The Lived Experience in Mental Health

Gary Morris

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781482245424
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

The importance of recognising the knowledge and the needs of service users and engaging them more proactively within the care process is now widely acknowledged, but it is not always clear how this can come about. The Lived Experience of Mental Health highlights individuals' own lived and felt mental health experience in order to share their expertise about mental health problems and the care offered.

This text begins by exploring the importance of engaging with the internal world of those living with various mental health problems and reflecting upon personal narratives as means of expressing and sharing experience, as well as the status of these narratives as 'evidence'. The central section of the book looks at five commonly experienced mental health states: anxiety problems, depression, mood extremes, states of altered reality (linked, for example, with psychosis and schizophrenia) and impaired cognition (linked, for example, with dementia). The chapters look at how the mental state in question is experienced, including the experience of it in the context of the wider world, where health and social care services and the responses of other people play a part. Drawing on personal narratives from a wide range of sources, this text foregrounds the voices of experts by experience and relates them to the academic literature. The narratives collectively convey a breadth of experience including both concepts of struggling and living well with mental health issues. The book ends by outlining resources where a range of first-person narratives can be accessed, from online forums to films, and providing a strategy for teaching and learning associated with the exploration of lived experience narratives.

Designed for health professionals working with people experiencing mental health problems, this illuminating text uses personal narratives to emphasise the importance of person-centred care and participation by services users in their own care. It will also be an interesting read for experts by experiences themselves as well as their families and friends.

PART 1

LIVED EXPERIENCE AND LEARNING

1 Embracing lived experience

2 ‘I became involved to try to make a difference’: Service user engagement

1

Embracing lived experience

INTRODUCTION

This chapter outlines the importance and need of engaging with the internal world of those living with various mental health problems. It reflects upon aspects such as personal narratives, life story work and autobiographical accounts as means of expressing and sharing personal experience. First, the sense of what lived experience signifies is reviewed along with the associated term of narrative. This is followed by an exploration of the scope of accessible first-person narratives within a variety of media source types. As will be covered, these are conveyed utilising a wide variety of communicative modes such as textual, visual or auditory means. They are very individual expressions and in a number of instances can initially appear confusing or hard to understand. These, however, can be rich in expressive symbolism or visual significance conveying important messages about a person’s internal experience, thoughts and feelings. As will be seen throughout this book, the importance of engaging with and connecting with lived experience narratives concerns the opportunity to get closer to and understand more about a person’s internal experience. This is vital for carers as effective care can only be delivered if one has understanding as to what a person is feeling or experiencing in relation to various mental health problems. It is also important to have greater awareness as to a person’s subjective experience of care interventions. This helps us understand why perhaps a person may not want to continue with their prescribed medication or what their concerns about attending for psychotherapy might be. We can also note what people are telling us that is helpful for them such as the vital feelings of acceptance and connectedness felt through engaging with others who are experiencing mental health problems. A further issue discussed within this chapter considers the validity of personal narratives as ‘evidence’ which is linked to the notion of service users being experts through experience.

WHAT IS LIVED EXPERIENCE?

The concept lived experience concerns a person’s awareness and comprehension of both internal and external stimuli. This concerns what is occurring inside one or within one’s surrounding environment. It involves the capacity to think, feel and perceive what is happening and what has happened. Wilhelm Dilthey (1985, p. 227) regarded lived experience as having a particular structural nexus and being part of a system of contextually related experiences. These he argued are related to each other like ‘motifs in the andante of a symphony’. Our perceptual processing of stimuli can be regarded through Gestalt theory which shows how experience is understood and made sense of (King and Wertheimer, 2007). In this way perceived elements are organised into a unified whole with closure or figure and ground evaluations being applied. The reading of experience is clearly unique and significant to each person, influenced by both emotive and cognitive processing factors. Past experiences (memories, thoughts and feelings) influence one’s subsequent comprehension of what is occurring in the present. What we know or what we feel about specific events or themes has an influence upon how we understand and process them in the present. With regards to mental health issues, there are a number of aspects which will influence a person’s subjective experience of what is occurring. Personal or family experience of mental health problems, peer influences, stigmatising attitudes held by others or media reporting will all impact upon one’s sense of what one’s experience means or signifies. Experiences are unique and personal and can differ significantly from the accounts of others. This applies to what might be regarded as shared experience with narratives around issues such as abuse, trauma or bereavement, or covering a wide spectrum of perspectives. This needs acknowledging when working with service users, and it cannot be assumed even if working extensively with individuals experiencing similar psychological distress that one ever understands the totality of that experience. We can also note here the changing nature of a person’s narrative as they progress along a struggling-coping continuum. A person with depression, for example, will notice key perceptual differences in how they perceive events as their mood state alters. Expressions of hopelessness and despair can be replaced with a sense of resilience and optimism significantly altering how events are perceived.

NARRATIVE

The term narrative is defined by the Oxford English Dictionary (2015) as

A spoken or written account of connected events; a story

This highlights a prominent function involving the chronicling and detailing of experience. Each person will have their own way of detailing what they have encountered. A point of significance concerns who it is that is recounting facts and what their ‘take’ or perception of events is, which can give rise to some wildly opposing descriptions. This can be seen in ways in which historical events have been recorded with political or cultural dimensions placing specific evaluations upon what is being expressed. The enduring quality of narrative is expressed by Barthes (1977, p. 79):

narrative is present in every age, in every place, in every society; it begins with the very history of mankind and there nowhere is, nor has been a people without a narrative … narrative is international, transhistorical, transcultural; it is simply there, like life itself.

