This paper explores narrative literature as a means of inquiry into the sense of self in depression. Described as a disease, an identity and a way of life, depression is influenced by both internal and external factors. Although brain research has provided new insight into the relationship between neurotransmitter function and depression, the symptoms are experienced by individuals whose lives are intertwined with historical and sociocultural interpretations of illness and its manifestations. At the intersection of science and the humanities, narratives aid in the interpretation of lived experiences, provide a window to that experience, and a public medium that engages writers and readers as they interpret the world. Engaging narratives to interpret both experience and medical jargon may reveal for both those experiencing depression and those engaged in their care, a way of mediating that experience. Narratives can help dissect and thus illuminate the official language of medicine and psychiatry and the personal language of depression. Such a window can enhance the opportunities for empathy and care.
- Literature and medicine
- narrative medicine
- patient narrative
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Sense of self and depression
Described for two millennia and known by various names, clinical definitions of depression have not always represented individual experience. A contemporary definition of depression, taken from the DSM-IV-TR, includes the presence for at least two consecutive weeks of either depressed mood or loss of interest or pleasure in previously pleasurable things, in addition to at least four of the following: significant change in appetite and/or weight, sleep disturbance, psychomotor disturbance, fatigue, feelings of guilt or worthlessness, difficulty concentrating and recurrent thoughts of death; the presence of these symptoms must result in a change in previous functioning.1 In 1621 Burton noted, “The Tower of Babel never yielded such confusion of tongues as this chaos of melancholy doth variety of symptoms.”2 In 1917 Freud wrote, “Even in descriptive psychiatry the definition of melancholia is uncertain; it takes on various clinical forms (some of them suggesting somatic rather than psychogenic affections) that do not seem definitely to warrant reduction to a unity.”3 More than 50 years later, Beck concurred, “[a]lthough depression (or melancholia) has been recognised as a clinical syndrome for over 2000 years, as yet no completely satisfactory explanation of its puzzling and paradoxical features has been found”.4 Similarly, in a memoir of his own depression William Styron remarked,
The disease of depression remains a great mystery … The intense and sometimes comically strident factionalism that exists in present-day psychiatry—the schism between the believers in psychotherapy and the adherents of pharmacology—resembles the medical quarrels of the eighteenth century (to bleed or not to bleed) and almost defines in itself the inexplicable nature of depression and the difficulty of its treatment. (Styron, p11)5
Culminating a long history of attempted definitions, Radden commented, “About clinical depression we seem to have more questions than definitive or enlightening answers.”6 Thus, in order to understand the experience of depression one must look beyond the changing definitions to the experience and expression of symptoms. Narrative can provide a window into the understanding of an experience that has been historically difficult define.
Each person perceives and mediates experiences through a distinct sense of self, and some experiences may change the sense of self. Individuals experiencing depression have described a loss of self, a second self or a disintegrated self. Clifford Beers described a self unlike what he had known. “… in telling the story of my life, I must relate the history of another self—a self which was dominant from my twenty-fourth to my twenty-sixth year. During that period I was unlike what I had been, or what I have been since.” (Beers, p5).7 William Styron remarked, “[M]y own sense of self had all but disappeared” (Styron, p56).5 Later, as he wrote of contemplating suicide Styron commented that, “[a] phenomenon that a number of people have noted while in deep depression is the sense of being accompanied by a second self—a wraithlike observer who, not sharing the dementia of his double, is able to watch with dispassionate curiosity as his companion struggles against the oncoming disaster, or decides to embrace it.” (Styron, p64).5 Thus a sense of two selves, one well and the other ill, may obscure a sense of an integrated self. Styron's observation that the individual's concept of self is enmeshed with the human response to illness, particularly when one experiences a psychological disorder, coincides with others' reflections. John Head mused, “[P]erhaps I was on a path to understanding who I had been and who I was becoming” (Head, p79).8 This concept of self alludes to a changing sense of self as both time and illness act as mediators to perceptions of lived experience. Just as reflections on the past influence present perceptions, illness can provoke a sense of self of which one has not been previously aware. Struggling with a changing sense of self, a common concern becomes identifying the real self.
