Depression: the ambivalence of diagnosis
Address for correspondence: Renata Kokanovic, Faculty of Arts, School of Political and Social Inquiry, Monash University, Melbourne, Victoria 3800, Australia
The diagnosis of depression in the clinical context is extremely controversial and is subject to criticism of over-medicalisation and pharmaceuticalisation. Depression can be conceptualised across the entire spectrum of lay and medical belief, from the ‘normal’ highs and lows of the human condition to its inclusion in the dominant Diagnostic and Statistical Manual of Mental Disorders classificatory system, as a form of serious mental illness. In this context, a better understanding of how people describe, experience, negotiate and participate in the process of diagnosis is needed. This article draws on qualitative interviews to explore lay accounts of being diagnosed with depression. The findings reveal that lay accounts of depression vacillate in and out of the medicalised discourse of depression, highlighting the limitations of the biomedical approach to diagnosis and treatment.
Diagnosis is both a category and a process. As a category it is the actual label ‘agreed upon by the medical profession to designate a specific condition it considers pathological’ (Blaxter 1978, quoted in Jutel 2009: 280). As a process, it is the way in which this label is applied (Blaxter 1978: 278). In relation to mental disorders, control over diagnostic labels is closely linked to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) (McPherson and Armstrong 2006: 51). The DSM system, which began in 1952 and was revised in 1968, 1980 and 1994, outlines the criteria for diagnosing mental disorders. The DSM is being revised at the time of writing and the next version, DSM-V, is due for publication in May 2013 (American Psychiatric Association 2009).
The publication of the third edition of the DSM in 1980 marked a major shift in the logical underpinning of psychiatric diagnosis. Prior to DSM III, psychiatrists approached the diagnosis of depression as a complex problem requiring comprehensive and detailed explanation, ‘for no one word conveyed from one psychiatrist to another the nature, context, and severity of the suffering’ (Blazer 2005: 5). The shift towards categorical, symptom-based diagnosis meant that the study of the social origins of psychiatric illness ‘has all but disappeared as a paradigm for investigating the origins of depression and, instead, has been replaced by biological explanations’ (Blazer 2005: 5).
The diagnostic approach adopted in the DSM III and the subsequent version, has been questioned by various groups. In psychiatry itself, there is a sense that the profession’s push for improved diagnostic reliability and consistency via the manual system has come at the expense of diagnostic validity (Spitzer 2007). Furthermore, treatment decisions do not necessarily follow directly from pinpointing a particular diagnostic category as specific treatments for most DSM categories are yet to emerge, raising further questions about the DSM’s medical validity (see Whooley 2010). Many of the ‘new’ conditions in each subsequent DSM edition were previously seen as either ‘deviant’ (such as personality disorders and addictions), or at the extreme end of ‘normal’ behaviour. Controversies abound with many of the burgeoning disorders of late modernity, which enter and leave diagnostic nosologies in line with shifting sociocultural values in a continual process of medicalisation, demedicalisation and remedicalisation.
These, and many other newly classified illnesses feature a broad range of reactions to stress, loss and grief, in which the ‘clinical’ status of dysthymia (as in the display of emotion inappropriate to circumstances), is an important but value-laden component. Sociologists have investigated the social processes underpinning the production of DSM diagnostic categories by revealing their inherently cultural and political nature. Such research typically focuses on specific problematic categories, including attention deficit disorder (Lakoff 2000), multiple personality disorder (Hacking 1995), personality disorder (Manning 2000), female hypoactive sexual desire disorder (Jutel 2010) and depression (Horwitz and Wakefield 2007). With regard to depression, Horowitz and Wakefield identify several social processes that contribute to depression’s status as a major social trend, including the widespread perception that depression is increasing rapidly in the community, the increase in the number of people being treated for depression, the current rise in prescriptions for antidepressants, and the explosion of scientific publications and media attention on the problem of depression (2007: 4–5). Furthermore, the recent rebiologisation debates in neuroscience have shifted the emphasis from the mind to the brain, likening depression to conditions such as diabetes, as in an organic or biochemical deficiency of serotonin which can be easily fixed by the much heralded benefits of serotonin reuptake inhibitors and other quick fix wonder drugs, despite a lack of convincing scientific evidence (Kirsch 2010). Thus the DSM is cited as a key instrument in the disease-mongering practices of pharmaceutical companies (Healy 2004). Social constructionist critiques of depression highlight how diagnoses can ‘have major professional, economic, political and social consequences’, as industries, professions and advocacy groups capitalise on the features of a diagnosis ‘only after its promulgation’ (Horwitz 2011: 41).