This statement attests to the richness and importance of narrative. It is a fundamental need, something which enables us to signify our existence. This can be reflected against Descartes’ (Open University, 2015) Latin proposition cogito ergo sum (‘I am thinking, therefore I exist’), which signifies that the contemplation of one’s existence proves that an ‘I’ exists to do the thinking. We can reflect this against the situation where one’s thinking has become impaired through conditions such as psychosis or dementia. Experience is clearly still being lived although the person’s concept of what is occurring has become distorted. Whilst we might discount delusional or hallucinatory experience as not being based in reality, the fact that it is not our reality does not make it any less real (or distressing) to those experiencing it. A challenge facing healthcare professionals is in finding modes with which to communicate or attend to what is being expressed when content appears confusing or indecipherable. This is where we can consider the variety of communicative types through which narratives can be conveyed, including textual modes, art, music, dance and drama.

Narrative expression concerning what a person is experiencing internally is important in helping carers to better understand and appreciate service users. This provides opportunities to reframe what are rather clumsily referred to as ‘challenging behaviours’. Here, internal sensations of feelings act as ‘drivers’ for a person’s externally observed behaviour (O’Connor and Seymour, 1990). Tom Kitwood (1997), relating to dementia care, stressed that there is a reason for all behaviour. This has a strong emotive base with, for example, a person’s sense of feeling ‘lost’ and disconnected contributing towards their agitation and wandering. The issue here concerns a person’s ability to correctly comprehend their lived experience and convey it in a comprehensible way. Allied to this is the need for carers to assist individuals with their communication as well as persevering with our attempts to hear what is being conveyed. In some cases this involves developing more creative modes and means of communication as evidenced by John Zeisl’s (2009) use of art with people with dementia or the Alzheimer’s Society’s Singing for the Brain initiative (NHS Choices, 2014). There are narrative and communicative restrictions through many different mental health states with delusional content, memory deficits or dysphasia causing content to appear jumbled and confusing. A person who is depressed may lack the drive to communicate with internal narratives locked firmly inside. We can also consider a person with bipolar with thoughts and speech operating at a speed which others cannot keep up with. As with the examples mentioned earlier, assistance is needed for the person in terms of expressing their narrative as well as for carers to ‘hear’ what is being said.

In the case of mental health lived experience, other factors besides a person’s communicative deficits can restrict their narrative expression. This includes societal attitudes which can feel stigmatising and dismissive as well as a scarcity of opportunities or lack or resources for expression. Enabling the voice of those with mental health problems helps to break down barriers and influence acceptance, a crucial need with regard to the levels of discrimination which still prevail. Engaging with personal narratives allows us to begin challenging common stereotypes and misassumptions which proliferate concerning mental health issues, such as the mental health–violence associations or notions around unpredictability and incapability. There is much benefit from asking people how they feel or what they are experiencing as opposed to making assumptions based upon their external behaviour. Mary Shelley’s (1818) classic tale Frankenstein sums this dynamic up very succinctly as through attending to the creature’s narrative we become aware of a sensitive, intelligent being longing for love and affection. He feels cruelly rejected and abandoned by his creator and mocked and abused by those he encounters. Rather than meeting his felt need for compassion he is instead feared, mistrusted and driven away. In a similar vein the responses to people with mental health problems from sections of the media give the impression that what they might be feeling is of far less importance than the emotions of others who feel ‘threatened’ by their very presence. Poorly informed headlines such as The Sun’s ‘1200 Killed by Mental Patients’ (Parry and Moyes, 2013) literally scream the notion of dangerousness at us. The same newspaper’s headlines (Troup, 2003) a few years previously informed us: ‘Bonkers Bruno Locked Up’. This grossly insensitive headline totally disregarded the feelings or personal distress experienced to which Frank Bruno (2006, p. 208) later stated:

I just had no idea how vicious some of the papers could be. I didn’t think they’d care so little about the feelings of someone they’d once regarded as a hero … Now I was a national joke.

Reading Bruno’s autobiography, we are given his expressive and detailed account of the occasion when he had required hospital care for his deteriorating mental health state.

NARRATIVES AND COMMUNICATION MODES

There are a number of communicative channels utilised by service users in expressing their lived experience. Some modes are ideally suited for particular emotions or experiences or indeed are personally preferred by different individuals. As Van Manen (1990, p. 71) expresses:

A poet can sometimes give linguistic expression to some aspect of human experience that cannot be paraphrased without losing a sense of the vivid truthfulness that the lines of the poem are somehow able to communicate. An artist can with a few brushstrokes add depth of emotion to a landscape.

The vibrancy of this statement and the rich variety of communicative modes certainly alert us to the need to be vigilant to what people are communicating and to observe for nuances or levels of expressiveness that may be present even in the most unimagined circumstances. A wonderful example concerns a piece of embroidery filled with narrative text which was completed by a woman with schizophrenia who rarely spoke. The analysis of this item found that although she was silent, she was connected in many ways to the environment around her (Blakeman and Samuelson, 2013). This bears testament to the many unique ways in which narratives can be expressed which also includes modes such as textual (autobiographical reflection, poetry and fiction), visual (painting, drawing and sculpture), auditory (music and song) and performance (dance and theatre). This is evidently not a definitive list as other approaches will be used by individuals given their preference or maybe defined by the restrictions placed upon them by external circumstances or perhaps disability or infirmity. As seen with the embroidered narrative there can be rich forms of expression locked within a person simply requiring an outlet. This can be related to the example of Christy Brown (1954), severely disabled through cerebral palsy and only able to communicate through typing with his left ...