experiential themes, and the edges
represent the connections between them. The size of each node reflects the number of first-person accounts addressing that experiential theme.
The thickness of the edges reflects the number of connections between the themes.

178 World Psychiatry 21:2 - June 2022

Persisting inner chaos not visible from the outside other race”, or “I lack the backbone of the rules of social life”191.

An unstable sense of self and the world can persist in this

stage: “The clinical symptoms come and go, but this nothing- THE LIVED EXPERIENCE OF RECOVERY AND OF
ness of the self is permanently there”157. These experiences can RECEIVING TREATMENTS FOR PSYCHOSIS
include an ongoing sense of unreality of the world58,155 and diso-
rientation139,157, and disorders of the sense of the self, such as de- This section explores the lived experience of recovery and of
vitalization, disintegration or disconnectedness155,157,185, loss of receiving treatments for psychosis. As the latter is determined by
agency149,187, and fear of doing something that might have nega- the type of care delivery platform and contexts, we first address
tive consequences103,139 (see Figure 5). the subjective experiences of receiving treatments across differ-
A tumultuous inner world may be described, even if it is not ent mental health settings and subsequently focus on specific
“visible” from the outside5, with a constant feeling on edge from treatments. To reflect the multitude of possible experiences, we
slipping away from reality: “Although on the outside things seem emphasize both core positive and negative aspects.
to have calmed down greatly, on the inside there is a storm rag-
ing, a storm that frightens me when I feel that I am alone in it”5.
The experience may be aggravated by the feeling of not being Recovery as a journey towards meaningful goals
able to trust one’s own mind5,185,188 (see Figure 5).
Individuals feel that recovery extends beyond symptomatic
improvement192 (“It is not necessarily the disappearance of symp­
Loneliness and a desperate need to belong toms”101), but rather is about achieving a sense of subjective con-
trol and being able to “do something about it”193: “Recovery to
While some improvements in socialization may be report- me means that, even if the delusions are not completely gone, I
ed47,49,50,82,101,114,127,133,175,180,181 (see Figure 5), social relationships am able to function as if they are”72. Notably, “The road of recov-
tend to remain a major concern during the chronic stage of psy- ery is totally different for each person and different in each stage
chosis63,112: “I look at people, and I don’t feel like one of them. and across different ages” (personal communication during the
People are strangers”185. workshops).
Pervasive feelings of loneliness and isolation63,112,133,168,181, Recovery from psychosis is commonly experienced as a cycli-
183,185,186,188
, including feeling “cut off from humanity”185, are cal and ongoing process that requires active involvement94, and
commonly reported, and have been confirmed at meta-analyt- is hardly ever “complete”194. This recovery “journey”133,192 is filled
ical level189. There is often a strong and desperate call to feel un- with back-and-forth, rather than being a linear path with a set
derstood, connected and accepted5,133,185 (see Figure 5): “I need endpoint: “a long, solitary journey, with almost as much shock
people to accept me enough to want to build a relationship with and fear at its outset as with the psychosis”133. It is, therefore, a di-
me… I feel cut off, cut off from humanity… I am already sepa- alectical process on its own. Or, as described in another account:
rated… I isolate myself on purpose because when I’m around “Recovery can be a process as well as an end… Recovery means
others, that chasm between me and the world gets more pro- finding hope and the belief that one may have a better future. It is
nounced; at least when I am alone, I can pretend I’m normal”185. achieving social reintegration. It is finding a purpose in life and
This desire for human warmth and closeness can be frus- work that is meaningful. Recovery is having a clear direction”101.
trated by equally intense fears of reaching out to people5, diffi- In more practical terms, recovery appears as a deep and pro-
culties in communicating with others185, and not being able to tracted struggle to restore meaning and one’s sense of self and
convey the nature of psychotic experiences5,58 (see Figure 5): agency193,195,196, re-establishing an active relationship with the
“The more I try to speak, the less you understand me. This is why world83,183: “As I recover, I am also faced with rebuilding my iden-
we stop trying to communicate… Not being able to communi- tity and my life. Making the decision to end my career profoundly
cate my basic feelings, not identifying with another human be- affected my sense of identity and self-worth, and I have been left
ing, and feeling completely alone in my experience are killing since searching for meaning and for a means by which I can con-
me”185. Stigma and misunderstandings about mental disor- tinue to help others”183. As such, recovery is often understood by
ders58,110,133,139,168,173,180,184,186,188,190 and feelings of shame185 am- individuals as the ability to move towards meaningful goals94,183,197:
plify the experience of loneliness49,173 (see Figure 5). “Recovery for me means serving a purpose; I think it is important
Difficulties in establishing and keeping social relation- for me because I felt ‘useless’ when I struggled through psychosis”
ships108,112 reiterate a weak attunement to the shared world of (personal communication during the workshops).
“unwritten” codes of social interactions (see Figure 5)187: “Mak- The recovery process also involves a strengthening of the
ing friends is pretty much a mystery to me. Even though I have person’s ego-identity by building a sense of continuity with the
made some friends in my life, I cannot seem to master or under- past and a projection towards the future. Following a first epi-
stand the skill”188. Individuals express this hypo-attunement to sode, some young people view recovery as going back to their
the social world with statements such as: “I cannot associate old selves, to “the way I was”195. For others, the recovery process
with other persons”, “I always felt different, as if I belonged to an- requires a personal transformation of their identity and goals183

World Psychiatry 21:2 - June 2022 179

and the acceptance, not only of the disorder193, but also of one’s trauma that I’d already experienced in my home, being yanked
limitations: “For me, recovery has been about admitting some- out to an ambulance… It was a very nasty experience"206. The
thing is wrong, about acknowledging my limitations. Recovery experience is associated with feeling powerless108 and lacking
language focuses on what the person can do; I had to look at privacy207, which can be re-traumatizing for those with previous
what I couldn’t do before I could start to get better”185. A such, histories of abuse206.
recovery is not necessarily about returning to the “past self”192, A perceived “lack of compassion”208 from the staff can lead
but implies assimilation of the experience into a new sense of self to a sense of being “dehumanized”209: “‘Noncompliant’, passive
and a transformed understanding of the world and the person’s dependent, passive-aggressive… they all mean the same thing:
role in it83. you’re not really you”209. Negative experiences of inpatient care
Some young people feel that the recovery experience lead can discourage future attempts to seek help84,151,204 and hamper
them to mature or make essential changes in their social rela- long-term trust in the health care system: “I think if you don’t
tionships195,196,198. Psychosis can also provide new perspectives come out and get a good experience right after that, then that’s
on life and relationships, including insights into one’s life histo- how you perceive the whole system”208.
ry183, increased empathy towards others94,124,172, or a rebalancing However, in other cases, hospitalization can bring a much
of life’s priorities56,101,169: “I have more empathy for others and sought-after sense of safety and relief, particularly during acute
have a deeper understanding of what the human body is capa- psychosis66,78,114: “The hospital was a safe haven”210. Hospitaliza-
ble of. These components that make up my reality, to me, are the tion can also alleviate the personal exhaustion which follows the
essence of life”66. efforts to maintain a semblance of normalcy: “It was a relief to be
Supportive relationships are critical facilitators of the recovery in a place where it did not matter if you went off somewhere in
journey: “The key to recovery for me was having really good sup- the middle of a conversation. It was a relief not to have to fight
porting relationships that didn’t break when everything else was all the time to maintain a semblance of sanity… It was a relief to
breaking” (personal communication during the workshops). A be able to be honest”78.
relationship is perceived as helpful when it transmits hope for The hospital can therefore provide a “respite” from the stress
the future58,94,105,177,197,199: “Most importantly, my care team be- of life outside205, at times providing opportunities for recreation
lieved in the certainty of my recovery in a period of life when I and the incorporation of healthy habits66,108, as well as time to
just wasn’t able to”126. Supporting relationships also facilitate reflect on the past and plan for the future: “It gave me a chance to
understanding of the unusual experiences6,200,201 in the context think about what I really wanted to do with my life. I no longer
of compassionate139,202 and positive attitudes150, and realistic ex- wanted to continue working at a dull job where I was unhappy…
pectations203. There should be more to life”57.
Following discharge, the hospital can remain a safe haven to go
back to during times of distress: “At those points in my life, the safe-
The lived experience of receiving treatments across ty (albeit restrictive safety) offered by an institution was preferable
different health care settings to the responsibilities I felt I could not handle outside”211. As such,
individuals can develop an ambivalent relationship with hospitali-
Inpatient care: a traumatic experience or a respite zation, given the mixture of negative and positive experiences, es-
pecially when compulsory treatment was involved: “It would be a
“The attendants carried me into the dark corridor. A jumble of while before I realized hospital was there to help me in crisis rather
voices bounced off the walls – harsh bellows, still murmurs, and than to further torture me as the voices had threatened”84.
authoritative orders – but to me, the sounds blended together in Social relationships in the ward may have a solid positive im­
a common senselessness”48. Admission to a hospital commonly pact on the subjective experience: “I found the staff usually kind,
occurs in the context of fear, chaos and confusion48,66,84, fuelled competent, and extremely tolerant of me and my fellow patients”
by delusional ideas49,124,182. 211
. Positive experiences are also linked to opportunities for in-
Negative experiences of being admitted to inpatient wards ward socialization that counter the sense of isolation48,132,172,199.
can trigger a sense of isolation132, hopelessness and uncertainty For some individuals, the ward experience provides support
for the future49,66,204: “I wondered if I was ever going to recover; I networks that can persist after discharge: “Being in hospital is a
wondered if I was ever going to be normal”66, and are often more painful experience, but it’s also a personal journey, and for me,
pervasive for young people who are inappropriately admitted to it was forming friendships on the ward that pulled me through
adult mental health services205: “There were only a few younger (and continues to do so)”172.
ones in their twenties or thirties… I had heard someone use the
term "chronic wards"… It didn’t sound like a nice term”48.
The subjective experience of compulsory treatment or physi- Preventive and early intervention services: promoting
cal restraint during inpatient care is typically recalled as trau- and restoring hope
matic: “The first time was very traumatic… I refused medication,
and I was held down and injected by six staff. What I feel strong- The subjective experience of individuals accessing specialized
ly about is that no one gave me a choice… [this] added to the preventive (e.g., clinical high-risk) or early intervention services