The term contested conditions is also used to signify illnesses of controversial scientific status such as chronic fatigue syndrome, chronic low back pain, anxiety and sleep disorders, in which highly distressing symptoms are experienced, but where there is usually an absence of physical signs, clinical explanation or medical diagnosis. Medically unexplained symptoms (MUS), an acronym in popular usage in the medical and social science literature, is perhaps less stigmatising than its forerunners of somatisation or psychosomatic symptoms, but still identifies illnesses or syndromes which cannot be defined in terms of organic pathology and thus occupy a lower rung in the illness hierarchy (Nettleton et al. 2008). Such patients are often described despairingly as ‘heartsink’ patients, or sometimes more pejoratively as ‘frequent fliers’. It is estimated that between 25 and 50% of primary care physician consultations in the UK are prompted by emotional or psychological issues with MUS, which manifest through difficult to define bodily complaints. Holistic approaches, ‘talking cures’ or social interventions may be more appropriate than highly medicalised ones in the form of powerful and addictive pharmaceuticals. Inevitably, such conditions are often subsumed under the expansive and expanding label of depression.
The current version of the DSM identifies seven categories and subcategories relating to depression (Horwitz and Wakefield 2007). However, a study by McPherson and Armstrong identifies 19 different labels for depression currently in professional use (2006: 54). This suggests that clinicians do not uniformly apply DSM categories when diagnosing depression. Another study demonstrates how DSM labels are used in practice and suggests that in order to carve out a space for their own professional autonomy, psychiatrists often employ ‘workarounds’ that undermine DSM diagnostic categories in practice (Whooley 2010). Doubts about how DSM diagnostic categories for depression are applied in practice are raised by the fact that depression is most commonly diagnosed in primary care settings, without referral to psychiatric services (Pilgrim 2007: 542).
Within the context of primary care, there is much debate about the appropriate procedures for diagnosing depression. Some research suggests that physicians tend to underdiagnose depression (Davidson and Meltzer-Brody 1999, Feldman et al. 1998, Harman et al. 2001, Hirschfield et al. 1997). As a result, education initiatives and primary care guidelines for diagnosing depression have been developed. Diagnostic guidelines for depression are generally based on a medical model of care and often present antidepressants as the treatment of choice (McPherson and Armstrong 2009: 1137). Such guidelines have been criticised for ignoring the particular issues surrounding the conceptual basis of depression as it presents in general practice, for failing to acknowledge the evidence questioning the efficacy of antidepressants, for overlooking patient reluctance to take pharmaceutical treatments and for not taking account of the various social issues associated with depression (Jacob 2006). Furthermore, there is evidence to suggest that physicians do not necessarily use formal diagnostic criteria or screening instruments in their daily work, contributing to questions regarding the utility of diagnostic guidelines and criteria in the context of primary care (McPherson and Armstrong 2009).
Many recent studies have explored physicians’ accounts of diagnosing depression in primary care settings (Chew-Graham et al. 2002, Hyde et al. 2005, McPherson and Armstrong 2009, May et al. 2004, Rogers et al. 2001). A common theme in these studies is that the push for primary care guidelines for depression does not capture the complexity of the diagnostic process. Physicians’ accounts of diagnosing depression reveal that they experience a tension between the biomedical discourse of depression in which they are trained and which accords them clinical authority, and the recognition that the social context of patients’ lives contributes to their experience of emotional distress (Thomas-MacLean and Stoppard 2004), with many prescribing antidepressants reluctantly (Hyde et al. 2005). Some physicians report feeling powerless when dealing with patients they have diagnosed as depressed because they see the causes of patients’ distress as social, and therefore beyond the medical domain (Kokanovic et al. 2010). In such cases, medical discourse does not provide physicians with effective explanatory accounts or treatment cures (McPherson and Armstrong 2009). Despite some evidence of ambivalence amongst primary care physicians about whether depression is a legitimate medical diagnosis, a substantial number of people consult their primary care physicians about their experience of emotional distress (Pollack 2009, Rogers et al. 2001). This presents physicians with a predicament about how to best respond to such patients, while also raising questions over why individuals consult medical professionals about their emotional distress in the first place and how they experience the process of being medically diagnosed with depression.
