Autobiographical accounts of the experience of psychiatric illness are ubiquitous (Reference Sommer and OsmondSommer & Osmond, 1983). Despite this, their systematic use in research has been neglected. The recognition of the value of patients' perspectives on mental illness is, in itself, empowering to patients, and vivid descriptions of subjective accounts encourage empathy and reflection in health care professionals. In addition, autobiographical accounts provide a rich source of material for phenomenological and cognitive neuropsychiatric research (Reference FreedmanFreedman, 1974).
The use of first-person accounts of mental illness has disadvantages. Most importantly, the writers of such accounts are likely to be atypical of the general patient population in terms of demographic characteristics, personal qualities and their degree of recovery and insight. Such characteristics may lead these individuals to interpret their experiences in a different way. Despite these problems with subjective accounts of mental disorder, Chadwick (Reference Chadwick1997), a clinical psychologist who has described his own psychotic illness, argues strongly for learning more from patients' personal accounts, and highlights the individuality of patients' attributions for their illness and their perceived paths to recovery.
Since 1979, the journal, Schizophrenia Bulletin, has published a series of ‘First Person Accounts’ written by patients with schizophrenia and their families. We systematically reviewed all these articles in order to explore aspects of the onset, recovery and experience of delusions in patients with schizophrenia. We chose to focus on delusions and used the DSM-IV (American Psychiatric Association, 1994) definition where possible, as these are a core feature of psychosis and yet remain poorly understood (Reference Mortimer, Bentham and McKayMortimer et al, 1996; Reference Jones and WatsonJones & Watson, 1997; Reference Kemp, Chua and McKennaKemp et al, 1997; Reference DavidDavid, 1999).
Characteristics of authors
The gender of the author was ascertainable in 28 out of 29 cases. Twenty were female and eight were male (χ2=5.14, d.f.=1, P=0.023). Information about the age of the author was available in only 10 out of 29 cases: mean age was 36.3 years (range 28-49).
Education of authors was classified into four categories; those who did not graduate from high school, high school graduates, college graduates and those with higher degrees. Information was available in 27 out of 29 cases. No subjects failed to graduate from high school; 13 (48%) were college graduates and eight (30%) had higher degrees. Four mentioned that they had started college but were unable to complete their course because of their illness.
Cognitive processes in delusions
The onset of delusional thinking was most often described as being gradual and insidious (Reference BockesBockes, 1985; Anonymous, 1992). Bowden (Reference Bowden1993) described an interest in psychic phenomena progressing to increasingly unusual preoccupations and then to bizarre beliefs “in which I believed wholeheartedly”. Delusions occurring secondary to abnormal perceptual experiences (particularly auditory hallucinations) were frequently described. One author wrote of hallucinations “they deceive, derange and force me into a world of crippling paranoia” (Reference BayleyBayley, 1996). In many cases, the delusional beliefs could be seen as fairly rational explanations for abnormal experiences:
“I increasingly heard voices (which l'd always call ‘loud thoughts’)… I concluded that other people were putting these loud thoughts into my head” (Reference BockesBockes, 1985).
“Bayley (Reference Bayley1996) writes that delusions are:
“reality to the individual, even if they appear to be unintelligible… there is often a link with an outwardly recognizable concept or event when time is given to try and interpret the thought processes involved”.
However, it is possible that these explanations are partly retrospective rationalisations.
Many authors gave clear descriptions of a prodromal state in which the development of delusional beliefs began. This delusional mood was described either as a sense of strangeness (“I felt distinctly different from my usual self”, Reference PaynePayne, 1992) or of profound anxiety (“I first began to be anxious and fearful”, Reference Fortner and SteelFortner & Steel, 1988; “I sensed danger everywhere”, Anonymous, 1983). The state was frequently described as being accompanied by a sense that “every single thing means something” or that “there is a connection to everything that happens” (Reference BrundageBrundage, 1983).
Although some delusions appeared to be understandable explanations of abnormal perceptions (see Reference Maher, Oltmanns and MaherMaher, 1988), a number of authors did not identify an antecedent. Nevertheless, there were few classical descriptions that arose in consciousness, fully formed. For instance, one author wrote:
“One of my duties [at work] was to read information intended for military personnel…I became convinced that I was reading top secret information and that somebody would try to have me killed so that I couldn't talk”.