180 World Psychiatry 21:2 - June 2022

for psychosis is markedly different compared to standard inpa- reminder that they are under mental health treatment218,220: “As
tient units. These services provide specialized and youth-friendly I’ve got better, it’s not nice having somebody come in all the time,
care during a clinical high-risk state or first episode of psycho- because it constantly reminds you that you’re suffering from an
sis34,212,213. Their focus on recovery is greatly valued by young illness”218.
users214-216: “They get me more active. They encourage me to be
interested in things and think that I have a future. I thought my
life was coming to an end and they kind of encouraged me to see Outpatient care: opening the gates to the community
that there is life after psychosis”216.
Individuals value the support with everyday practical chal- In the lived experience of persons with psychosis, practical
lenges – such as social relationships, employment and housing and accessible outpatient services promote autonomy and con-
– suited to their actual needs and concerns215-217, provided by trol: “You can come for the treatment, and the gates are open
these services. In addition, when services are located within a for you to come”223, as well as fostering the sense of feeling wel-
youth-friendly setting outside the “mainstream” psychiatric in- comed: “It gives you an idea of home, it does not have that mys-
stitutions, they are perceived to reduce the feeling of shame and tification that it is that closed, trapped thing and that you are
self-stigma often attached to accessing mental health care217, hospitalized behind closed bars”223. As a result, the experiences
providing a “human touch”214 and high quality of relationships of receiving outpatient community care can provide an opportu-
with the care team that are key in the recovery process208,215-218. nity for strengthening social bonds and networks.
In particular, individuals appreciate the opportunity to be Friendly and easily accessible outpatient multidisciplinary
involved as “partners” in the treatment decisions, as well as the teams are perceived of utmost importance to achieve this: “I feel
experience of being treated “as a human being”214,217, since staff good, this is a family, if I’m not feeling good, they reach out for
“listen and ask your opinion”214, while at the same time being me. So here I found the people that really helped me. Every single
allowed to “describe what I was experiencing” with their own one of them, from the cleaning mister to the service coordina-
words, rather than over-relying on diagnostic labels208. tor"223. These positive experiences are also crucial for promot-
In addition, availability of staff214,216 and continuity in care216, ing treatment adherence: "What gets me here is fraternity… They
218
are emphasized as positive aspects: “I was seeing my key gave me so much fraternity that I end up saying to the doctor
worker every week or two, which was very good”218. Continuity that out there, in my first life, second life, third life and present
in care has been highlighted as a key trust-enhancing factor219: life I never had as much fraternity as I’m having here, I’m not
“Opening-up to the therapist requires trust; it takes time to build drooling, it is the truth"223.
up that relationship” (personal communication during the work­ On the contrary, negative experiences of outpatient care re-
shops). sult from fragmented services that expose users to repeated as-
Young users also value how these services support them in sessments and excessive waiting lists due to inter-professional
developing a positive sense of self by sharing their experiences miscommunication126,224. Individuals often feel struggling with
with others216-218: “I’ve met quite a few people with similar prob- ever-changing care teams and limited appointment times that
lems to me, and it’s helped because we’ve discussed how we’re are not enough for professionals to get to know them beyond
different and tried to suggest ways that can sort of help each oth- the diagnostic label: “The various mental health professionals I
er or help ourselves”216. Preventive and early intervention teams saw at three separate psychiatric hospitals reinforced my nar-
also provide a sense of certainty and safety215,216: “This is what rowly defined diagnosis. Little effort was made to look beyond
I’ve been looking for, somebody who actually knows what they’re the many incongruences of my condition”171. In addition, the
talking about”220. competing theories about psychosis can cause confusion, as in-
For young individuals at clinical high-risk of psychosis, spe- dividuals can feel as if “[clinicians] see what they want on your
cialized care provides an opportunity to disclose the distressing psychosis” (personal communication during the workshops).
experiences often kept hidden from family, friends and profes- The impersonal nature of some services can lead to an ampli-
sionals. Understanding can emerge through a process of shared fication of the inner feeling of objectification characterizing the
exploration and creation of links221 between symptoms and life experience of psychosis: “If you enter the psychiatric business
experiences: “This ‘normalization’ of my difficulties was one of as a patient, then you have a high chance of being reduced to a
the most helpful elements of therapy, as it very quickly reduced disturbing object or to the disorder itself. Only that which is sig-
my fear of being ‘mad’, which had been the most disturbing of nificant to the diagnostic examination is seen and heard. We are
my worries”222. examined but not really seen; we are listened to but not really
On the other hand, discontinuity of care due to high staff turn- heard”65. As a result, excessively bureaucratic clinical settings
over, whenever present, is felt like an essential source of frustra- foster stigma and isolation209.
tion also within these services, as “it takes a whole load of time Individuals may also feel rejected by the service due to lack of
to build up trust in someone”218. Furthermore, following symp- expertise among staff: “There are no guidelines to do that”65. Ad-
tomatic and functional improvements, individuals can gradually ditionally, outpatient services can be perceived as insufficient in
lower their engagement with preventive or early intervention their treatment offers when there is a narrow focus on one-size-
services, that are perceived as an unnecessary and undesired fits-all approaches214.

