A review of The Real Me: Control, Responsibility and the Self in Depression, by Tamara Kayali.
When an individual receives a diagnosis for depression, there is the potential for a shift in their sense of self. In particular, there is the possibility that “responsibility” for emotions and/or behavior may come under question; this thesis situates itself within this very juncture. By exploring ideas of responsibility, authenticity and control among women who have a diagnosis of depression – and therefore a potential biomedical explanation for their depression – Kayali uncovers two key relationships within these women’s stories, that both hinge around the notion of control: that women’s perceived “causes” of depression – in particular, whether depression was sparked by a “trigger” event – relate to their perceived ability to recover and withstand future episodes; that perceived feelings of self-control are “a precondition for authenticity,” whether a woman is taking antidepressant medication or not.
The thesis draws from multiple disciplines, but is situated primarily within the domain of medical sociology, using a sociological approach to explore individuals’ illness experience and how diagnosis affects their sense of self. Kayali was inspired by questions in bioethics around individuals’ responsibility for behaviour when they have a medical diagnosis that potentially affects their behaviour. Who is responsible for their thoughts, emotions and behaviour – the person, or the depression? Kayali draws from psychiatry, psychology, sociology and philosophy to build a picture of the different paradigmatic influences at play upon receipt of a diagnosis; but more than this, the thesis hones in on how individuals negotiate this complex terrain that is at once medical, biographical and philosophical. By focusing on the meaning of illness to participants, the thesis provides a rare insight into how individuals – who are influenced by various discourses relating to depression, but most particularly a biomedical explanation – negotiate the different terrains that such an illness experience enters. Kayali’s unerring focus upon the individuals’ perceptions uncovers the crucial role that perceived control plays in these individuals’ lives. Thus, it sheds light on how the intersection of these different disciplines is experienced.
Chapter 1 provides the foundations for the study, its paradigmatic approach to different concepts used, and in particular in relation to the “self” – as used by the participants – that is then located within its broader philosophical tradition; participants’ emphasis upon “freedom” (and its relation to self-control) aligns with Sartre’s concept of the self. Kayali goes on to address lay beliefs relating to depression (including treatment), and potential consequences of the current biomedical approach including from the perspective of a lay individual. The study is therefore established as sociological, albeit at the intersection of a number of disciplines pertaining to the mind. Chapter 2 details the study’s qualitative methodology, drawing from interpretative phenomenological analysis, and provides crucial insight into the primacy given to the participants’ own understanding of the causes of their depression. It is this focus upon whether they perceive a trigger (or not) that creates the possibility for understanding the link between perceived cause and perceived future control. Kayali’s analysis also includes a quantitative element that examines potential patterns between thematic findings (alongside social context and demographic factors), and this additional level of analysis impressively demonstrates the links between emergent themes, in addition to the depth of insight that is gained through a qualitative approach.
The next four chapters explore different aspects of individuals’ experiences. Chapter 3 discusses the different ways in which women viewed their depression, illuminating differing interpretations including whether they saw it as an illness, a part of themselves or both, or whether it held broader implications as a catalyst for change in their lives (as just a few examples). The chapter provides useful insight into how individuals negotiated the “illness”—“part of self” dichotomy in particular, and the extent to which a biomedical model is accepted or not. The latter part of the chapter illuminates the complexity that participants faced when attempting to assign responsibility for their actions, thoughts and feelings: is it “them” or their “illness”? Kayali demonstrates that individuals may be well aware of the “moral work” (p. 146) that an illness label can do, by reducing the blame attributable to themselves, and individuals may therefore shy away from wholly accepting a biomedical explanation even though it holds the potential to devolve them of personal responsibility; this is because the question of whether they had any level of agency is one that is not easily answered.