Despite the fact that most delusions described had a gradual onset, there are very few descriptions which suggest that reality-testing or questioning of unusual beliefs occurs at an early stage. In contrast, many authors said that their beliefs always seemed perfectly reasonable to them (“I felt no surprise; it seemed natural to me”; Reference MurphyMurphy, 1997) and that nothing caused them to question their ideas (“the world ticked like clockwork around me, never once protesting my assumptions”; Anonymous, 1997). One author described an attempt to rationalise her growing suspicions:
“I am not alarmed. I attribute the signs to fatigue, and it makes sense to me that the FBI are following me since I am going to a high security [military] school” (Anonymous, 1990a ).
But she does not seem to have considered the possibility that her fears may have been unfounded. Thus, while evidence apparently confirming a developing delusion is accepted (“Everything: billboards, radio, television, people, random sounds fed into this delusion”; Anonymous, 1989) evidence which could disconfirm it is ignored.
Almost all authors who commented on the pace of their recovery from psychosis described it as gradual: “As the weeks passed… the world became saner. The voices stopped. Things started to seem ordinary” (Reference HerrigeHerrig, 1995); “My symptoms gradually subsided” (Reference PaynePayne, 1992). One account does describe an episode when delusional beliefs suddenly disappeared (“suddenly it dawned on me… everything seemed clear to me. It was as though a fog had lifted and I could think clearly again”; Anonymous, 1990b ) but also describes more gradual recovery on another occasion (“the delusions seemed to fade away gradually”).
There is support in these accounts for Sacks et al's (Reference Sacks, Carpenter and Strauss1974) suggestion that there is an intermediate stage of “double-awareness” in the recovery from delusions. Ruocchio (Reference Ruocchio1991) describes feeling that “a part of me wants to dispel the delusions whilst a part of me is frightened and resists”. She feels that this is a particularly difficult stage in the illness: “the hardest part of beginning to recover from schizophrenia is passing back and forth from one part to another… the uncertainty is so painful and terrifying”. Other authors describe this phase as an increasing willingness to question delusional beliefs and undertake reality-testing: “bit by bit my distrust faltered” (Reference LovejoyLovejoy, 1982); “constant reality testing may be necessary to keep [my] mind in balance” (Anonymous, 1990c ); “by thinking and writing in my journal [I concluded] that perhaps l'd noticed the strange incidents simply because I was already uneasy” (Reference BockesBockes, 1985). Some authors emphasise that a conscious effort may be needed to achieve or maintain recovery: “the key is to be able to detect these false beliefs and reinforce them as fiction” (Reference FleshnerFleshner, 1995). One account suggests that some patients may pass through a phase of fearfulness similar to that of delusional mood in the process of recovery: “at this stage of my illness, I was no longer imagining things, but I was afraid” (Reference O'NealO'Neal, 1984).
Sacks et al (Reference Sacks, Carpenter and Strauss1974) also argued that the continuum of delusional and non-delusional thinking is reflected in “residua of formerly flagrant delusions”. In some cases, delusional ideas were still present but were less bizarre (“presently, I believe that people can read my mind only if they are in my immediate vicinity. I do not believe, even if I am a psychic, that I am an agent of God”; Reference BowdenBowden, 1993), less firmly held (“I now know that this was either punishment at the hands of God's servants… or alternatively, but less likely, that I simply imagined these things”; Anonymous, 1996), or less prominent in the patient's thinking (“I have dispelled many delusions to the point where they are not primary in my thinking”; Reference RuocchioRuocchio, 1989). Other authors describe a continuing duality between rational and delusional thinking (Reference FleshnerFleshner, 1995) or occasional episodes of delusional beliefs (“I still have days when reality is distant”; Anonymous, 1992). Residua were described by about half of this sample (the remainder described full recovery) which are probably skewed towards good outcome. Interestingly, all patients whose delusional beliefs persisted, nevertheless recognised that they were suffering from a mental disorder.