World Psychiatry 21:2 - June 2022 181

The lived experience of receiving specific treatments for Furthermore, people with chronic psychosis often point out
psychosis that adequate community integration requires a delicate bal-
ance between socially-promoting activities and having the
Social interventions: finding one’s own space in the world space for solitary time78,231,232. This feeling has been confirmed
by ethnographic studies, indicating that people with psychosis
“I finally felt independent again. I was beginning to manage may develop a particular way of feeling integrated within so-
my mental illness. I was responsible again for my own space in ciety by keeping “at a distance” (i.e., neither too close nor too
the world”225. Social interventions are perceived as supporting distant)233,234: “I need to be alone… If I were living in the coun-
individuals in rebuilding their disturbed sense of self by foster- tryside, nobody would care about my solitude, but in the city, no
ing autonomy and independence96. As previously discussed, one is allowed to live like a hermit”234.
one core component of psychosis is the disruption of the per-
son’s natural engagement with the world. Following a first epi-
sode, young individuals often view their recovery as being able Psychological treatments: sharing and comprehending
to feel “normal” again195, which essentially means reintegrating one’s experiences
into society192, re-entering the workforce or going back to study
in socially valuable roles193. Therefore, they feel that interven- Psychological treatments are perceived as essential to provide
tions supporting their study or work help them in regaining their the first channel to open oneself about difficult-to-communicate
sense of purpose177,202 and confidence226: “I waged this war not psychotic experiences226,235: “I wanted to learn to talk about my
because I am so brave but because I absolutely had to in order to psychotic experiences, to communicate about them, and to learn
keep my job”170. to see their meaning”65.
Interventions supporting an independent housing are also For many individuals, recovery requires developing a com-
key in the process of strengthening personal agency, fostering plex and meaningful understanding of their distressing expe-
stability, autonomy and independence224,227: “Here [in the new riences, which re-establishes a sense of continuity in their life
house] I met new friends who accepted me. My attention shifted narrative and overcomes the disturbances of the awareness of
to pleasure and was increased through meeting new friends and identity65,183,193,196,236-239: “Psychotic episodes don’t happen out
enjoying the courses on offer”202. of nothing. There’s always a reason for it. Unless the person is
Social interventions are also essential to reduce the expe- helped to make sense of that, they are not properly recovered”
rience of isolation and shame. This applies in particular to (personal communication during the workshops).
peer-support groups180, which “normalize” the psychotic experi- Given the intense search for explanations during the Trema
ences208,217, allowing the affected individuals to feel “liberated” phase of psychosis onset240, finding meaning through a shared
and hopeful: “They just told me that the fact was, there are other collaborative process allows the individuals to feel understood
people like you, and you can get better from it”217. Peer-support by others237, reducing their sense of isolation and loneliness: “So
groups also help individuals to feel connected228 and more ac- powerful is this desire that I often speak fervently of the wish to
cepted184: “[The peer-support group] allows people to share their place my therapist inside my brain so that he can just know what
experiences, rediscover their emotions, and prepare for new jour- is happening inside me”5. However, not all individuals will nec-
neys… where we can all support each other toward the goal of essarily succeed in discovering new meanings for their disorder:
recovery and a better life”228. “I’ve never been good at the ‘finding meaning’ thing” (personal
Social interventions are also felt as helpful to overcome the communication during the workshops).
passive role of affected individuals, stimulating a more proactive The experience of receiving psychological treatments is val-
engagement in their care: “I feel less like an outsider and more ued when it flexibly allows individuals to experiment241 different
like someone with something to offer”229. The positive experience approaches and strategies: “My initial strategy for change was to
of receiving these interventions is enhanced by the dialogic co- take a break from the high-stress activities that have historically
responsibility of the partnership established across various so- triggered symptoms and to instead focus on ‘anchoring activi-
cial actors, involving the community and the family230. ties’ that I find personally meaningful, intellectually challenging,
The negative aspects of the experience of social interventions and conducive to ‘connectedness’ with others”183. Therefore, the
occur when the personal values of affected individuals are not experience of these treatments is highly personal, as reflected
prioritized, becoming purposeless186: “Occupational therapy by the range of psychological coping strategies subjectively pre-
was supposed to engage me in what the professionals deemed ferred, including improving mental health literacy and recogniz-
meaningful activity. So I painted, I glued, and I sewed. I was oc- ing early warning signs94,151,172,210, self-monitoring151,197,242,243,
cupied, but where was the meaning?”132. These adverse experi- developing meaningful alternative activities108, setting a rou-
ences are widespread when individuals are asked or expected to tine63,108, learning to interact with the voices150,238, reducing
conform and socially perform like everyone else: “I have to do stress or “triggers”46,180,183,244, relaxation151,202 or distraction245,246
things differently… It is unfair for others to expect us to finally techniques, sharing and discussing the experience with oth-
finish that college degree and finally get that job… It makes us ers82,150,172,242,245,246, or employing reality-testing and disconfir-
feel ashamed and hopeless and depressed”185. mation strategies46,88,131,232.

182 World Psychiatry 21:2 - June 2022

 On the contrary, psychological treatments are felt unhelp- into someone I am not; on the contrary, I always have felt that
ful when they are “forced” upon the individual or deny his/her haloperidol removed all the barriers that were preventing me
individuality186: “The person needs to identify what psychother- from being who I am”60. Medication can provide a sense of being
apy works best for them – what works for me does not necessar- normal, even if it does not wholly restore premorbid functioning:
ily work for someone else” (personal communication during “I consider myself to be normal when I am on medication… And
the workshops). Poor attentive listening is also perceived as I do function normally when I am medicated, except for my in-
impeding the affected individuals to speak in their voice and ability to make friends”188.
share their meanings appropriately247. Moreover, during psy- These positive experiences often clash with the distressing
chological treatments, individuals feel that voices should be side effects, which can impact the person’s daily life abilities:
balanced, with no dominant voice, even if there are different “After two weeks, the side effects of risperidone became intoler-
views248. able. I slept at least 16 hours a night. I had a voracious appe-
Psychotherapeutic relationships are also seen as not valuable tite, akathisia and severe anhedonia”104. In particular, for young
if both parts are not allowed to contribute and learn: “Clinicians people during a first episode, side effects are often perceived
need to give space to the patient and learn from the patient. as severely limiting their social functioning abilities195. This is
There’s a lot to learn from the patient” (personal communica- a common reason for medication abandonment or rejection
104,130,147
tion during the workshops). Judgmental, preaching or lecturing .
attitudes235 can lead to individuals feeling invalidated, which in- The person can thus feel conflicted186,203, due to having to
creases the experience of lacking agency, and feelings of isola- choose between two challenging scenarios: “It is hard realizing
tion and discrimination: “When I have been preached or lectured that I probably will have to continue taking medications for the
in talk therapy, I felt my thoughts were far less valuable and con- rest of my life, but the misery without them is terrible”147. The
tributed less to the conversation”235. decision becomes then “a question of personal values”253: “[The
An excessive emphasis on a rationalistic (reality-testing) ap- person] must decide what side effects and what degree of symp-
proach in the psychotherapy of delusions and hallucinations is toms are intolerable”253. It is worth emphasizing that shared
often perceived to aggravate146 the sense of self-alienation, po- decision-making enhances the sense of personal agency and au-
tentially through the intensification of hyper-reflexivity249,250. tonomy61,108,148,150,172,186,210.
Under these circumstances, the experience of receiving psycho- Another negative experience of receiving antipsychotics is the
therapy may amplify the ipseity disturbance, perplexity, lack of feeling that one has not really recovered195 or that something is
common sense and sensation of being different from others that “wrong” with oneself: “During each psychotic episode, my family
have been described above251: “My recollections of any profes- tried to get me medical help. Medications were prescribed, but I
sionals challenging my hallucinations or delusions [during psy- refused to take them. I didn’t believe anything was wrong with
chotherapy] are filled with feelings of hostility and resentment. me… Those pills were for crazy people!”92. The associated desire
After that, I would just tell them whatever they wanted to hear to feel “normal”48 may be asserted: “I refused to go to any more
about my progress”146. doctors or take any more meds. I wanted to live a normal mar-
Similarly, a psychotherapeutic attitude that discredits the ried life; normal people don’t have to take pills to think clearly
lived experience of psychosis as “meaningless” aggravates the and act appropriately”254.
sense of self-alienation: “Untold damage can be caused by ig- Antipsychotics may be also perceived as necessary but not
noring or trivializing [the experiences]. When regarded as just sufficient to promote a complete recovery: “I have found that,
bizarre or symptomatic of the illness and not psychologically although psychiatric medication aids in the management of
treated with appropriate validity, the intrinsic states of with- some of my symptoms, it only treats part of the problem”61. As
drawal are often exacerbated”186. a result, the combination of medication with other treatments is
often regarded as more acceptable57,127,243,255, with varying com-
binations across the different phases of the recovery process:
Medications: struggling with ambivalent feelings “At the beginning stage, pharmacological treatment was more
important for me; it allowed me to be stable and be able to go
The experience of receiving medication for psychosis, in par- on with my life. As I started to improve, the psychosocial treat-
ticular antipsychotics, is often complex and ambivalent: “The les- ments were more important” (personal communication during
son is that psychiatric medications have two sides, on the one the workshops).
hand creating adverse effects and on the other hand alleviating Indeed, while providing symptomatic alleviation, medication
and preventing psychiatric symptoms”203. may not address the underlying basic-self disturbances described
Medication is frequently considered helpful in alleviating dis- above that fuel and sustain symptom formation: “Medications
tressing symptoms61,92,127,243 or creating the necessary conditions can and do help with many of the frightening and distressing
for add-on psychosocial or psychological interventions60,88,252. symptoms of schizophrenia, but they do not resolve anything
Medications are often perceived to rescue the core self from the beyond the apparent manifestation itself. What lies behind the
perturbation of the disorder: “The experience of medication was symptoms is a tormented self, a highly personal experience un-
such that there has never been any feeling that it has turned me changeable and irreplaceable by any physical treatment”157.