Investigations of lay accounts of mental health suggest there is a widespread belief that emotional distress is not necessarily a medical problem (Pill et al. 2001, Kokanovic et al. 2008). Lay people often challenge the idea that depression is an illness, preferring to see it as a part of ‘everyday life and its vicissitudes’ (Pilgrim 2007: 542). Furthermore, studies of lay accounts of mental health suggest a widespread expectation that it is generally possible and desirable for individuals to mobilise personal and social resources in order to deal with life’s difficulties, rather than seek medical help (Riessman 2008, Pollack 2009). Studies of lay accounts of mental health also suggest that individuals typically navigate between social and biomedical explanatory frameworks in making sense of their experiences of emotional distress (Karp 1996). Recently, studies of lay accounts of emotional distress have revealed that individuals report seeking medical help for emotional distress as a matter of urgency (May et al. 2004, Rogers et al. 2001) and that individuals may already have diagnosed their emotional distress as depression before consulting their primary care physicians (McPherson and Armstrong 2009).
It has been suggested that the progressive medicalisation of sadness and distress in recent decades may have contributed to increasing numbers of individuals consulting their doctors about emotional problems (Jacob 2006). Furthermore, the diffusion of health and medical information on the internet means that information that was previously only available to those with medical qualifications has now ‘e-scaped’ to the point that individuals are able to read about symptoms and take self-directed diagnostic tests via the internet (Nettleton and Burrows 2003). The role of e-scaped health information is especially significant with regard to the diagnosis of depression, since depression has been the subject of widespread online mental health literacy campaigns in countries such as Australia and the UK (Fullagar 2008, see Aware 2012, Beyondblue 2012).
Contemporary individuals may attend medical appointments having already read about their symptoms, possible diagnoses and treatments. Using this information, patients may, ‘propose a diagnosis, rather than an ailment, when they consult’ a doctor (Jutel 2009: 294). However, others have suggested that many patients seeking medical help for emotional distress do not anticipate a diagnosis of depression (Pollack 2009), with patients’ resistance to antidepressants having been well documented (Chilvers et al. 2001, Churchill et al. 2000, Grime and Pollock 2003). Blazer comments that although relieving the burden of depressive symptoms is a central challenge for healthcare providers, ‘the boundaries of major depression are far more fuzzy than those of more established medical diagnoses’ (2005: 9). This diagnostic fuzziness, Blazer suggests, means that medical practitioners group sufferers under the catchall diagnostic label, major depression, which problematically masks the social forces that contribute to the person’s symptoms and limits the search for treatment and prevention to strategies that are targeted at the individual (Blazer 2005, Horwitz and Wakefield 2007).
In the context of medical uncertainty and increased contestation over diagnosis, a more textured understanding is needed as to why people experiencing emotional distress seek help from the medical establishment, chiefly primary care physicians; what they are expecting from the medical encounter related to their emotional distress; how they experience and negotiate the diagnostic and labelling process; and how receiving a medical diagnosis of depression impacts on their everyday lives. This article provides some insights into these issues based on an analysis of interviews conducted with people who were diagnosed as depressed, or for whom a diagnosis of depression was inferred after receiving a prescription for antidepressants.
The material presented in this article is drawn from two interview studies, conducted in Australia between 2008 and 2011. Participants were recruited through general practitioners and support organisations, and through snowballing. Narrative interviews were conducted with an interview guide used in the second part of the interview to ensure that topics relevant to the study had been discussed (Reissman 2008). Themes discussed with participants included their experiences of depression and its impact on their lives and their negotiation of diagnosis and treatment. Most participants were interviewed at home and a few at their workplace or the workplace of the interviewer. Interviews lasted from 1 to 4 hours. Most were audio-recorded and some were video-recorded. All were transcribed verbatim. The two interview studies analysed for this article were approved by the University of Melbourne and Monash University Human Ethics Committees.
