Comunicación auténtica y fluida basada en la confianza.

‘I was totally separated from myself, not knowing what action I was taking, let alone considering how to “communicate”… I was unaware of myself and my psychiatrist was unaware of me.’

Kean (2009 p.1034) ‘To try to understand madness without recognizing, acknowledging and incorporating the subjective aspects of the experience into our understandings is an impossible task, doomed to failure.’

Geekie and Read (2009 p.21)

Facilitating service users who are experiencing psychosis to articulate their subjective understanding has gained importance as it is considered significant in assisting recovery. Therefore, it is deemed essential for clinicians to really understand how service users have made meaning of their lives and the psychotic experiences, so as to help them find the lives they are searching for (Roe and Lysaker 2012). This is also important as traditionally they have felt stigmatised and ignored by mental health services, their own communities and the media (Cain et al. 2014; McDaid 2014): ignored in the sense that their personal stories were not really attended to by clinicians, family or by the print and digital media. Ruscio (2004) and Frank and Frank (1993) state that biomedical psychiatry does not really take account of the meaning attached to personal experiences and social contexts, except to confirm diagnosis and to measure the effectiveness of treatment. In addition, Chadwick (2007) maintains that this approach is likely to create distance between the healer and the sufferer. Hence, articulating self-experience accounts and the social context that it occurs in, is currently believed to aid recovery, and it also facilitates the creation of empathic understandings and connection to the person’s life story. Over the last couple of decades an increasing number of first-person accounts have being published in journals, books, and internet forums, which not only address people’s experience of psychosis and interactions with mental health service, but also its social consequences for them and their perspective on its causality.

Considering the importance now being placed on helping the service user to articulate his or her personal narrative, the author deemed that the following summaries of four powerful published accounts of the experience of psychosis from the perspective of service users and their families important to articulate. These also speak to the themes of culture, trauma, isolation, spirituality, family/significant others support, loss and hope.

Service User and Family Subjective Accounts

Egan Bidois (2012) recounts being given a diagnosis of psychosis, in the context of: prolonged stress; poor sleep; using marijuana; living away from his community; hearing multiple voices and seeing visions. These experiences, although initially frightening, were understandable from his Maori cultural perspective as “being bothered by unsavoury spiritual visitors” (p.36) and sensory overloading, which he was ill equipped to deal with. Within his family and culture, although worrying, it was not considered as unusual to have these experiences and to speak openly about them. As a consequence, he sought help and advice from local healers, who provided practical help to cope with and manage his difficulties. In addition, it was recommended that he speak to his deceased ancestors and traditional Gods for help regarding these spiritual issues. He acknowledges that his experience also fits the criteria for psychosis, where his visions would be named as visual hallucinations, and beliefs as delusions. Egan maintains that medication and the Western approach was unhelpful and harmful for him, and he withdrew from the mental health service he was attending. He credited his recovery on living in and being supported from within his own family and community. Hence, while his experience of attending a mental health service and taking anti- psychotic medication was negative, he was able to access and receive ongoing support from his Maori culture and family that provided a framework for his recovery.

Annie Rogers (2010) recalls feeling different from others during her childhood and felt that she “was living in a waking dream” most of the time (p.73), resulting in her isolating herself from peers. She also recounts hearing voices coming from book cabinets, radiators and trees and believed that if she could translate these voices (as they were celestial), it would save humanity from destroying itself. At sixteen years of age, Annie was hospitalised after a suicide attempt and received a diagnosis of schizophrenia six months later. She experienced numerous readmissions and was prescribed anti-psychotic medication, which she found unhelpful. However, despite her symptoms she managed (with difficulty) to complete school and college. She credits support from her sister and mother who intervened at times to prevent long term admissions to psychiatric hospitals. In particular, her sister helped her integrate with others and draw her back from a “point that seemed to have no return” (p.76), when Annie appeared lost in her psychosis. This support helped to fuel a determination to recover and after four years she felt well and free of all psychotic symptoms. Hence, from Annie’s account she was at risk of becoming lost to schizophrenia and remaining a long term patient of psychiatric institutions, but for the support and determination of her family through

these difficult times. This determination for Annie to recover encouraged her to keep trying to get better.

Peter Chadwick (2009) spoke about his experience of “getting into psychosis” (p.40). This occurred in the context of a childhood experience of an unpredictable, critical mother who presented the world as an unsupportive place where one can only rely on oneself, not feeling belonging to any one place, and separate from the culture within his community; a ‘not fitting in’. In addition, his difficulties were compounded by a sense of guilt and societal rejection of his sexuality. In time, this led to increasing feelings of being under threat and paranoia, where his thoughts and what he attended to recursively justified this perspective:

‘Snatches of conversation overheard on the street; things said made by newsreaders and DJ’s; headlines on newspapers; out of context comments made by people in the workplace – all these things jolted and jogged me towards a terminus both dreaded and yet longed for it’.