World Psychiatry 21:2 - June 2022 183

DISCUSSION new self, the diagnosis and an uncertain future. While these ex-
periences partially blur across the different stages, the life-course
This paper is based on the lived experience of individuals who of psychosis is marked by an inner experience of loneliness,
have gone through the semi-darkness and shadows of a psychot- stemming during the premorbid phase and persisting until the
ic crisis. We have followed and transcribed the words of these in- chronic stage.
dividuals, their emotions and forms of expression, their anguish Finally, we analyzed the positive and negative subjective ex­
and despair, their hopes and their silent cry for help. The paper, periential aspects of inpatient and outpatient care, social inter­
therefore, belongs to all the individuals with a lived experience of ventions, psychological treatments and medications. The experi-
psychosis who have co-written it with researchers. ence of receiving these treatments is determined by the hope of
This double perspective on psychosis represents an innova- achieving recovery, understood as an enduring journey of recon-
tive methodological attempt in the existing literature. It is only structing the sense of personhood and re-establishing the lost
by following different paths and languages that it is possible to bonds with others towards meaningful goals258. Good practices of
look at psychosis with fresh eyes that can capture the vividness care for persons with psychosis are first and foremost based on
of the subjective experience of suffering. This is best achieved by the understanding of what it is like to live with psychosis and re-
allowing personal insights to re-emerge into life and putting ide- ceive psychiatric treatments.
ologies and traditional ways of thinking in brackets. Although it is not easy to listen to and understand the human
Such an approach also helps to minimize injustices, especially and experiential reality of patients who are about to relive or
those related to exclusion and silencing of the affected persons’ re-express their stories, it is not possible to “do” psychiatry and
voices, distortion or misrepresentation of their emotions, mean- to provide treatments without starting from these inner reali-
ings, values and understanding of oneself and the other, unfair ties – from these lacerated subjectivities that yearn to be heard
distribution of power, and unwarranted distrust256 – i.e., prevent- and understood. The present paper is a reminder to clinicians
ing these persons from speaking for themselves about their own not to be afraid to descend in the therapeutic relationship with
views and purposes because of others claiming to know what their patients affected with psychosis to penetrate their subjec-
those views and purposes are. tive world.
We attempted to prioritize the patients’ first-person perspec- By comprehensively improving the understanding of what it
tive rather than confining ourselves to descriptions of psychosis is like to live with psychosis, this paper may additionally benefit
from a third-person perspective. Although this paper is dedi- several other areas. We hope that it will be widely disseminated
cated to outlining some of the essential (paradigmatic) ways across clinical networks as well as patient and family organiza-
psychosis expresses itself, there is no assumption that the mate- tions, to substantially improve the mental health literacy of indi-
rial presented is necessarily comprehensive or generalizable to viduals affected with the disorder, their families and carers. The
all individuals affected. Although psychosis may have a formal paper may also hold an educational potential to train junior doc-
framework common to all its clinical expressions, the contents tors in psychiatry, medical students and other health care pro-
and ways of being manifested in it are personal and idiosyn- fessionals. Furthermore, health care providers may access this
cratic. It is, therefore, evident that is no such thing as a unique co-developed source of core subjective experiences to refine the
experience of psychosis that can be delineated. Instead, a plural- design and delivery of mental health services.
ity of experiences has been captured, reflecting the intrinsic het- On a research level, this paper resurfaces the psychological
erogeneous nature of psychotic disorders. Bleuler himself coined and existential essence of psychosis, going against the current
the term “schizophrenias” to acknowledge heterogeneous syn- tide of a psychiatry “without psyche”259, which reifies scientific
dromes characterized by multiple presentations and different epistemology silencing the fundamental expression of the hu-
possible trajectories53,257. man experience of psychosis. This observation is empirically
Within these limitations, the present paper has first decom- corroborated by the imbalance on top-ranking scientific jour-
posed the experience of psychosis across core clinical stages. We nals (with some exceptions) between neuroscientific articles
have found that the early phases (i.e., premorbid and prodromal and the field of phenomenology and first-person accounts. It
stages) are characterized by core existential themes spanning is not possible to grasp the real and dialectical dimension of
from loss of common sense, perplexity and lack of immersion in psychosis without a deep-rooted phenomenological approach
the world with compromised vital contact with reality, height- that goes beyond the categories of natural sciences. The experi-
ened salience and feeling that something important is about to ences described here may help to unmask the series of preju-
happen, perturbation of the sense of self, and need to hide the dices and misunderstandings with which natural sciences often
tumultuous inner experiences. The first episode stage is denoted reduce the complexity of psychosis, and to reflect on the limits
by some transitory relief associated with the onset of delusions, of knowledge in psychiatry and on the meaning of research in
intense self-referentiality and permeated self-world boundaries, this area.
tumultuous internal noise and dissolution of the sense of self Overall, this paper reminds us that psychosis is one of the
with social withdrawal. Core lived experiences of the later stages most painful and upsetting existential experiences, so dizzyingly
(i.e., relapsing and chronic) involve grieving personal losses, feel- (apparently) alien to our usual patterns of life and so unspeak-
ing split and struggling to accept the constant inner chaos, the ably enigmatic and human.