Narrative stories aid understanding of an otherwise perplexing world and so help to make meaning of experience. Beers noted the impact of narratives on the question of slavery and asked, “why cannot a book be written which will free the helpless slaves of all creeds and colours confined today in the asylums and sanitariums throughout the world?” (Head, p176).8 Anatole Broyard observed, “[m]y initial experience of illness was like a series of disconnected shocks, and my first instinct was to try to bring it under control by turning it into a narrative” (Broyard, p19).9 Because an essential part of what it is to be human is to know oneself, narratives can provide a way to reaffirm one's sense of self through an exploration of the experiences and relationships one encounters. Ochs and Capp explain, “[t]he inseparability of narrative and self is grounded in the phenomenological assumption that entities are given meaning through being experienced” (Ochs, p21).10 Narratives can be particularly helpful to seekers and providers of mental health care in understanding how illness experiences shape the sense of self. This has important implications for models of care, especially because narratives assist those diagnosed with mental illness to maintain or reclaim previously established notions of self, relationships and roles.
Impact of social structures
The relationship between social structures and sense of self is an important one. Frank points to both the personal experience of illness and the social nature of illness stories.11 Kleinman suggests that “the experience of illness has something fundamental to teach each of us about the human condition” (Kleinman, pxiii).12 In contrast to disease, which Kleinman notes is the “recasting of illness in terms of theories of disorder”, and is the concern of the practitioner, illness represents the perspective of the symptomatic individual (Kleinman, p18).12 Shifting ideas about whether the body and mind are intricately entangled or represent two distinct entities of the self confound the experience, expression and ultimately the treatment of depression. For example, notions about the immutability of the mind and thus the self are reflected in efforts to confine and control individuals labelled as mad, in the asylums of 17th and 18th century Europe.13–15
Foucault placed mental illness within historical, political, social and cultural settings when he asked, “[i]s there not in mental illness a whole nucleus of significations that belongs to the domain in which it appeared—and, to begin with, the simple fact that it is in that domain that it is circumscribed as illness?” (Foucault, p56).13 Thus, the environment within which one lives serves to frame the perception of illness and so separates the well from the ill. Consequently, the development of a sense of self as well as its expression are interpreted and understood (or misunderstood) within the constraints of history, society and culture.
Though it is unclear how the onset of depression is instigated, it is clear that both biology and context are involved. Changing scientific paradigms concerning the cause and course of depression as well as changing attitudes and beliefs both about depression and those experiencing depression, contribute to this lack of clarity. Interestingly, the experiences of depression bear a remarkable resemblance to each other when compared across decades. While it is evident that, as Jamison notes, each person experiences illness ‘idiosyncratically’, it is also evident that a distorted sense of self is common among those experiencing depression in all eras, even while the theories and treatment change.16
Of interest is the extent to which sense of self is influenced by biological (inherited and adapted) and environmental (historical and sociocultural) processes. Vrettros noted that during the 19th century, conceptions of illness were shaped by Victorian cultural narratives.17 Whether medical histories or literary texts, the narratives provided form and substance to the private and public worlds of Victorian life and these in turn shaped accepted notions of self and social relationships. According to Grob, early psychiatric practice “reflected the role assigned to it by society”.18 Thus, care of the mentally ill reflected the sociocultural values of 18th century American society as opposed to the rigours of medical science.
This idea is important to the construction of self. Butler's concept of emergence suggests there is no control over one's beginnings therefore any concept of self is related to external forces such as historical and sociocultural influences.19 Beers' upbringing clearly defined his sense of self and influenced his responses to his hospital attendants. Despite their treatment of him as simply another ‘mental incompetent’ his education both at home and at school prepared him as a gentleman.7 His cultural narrative, then, influenced his response to both his illness and his care. In describing her conception of self before and after her diagnosis Jamison commented,
I was used to my mind being my best friend … I missed my home, my mind, my life of books and ‘friendly things,’ my world where most things were in their place … Now I had no choice but to live in the broken world that my mind had forced upon me. (Jamison, p37, 97)16
Jamison drew a very clear line between her past and present lives. She implicated not only the significance of her role as researcher and educator in creating a sense of self, but how that conflicted with her experience of illness.