In total, 33 women and 24 men were interviewed. Close to half of the participants had received tertiary education, and the remainder had secondary school education, while three were still studying. Most participants were employed, with 29 in full-time employment and most of the others in part-time employment. Several were on a disability pension, retired, unemployed or looking for work. Thirty-three participants stated they were married or in a de facto relationship, four were widowed, and the remaining participants were divorced or single. In this article we draw on data with participants describing themselves as Anglo-Australians.
Some study participants were self-diagnosed, but most were medically diagnosed with depression. Diagnoses included mild, moderate or severe depression, with a few participants being diagnosed with post-natal depression. Most consulted multiple health and allied health professionals including primary care physicians, psychologists, psychiatrists and counsellors. Some tried various alternative therapies such as yoga and meditation, but these were mostly undertaken in addition to medical treatment. Many participants talked about themselves as being chronically depressed, with some describing themselves as being depressed since their childhood years, growing up in unhappy families, with ‘sorrowful’ or ‘depressed’ parents. Some also spoke of siblings who had become depressed as adults. Most participants experienced other health problems, including anxiety, cirrhosis of the liver, leukaemia, cancer and severe migraines. The oldest participant was 85 years of age and the youngest 18. Most were between 40 and 60 years of age. All participants are identified by pseudonyms in this article.
This article presents an analysis of interview data, focusing on participants’ experiences of receiving a diagnosis of depression. The data were analysed using an inductive thematic approach. The authors developed a coding framework that was piloted by RK, revised collectively and implemented by one author (RK) to ensure consistency. All authors read and discussed emerging themes in the narrative context via Skype conferences and e-mail exchanges. Patterns in the narratives were further explored drawing on relevant published literature. To illustrate our participants’ experiences of being diagnosed with depression, our article presents a detailed account of a selected number of narratives. To contextualise quotes, when interviewees are first mentioned, we indicate their marital status, employment status and age.
Searching for help
Most participants talked about a range of ambiguously defined emotions that made it difficult for them to pursue everyday activities. They described not being their ‘usual self’ (Sarah, married, employed, 40), or feeling that ‘something wasn’t right’ (Una, married, retired, 62). Often, they were uncertain about whether what they were experiencing was simply a problem in everyday life, or a problem requiring medical attention. Even when the participants eventually made a decision to consult a primary care physician about their distress, they reported having difficulties in describing it. For instance, when Una tried to articulate exactly what she said to her primary care physician when she first approached him about her distress she described a casual discussion that ended up in tears:
I don’t know that I said sort of anything other than ... we were chatting, and I started to talk to him and tears ... and it just went from there. (Una)
Seeking help from a primary care physician often followed unexpected life events that undermined people’s sense of life purpose and certainty about the future. Such life events included divorce, loss of job, sudden illness or the death of a loved one. For example, Anna (divorced, employed, 47) first approached a primary care physician for her distress following a series of major life events within a very short period of time, which included the birth of her first baby, the breakdown of her marriage when the baby was 10 months old, her father’s illness and death and her mother’s sudden death 12 months later. Anna said, ‘All these things just kept building up’, and at some point, she just started ‘sleeping all the time’. In the course of the interview, Anna also revealed that she was sexually abused during her teens, but does not elaborate on this. The accumulative impact of these traumatic life events left Anna feeling as though she had a ‘little grey monster’ sitting on her shoulder constantly saying, ‘You’re such a bad person’.
Philip (divorced, remarried, employed, 50) first went to see a primary care physician because he was only:
just managing to exist ... not having the normal bounce, the joy to live ... just not being satisfied with yourself ... not having the bounce that you are entitled to.
Philip described losing his sense of self and purpose after his wife left him for another man, leaving their two children in his care. Soon after his wife left, he unexpectedly lost his high powered, well-paying job, forcing him and his children to move to another city in search of work, which involved leaving their social support networks behind. When he eventually found new employment it was at a significantly reduced level of pay. Consequently, Phillip experienced a loss of professional status. He felt he was ‘treated very poorly by fellow workers and also by management’ in being forced to take on a ‘lower job’. He says at this stage in his life, this was ‘not where I wanted to put myself. This was not how I imagined it would be’.