184 World Psychiatry 21:2 - June 2022

REFERENCES 32. Stanghellini G, Broome MR, Fernandez A et al. The Oxford handbook of phe-
nomenological psychopathology. Oxford: Oxford University Press, 2019.
1. Moreno-Küstner B, Martín C, Pastor L. Prevalence of psychotic disorders 33. Broome MR, Harland R, Owen GS et al. The Maudsley reader in phenom-
and its association with methodological issues. A systematic review and enological psychiatry. Cambridge: Cambridge University Press, 2013.
meta-analyses. PLoS One 2018;13:e0195687. 34. Fusar-Poli P, McGorry PD, Kane JM. Improving outcomes of first-episode
2. Solmi M, Radua J, Olivola M et al. Age at onset of mental disorders world- psychosis: an overview. World Psychiatry 2017;16:251-65.
wide: large-scale meta-analysis of 192 epidemiological studies. Mol Psychia- 35. Fava GA, Kellner R. Staging: a neglected dimension in psychiatric classifica-
try 2021; doi: 10.1038/s41380-021-01161-7. tion. Acta Psychiatr Scand 1993;87:225-30.
3. Global Burden of Disease 2017 Disease and Injury Incidence and Prevalence 36. McGorry PD, Hickie IB, Yung AR et al. Clinical staging of psychiatric disor-
Collaborators. Global, regional, and national incidence, prevalence, and ders: a heuristic framework for choosing earlier, safer and more effective in-
years lived with disability for 354 diseases and injuries for 195 countries and terventions. Aust N Z J Psychiatry 2006;40:616-22.
territories, 1990-2017: a systematic analysis for the Global Burden of Disease 37. Maj M, van Os J, De Hert M et al. The clinical characterization of the patient
Study 2017. Lancet 2018;392:1789-858. with primary psychosis aimed at personalization of management. World
4. Weye N, Santomauro DF, Agerbo E et al. Register-based metrics of years lived Psychiatry 2021;20:4-33.
with disability associated with mental and substance use disorders: a regis- 38. Fusar-Poli P, Correll CU, Arango C et al. Preventive psychiatry: a blueprint for
ter-based cohort study in Denmark. Lancet Psychiatry 2021;8:310-9. improving the mental health of young people. World Psychiatry 2021;20:200-
5. Ruocchio PJ. First person account: the schizophrenic inside. Schizophr Bull 21.
1991;17:357-60. 39. Arango C, Fraguas D, Parellada M. Differential neurodevelopmental tra-
6. Jaspers K. Allgemeine Psychopathologie. Berlin: Springer, 1913. jectories in patients with early-onset bipolar and schizophrenia disorders.
7. Noiriel A, Verneuil L, Osmond I et al. The lived experience of first-episode Schizophr Bull 2014;40:S138-46.
psychosis: a systematic review and metasynthesis of qualitative studies. Psy- 40. Arango C, Dragioti E, Solmi M et al. Risk and protective factors for mental
chopathology 2020;53:223-38. disorders beyond genetics: an evidence-based atlas. World Psychiatry 2021;
8. Ning Audrey TX, Klainin-Yobas P, Creedy DK. A comprehensive system- 20:417-36.
atic review on the perception and experience of stigma among people with 41. Catalan A, Salazar de Pablo G, Vaquerizo Serrano J et al. Annual research
schizophrenia. JBI Libr Syst Rev 2011;9:1132-92. review: Prevention of psychosis in adolescents – systematic review and
9. McCarthy-Jones S, Marriott M, Knowles R et al. What is psychosis? A meta- meta-analysis of advances in detection, prognosis and intervention. J Child
synthesis of inductive qualitative studies exploring the experience of psycho- Psychol Psychiatry 2021;62:657-73.
sis. Psychosis 2013;5:1-16. 42. Catalan A, Salazar de Pablo G, Aymerich C et al. Neurocognitive functioning
10. Kaite CP, Karanikola M, Merkouris A et al. “An ongoing struggle with the self in individuals at clinical high risk for psychosis: a systematic review and me-
and illness”: a meta-synthesis of the studies of the lived experience of severe ta-analysis. JAMA Psychiatry 2021; doi: 10.1001/jamapsychiatry.2021.1290.
mental illness. Arch Psychiatr Nurs 2015;29:458-73. 43. Fusar-Poli P, Salazar de Pablo G, Correll CU et al. Prevention of psychosis:
11. Holt L, Tickle A. Exploring the experience of hearing voices from a first per- advances in detection, prognosis, and intervention. JAMA Psychiatry 2020;
son perspective: a meta-ethnographic synthesis. Psychol Psychother Theory 77:755-65.
Res Pract 2014;87:278-97. 44. Salazar de Pablo G, Radua J, Pereira J et al. Probability of transition to psy-
12. Llewellyn-Beardsley J, Rennick-Egglestone S, Callard F et al. Characteristics chosis in individuals at clinical high risk: an updated meta-analysis. JAMA
of mental health recovery narratives: systematic review and narrative syn- Psychiatry 2021;78:970-8.
thesis. PLoS One 2019;14:e0214678. 45. Salazar de Pablo G, Catalan A, Fusar-Poli P. Clinical validity of DSM-5 atten­
13. Hitch D, Pepin G, Stagnitti K. Engagement in activities and occupations by uated psychosis syndrome: advances in diagnosis, prognosis, and treatment.
people who have experienced psychosis: a metasynthesis of lived experi- JAMA Psychiatry 2020;77:311-20.
ence. Br J Occup Ther 2013;76:77-86. 46. Adam. Experiencing suspicious thoughts and paranoia: an account. Schizo-
14. Beers CW. A mind that found itself. London: Longmans, Green and Co., phr Bull 2011;37:656-8.
1908. 47. Palit S. Schizophrenia and vision of my life. Schizophr Bull 2016;42:867-9.
15. Boisen AT. Out of the depths. New York: Harper & Brothers, 1960. 48. Anonymous. First person account: a pit of confusion. Schizophr Bull 1990;
16. North CS. Welcome, silence. New York: Simon & Schuster, 1987. 16:355-9.
17. Sommer R, Clifford JS, Norcross JC. A bibliography of mental patients’ au- 49. Reina A. The spectrum of sanity and insanity. Schizophr Bull 2010;36:3-8.
tobiographies: an update and classification system. Am J Psychiatry 1998; 50. Nichols FE. Inside my head. Schizophr Bull 2020;46:462-3.
155:1261-4. 51. Chadwick PK. Peer-professional first person account: before psychosis –
18. Clifford JS, Norcross JC, Sommer R. Autobiographies of mental health clients: schizoid personality from the inside. Schizophr Bull 2014;40:483-6.
psychologists’ uses and recommendations. Prof Psychol Res Pract 1999;30: 52. Parnas J, Licht D, Bovet P. Cluster A personality disorders: a review. In: Maj
56-9. M, Akiskal HS, Mezzich JE et al (eds). Personality disorders. Chichester:
19. Saks ER. The center cannot hold. New York: Hyperion, 2007. Wiley, 2005:1-74.
20. Colori S. Experiencing and overcoming schizoaffective disorder: a memoir. 53. Bleuler E. Dementia praecox oder Gruppe der Schizophrenien. Leipzig: Deu­
Scotts Valley: CreateSpace Independent Publishing Platform, 2015. ticke, 1911.
21. Weijun Wang E. The collected schizophrenias. Minneapolis: Graywolf, 2019. 54. Kretschmer E. Korperbau und Charakter: Untersuchungen zum Konsti-
22. Sechehaye M. Autobiography of a schizophrenic girl. New York: Meridian, tutionsproblem und zur Lehre von den Temperamenten. Berlin: Springer,
1994. 1921.
23. Benjamin J, Pflüger B. The stranger on the bridge. London: Bluebird, 2018. 55. Leathem LD, Currin DL, Montoya AK et al. Socioemotional mechanisms of
24. Geekie J, Randal P, Lampshire D et al. Experiencing psychosis: personal and loneliness in subclinical psychosis. Schizophr Res 2021;238:145-51.
professional perspectives. London: Routledge, 2011. 56. Anonymous. Schizophrenia with childhood onset. Schizophr Bull 1994;20:
25. Williams S. Recovering from psychosis: empirical evidence and lived experi- 587-90.
ence. London: Routledge, 2016. 57. Herrig E. First person account: a personal experience. Schizophr Bull 1995;
26. Stanghellini G, Aragona M. An experiential approach to psychopathology: 21:339-42.
what is it like to suffer from mental disorders? Cham: Springer, 2016. 58. Spiro Wagner P. First person account: a voice from another closet. Schizophr
27. Gilardi L, Stanghellini G. I am schizophrenic, believe it or not! A dialogue Bull 1996;22:399-401.
about the importance of recognition. Philos Psychiatr Psychol 2021;28:1-10. 59. Carroll DW. Severely schizophrenic and successful? Yes, it’s possible! Schizo-
28. Gilardi L, Stanghellini G. The schizophrenic person as a moral agent. Philos phr Bull 2017;43:1151-2.
Psychiatr Psychol 2021;28:35-9. 60. Chadwick PK. Peer-professional first-person account: schizophrenia from
29. de Serpa OD, Leal EM, Muñoz NM. The centrality of narratives in the mental the inside – phenomenology and the integration of causes and meanings.
health clinic, care and research. Philos Psychiatr Psychol 2019;26:155-64. Schizophr Bull 2006;33:166-73.
30. Rowland L. First person accounts. academic.oup.com/schizophreniabulletin/ 61. Murphy MA. First person account: meaning of psychoses. Schizophr Bull
pages/first_person_accounts. 1997;23:541-3.
31. Cutting J. A critique of psychopathology. East Sussex: Forest Publishing 62. Akram U. Everything at once, or nothing at all. Schizophr Bull 2019;45:958-9.
Company, 2011. 63. Colori S. Organization’s effects with schizoaffective disorder. Schizophr Bull

