Doctor knows best, poisoned chalices, and beings on drugs: Young people’s accounts of getting the diagnosis of “bipolar disorder”

3
1230

‘I guess prior to knowing, I didn’t really think it was a medical condition, I thought it was more environmental… to do with your situations and how that shapes your mood more’

‘I think that these meds are… really bad for you’

Not long ago, as part of a research study, I asked six young people how it was for them to receive the diagnostic label of bipolar disorder (1). These young people were ‘Mark’ (2), a Black-British male, aged 12 when diagnosed; ‘Jessica’, a White-British female, 15 when diagnosed; ‘Jane’, a White-British female, 16 when diagnosed; ‘Rachel’, a White-British female, 17 when diagnosed; ‘Sofia’, a White-European female, 20 when diagnosed; and ‘Ahmed’, an Arab-British male, aged 20 when diagnosed. Selecting from categories presented, three, Jessica, Jane, and Sofia, identified as ‘middle-class’, whereas Mark and Rachel were ‘working-class’. Ahmed, in a homelessness hostel in one of the UK’s most impoverished areas, did not identify with any ‘socioeconomic status’ or ‘class’. My analysis of these young people’s stories can be summarised in three main themes.

Main theme 1: Authority is knowledge (Doctor knows best)

This first theme highlights how these young people’s understanding of their difficulties following diagnosis involved a process of alienation. Their perceptions of their problems post-diagnosis often seemed disconnected from their own sense-making, and instead appeared to be exterior ‘knowledge’ dictated to them about their distress from a biomedical perspective. Once these young people received their ‘truth’ in diagnosis, rigid narratives formed, and alternative explanations they had for their distress became overshadowed and ignored. This ‘truth’ (mis)led them to see their distress as, at root, a concrete ‘thing’; a genetic flaw, or a chemical imbalance, for example – identifiable, that is, at a pathophysiological level. It also led them to medicalise their emotions, a process seemingly obstructing them from engaging with, and thereby working through, emotional responses to adversities in their lives, which they all seemed to know were related to their difficulties.

These young people typically understood bipolar disorder’ as a discrete, innate, autonomous entity, a thing within them that they had or got, that controlled their thoughts, emotions and behaviour, and which they had to fight. This conceptualisation of bipolar disorder as in essence an aggressive biological disease, seemingly permitted them to turn complexity and uncertainty into simplicity and certainty, enabling them to feel more in control, which in some ways helped to quell anxiety. It also, however, seemingly chained them to one way of understanding their difficulties, limiting their capacity to overcome them.

Overshadowing stories of adversity (Medicalising emotionality)

‘My first depressive episode was triggered by my parents’ divorce’

‘I wasn’t really.. shocked at the fact that I had bipolar, ‘cause, like, considering the things I’ve been exposed to from such a young age…’

This aspect of this main theme highlights how external, authoritative knowledge overshadows internal sense-making, in this case by pathologising, decontextualising, and de-psychologising difficult childhood experiences. Each of these young people had lived through multitudinous childhood adversities, such as poverty; bullying; trauma; life-threatening diseases; abandonment; bereavements; and family conflict, division and estrangement. Most suggested some of their distress stemmed from such adversities. These explanations were, however, largely over-written by the knowledge of the diagnosis: that their difficulties were caused, ultimately, by the biological disease, ‘bipolar disorder’, and that their manifold adversities had served merely as ‘triggers’.

Another explanation, overwritten by this diagnosis, was that ‘antidepressants’ had caused these young people’s mania. Three, Rachel, Sofia, and Jane, reported mania soon after starting on ‘antidepressants’. Rachel felt these drugs had caused her mood to cycle rapidly, which caused her at age 17 to try to take her own life, resulting directly in her diagnosis of bipolar disorder, which she spoke of as a ‘life sentence’. Jane had a similar story, also reporting that her psychiatrist refused still, years later, to take her off ‘antidepressants’, in spite of her protestations and her continued mood cycling. A fourth, Mark, mentioned being prescribed antidepressants for bipolar disorder. This is all noteworthy, given we know antidepressants often induce mania (3). These young people also highlight additional ways in which mental health services can (re)traumatise those diagnosed. Jane’s experience of re-traumatising EMDR and enforced CBT, and Jessica’s account of coercion in relation to ‘zombifying’ ‘antipsychotic’ drugs, were particularly striking.