In the last 2 decades, brain research has gained much notoriety, most notably through new techniques in neuroimaging. However, while the images provide an extraordinary look at the brain in action, they cannot tell the story of a life. Depression is not a distinct illness with a specific treatment; it is a conglomeration of signs and symptoms that affects its host in idiosyncratic ways, shaping both biology and disposition. Solomon averred,
Although depression is described by the popular press and the pharmaceutical industry as though it were a single-effect illness such as diabetes, it is not … Depression is not the consequence of a reduced level of anything we can now measure. Raising levels of serotonin in the brain triggers a process that eventually helps many depressed people feel better, but that is not because they have abnormally low levels of serotonin. (Soloman, p22)20
Furthermore, understanding the chemical mechanisms involved in altered mood does not necessarily translate into improved function. In describing her manic-depressive illness, Jamison asserted that, “[a]n understanding at an abstract level does not necessarily translate into an understanding at a day-to-day level. I have become fundamentally skeptical that anyone who does not have this disease can truly understand it.” (Jamison, p176).16 Thus while brain images can show where and when drugs affect neurotransmitters and this can lead to the development of medication that lifts the symptoms of depression, these are only part of the remedy. In the end the body that consumes the drugs contains more than a brain and chemical messengers; it contains the soul and personal life of a human being.
Jamison noted her reluctance to acknowledge her illness and that uncontrollable symptoms of her illness may be perceived by others as anger, irrationality and willfulness. “Moods are such an essential part of the substance of life, of one's notion of oneself, that even psychotic extremes in mood and behaviour can be seen as temporary, even understandable, reactions to what life has dealt.” (Jamison, p91).16 However, as an authority on manic-depressive illness, Jamison understands its biology as well as its implications for the lives of patients because she is one.
I believe, without a doubt, that manic-depressive illness is a medical illness; I also believe that, with rare exception, it is malpractice to treat it without medication. All of these beliefs aside, however, I still somehow thought that I ought to be able to carry on without drugs, that I ought to be able to do things my own way. (Jamison, p102)16
Doing things one's own way preserves the sense of self that is often threatened in mental illness. Because of some of its most outward signs, for example, sleep disturbance, difficulty concentrating, and a loss of pleasure in previously pleasurable things, it is difficult to maintain one's own way. Solomon observed, “[t]he insistence on normality, the belief in an inner logic in the face of unmistakable abnormality is endemic to depression” (Solomon, p72).20 Claims to normalcy are based on the preservation of whom one was before depression. Any sense of change in self jeopardises not only claims to normalcy but claims to one's self. Attention to narrative can provide insight into the experience and expression of depression, particularly the relationship between sense of self and social structures. Additionally, clues to sociocultural differences, as expressed through language, metaphor and story, may help to tailor interventions to a diverse group of individuals, leading to a better appreciation of mental health disparities and a means to begin to bridge the treatment gap.
Humanities and narrative medicine
Though narrative is an integral part of the medical consultation, of concern is the loss of the patient's voice as symptoms are transformed to diagnosis. During the modern period, the focus of medicine moved from the patient's experience to the technical expertise of clinicians.12 The natural sciences' inability to explain illness as experienced within a sociocultural context has been documented by others and underscores the assertion that narratives redirect attention usually focused on disease to include the patient and the lived experience.21 22 What emerges is a better understanding of what life is like outside the medical encounter. This is key to determining appropriate modes of care.
Placing narrative and medical technology in conversation with each other can enrich understanding of illness and wellbeing. Kirklin noted, “[f]amiliar with the culture and vocabulary of medicine, [medical educators] may be only partially aware of how both the culture and language of medicine, as opposed to the language and culture of the person who is ill, are dominant in the medical encounter” suggesting that the dominance of the medical culture and language in the doctor-patient interface must be acknowledged and bridged.23 Thus, the treatment community's history and culture represents an additional influence on the perception of both self and illness.
Noting the difference in both language and approach, it is important to reiterate the significance of the central question of the humanities, that is, what is it to be human, and to articulate the relationship between the extrinsic value of medical science and the intrinsic value of the nature of the human response to that science. Edgar and Pattison suggest that the humanities are important to medicine because the humanities compel us to scrutinise those scientific structures upon which medicine is based to the extent that they reflect beliefs about what humans are or aspire to be.24 “Within the humanities, this question—the question of how human beings understand, experience, and practice (sic) their own humanity—is typically addressed indirectly, by looking at the products of human existence, including language, beliefs, writings, paintings, and social institutions and organisations”.24 Although science raises questions about accommodating scientific inquiry, discovery and the ethical use of its knowledge, it does not provide answers to those questions; it is here that the humanities can provide guidance.24 Medical science derives from the validation of objective realities independent of what humans think or believe. The importance of the humanities derives from its response to those objective realities, attempting to understand them and scrutinising them in the context of what it means to be human. Scientific medicine, though it validates objective realities, is a product of human activity. Thus, in order to address both the objective realities of science and the subjective realities of humans and their societies, a multifaceted approach is necessary.