World Psychiatry 21:2 - June 2022 185

 2019;45:722. schizophrenia in the context of the person and their circumstances: seven
64. Abraham S. Delusional. Schizophr Bull 2020;46:1339-40. reasons. Front Psychol 2016;7:1650.
65. Boevink WA. From being a disorder to dealing with life: an experiential ex- 100. Greek MT. How a series of hallucinations tells a symbolic story. Schizophr
ploration of the association between trauma and psychosis. Schizophr Bull Bull 2010;36:1063-5.
2006;32:17-9. 101. Murphy MA. Grand rounds. Schizophr Bull 2007;33:657-60.
66. Hanley D. The journey. Schizophr Bull 2016;42:1312-5. 102. Anonymous. Graduate student in peril: a first person account of schizophre-
67. Humpston CS. Perplexity and meaning: toward a phenomenological “core” nia. Schizophr Bull 2002;28:745-55.
of psychotic experiences. Schizophr Bull 2014;40:240-3. 103. Anonymous. Intrusive thoughts, impulses, and schizoaffective disorder. Schiz-
68. Blankenburg W. First steps toward a psychopathology of “common sense”. ophr Bull 2019;45:3-4.
Philos Psychiatr Psychol 2001;8:303-15. 104. Yeiser B. My triumph over psychosis: a journey from schizophrenia and
69. Stanghellini G. Vulnerability to schizophrenia and lack of common sense. ­ho­melessness to college graduate. Schizophr Bull 2017;43:943-5.
Schizophr Bull 2000;26:775-87. 105. DeMann JA. First person account: the evolution of a person with schizophre-
70. Boada L, Lahera G, Pina-Camacho L et al. Social cognition in autism and nia. Schizophr Bull 1994;20:579-82.
schizophrenia spectrum disorders: the same but different? J Autism Dev Dis- 106. Parnas J, Raballo A, Handest P et al. Self-experience in the early phases of
ord 2020;50:3046-59. schizophrenia: 5-year follow-up of the Copenhagen Prodromal Study. World
71. Maj M. Critique of the DSM-IV operational diagnostic criteria for schizo- Psychiatry 2011;10:200-4.
phrenia. Br J Psychiatry 1998;172:458-60. 107. Beattie L. Experiences of a first-episode psychosis by a psychology graduate
72. Cohen M. Emerging from schizophrenia. Schizophr Bull 2008;34:406-7. student. Schizophr Bull 2017;43:939-40.
73. Nelson B, Sass LA, Thompson A et al. Does disturbance of self underlie social 108. Dykstra T. First person account: how I cope. Schizophr Bull 1997;23:697-9.
cognition deficits in schizophrenia and other psychotic disorders? Early In- 109. Bovet P, Parnas J. Schizophrenic delusions: a phenomenological approach.
terv Psychiatry 2009;3:83-93. Schizophr Bull 1993;19:579-97.
74. Parnas J. The core gestalt of schizophrenia. World Psychiatry 2012;11:67-9. 110. Fleshner CL. First person account: insight from a schizophrenia patient with
75. Henriksen MG, Nordgaard J. Self disorders in schizophrenia. In: Stanghellini depression. Schizophr Bull 1995;21:703-7.
G, Aragona M (eds). An experiential approach to psychopathology. What is it 111. Jordan JC. First person account: schizophrenia – adrift in an anchorless real-
like to suffer from mental disorders?. Cham: Springer, 2016:265-80. ity. Schizophr Bull 1995;21:501-3.
76. Margetić BA, Karlović D. Schizotypy: from personality organization to transi- 112. Chovil I. First person account: I and I, dancing fool, challenge you the world
tion to schizophrenia. Psychiatr Danub 2021;33:529-34. to a duel. Schizophr Bull 2000;26:745-7.
77. Mishara AL. Klaus Conrad (1905-1961): delusional mood, psychosis, and be- 113. Anonymous. Language games, paranoia, and psychosis. Schizophr Bull 2011;
ginning schizophrenia. Schizophr Bull 2010;36:9-13. 37:1099-100.
78. Anonymous. First person account: portrait of a schizophrenic. Schizophr 114. Payne RL. First person account: my schizophrenia. Schizophr Bull 1992;18:725-
Bull 1992;18:333-6. 8.
79. Weiner S. The details in schizophrenia. Schizophr Bull 2018;44:707-9. 115. Parnas J, Bovet P, Zahavi D. Schizophrenic autism: clinical phenomenology
80. Stanghellini G, Ballerini M, Presenza S et al. Psychopathology of lived time: and pathogenetic implications. World Psychiatry 2002;1:131-6.
abnormal time experience in persons with schizophrenia. Schizophr Bull 116. Stanghellini G, Ballerini M. Dis-sociality: the phenomenological approach to
2016;42:45-55. social dysfunction in schizophrenia. World Psychiatry 2002;1:102-6.
81. Mishara AL, Fusar-Poli P. The phenomenology and neurobiology of delusion 117. Stanghellini G, Ballerini M. Criterion B (social dysfunction) in persons with
formation during psychosis onset: Jaspers, Truman symptoms, and aberrant schizophrenia: the puzzle. Curr Opin Psychiatry 2007;20:582-7.
salience. Schizophr Bull 2013;39:278-86. 118. Lee TY, Hong SB, Shin NY et al. Social cognitive functioning in prodromal
82. Anonymous. First person account: behind the mask: a functional schizo- psychosis: a meta-analysis. Schizophr Res 2015;164:28-34.
phrenic copes. Schizophr Bull 1990;16:547-9. 119. Galderisi S, Rucci P, Mucci A et al. The interplay among psychopathology,
83. Sips R. Psychosis as a dialectic of aha- and anti-aha-experiences. Schizophr personal resources, context-related factors and real-life functioning in schiz-
Bull 2019;45:952-5. ophrenia: stability in relationships after 4 years and differences in network
84. Xia J. Onset schizophrenia. Schizophr Bull 2020;46:749-50. structure between recovered and non-recovered patients. World Psychiatry
85. Fusar-Poli P, Howes O, Valmaggia L et al. ‘Truman’ signs and vulnerability to 2020;19:81-91.
psychosis. Br J Psychiatry 2008;193:168. 120. Kotov R, Jonas KG, Carpenter WT et al. Validity and utility of Hierarchical
86. Madeira L, Bonoldi I, Rocchetti M et al. Prevalence and implications of Tru- Taxonomy of Psychopathology (HiTOP): I. Psychosis superspectrum. World
man symptoms in subjects at ultra high risk for psychosis. Psychiatry Res Psychiatry 2020;19:151-72.
2016;238:270-6. 121. Anonymous. First person account: social, economic, and medical effects of
87. Klosterkötter J. Basissymptome und endphänomene der schizophrenie. Ber- schizophrenia. Schizophr Bull 1996;22:183-5.
lin: Springer, 1988. 122. Parnas J, Sass LA. Self, solipsism, and schizophrenic delusions. Philos Psy-
88. Chapman RK. First person account: eliminating delusions. Schizophr Bull chiatr Psychol 2001;8:101-20.
2002;28:545-53. 123. Díaz-Caneja CM, Pina-Camacho L, Rodríguez-Quiroga A et al. Predictors of
89. Weiner SK. First person account: living with the delusions and effects of schiz­ outcome in early-onset psychosis: a systematic review. NPJ Schizophr 2015;
ophrenia. Schizophr Bull 2003;29:877-9. 1:14005.
90. Winton-Brown TT, Fusar-Poli P, Ungless MA et al. Dopaminergic basis of sa- 124. Anonymous. Taking the first step. Schizophr Bull 2010;36:895-9.
lience dysregulation in psychosis. Trends Neurosci 2014;37:85-94. 125. Bruni C. Immediate intervention: life-long success. Schizophr Bull 2014;40:
91. Bowden WD. First person account: the onset of paranoia. Schizophr Bull 3-4.
1993;19:165-7. 126. Anonymous. The “healing healer”? A psychologist’s personal narrative of
92. Snyder K. Kurt Snyder’s personal experience with schizophrenia. Schizophr psychosis and early intervention. Schizophr Bull 2018;44:1173-4.
Bull 2006;32:209-11. 127. Royal B. Schizophrenia: nutrition and alternative treatment approaches. Schiz­
93. Stanghellini G, Ballerini M. Values in persons with schizophrenia. Schizophr ophr Bull 2016;42:1083-5.
Bull 2006;33:131-41. 128. Stanghellini G. Phenomenological psychopathology and care. In: Stanghell-
94. Scotti P. Recovery as discovery. Schizophr Bull 2009;35:844-6. ini G, Aragona M (eds). An experiential approach to psychopathology. What
95. Ruoss BS. From failing meds to the ones that worked. Schizophr Bull 2019; is it like to suffer from mental disorders?. Cham: Springer; 2016:1-43.
45:271. 129. Gregersen L. The onset of my schizophrenia. Schizophr Bull 2021; doi: 10.
96. Sass LA. Self and world in schizophrenia: three classic approaches. Philos 1093/schbul/sbab096.
Psychiatr Psychol 2001;8:251-70. 130. Meijer MM. In the Garden of Eden: the content of my psychoses. Schizophr
97. Sass LA, Parnas J. Schizophrenia, consciousness, and the self. Schizophr Bull Bull 2018;44:469-71.
2003;29:427-44. 131. Timlett A. Controlling bizarre delusions. Schizophr Bull 2013;39:244-6.
98. Parnas J, Henriksen MG. Subjectivity and schizophrenia: another look at 132. Hawkes E. Making meaning. Schizophr Bull 2012;38:1109-10.
incomprehensibility and treatment nonadherence. Psychopathology 2013; 133. Stewart J. Picking up the pieces. Schizophr Bull 2018;44:942-4.
46:320-9. 134. Ritunnano R, Bortolotti L. Do delusions have and give meaning? Phenom
99. Pérez-Álvarez M, García-Montes JM, Vallina-Fernández O et al. Rethinking Cogn Sci 2021; doi: 10.1007/s11097-021-09764-9.