To reiterate, these young people’s stories were imbued with relational adversity and trauma, in childhood and at the hands of mental health services. Perhaps the most important mechanism by which these stories were then overshadowed was medicalisation, by services, of the emotions largely seeming to stem from these adversities. It was clear, too, that these young people medicalised their emotions generally after diagnosis. Jessica, for example; bullied, isolated, and forced, terrified, aged 15, into ‘treatment’, came to view all her anger, before and after her diagnosis, as a ‘symptom’ of ‘bipolar’. Similarly, those close to Jane, who for much of her life had suffered adversities of a life-threatening nature, came to see her anger as part of her ‘illness’, ‘bipolar’. Jane, however, challenged this ‘insulting’ idea loudly, and in turn was pathologised, driving her to despair. Mark, overwhelmed by academic pressures aged 12, had seen his own distress as largely stemming from these pressures, until his diagnosis of ‘bipolar disorder’ led him to believe his feelings were not ‘normal’. Ahmed, fleeing from a broken home, still in poverty, knew his context had shaped his feelings. He mostly dismissed his diagnostician’s ‘knowledge’, resolutely addressing himself to the task of working out for himself how to overcome these problems.

Doctor knows best(?)

‘I feel like I’m always really encouraged by like doctors or psychologists or whatever that I can’t trust my own judgement.’

‘Crime and stabbings has increased dramatically right, and why would a country like this have so much stabbings and crime? And people always like to just throw it around and just say ah yeah this guy’s got mental this and that.. But how? How does he get mental like that? It doesn’t just happen overnight.’

These young people’s sense of doctors’ knowledge was often, but not always, contrasted with a sense of lack of knowledge on their own part. Ahmed, an Arab-British male, and Mark, a Black-British male, opposed and questioned their diagnosis more than the four White females who spoke. On the whole, though, these six young people were silent about their own formulations of their problems in the face of doctors’ ‘knowing’. Their stories shed light upon why, in the face of oppressive power, people might not share their own insights into their problems. Previous studies also show that those diagnosed receive little information or explanation about diagnoses, with interactions characterised by professionals ‘holding and withholding knowledge’ and exercising power over their situation. People given a psychiatric diagnosis express confusion about what diagnoses mean, about the nature of their problems, and about the language to use to describe those problems (4). Those, furthermore, who do not accept the external viewpoint of diagnosis and choose instead to trust their own judgement, are seen as ‘lacking insight’. Such imposition of understanding would seem to block the capacity of those diagnosed to trust their ‘organismic valuing process’ (5) – their ability to rely on themselves and their visceral experience as accessible sources of wisdom in making sense of their difficulties.

Main theme 2: A poisoned chalice

Where the theme of Authority is knowledge (Doctor knows best) examines the role of dominant narratives in young people’s sense-making, A Poisoned Chalice highlights the paradoxical nature of the psychological and emotional consequences of these narratives. Often, initially, these young people felt relieved and empowered after diagnosis. However, labels seemed to serve simultaneously as drivers of more pernicious feelings, including hopelessness, disempowering them in various ways. The latter feelings were often overshadowed by the former. The fear that Jane felt, for example, upon being led to believe bipolar was ‘forever’, was superseded initially by relief at having the certainty of an explanation.

A forever thing

‘It’s not a get better it’s a how you are forever thing… when I was first diagnosed the psychiatrist explained that to me as have all the subsequent ones.’

‘I’ll have this like forever kind of thing … it kind of made me worried.’

This subtheme, A forever thing, shows how these young people’s belief in ‘bipolar disorder’ as a permanent condition generated an array of distressing emotions: fear, despondency, worry, and a sense of powerlessness and hopelessness, to name some. Rachel’s hopelessness in the face of her ‘life sentence’ aged 17, was such that she felt her only choice was to kill herself, and it remained the case this idea shaped much of her continued despair.

The notion of permanence is, however, problematic in numerous ways; indeed it may be illusory (6). Both clinical practice and academic research, involving, respectively, ‘patients’ and ‘participants’ said to have ‘bipolar disorder’, by nature exclude many who experience, or have in the past experienced, the kinds of extremes in mood linked with the diagnosis, and who have never engaged with, or have disengaged from, mainstream mental health services. In my own research, had I recruited only people engaging currently with such services, the voices of Ahmed, Jessica, and Mark would not have been heard. The latter two had succeeded, three years before interview, in coming off the drugs administered for ‘bipolar’, barely engaging with services since. Ahmed rejected mainstream services upon diagnosis along with the drugs decreed for his ‘disorder’. These stories challenge the idea of these mood states as ‘forever’ in need of pharmaceutical intervention. They support existing research showing that many reject these labels and these services.

