Lived Experiences of Psychosis: Understanding the Gap Between Perception and Reality

Introduction

Psychotic experiences and hallucinations have often been explained to be the result of the physical interaction of chemicals,¹ and all such episodes have often been reduced to the malfunction of physical connections in the brain²; such frameworks which explain mental ill-health have the potential of undermining the lived experiences of such events.³ Theories that explain the cause of psychosis are often linked to application of the medical model which places primacy on the physical interactions in the brain causing mental illness.¹ The medical model explanation often discounts other causative theories for mental illness such as psychosocial explanation,⁴ psychological theories,⁵ and spiritual causes.⁶ In addition, novel ways of investigating the physical symptoms of hallucinations and psychosis have been explored through simulated virtual immersive reality⁷ to try to understand the impact of such experiences.

To connect with the needs of people with mental ill-health, it is my contention that it is important to understand the lived experiences of psychosis to gain an insight into mental distress; thus, as a service user and social work academic,^8,9 I share a short reflection to illuminate understanding of this experience.

Reflection

In my mind there is a gap between perception and reality. Remembering back. I was desperately in love and desperately longing to be loved. I pretended that he undertook actions to make me jealous. He went off with somebody to make me jealous—to make me love him even more. I remembered making clever retorts to his replies, but these were words that were not said. As I experienced psychosis, and delusions, I became less and less of a person. I was shrinking within myself. I developed a sense of learned helplessness. The victim. But in truth, nobody noticed. I would cry myself to bed at night as my self-esteem shrunk. My identity shrunk.

I pretended to myself that I had had a clever conversation with this person. That I had had a clever witty exchange—when, really, I had remained silent. The simulation that I fed myself, presented me being attractive. But I must have remained silent, not saying anything. I’m sure that the gap between reality and the pretended simulations in my head did not match, but by the time I had pretended to myself what had been said, I had no understanding left of reality.

The emotions I experienced were very much like the abuse of controlling behavior that many domestic abuse survivors experience. Except I pretended that mind games were happening, when probably nobody even noticed me. I believed that I was being oppressed, teased, but probably this was the pretence of my mind. The excuses I fed myself about this man are the same excuses those who have experienced domestic abuse experience. They could not help themselves. They did not know how it affects you. This behavior is typical of any man. You squash your emotions, you accept behavior. But for me it was all played out elaborately in my head. An elaborate psychodrama—but I believe it was nothing. This is the difference between perception and reality. In my head, there was perception, but, in reality, there was nothing. I experienced the controlling behavior in my head, I experienced the shame of abuse in the gap between reality and perception. There was no connection between perception and reality.

As someone with a mental health need, it was difficult to differentiate between perception and reality: the world in my head was true even if it was not in actuality an accurate representation of the world. I experienced these encounters as real, and the impact of victimization as real, even if it was not. I thus experienced the nature of controlling and oppressive behavior in my mind, as a direct and perceived occurrence, even if it was not real.

Discussion

This reflection underlines the visceral and punishing nature of psychosis in its lived experience and how it can impact directly on the emotional wellbeing of a person experiencing mental distress. However, many clinicians, operating from the medical model of care, diagnose and identify the perceptions of people who experience hallucinations and paranoia^1,10 as eminently untrue and false representations of the world, based on illness criteria. However, a limitation of much research in this area (¹¹: S67) is the dominance of operationalized definitions and measurement tools to maximize reliability and simplify diagnostic criteria. Thus, lived experiences of psychosis are often reduced by clinicians to be understood as inaccurate representations of reality emanating from minds of people who are confused and damaged; sometimes their thought patterns are merely pathologized as faulty connections between the physical and chemical processes of the brain.¹

However, in postmodern research it is acknowledged that there are different realities, and nobody holds a true representation of what that reality is, because everyone’s perception of that world is different. Each person holds a different recollection of a memory that is shaped by his/her perspective and by his/her current experiences, thus, it is very hard to argue that there is a true representation of an event.¹² The dichotomy between a philosophy that claims there is no true representation of the world, and the belief in scientific explanations of reality, suggests that it may be difficult to dismiss the content of hallucinations and psychosis as merely inaccurate and false recollections of events manifested through the experiences of mental illness. While the emphasis on operationalization of diagnostic criteria may help to achieve reliable and interpretable data,¹¹ it risks a premature simplification of psychopathology; not realizing the complex content of these lived experiences.

However, is there ever an accurate representation of psychosis? The traditional Cartesian dualism has dominated the mind-body split in mental and physical health posited in Western thinking and the division between the physical and the mental has been rejected.¹³ There are many different and distinct explanatory models for the experiences of mental distress in different cultures¹³ and it is important to understand how people from diverse cultures and ethnic backgrounds respond to mental ill-health. Western medical models and clinical language¹¹ often fail to supply the words or concepts for people to relate subtle and fluctuating forms of experience, potentially restricting the psychiatric phenomena that are reported by patients or attended to by clinicians. This links also to the increasing impact of racism on the delivery of care,¹⁴ as service users from ethnic minorities often perceive mental illness as distinct forms of experience, often unrelated to physical disease. Moreover, people from minority cultures often experience increased coercive treatment and the negative labeling of mental health diagnoses, highlighting the potential nature of mental health services as institutionally racist.¹⁵

Conclusion

This discussion has led us to consider how we can relate to the perceived reality of these psychotic events. In my reflection it is acknowledged that unreal events were perceived as a true representation of actual encounters with reality. I have argued how the medical model reduces these symptoms to the malfunctioning of chemicals in the brain¹ and rejects the validity of these experiences.

User-led models of care prioritize the importance of user perspectives and user interpretations of their lives; for example, as expressed through such care models as the Hearing Voices Networks¹⁶ and the development of peer-support led services.¹⁷ These innovations emphasize the primacy of user-led knowledge and perspectives of care, underlining the need to access the lived experiences of service users through application of their own knowledge and relationship to their encounters with psychosis and hallucinations.

In this article, it is therefore argued that it is important to relate to and connect with the lived experience of mental distress, rejecting the primacy of the clinicians’ roles in defining the meaning and status of the lived experience of delusions and hallucinations, all combined under the umbrella of psychotic episodes.

Funding

The study was not funded.

Acknowledgment

The author has declared that there are no conflicts of interest in relation to the subject of this study.

References