Chapter 4 uncovers a relationship between women’s perception of their depression (specifically, whether they think it was triggered or not) and their sense of control over future depression. Those who felt that their depression was triggered by an external, stressful event were more likely to hold a belief in future resilience against depression i.e. that depression would not be chronic but temporary. This was the same even if participants believed that their own response was a contributory factor in the development of depression, as it would be within their control to manage their response differently in the future. For those who felt that there was no trigger, there was a greater sense that their depression may be chronic. As Kayali points out, belief in future recovery can be beneficial to individuals, and there is therefore significant benefit in understanding how women perceive their depression. The relevance of this original contribution must not be underestimated.
Chapter 5 explores the effect of diagnosis on women’s sense of self as they integrate – or otherwise – the diagnosis of depression into their identity. Kayali argues that “how and to what extent a diagnosis could impact on the individual’s sense of self largely hinges on the degree of personal control and responsibility the individual believes the condition allows” (p. 188). The extent to which diagnosis affects a participant (and whether this effect is positive or negative) depends upon her own interpretation of its meaning within her broader life. Kayali unpacks the discussion around the benefits and drawbacks of a biomedical understanding of depression based upon the women’s narratives, and argues that a biomedical explanation is a “double-edged sword” (p. 180). It both reduces blame to the individual but also reduces their hope of future recovery, resonating with the central issue of control that has such a powerful effect upon the women in this study. A biomedical explanation increases the likelihood of belief that depression is chronic: “It does so by both diminishing the individual’s sense of control in depression and by putting forward a model of depression in which there are no exits” (p. 184).
Chapter 6 explores the concept of authenticity while taking antidepressant medication. Previous studies have uncovered a link “between an increased psychological reliance on medication and a reduced feeling of control” (p. 191), and Kayali further unpicks this by exploring the breadth of different viewpoints that women held towards their medication, and why. The chapter begins by exploring how women experience being “on” antidepressants, and how they view the costs and benefits of antidepressant use. It then hones in specifically on the concept of authenticity, and how women’s perception of authenticity, which is linked to perceived control, also relates to whether they view wellness as being solely attributable to medication or not. Women who view their medication as the sole reason for recovery – most notably espoused by those who view their depression through a strictly biomedical framework – feel less in control of their recovery and also less authentic while taking medication. Those who felt that they held some responsibility for their illness and that medication only played a part in their recovery – far from seeing their own responsibility in detrimental terms – actually felt more in control of their future wellness: “Across the board, the degree of importance a participant placed on medication in her recovery was inversely proportional to the degree of control she felt she had over depression” (p. 200). Kayali reasserts the centrality of control to these women, and suggests that some level of perceived self-determination is essential for a feeling of authenticity when taking antidepressants. The “simple narrative” (p. 201), that places medication at the heart of recovery drawing from a biomedical model, actually leaves women vulnerable to a perceived loss of control and therefore some degree of perceived loss of their “true self” (p. 201).
The final chapter of the thesis summarizes the findings and considers the limitations and benefits of the sample used (most notably all-female), and then considers the potential implications of the research. The study provides an interesting challenge to the perceived benefits of a biomedical explanation for depression, and considers its utility through the lens of these women’s experiences. Kayali also points out the benefits of talking therapies as opposed (or in addition) to medication, for the sense of control and agency that such a therapeutic process might enable.
The findings of the thesis are of significance to practitioners in the field of mental health in particular. In addition, it has relevance to academics whose work touches upon mental health, illness experience, lay knowledge, neuroethics and questions of identity, diagnosis and responsibility. This work provides important insight for the practice of mental health care, shining a light on the benefits of practitioners understanding patients’ perspectives; it holds the potential to impact on actual health outcomes. A review cannot do justice to the depth and breadth of participants’ experience that is addressed, nor to Kayali’s powerful presentation of its relevance, and I urge readers to take the opportunity to explore it.
School of Sociology and Social Policy
University of Nottingham
Interviews with women who have been diagnosed with depression
Literature pertaining to: illness experience, current approaches to depression (including recent historical developments and the former exogenous—endogenous distinction), the self, lay beliefs.
University of Cambridge. 2011. 314 pp. Primary Advisor: Martin Richards.
Image: Fluoxetine HCl 20mg Capsules (Prozac), photograph by Tom Varco. Wikimedia Commons.