Most ‘bipolar disorder’ research, however, is funded by the pharmaceutical industry, one of its active interests being maintaining and promoting a view of ‘patients’ as chronically ‘sick’, and always in need of long term medical intervention (7 8). The framing of ‘mental disorders’ as lifelong, where the best one can hope for is stability on ‘medication’, by force if necessary, would seem to cause unwarranted fatalism in those diagnosed, perhaps resulting for many in poor self-management and a self-fulfilling prophecy. Holding in mind Levinson’s (9) notion of ‘The Dream’ of adolescence, ‘a vision, an imagined possibility that generates excitement and vitality’ (p. 91) with respect to a young person’s future, one can see how being told as a young person that one is ‘diseased’ forever, would amount to the dashing of dreams; perhaps to abject despair. This seemed very much the case among the young people I met. Finally, as most were aware, the drugs given for ‘bipolar’ are often linked with causing distress. Rather than their having a chronic illness, this might be an alternative mechanism by which young people remain in mental health services long term.

(Certainty brings) relief and splitting the self, forging identity

‘I just felt very happy very relieved.. in the beginning.’

‘I don’t know where I start and.. the bipolar I don’t know what that line is… I don’t know who I’m supposed to be now.’

Two other aspects of the theme A poisoned chalice were Certainty brings relief and Splitting the self, forging identity. Diagnoses brought relief, often fleetingly, partly because they allowed these young people to externalise problems as symptomatic of ‘illness’, rather than what they saw as ‘character flaws’, thereby allowing them to feel less responsible for them. Those who self-diagnose bipolar disorder also seem to conceive of it as an autonomous entity, enabling them to externalise unwanted aspects of the self (10).

The subtheme Splitting the self, forging identity highlights and expands upon these young people’s tendency to separate ‘wrongness’ from their self. It seems the label ‘bipolar disorder’ permitted them to separate challenging aspects of experience, primarily extreme feelings of anger, despair, anxiety, and disinhibited elation, and ensuing actions, from their experiential self, allowing them to some degree to protect a sense of integrity of self and identity. For many, however, this splitting off of an array of psychological, emotional, biological, and behavioural characteristics, seems to render self and identity confusion worse (11). The diagnostic process often seems to deepen a process of disintegration of sense of self, in contrast to numerous alternative contemporary approaches which aim to facilitate and encourage, a gentle (re)integration of split off, repressed, and denied, aspects of self and experience.

That receiving the diagnostic label of bipolar disorder leads to identity confusion is unsurprising, given biomedical propagation of the idea the ‘disease’, ‘bipolar’, should be separated from the ‘stable and rational managing self’, ‘the mind’, which thinks, and so can ‘observe, measure, anticipate, and preside over’ (12) this ‘disease’. As with other psychiatric ‘disorders’ such as ‘schizophrenia’ and ‘ADHD’, there is no rigorous, replicated, reliable evidence to support the widespread framing of ‘bipolar’ as a physical disease, separate from the thinking self, or any other self. This is, however, what clinicians commonly convey; increasing the likelihood of identity confusion as people strive to decipher what is ‘them’ and what is ‘illness’. Some young people reject this diagnosis as a threat to sense of self and identity, protecting themselves from this confusion (13 14). This label can also result in disturbances caused by the drugs synonymous with it. Jessica, for example, spoke of a profound change in her sense of self (‘I was like a zombie’) due to the drugs imposed on her along with the label.

Main theme 3: Being(s) on drugs (Pharmaceuticalisation)

‘I’ve been on twenty five plus different medications since diagnosis… just trying to find something that worked.’

‘I don’t think mental health medication is good for people because they might put down something, but it’s definitely gonna.. something else is gonna rise up, that’s for sure.’

Each of these young people was given psychiatric drugs upon diagnosis, to the extent it seems the diagnosis is synonymous with these drugs. Only Ahmed refused them, primarily as he had seen family members, also diagnosed with bipolar disorder, admitted to hospital only after starting on these drugs, which, he concluded, are ‘really bad for you’. Though a few found them helpful, more found them harmful. Rachel described how ‘antidepressants’ caused her mood to cycle ‘unbearably’, to the point she tried to kill herself. She was then hospitalised, had her mood states diagnosed as ‘bipolar disorder’, and was put on ‘antipsychotics’, which led her to feel depressed. Harms linked to ‘antidepressants’ are known (15 16 17) but are widely minimised or concealed (18 19 20). Many service users and professionals, including psychiatrists, are now drawing attention to these harms, calling for a radical reduction in drug use, and advising people on how to reduce carefully, safely, and with compassionate support (21 22 23 24 25 26).