186 World Psychiatry 21:2 - June 2022

135. Ritunnano R, Stanghellini G, Broome MR. Self-interpretation and meaning- 170. Gallo KM. First person accounts: self stigmatisation. Schizophr Bull 1994;20:
making processes: re-humanizing research on early psychosis. World Psy- 407-10.
chiatry 2021;20:304-6. 171. Bjorklund RW. First person account: psychosocial implications of stigma
136. Roberts G. Delusional belief systems and meaning in life: a preferred reality? caused by misdiagnosis. Schizophr Bull 1998;24:653-55.
Br J Psychiatry 1991;159:19-28. 172. Meijer MM. “Mum, you will get better”: coping with a vulnerability for psy-
137. Bergstein M, Weizman A, Solomon Z. Sense of coherence among delusional choses and mania. Schizophr Bull 2017;43:1148-50.
patients: prediction of remission and risk of relapse. Compr Psychiatry 2008; 173. Colori S. Working while rehabbing. Schizophr Bull 2018;44:231-3.
49:288-96. 174. Meijer MM. #PeaceAndLove: the second phase of my psychoses. Schizophr
138. Isham L, Griffith L, Boylan A et al. Understanding, treating, and renaming Bull 2017;43:1145-7.
grandiose delusions: a qualitative study. Psychol Psychother 2021;94:119-40. 175. Colori S. Fear, faith, hope, and courage. Schizophr Bull 2018;44:703-5.
139. Payne R. Night’s end. Schizophr Bull 2012;38:899-901. 176. Anonymous. Thought-action-fusion. Schizophr Bull 2018;44:1170-1.
140. Conrad K. Beginning schizophrenia: attempt for a gestalt-analysis of delu- 177. Weiner S. Getting well again. Schizophr Bull 2020;46:1034-5.
sion. In: Broome MR, Harland R, Owen GS et al (eds). The Maudsley reader 178. Li D. Navigating schizophrenia in college. Schizophr Bull 2021;47:5-6.
in phenomenological psychiatry. Cambridge: Cambridge University Press, 179. Sacks MH. Recovery from delusions: three phases documented by patient’s
2012:176-93. interpretation of research procedures. Arch Gen Psychiatry 1974;30:117-20.
141. Sass LA, Pienkos E, Skodlar B et al. EAWE: Examination of Anomalous World 180. Molta VE. First person account: living with mental illness. Schizophr Bull
Experience. Psychopathology 2017;50:10-54. 1997;23:349-51.
142. Stanghellini G, Fernandez AV, Ballerini M et al. Abnormal space experiences 181. Fox V. First person account: schizophrenia, medication, and outpatient com-
in persons with schizophrenia: an empirical qualitative study. Schizophr mitment. Schizophr Bull 2001;27:177-8.
Bull 2020;46:530-9. 182. Salsman SA. First person account: the best medicine. Schizophr Bull 2003;
143. Payne R. My outsider art. Schizophr Bull 2015;41:779-80. 29:615-6.
144. Ritunnano R, Humpston C, Broome MR. Finding order within the disorder: 183. Anonymous. Learning to live with schizoaffective disorder: a transformative
a case study exploring the meaningfulness of delusions. BJPsych Bull 2021; journey toward recovery. Schizophr Bull 2018;44:2-3.
doi: 10.1192/bjb.2020.151. 184. Watson M. Listening to the Wherewho: a lived experience of schizophrenia.
145. Gold J, Gold I. The “Truman Show” delusion: psychosis in the global village. Schizophr Bull 2015;41:6-8.
Cogn Neuropsychiatry 2012;17:455-72. 185. Johnson A. I should be included in the census. Schizophr Bull 2012;38:207-8.
146. Anonymous. First person account: the end of two roads. Schizophr Bull 1997; 186. Bayley R. First person account: schizophrenia. Schizophr Bull 1996;22:727-9.
23:163-4. 187. Colori S. Facing fears; if medication runs out. Schizophr Bull 2019;45:723-4.
147. Campbell T. Falling on the pavement. Schizophr Bull 2000;26:507-9. 188. Parker C. First person account: landing a Mars lander. Schizophr Bull 2001;
148. Gray B. Psychiatry and oppression: a personal account of compulsory ad- 27:717-8.
mission and medical treatment. Schizophr Bull 2009;35:661-3. 189. Michalska da Rocha B, Rhodes S, Vasilopoulou E et al. Loneliness in psycho-
149. Jepson JA. My stages of recovery. Schizophr Bull 2017;43:3-5. sis: a meta-analytical review. Schizophr Bull 2018;44:114-25.
150. Greenblat L. First person account: understanding health as a continuum. 190. Anonymous. Why having a mental illness is not like having diabetes. Schizo-
Schizophr Bull 2000;26:4. phr Bull 2007;33:846-7.
151. Tolton JC. How insight poetry helped me to overcome my illness. Schizophr 191. Stanghellini G, Ballerini M. What is it like to be a person with schizophrenia
Bull 2004;30:469-72. in the social world? A first-person perspective study on Schizophrenic Disso-
152. Stanghellini G, Cutting J. Auditory verbal hallucinations – breaking the si- ciality – part 2: methodological issues and empirical findings. Psychopathol-
lence of inner dialogue. Psychopathology 2003;36:120-8. ogy 2011;44:183-92.
153. Cermolacce M, Naudin J, Parnas J. The “minimal self” in psychopathology: 192. Vaingankar JA, Cetty L, Subramaniam M et al. Recovery in psychosis: per-
re-examining the self-disorders in the schizophrenia spectrum. Conscious spectives of clients with first episode psychosis. Ann Acad Med Singap 2020;
Cogn 2007;16:703-14. 49:186-98.
154. Allan S. Early intervention in first episode psychosis: a service user’s experi- 193. Windell D, Norman R, Malla AK. The personal meaning of recovery among
ence. Schizophr Bull 2017;43:234-5. individuals treated for a first episode of psychosis. Psychiatr Serv 2012;63:
155. Kean C. Battling with the life instinct: the paradox of the self and suicidal 548-53.
behavior in psychosis. Schizophr Bull 2011;37:4-7. 194. Jepson JA. A vets recovery. Schizophr Bull 2016;42:4.
156. Colori S. The meaning of my diagnosis. Schizophr Bull 2020;46:1032-3. 195. Lam MML, Pearson V, Ng RMK et al. What does recovery from psycho-
157. Kean C. Silencing the self: schizophrenia as a self-disturbance. Schizophr sis mean? Perceptions of young first-episode patients. Int J Soc Psychiatry
Bull 2009;35:1034-6. 2011;57:580-7.
158. Laing RD. The divided Self. London: Tavistock, 1959. 196. Connell M, Schweitzer R, King R. Recovery from first-episode psychosis and
159. Stanghellini G. Embodiment and schizophrenia. World Psychiatry 2009;8:56- recovering self: a qualitative study. Psychiatr Rehabil J 2015;38:359-64.
9. 197. MacPherson M. Psychological causes of schizophrenia. Schizophr Bull 2009;
160. Scharfetter C. Ego-psychopathology: the concept and its empirical evalua- 35:284-6.
tion. Psychol Med 1981;11:273-80. 198. Eisenstadt P, Monteiro VB, Diniz MJA et al. Experience of recovery from a
161. Scharfetter C. Schizophrenic ego disorders – argument for body-including first-episode psychosis. Early Interv Psychiatry 2012;6:476-80.
therapy. Swiss Arch Neurol Psychiatr 1999;150:11-5. 199. Jepson JA. Teach them to be self-aware. Schizophr Bull 2013;39:483-4.
162. Parnas J, Møller P, Kircher T et al. EASE: Examination of Anomalous Self- 200. Hoerl C. Jaspers on explaining and understanding in psychiatry. In: Stan­
Experience. Psychopathology 2005;38:236-58. ghellini G, Fuchs T (eds). One century of Karl Jaspers’ General Psychopathol-
163. Helman DS. Schizophrenia is normal: my journey through diagnosis, treat- ogy. Oxford: Oxford University Press, 2013:107-20.
ment, and recovery. Schizophr Bull 2016;42:1309-11. 201. Doerr-Zegers O. Karl Jaspers: el hombre y su trascendental contribución a la
164. Stanghellini G, Ballerini M, Blasi S et al. The bodily self: a qualitative study psiquiatría. Psicopatologia Fenomenológica Contemporânea 2020;9:1-23.
of abnormal bodily phenomena in persons with schizophrenia. Compr Psy- 202. Ellerby M. Schizophrenia, Maslow’s hierarchy, and compassion-focused
chiatry 2014;55:1703-11. therapy. Schizophr Bull 2016;42:531-3.
165. Fowler KB. Personal account: snapshots: the first symptoms of psychosis. 203. Rofe T. Metaphorical stories for education about mental health challenges
Schizophr Bull 2006;33:16-8. and stigma. Schizophr Bull 2009;35:473-5.
166. Akroyd MJ. You can’t spell schizophrenia without an ‘I’: how does the early 204. Vijn TW. The ideal psychiatry – a utopia? Schizophr Bull 2019;45:956-7.
intervention in psychosis approach relate to the concept of schizophrenia as 205. Fenton K, Larkin M, Boden ZVR et al. The experiential impact of hospitali-
an ipseity disturbance? Early Interv Psychiatry 2013;7:238-46. sation in early psychosis: service-user accounts of inpatient environments.
167. Humpston CS, Broome MR. Perplexity. In: Stanghellini G, Aragona M (eds). Health Place 2014;30:234-41.
An experiential approach to psychopathology. What is it like to suffer from 206. Ockwell C, Capital Members. Restraint: a necessary evil? In: Hardcastle M,
mental disorders?. Cham: Springer, 2016:245-64. Kennard D, Grandison S et al (eds). Experiences of mental health in-patient
168. Tian R. My road to recovery from schizophrenia. Schizophr Bull 2021;2: care: narratives from service users, carers and professionals. East Sussex:
sgab020. Routledge, 2007:48-55.
169. Colori S. Adversity; sometimes a gift. Schizophr Bull 2018;44:945-6. 207. Short N. Feeling misunderstood. In: Hardcastle M, Kennard D, Grandison