This description corresponds with Petersen’s (2011: 5) claim that high rates of depression ‘may be understood in relation to the normative demand for self-realisation with which contemporary western individuals are confronted’. He comments that for the contemporary individual, ‘self-realisation has ... become a demanding performance which must be continuously staged ... [If] someone is not developing, they are disintegrating’ (2011: 11). Other studies of personal accounts of chronic illness suggest that loss of control and certainty about one’s life and the loss of an anticipated future all cause suffering and pain, and threaten the individual’s sense of self (Charmaz 1999: 366). Interestingly, despite describing his distress in terms of a sudden loss of agency in conducting his own life, Philip utilised highly medicalised language to describe his emotional distress, a point that will be discussed in the following section.
Other participants in this study emphasised how everyday social problems contribute to what is often labelled depression. As our data reveal, this leads to dissonance in participants’ attempts to negotiate a medical diagnosis of depression with their primary care physicians, since participants often desired a diagnosis of depression but perceived their distressed feelings or symptoms as originating outside the medical domain.
Negotiating diagnosis and treatment
In some accounts, the participants positioned themselves as being more knowledgeable about depression than their doctors. They clearly expected their primary care physician to acknowledge their expert patient position and actively involve them in the diagnostic process. Philip located himself as the expert on what he saw as a serious illness and described his quest to have his depression legitimised by health professionals. In 2003 Philip went to a primary care physician in relation to his depression for the first time and:
tried to explain to her what was happening, and feeling that she didn’t understand, that she had no idea, and feeling as though she was saying, ‘pull yourself together’, ‘grow up’ and ‘act like a man’.
Philip acknowledged the primary care physician’s competence in treating physical illnesses but described her as unable to deal with mental health problems. As a consequence, he went to a male primary care physician as he felt that male doctors ‘understand men’s issues a little better’. Philip outlined why this relationship was satisfactory:
So I went to my doctor – made a double appointment – and said, ‘I need to talk to you about my mental health, and I need to talk with you now’ ... I had come to that point where I knew it was fairly serious and this particular GP [primary care physician], who has a really good grip on mental health issues, thought, ‘Yes, it is serious’ and, ‘Yes, you have made a good move’ and, ‘The expert on you is you, so you tell me what you want or what you think you need, and let’s try and work out a mutual compromise’, which was good.
This time Philip was pleased with his primary care physician, since he acknowledged Philip’s expert status in relation to his depression. Philip described his relationship with his primary care physician, which developed to the point that the latter was ‘allowing’ him to adjust the intake of antidepressants according to how he was feeling.
This approach led to a sense of therapeutic alliance, where Philip appreciated being able to work on his depression as part of a team. This is evident in the language Philip used when he talked about what ‘they’ [Philip and his primary care physician] were doing for his depression: ‘I have been back to him again fairly recently ... and we are actually using a psychologist who is actually quite good’. Even though Philip expressed admiration for his current primary care physician, stating that he is ‘great and he’s brilliant’, he commented that he was:
surprised that he doesn’t advocate physical fitness and exercise and getting the endorphins flowing ... I am surprised that he doesn’t talk about, um, other things that you do to try and relieve stress.
In general, Philip seemed to be in agreement with his current primary care physician as he was providing Philip with the type of support and diagnosis that he desired, as well as legitimising Philip’s self-medicating practice. Later on in the interview, Philip spoke about his outrage when he was hospitalised for a physical complaint and a specialist doctor asked him to stop taking his antidepressant medications for a while. Philip refused the request, telling the interviewer that he was shocked at the specialist’s request and took it as a sign that some doctors do not understand depression. He said, ‘Depression is real. Depression is incredibly real. Yeah, it’s very real and it’s a pity that some doctors don’t understand that a little better’.
For some participants, receiving a diagnosis and being on antidepressant medication appeared to be a means for validating that what they experienced was a genuine medical problem. However, participants in this study did not necessarily hold a wholly medicalised view of their distress, but rather moved inside and outside a medicalised discourse. As discussed in the previous section, Philip located his depression within the broader context of his social and personal life, attributing his distress to adverse life events rather than medical causes.