Shifting stories

The dominant Western approach to ‘mental health’ is medicalising, decontextualising, and designed to bolster the power of the clinician (27). Psychiatric labels obscure people’s stories, transforming lived experience into pathological ‘symptoms’, ‘disease’, ‘genetic vulnerabilities’ and ‘chemical imbalances’ (28). Such language would seem to mask, legitimise, and reproduce harmful power imbalances in wider society which, in the UK have been baked in deeper during economic austerity (29 30). Research shows so-called ‘psychiatric symptoms’ are comprehensible not as evidence of disease, but often as understandable responses to adverse environments; protective responses (31). The tradition of medicalising human suffering, according to influential reports, ignores this rapidly growing evidence base, is based upon biased, unreliable ‘evidence’, and ’must be abandoned’ in favour of a shift in focus; from ‘chemical imbalances’, to ‘power imbalances’ (32).

Moving forward, and with specific reference to ‘bipolar disorder’, practitioners should refrain from telling those in distress they have a lifelong ‘disorder’ from which they will never ‘recover’, as it seems is standard practice presently. It might be more helpful – and foster more of a sense of autonomy, and responsibility – to convey that these kinds of experiences are often temporary. We might also offer those coming into contact with mainstream services more choice in relation to the drugs seemingly synonymous with the diagnosis, and inform them of risks, including that these drugs might cause serious health problems, which might contribute to remaining in mental health services long term.

We should acknowledge, too, that those in distress are not self-contained individuals, but subjects of systems (including mental health systems) shaped by, and shaping, injustice and exploitation; cruelties commonly hidden when their effects are framed as, at root, a case of dysfunction within individuals. An ethical approach would not mask, legitimise and reproduce harms, but would address how the operation of oppressive power perpetuates those harms (33 34). An ethical approach would challenge systems that marginalise, disenfranchise and disempower, and support us in our endeavours to hold injustice, exploitation and cruelty, to account.

Hornstein (35) writes that ‘…for as long as psychiatry has existed, there has been a rival literature on madness written by people with first-hand experience’ (p. xv). This literature often strongly challenges the medicalisation of distress, suggests very different frameworks for understanding that distress, and is almost entirely ignored by the dominant tradition. I recently added my own voice to this literature (36), and I think we all have first-hand experience of some kind; though there are, of course, degrees. I believe the voices of the young people on the receiving end of these kinds of labels call into question the dominant tradition, which too often functions to close off such questions, overshadowing and annulling stories, dreams, and searches for meaning.

References:

1 Marshall, J.P. (2021). Toward a psychology of (un)certainty. An interpretative phenomenological analysis of young people’s accounts of receiving a diagnosis of bipolar disorder (Doctoral thesis, Regent’s University London).

2 As in my thesis, pseudonyms are used, and certain features disguised, to maintain anonymity and confidentiality for those involved.

3 Preda, A., MacLean, R. W., Mazure, C. M., & Bowers Jr, M. B. (2001). Antidepressant-associated mania and psychosis resulting in psychiatric admissions. Journal of Clinical Psychiatry, 62(1), 30-33.

4 Moses, T. (2009). Self-labeling and its effects among adolescents diagnosed with mental disorders. Social science & medicine, 68(3), 570-578.

5 Rogers, C. R. (1961). On becoming a person: A therapist’s view of psychotherapy. London: Constable.

6 Patten, S. B. (2018). The “Clinician’s illusion” and the epidemiology, diagnosis and treatment of depressive disorders. BMC psychiatry, 18(1), 1-10.

7 Healy, D. (2006). The latest mania: selling bipolar disorder. PLoS medicine, 3(4), e185.

8 Moynihan, R. & Cassels, A. (2005). Selling sickness: how the world’s pharmaceutical companies are turning us all into patients. New York: Nation Books.

9 Levinson, D. J. (1978). The seasons of a man’s life. New York: Ballantine.

10 Mandla, A., Billings, J., & Moncrieff, J. (2017). “Being Bipolar”: A qualitative analysis of the experience of bipolar disorder as described in internet blogs. Issues in mental health nursing, 38(10), 858-864.

11 Goldberg, S. G. (2007). The social construction of bipolar disorder: The interrelationship between societal and individual meanings (Doctoral dissertation, Fielding Graduate University, California).

12 Weiner, T. (2011). The (un)managed self: Paradoxical forms of agency in self-management of bipolar disorder. Culture Medicine and Psychiatry, 35(4), 448-483. (p. 452) 10

13 Davis, T. (2014). Living with a diagnosis of bipolar disorder: An interpretative phenomenological analysis (Doctoral dissertation, University of Wales)

14 Maynard, E. W. (2016). The experience of being diagnosed with bipolar disorder in emerging adulthood: A phenomenological analysis (Doctoral dissertation, Fordham University).