Experience of illness
The most common factor that authors felt had contributed to their recovery was medication (mentioned by 23 patients), but few felt that they had been helped by medication alone. Fourteen highlighted psychotherapy, either in helping to deal with specific symptoms or as a means of personal support. Many (n=14) also identified social support (from family, friends, other patients or formal support groups) as a significant factor in their rehabilitation. Anonymous (1989) writes that “a secure, stable, friendly environment around me reduced the paranoia”. Psychosocial factors were perceived by most patients as very important in recovery, despite the fact that they almost always attributed their problems to a biological disorder.
Many patients (n=11) emphasised the role they had played in their own recovery. A number commented on developing personal coping strategies: “I have tried very hard to find ways to cope better with my disease” (Reference MoltaMolta, 1997); “I must look inside myself to find ways to handle it” (Reference McGrathMcGrath, 1984). Strategies discussed include structuring of time, developing a support network, writing journals and acceptance of illness. Some authors mention specific methods for combating delusional thinking: “I am able to fight the delusional thinking better by discussing it with people” (Anonymous, 1990c ). Other writers do not mention practical strategies, but nevertheless perceive their recovery as a personal struggle against illness: “I began to fight an all out war against my paranoid and other fearful and/or bizarre ideas” (Reference GalloGallo, 1994); “medication made it possible, if I fought very hard, to stay in reality” (Anonymous, 1992).
Although the experience of psychosis is often frightening and disturbing, some patients may perceive something positive to have come out of their illness. A number in this sample commented that they had gained a greater insight into themselves as a result: “my illness has caused me to grow in my inner self to discover who I really am” (Anonymous, 1990c ); “I reflect back on the pains of the past and consider them as a learning experience” (Reference O'NealO'Neal, 1984). Fleshner (Reference Fleshner1995) writes: “this illness enriches my imagination”. Other authors felt that they could find meaning in their illness by using their experiences to help other sufferers or increase awareness of mental health issues (Reference BrundageBrundage, 1983; Anonymous, 1990a ). Several patients felt that their illness had increased their spirituality (Anonymous, 1992; Reference MurphyMurphy, 1997), a factor frequently ignored by professionals (see Reference ChadwickChadwick, 1997).
The delusions described in these first-person accounts were most often gradual in onset. Many delusions occurred secondary to an abnormal perception (apparently rationally) or in the context of an odd or fearful mood, which was often accompanied by altered reasoning. Apparently primary delusions were also described, but were not necessarily sudden in onset. Reality-testing was not usually part of the process of the development of delusions. It seems that people usually feel no need to question their developing beliefs, and that evidence which might disconfirm them is ignored.
Recovery from delusions is almost always a gradual process, during which the individual passes through an intermediate stage of willingness to question delusions or duality of belief and disbelief. Reality-testing and other strategies to combat delusional thinking may play an important part in promoting and maintaining recovery (e.g. Reference Falloon and TalbotFalloon & Talbot, 1981). This could be actively enhanced by clinicians to promote recovery. It is likely that the emphasis placed by these authors on the importance of a personal role in recovery is a reflection of the well-educated and well-motivated nature of this group, and perhaps the views of journal editors. In many cases, some aspects of delusional thinking appear to persist despite insight into illness generally (see Reference JØRgensenJørgensen, 1995). This supports a multi-dimensional conceptualisation of insight (Reference DavidDavid, 1990; Reference Amador and DavidAmador & David, 1998).
Most authors of first-person accounts identified several factors as contributing to their path to recovery, including medication, psychotherapy and social support. Many perceived recovery as a personal struggle against illness and developed individual strategies for coping. Positive aspects of experiences were often identified, including enhanced insight and spirituality. There is evidence to suggest that psychotic illness often increases the strength of religious belief and that this may assist coping in these individuals (Reference Kirov, Kemp and DavidKirov et al, 1998).
The observational nature of this study and the atypicality of the patients represented make it hard to draw firm and generalisable conclusions. The reasons for the gender difference are unclear. It is possible that women are more introspective about their illness, that they more often wish to share their experience with others, or that they are more likely to see writing as a useful form of personal expression. Alternatively, professionals or families may perceive women differently and hence encourage them to write articles for publication. Nevertheless, autobiographical accounts such as these can make an important contribution to understanding the cognitive processes and personal views of patients with a psychotic illness.