Indeed, for some participants, the emphasis on antidepressants as the main treatment for depression raised concerns about the meaning that medication use had for their sense of self, as well as fears about addiction. Una reported that antidepressants have been very helpful in managing her distress and if she does not take them she ‘gets very teary’. However, she described feeling as though her problems did not warrant medication and that she should be able to do without taking antidepressants. She said, ‘I sort of watch TV programmes about people who have depression and that sort of thing and I think “In comparison to them I have got nothing” ’ (Una). In grappling with her ambivalent feelings towards taking antidepressants, Una described negotiating the level of dosage and that her primary care physician ‘said that it was alright and that I could medicate myself’.
Another participant expressed fears that she had ‘a bit of an addictive personality’ and commented that:
because I saw my mother take pills for so long, I think I’ve been scared that I could get really hooked on these highs and you know just keep going and take them [the antidepressants] more and more. (Anna)
The same participant described her self-medicating behaviour, stating that she had occasionally used antidepressants in a recreational way, in order to enjoy social events more fully, and that this had made her reluctant to keep using them for fear of becoming dependent.
Participants viewed antidepressant medications as the main form of treatment that primary care physicians could provide. Some welcomed the emphasis on medication, seeing it as a validation that what they were experiencing was a genuine medical problem. Others were ambivalent, or reluctant to use medication, because they perceived their problems as non-medical or feared becoming dependent on drugs. Although participants expressed a desire for their primary care physicians to spend more time talking to them about their problems, they had limited expectations of this in practice, especially if they had been seeing their primary care physician for an extended time. The participants felt that their primary care physicians became complacent about their problems after a while. Therefore, lay accounts of diagnosing and treating depression highlighted the limitations of trying to use a medical paradigm to solve what are perceived as entrenched social or personal problems. Yet at the same time, some participants in this study medicalised their own distress and embraced aspects of the biomedical approach to depression, including the use of antidepressants. Thus, the next section discusses how participants in this study dealt with this dissonance in terms of incorporating a medical diagnosis of depression into their personal life story.
Incorporating a diagnosis of depression into one’s life story
In a similar vein to Karp’s (1994) study of personal experiences of depression, some participants in this study described being diagnosed with depression as providing hope of a resolution to their problems. At the same time, receiving a diagnosis was described as the first step in a long and difficult process in searching for ways to get better. The diagnosis of depression was often depicted as a catalyst for changing one’s life. For example, for Bill (married, employed, 49), being diagnosed with depression was a wake-up call and had allowed him to radically change his life. Bill described the events leading to his diagnosis in terms of various stressful relationships in his life; resentment towards his ‘lazy’ children, a strained marriage, colleagues who expected him to do more than his fair share of work, an elderly mother who recently developed dementia, the recent suicide of his close friend Jim and his subsequent involvement with Jim’s grieving sister. After being diagnosed as depressed, he took three months off work and spent time engaging in various self-help strategies, including meditation, reconnecting with friends, self-help reading, diary writing and taking an interest in new hobbies such as music. Following this period, he returned to work, taking on lighter duties and was less involved in stressful issues. He also stopped seeing Jim’s sister so much and came to recognise that he could not solve all the problems in the world. As a result of these strategies, he said he felt far less pressure on himself and felt less agitated in his relationships.
At the end of the interview, Bill stated that he felt almost fully recovered and that going through depression had strengthened his sense of self. For Bill, the diagnosis of depression was incorporated into his life story as a difficult but ultimately ‘life-saving’ experience that altered his personhood in a positive way. Similar to the findings of other studies of lay accounts of chronic illness, for some participants in this study ‘illness is cast as an epiphany, a kind of wake up call, which allows one to re-order everyday life’ (Riessman 2002: 22–3). Bill said:
There are issues that I have to work through still, but in a lot of ways I have become stronger as a person as well. I have got a really deeper knowledge and understanding where I can talk to people without being really agitated and concerned about what I am saying to them.