15 Healy, D., Le Noury, J., & Jureidini, J. (2018). Paediatric antidepressants: Benefits and risks. International Journal of Risk & Safety in Medicine, (Preprint), 1-7.

16 Kondro, W., & Sibbald, B. (2004). Drug company experts advised staff to withhold data about SSRI use in children. Canadian Medical Association Journal, 170(8), 783.

17 Antonuccio, D. & Healy, D. (2012). Relabeling the medications we call antidepressants. Scientifica, 2012, Article ID 965908.

18 Spielmans, G.I. & Parry, P.I. (2010). From evidence-based medicine to marketing-based medicine: Evidence from internal industry documents. Bioethical Inquiry, 7, 13-29.

19 Lexchin, J. (2012). Those who have the gold make the evidence: How the pharmaceutical industry biases the outcomes of clinical trials of medications. Science and engineering ethics, 18(2), 247-261.

20 Davies, J. (2021). Sedated: How modern capitalism created our mental health crisis. London: Atlantic Books.

21 Leader, D. (2013). Strictly bipolar. UK: Penguin.

22 Moncrieff, J. (2020). A straight talking introduction to psychiatric drugs: The truth about how they work and how to come off them (2nd ed). Monmouth, UK: PCCS Books.

23 Read, J. (2021). Are children and adolescents overprescribed psychiatric medications? The psychiatric drugging of our children: A developing international crisis. https://www.psychologytoday.com/gb/blog/psychiatry-through-the-looking-glass/202108/are-childrenand-adolescents-overprescribed

24 Rose, N. (2018). Our Psychiatric Future. John Wiley & Sons.

25 Russo, R. & Sweeney, A. (Eds.) (2016). Searching for a rose garden: Challenging psychiatry, fostering mad studies. Ross-on-Wye: PCCS Books.

26 Spikol, L. (2019). I built my identity around being bipolar. Then my doctor said I’m not bipolar, https://www.phillymag.com/news/2019/11/09/bipolar-diagnosis-liz-spikol/

27 Ferraro, D. (2016). Psychology in the age of austerity. Psychotherapy And Politics International, 14(1), 17-24.

28 Waddingham, R. (2013). Symptom or Experience: Does Language Matter? http://www.behindthelabel.co.uk/does-language-matter/

29 Hastings, A., Bailey, N., Bramley, G., Gannon, M., & Watkins, D. (2015). The cost of the cuts: the impact on local government and poorer communities. York: Joseph Rowntree Foundation.

30 Marmot, M. (2020). Health equity in England: the Marmot review 10 years on. BMJ, 368.

31 Johnstone, L., & Boyle, M., with Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D., & Read, J. (2018a). The Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behavior, as an alternative to functional psychiatric diagnosis. Leicester, England: British Psychological Society.

32 United Nations (2017). The World Health Day – 7 April 2017: Depression: Let’s talk about how we address mental health, http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=21480&LangI D=E

33 Harris, C. (2016). Austerity, wellbeing and psychotherapy. Psychotherapy Section Review, 58, 55–61.

34 McGrath, L., Griffin, V., & Mundy, E. (2015). The Psychological Impact of Austerity: A Briefing Paper. https://repository.uel.ac.uk/download/bfa6d36a930832f3d06a2785523c79daab2bfaaa2525dd8701f84f0 f8ebddd3b/11123876/paa-briefing-paper.pdf

35 Hornstein, G. (2012). Agnes’ jacket: A psychologist’s search for the meanings of madness. Ross-on-Wye: PCCS Books.

36 Marshall, J. P. (2021). Rolling in the Muck, Dancing with the Law: A Story of “Addiction” and the Remaking of a Self. In M. Milton (Ed.), Balancing on Quicksand: Reflections on Power, Politics and the Relational (pp. 13-24). Palgrave Macmillan, Cham.

3 COMMENTS

  1. This happened to me in 2000 and I have never been able to escape the label, nor have I ever been offered alternative therapies.

    Antipsychotics cause serious ill-effects long-term but psychiatrists are in total denial of this fact.

    How do we get the entire system to change when they refuse to admit liability?

  2. This is a most interesting account from young people.
    My heart goes out to all those who remain on medication for years in instances where they believe wrongly that there is no alternative.
    My suggestion is that psy should train super-specialists in
    deprescribing, who would be given the remit to review all cases at regular intervals, the system to be enacted into law.
    How else can these travesties of natural justice be prevented?