(p.48)

It was during this time that he attempted suicide on a number of occasions. However, over time he recovered and credits his improvement to a number of things. The first was becoming involved and feeling supported by others interested in nineteenth century writings, which produced a sense of belonging where he could display his true self. In addition, he sought professional help. This help consisted of: anti-psychotic medication, which he felt helped to remove barriers that were preventing him from being who he wanted to be; group therapy, which helped with becoming more at ease with himself; and attending a day hospital, which assisted in re-socialisation. Hence, Peter’s childhood experiences and sexuality resulted in a sense of isolation, feeling rejected and disconnected from family and society, which ultimately led to psychosis. His pathway to recovery involved finding people/groups he could connect with, and accessing services and treatment provided by mental health services.

Patrick and Henry Cockburn (2011) wrote as a father and son about Henry’s psychosis and its impact on their family. Patrick first learned that his twenty year old son Henry had mental health difficulties when he nearly drowned trying to swim a river estuary near his college in the depths of winter, after which he was detained in a psychiatric hospital. In hindsight, Henry’s mother Jan noticed an “accumulation of many small but bizarre things that he did and said” (p.8) in the weeks prior to his hospitalisation. These bizarre things included: walking around Brighton dishevelled and barefoot; climbing a very high wall which resulted in being arrested by the police; his student accommodation being extremely untidy;

dismantling his mobile phone; and behaving oddly when visiting him. During his time in hospital he received a provisional diagnosis of schizophrenia.

Henry viewed the events of that day when he attempted to swim the estuary somewhat differently. He had decided to walk to Tibet barefoot, so needed to harden his feet for the journey. The morning he left college and went for a walk barefooted along the seafront, where he felt that he was being directed where to go:

‘I felt brambles, trees and wild animals all urging me on. It was as if they were looking at me and I could feel what they thought’.

(p.31) During this journey he ascribed meaning from the environment in a particular way, for example, he saw a ‘D’ painted on the road and thought it stood for daemon so ran away. He then became convinced people were following him and went into the river where he was later rescued. At that time, Henry did not believe that he had mental health difficulties, but experiencing a spiritual awakening, and that visions were a part of this experience; “I saw a golden Buddha in the sky” (p.38). Hence, he was generally non-compliant with offered treatment and made numerous attempts to abscond from hospitals.

Over the intervening six years there were frequent hospitalisations, which both he and his family found very difficult. His parents lived in constant fear that he might die, as he often placed himself in risky and dangerous situations upon being released from hospital. Concurrently, Patrick became immersed in researching schizophrenia and all possible causes and treatments. He believed that the stress-vulnerability model fitted for Henry as some of his relatives had mental health difficulties and Henry had smoked a lot of cannabis as a teenager. Overall, Patrick and Jan felt frustrated and disappointed with the lack of apparent progress, as Henry appeared to become increasingly lost to psychosis. Their life seemed to consist of “coping with the seemingly endless crisis” (p.209).

Their first sense of any improvement occurred when Henry was admitted involuntarily to a particular hospital and the psychiatrist insisted that staff ensure that he took his anti-psychotic medication. This resulted in improvements to his mental health over a two year period, where he gradually started becoming more independent with the help of his family and mental health services. As part of his recovery his father suggested that they would write a book together about the impact of schizophrenia. Henry acknowledged these improvements:

‘It has been a very long road for me, but I think I’m entering the final straight. There is a tree I sit under in Lewisham which speaks to me and gives me hope’.

(p.222)

Hence, the experience of Henry and his family was one that nearly overwhelmed them. Henry was unhappy about hospitalisations and medication, while his family were at an increasing loss regarding how to help him and were fearful for his safety. Yet, his parents did not give up on hope and kept offering their support. In the end, ensuring medication compliance made some positive differences that allowed Henry to leave hospital and live in supported accommodation.

In summary, these first person accounts from service users and family members speak to a variety of experiences not only in relation to psychosis, but also the impact of interacting with mental health clinicians. Some found the biopsychological approach within mental health services useful, while others rejected the help offered, mainly due to beliefs that they do not have mental health difficulties, or to avoid unwanted effects of medication. However, all benefitted from the support and advocacy of caring determined family/significant others. The purpose of articulating the above accounts is to highlight the lived experience and struggles of those who experience psychosis and their families.