For other participants, being diagnosed with depression seemed to confirm a view that was already well-established in the sufferer. After being diagnosed, they often reflected back on their childhood or youth, interpreting earlier events as signs of what was to come. As mentioned, it was common for participants to mention a parent, sibling or other family member who was also, in their view, depressed. In such cases, depression was absorbed into the participant’s life story, reinforcing a sense that they had been depressed all along. For instance, Philip said his depression probably started in childhood. When he was eight years old he was in a serious car accident and had to spend a prolonged period in hospital. He lost about 30 per cent of his body weight, and when back at home, he ‘over ate’ and put on ‘quite a lot of weight’. As a result he was bullied at school and felt stigmatised and discriminated against. Philip also mentioned that his father, mother, sister, second wife and stepdaughter all suffered from depression, stating that ‘despite environmental factors, I also have familial factors that make it [depression] strong’. In spite of being on antidepressants and undertaking self-help strategies such as cognitive behaviour therapy, Reiki and Tai Chi, Philip stated that he believed he would be depressed for the rest of his life:
I honestly don’t think that it will ever get any better than this ... Despite the fact that I am quite happy with some components of my life, the overall life I am not happy with at all. I am quite disappointed with it in actual fact. (Philip)
As in other studies of lay accounts of chronic illness (Charmaz 1999: 372), the story of suffering had ‘become etched to the self’, to the point that the story of one’s depression became the story of the self. Indeed, some participants had incorporated the diagnosis of depression into their personal narrative so thoroughly that potential recovery from depression was seen as threatening to the self. Anna described feeling that she no longer knew what it would feel like, or who she would be, if she was to recover. The diagnosis of depression occupied such an important position in her life that she admitted being fearful of recovery. Anna said:
I’ve had doctors sort of talk about other things like shock therapy [electroconvulsive therapy] and other sort of stuff but then it’s sort of like, ‘Well, that doesn’t necessarily work either’ and then there’s this really weird part of me that goes, ‘oh my god, if I am cured, uhh, who am I?’ Because this has been part of my life for so long. Who the hell am I? If I haven’t got this depression.
For some, the act of diagnosis was less significant than receiving a prescription for antidepressants. Being told that they needed medication was challenging. Una said she did not expect to be put on medication, and that she ‘got a big shock when he [primary care physician] pulled out the big guns [antidepressants]’. Some participants said they had difficulty accepting that they may need to take antidepressants for a long time, possibly for the rest of their life.
People’s reactions to being diagnosed as depressed differed and were sometimes contradictory. The diagnosis of depression fulfilled a useful function in validating the individual’s concerns about the cause and nature of their distress and confirming that they were not ‘going bananas’ (Una), but could also be challenging to their sense of self. It could also act as a catalyst for self-transformation and self-improvement, as in the case of Bill. Alternatively, it could be incorporated into one’s life story so that depression became etched on the self, as in the case of Philip and Anna. Our analysis shows participants’ conflicting and multifaceted responses to a diagnosis of depression, which reflects the dissonance between medicalised and non-medicalised discourses and raises questions about contemporary expectations of what it means to be emotionally healthy.
Our research reveals a dissonance in lay accounts of being diagnosed with depression where patients resist and challenge the medicalised discourse of depression by emphasising the social context of their distress, coupled with their desire for more guidance from primary care physicians on their problems with everyday life. The participants recognised that they consulted their primary care physician for non-medical problems in the absence of other forms of help, and were ambivalent about the efficacy of antidepressants. At the same time, they embraced aspects of the medicalised discourse on depression by characterising their distressed emotions as something that was wrong with them, safeguarding their right to medical treatment in the form of antidepressants and incorporating a medical diagnosis of depression into their life story.
As others have pointed out in relation to doctors’ accounts of depression (Thomas-MacLean and Stoppard 2004: 288), the dissonance identified in our participants’ accounts of being diagnosed with depression fits with a view of illness as part of a ‘dynamic dialectic’ between individuals, their bodies and culture’ (Kleinman 1988: 14). These individuals found themselves caught between the allure of medicalised discourse with its promise of cure and relief from ‘symptoms’, and resistance to it, based on the recognition that their problems originated in the social domain, which was thought to be too complex to be treated with medication.