This inquiry reveals one inevitable barrier, and that is language. As Virginia Woolf put it, “[t]o hinder the description of illness in literature, there is the poverty of the language. English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache”.25 Despite eloquent expressions of self and depression, those on the outside can only catch a glimpse of what the experience is like. Wittgenstein noted, “the limits of my language mean the limits of my world”.26 This is not to contradict the ideas presented here but to acknowledge that listening to those who experience it first-hand is imperative to understanding illness. It is also to acknowledge the inherent complexity of making meaning of experience through words.
Assuming that language is an artefact of each cultural paradigm, that is, that language emerges to describe and convey sociocultural constructs and experiences, a lack of language to describe some experiences says something about the understanding and acceptability of that experience. Remembering that even personal experiences have multiple writers—for example, in addition to the individual, there are the keepers of the sociocultural history and traditions—it follows that these become the signposts for behaviour and markers of sociocultural norms. Thus, the individual, though attempting to express a very personal experience, is bound by the prevailing cultural language. This illustrates the difficulty of conveying to another the unique experience of self in depression.
Historical and sociocultural influences both shape the understanding of illness and inspire its research. The experiences of asylum patients instigated investigations of mental hospitals which eventually led to deinstitutionalisation. The experiences of soldiers and psychiatrists in WWII shaped mental health policy and practices in the 1950s and 1960s, and the experiences of neurologists in laboratories shaped the present era of neuropsychiatry. Throughout these eras the patient's narrative has slowly but surely been replaced by the medical narrative. The patient's voice has been in many cases usurped by the medical voice, leaving more room for the management of disease than for understanding the experience of illness. Patient narratives can place the patient's voice alongside and in conversation with the medical voice. This placement permits a consideration of human subjectivity along with the scientific objectivity that guides medical practice. There are obstacles however, when patients struggle with the language of illness.
Rose suggested that two concerns in attempting to tell a story of illness are the “fall into medical discourse and the escape to a view of illness as metaphor … [m]edicine and I have dismissed each other … [w]e do not have enough command of each other's language for the exchange to be fruitful”.27 Though patients often try to adopt medical terminology in an attempt to place themselves equally with their physicians, its use may unintentionally reinforce the authority of the medical establishment because even while the patient uses it, the medical language is divorced from experience.27 The result is often that patients surrender to the power of the medical narrative.
The second concern, viewing illness as metaphor, has been addressed by Sontag. Sontag suggested that not only is illness not a metaphor but to treat it as such is a distortion of the reality of illness.28 She asserted that metaphor permits the illness to represent the sufferer's, as opposed to the illness', character. “Sadness made one ‘interesting’,” noted Sontag (p31).28 There may be times when individuals experiencing depression, looking for the words to describe their emotions, must use metaphor. The depth of sadness in depression is difficult to describe without using some other image to shape it and make it real. However, Sontag emphasised that a disease should simply be regarded as a disease, though it is doubtful that Sontag would have asked narrative authors to cease the search for language to describe their experiences. Thus, the use of metaphor offers opportunities for understanding unlikely in technical language.
Because health is often something of an afterthought until it declines, there is frequently more to learn from the response to illness than from the response to good health. Morris asserts that “[i]llness always seems to tell us more about a person or an era than health does”, and suggests a biocultural approach to 21st century illness (Morris, p52).29 Narratives then, including firsthand experiential accounts, official accounts such as medical records and diagnostic criteria, and especially those culturally common accounts, such as popular literature, that express the attitudes and beliefs of a particular society, can be particularly helpful in a biocultural approach to illness. According to Morris,
Narrative will never replace lasers … medicine attuned to the influence of mind, emotion, and culture can help greatly in addressing illnesses that … involve … issues of personal behavio[u]r and of public health … In respecting rather than dismissing a patient's narrative, it can offer a means of healing where cure may be impossible … (Morris, p276–7)29
Though discoveries in medicine only point out what was there even before it was known, the ability of medicine to transform that discovery into something that assists human health or alleviates human suffering presents both gifts and challenges. However, neither scientific discoveries nor the human response to them occur in a vacuum. Each must be considered within their historical and sociocultural contexts. Applied to this inquiry, the humanities probe the official language and practice of medicine and their historical and sociocultural contexts.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.