World Psychiatry 21:2 - June 2022 187

 S et al (eds). Experiences of mental health in-patient care: narratives from 2019;11:1-21.
service users, carers and professionals. East Sussex: Routledge, 2007:23-32. 231. Jepson JA. Relating to a schizophrenic. Schizophr Bull 2016;42:1081-2.
208. Stewart KD. Factors contributing to engagement during the initial stages of 232. Jepson JA. My relationship with my caregivers. Schizophr Bull 2018;44:1172.
treatment for psychosis. Qual Health Res 2013;23:336-47. 233. Corin EE, Lauzon G. Positive withdrawal and the quest for meaning: the re-
209. Blaska B. First person account: what it is like to be treated like a CMI. Schizo- construction of experience among schizophrenics. Psychiatry 1992;55:266-
phr Bull 1991;17:173-6. 78.
210. Anonymous. My experience with psychiatric services. Schizophr Bull 2017;43: 234. Corin EE. Facts and meaning in psychiatry. An anthropological approach to
478-80. the lifeworld of schizophrenics. Cult Med Psychiatry 1990;14:153-88.
211. Bockes Z. First person account: “freedom” means knowing you have a choice. 235. Anonymous. The importance of talk therapy. Schizophr Bull 2016;42:1307-8.
Schizophr Bull 1985;11:487-9. 236. Fox V. First person account: a glimpse of schizophrenia. Schizophr Bull 2002;
212. Kotlicka-Antczak M, Podgórski M, Oliver D et al. Worldwide implementation 28:363-5.
of clinical services for the prevention of psychosis: the IEPA early interven- 237. van der Pol A. Using cognitive behavioral therapy on the term schizophrenia.
tion in mental health survey. Early Interv Psychiatry 2020;14:741-50. Schizophr Bull 2017;43:6-7.
213. Salazar de Pablo G, Estradé A, Cutroni M et al. Establishing a clinical service 238. Ellerby M. Reducing voices by direct dialogue. Schizophr Bull 2018;44:4-6.
to prevent psychosis: what, how and when? Systematic review. Transl Psy- 239. Slade M, Sweeney A. Rethinking the concept of insight. World Psychiatry 2020;
chiatry 2021;11:43. 19:389-90.
214. O’Toole MS, Ohlsen RI, Taylor TM et al. Treating first episode psychosis – the 240. Boydell KM, Stasiulis E, Volpe T et al. A descriptive review of qualitative stud-
service users’ perspective: a focus group evaluation. J Psychiatr Ment Health ies in first episode psychosis. Early Interv Psychiatry 2010;4:7-24.
Nurs 2004;11:319-26. 241. Windell DL, Norman R, Lal S et al. Subjective experiences of illness recovery
215. van Schalkwyk GI, Davidson L, Srihari V. Too late and too little: narratives of in individuals treated for first-episode psychosis. Soc Psychiatry Psychiatr
treatment disconnect in early psychosis. Psychiatr Q 2015;86:521-32. Epidemiol 2015;50:1069-77.
216. Lester H, Khan N, Jones P et al. Service users’ views of moving on from early 242. Reina A. Faith within atheism. Schizophr Bull 2014;40:719-20.
intervention services for psychosis: a longitudinal qualitative study in pri- 243. Jepson JA. The sickness in writing. Schizophr Bull 2012;38:371-2.
mary care. Br J Gen Pract 2012;62:e183-90. 244. Jepson JA. Bad day. Schizophr Bull 2016;42:4.
217. Harris K, Collinson C, das Nair R. Service-users’ experiences of an early in- 245. Jepson JA. Surviving the voices. Schizophr Bull 2018;44:706.
tervention in psychosis service: an interpretative phenomenological analy- 246. Jepson JA. Coping with my delusions. Schizophr Bull 2021;47:888.
sis. Psychol Psychother 2012;85:456-69. 247. Seikkula J. Psychosis is not illness but a survival strategy in severe stress: a
218. Lester H, Marshall M, Jones P et al. Views of young people in early interven- proposal for an addition to a phenomenological point of view. Psychopa-
tion services for first-episode psychosis in England. Psychiatr Serv 2011; thology 2019;52:143-50.
62:882-7. 248. Messas G, Fulford BKWM. Three dialectics of disorder: refocusing phenom-
219. Laugharne R, Priebe S, McCabe R et al. Trust, choice and power in men- enology for 21st century psychiatry. Lancet Psychiatry 2021;8:855-7.
tal health care: experiences of patients with psychosis. Int J Soc Psychiatry 249. Sass LA. Three dangers: phenomenological reflections on the psychotherapy
2012;58:496-504. of psychosis. Psychopathology 2019;52:126-34.
220. Cowan T, Pope MA, MacDonald K et al. Engagement in specialized early in- 250. Skodlar B, Henriksen MG, Sass LA et al. Cognitive-behavioral therapy for
tervention services for psychosis as an interplay between personal agency schizophrenia: a critical evaluation of its theoretical framework from a clini-
and critical structures: a qualitative study. Int J Nurs Stud 2020;108:103583. cal-phenomenological perspective. Psychopathology 2013;46:249-65.
221. Brew B, Shannon C, Storey L et al. A qualitative phenomenological analysis 251. Møller P, Haug E, Raballo A et al. Examination of anomalous self-experience
of the subjective experience and understanding of the at risk mental state. in first-episode psychosis: interrater reliability. Psychopathology 2011;44:386-
Int J Qual Stud Health Well-being 2017;12:1342504. 90.
222. Byrne R. At risk of developing psychosis: a personal account. In: Geekie J, 252. Jepson JA. Benefits of staying on medication. Schizophr Bull 2021;47:4.
Randal P, Lampshire D et al (eds). Experiencing psychosis: personal and pro- 253. Mann SB. First person account: talking through medication issues: one fam-
fessional perspectives. New York: Routledge, 2012:99-107. ily’s experience. Schizophr Bull 1999;25:407-9.
223. de Oliveira RF, de Andrade LOM, Goya N. Acesso e integralidade: a com- 254. Turner BA. First person account: the children of madness. Schizophr Bull
preensão dos usuários de uma rede de saúde mental. Ciênc Saúde Coletiva 1993;19:649-50.
2012;17:3069-78. 255. Jepson JA. The hammer: something to ignore. Schizophr Bull 2018;44:468.
224. Meijer MM. “I do not know anything about your hospitalization”: the need 256. Kidd IJ, Medina J, Pohlhaus G. The Routledge handbook of epistemic injus-
for triage at psychiatric hospitals. Schizophr Bull 2019;45:500-1. tice. London: Routledge, 2017.
225. Jepson JA. Reflections. Schizophr Bull 2019;45:502. 257. Fusar-Poli P, Politi P. Eugen Bleuler and the birth of schizophrenia (1908).
226. Colori S. Journaling as therapy. Schizophr Bull 2018;44:226-8. Am J Psychiatry 2008;165:1407.
227. Coleman RL. Home sweet home. Schizophr Bull 2003;29:399-400. 258. Davidson L. Recovery from psychosis: what’s love got to do with it? Psychosis
228. Gray B. Recovery champions: a personal view on making recovery happen. 2011;3:105-14.
Schizophr Bull 2016;42:865. 259. Parnas J. The RDoC program: psychiatry without psyche? World Psychiatry
229. Jepson JA. Motivation for writing. Schizophr Bull 2019;45:1165-6. 2014;13:46-7.
230. Puchivailo MC, Costa C, Holanda AF. A naturalização da experiência na
atenção à saúde mental: uma questão epistemológica. Revista do Nufen DOI:10.1002/wps.20959

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