These accounts confirm previous studies that demonstrate the complexity of diagnosing depression in primary care settings. In this study, however, the participants did not complain that primary care physicians failed to recognise their symptoms, but that practitioners did not allow enough time to engage in talk about the complex and entrenched problems they faced. Earlier studies have suggested that depression is an explanation for emotional distress that is utilised by those primary care physicians who are looking for simple solutions to complex problems, and by individuals who want relief from personal anguish and distress (Dowrick 2004, Kokanovic et al. 2010). Our research provides some evidence in support of these arguments, in that the participants revealed that they visited their primary care physician for personal problems because of an absence of other forms of help, but had little expectation that their primary care physician could help them address the core cause of their problems. Thus, although they embraced aspects of the medicalised discourse of depression, at the same time they also resisted it and highlighted its limitations in helping them with their problems.
Our findings raise further questions about how mental illness and emotional health is currently conceptualised. Many sociocultural critics have highlighted the need to examine individual and societal expectations about the role of disappointment, sadness, frustration and other negative emotions in our lives, railing against the tendency for social and structural influences to be discounted in favour of ‘narrow psychological contemplation’ (DelVecchio-Good et al. 2008: 18, Craib 1994, Kokanovic 2011). An emphasis on the achievement of personal happiness and fulfilment in post-1980 individualist society means that self-esteem has become the important explanatory variable, and that individuals tend to be seen as ‘unhealthy’ or ‘pathological’ if they feel dissatisfied, disillusioned or miserable (Furedi 2004: 23).
In this study, the way in which participants moved inside and outside the medicalised discourse on depression when describing their emotional distress points towards a degree of recognition amongst contemporary individuals that disappointment and dissatisfaction are a part of normal everyday life. Yet at the same time, individuals found it difficult to deal with the levels of their distress without seeking support, and continued to consult their primary care physicians, despite expressing frustrations with the limitations of the medical model. Numerous studies of primary care physicians’ accounts of diagnosing and treating depression also highlight the sense of powerlessness that doctors experience in trying to deal with non-medical problems in a medical framework (Cassell 2004), suggesting that alternative, less medicalised approaches to dealing with individuals who consult primary care physicians for emotional problems are required. As government arrangements for the provision of health services usually demand ‘medical models, labels and treatments to justify medical input’ (Jacob 2006: 836), it is evident that formal diagnoses will remain an important aspect of health service delivery for some time yet.
Some have called for a shift away from applying diagnostic labels for depression in primary care; offering, instead, a model of care that provides support for patients who are emotionally distressed without requiring a formal medical diagnosis (Dowrick 2004, Jacob 2006). There is some evidence of a shift towards a de-medicalised model of care in practice guidelines on depression, with some current national and professional guidelines suggesting that ‘mild’ and ‘moderate’ depression is ‘a relatively benign and usually self-limiting illness for which antidepressants are not usually required or even appropriate’ (Pollack 2009: 164).
Indeed, in the UK the use of models from the recovery movement in mental health indicate that the ethic of self-management of chronic illnesses more generally is gaining momentum as a high profile policy initiative having been introduced in the last decade (Greenhalgh 2009). Self-management is a reflexive approach that provides autonomy and self-determination (Wilson and Scott 2011). Scepticism is needed to ensure it is not simply a strategy to shift responsibility for health entirely onto the individual and reduce the economic burden associated with chronic illness (Kendall and Rogers 2007).
Nonetheless, resistance to medicalised approaches to depression, particularly pharmaceutical intervention, is evident in some participant accounts in this study, suggesting that more complex approaches incorporating talking cures and social interventions to address emotional distress in primary care settings is to be encouraged. Although the present shift away from quick fix pharmaceutical solutions is to be welcomed, the limits of medicine, even in integrated healthcare, are questioned both by service users and health professionals in addressing the epidemic of depression in contemporary society. In an age of austerity and continued economic downturn, solutions that focus on addressing the broader social factors that contribute to the individualised experience of anxiety, distress and loss of control remain an enormous challenge.
We would like to thank all the participants in this study who generously shared their stories of living with depression with us. We wish to thank the anonymous referees for their constructive comments and suggestions on earlier drafts of this paper. Support for this research was provided by the Australian Research Council Linkage Grant LP0990229 and the Australian Primary Healthcare Research Institute, which is supported by a grant from the Australian Department of Health and Ageing.