Exploring stigmatisation among people diagnosed with either bipolar disorder or borderline personality disorder: A critical realist analysis
Abstract
This study explores experiences of stigma and discrimination amongst people diagnosed with bipolar disorder (BD) or borderline personality disorder (BPD). Inspired by Margaret Archer's morphogenetic sequence and the ontological depth of critical realism, a temporal framework for stigmatisation, incorporating structure and agency, is developed and used to situate these experiences. A literature review found very little existing research on the subjective experience of stigma amongst these diagnostic groups. Indeed, most mental illness stigma research is quantitative and focussed on schizophrenia and depression. In-depth interviews were conducted with twenty-nine people diagnosed with BD or BPD, along with five ‘friendship’ mini-focus groups within the UK. Participants were recruited via charities and participant networking. Using thematic analysis, along with abductive and retroductive inference, experiences and anticipation of stigma and discrimination for participants with one of the two diagnoses in various contexts of social interaction were found to coincide with ‘four faces’ of oppression: cultural imperialism (pathologisation, normalisation and stereotyping), powerlessness, marginalisation and violence. Such experiences implied a range of antecedent social and cultural structures. Implications for the stigma concept are discussed.
Bonnington, O., & Rose, D. (2014). Exploring stigmatisation among people diagnosed with either bipolar disorder or borderline personality disorder: A critical realist analysis. Social Science & Medicine, 123, 7–17. https://doi.org/10.1016/j.socscimed.2014.10.048
Key Notes
"Power was incorporated into the stigma concept in response to criticism from disability theorists who argued that stigma was not about ‘personal tragedy’, but rather the social oppression of difference (Oliver, 1992). And oppression, as one of the functions of stigma (Phelan et al., 2008), is conceived by Young as having ‘five faces’: exploitation, marginalisation, powerlessness, violence and cultural imperialism (1992)."
"It has been claimed that BPD is the most stigmatised psychiatric diagnosis (Nehls, 1998). Yet, virtually all accounts of public stigma involve healthcare worker social roles, suggesting public unawareness of the diagnosis (Aviram et al., 2006; Black et al., 2011; Bodner et al., 2011; Commons Treolar and Lewis, 2008; Deans and Meocevic, 2006; Fraser and Gallop, 1993; Gallop et al., 1989; Markham and Trower, 2003; Nehls, 1998; Ross and Goldner, 2009; Westwood and Baker, 2010; Woollaston and Hixenbaugh, 2008). For instance, nurses commonly view BPD patients as difficult, annoying, manipulative, treatment-resistant, dangerous, attention-seeking, nuisances, and timewasters. They also report fear and frustration in reaction to self-harming behaviour (Wilstrand et al., 2007) and tend to view those diagnosed as ‘bad’ rather than ‘ill’. However, public unawareness of the diagnosis does not mean that people with the diagnosis are socially invisible; self-harm scars can render illness ‘visible’ in social interaction, possibly increasing exposure to stigma (Schulze et al., 2010). Beyond clinical interactions, BPD is marginalised at the levels of policy, planning, staff training and service delivery, perhaps representing social oppression (Kealy and Ogrodniczuk, 2010) or institutional abuse (Warne and McAndrew, 2005)."
"The significance of comparing stigma between BPD and BD diagnostic groups
Apart from the dearth of stigma research related to the two diagnoses under consideration, there is diagnostic importance to their selection. Researchers have been divided as to whether BPD is (Akiskal, 1996; MacKinnon and Pies, 2006) or is not (Paris, 2004; Paris et al., 2009) a bipolar spectrum disorder. To the extent that people in the different diagnostic groups share some of the same symptoms, and that a BPD diagnosis can later be changed to a BD diagnosis (Gunderson et al., 2006), the diagnostic labels used to describe thoughts, feelings and behaviours become potentially significant, because labels may influence societal reaction and subjective experience (Link et al., 1987)."
"Subjects of cultural imperialism: unaccepted beings
Cultural imperialism refers to “the experience of existing in a society whose dominant meanings render the particular perspectives and point of view of one's own group invisible at the same time as they stereotype one's group and mark it out as ‘other’” (Young, 1992 , p. 191). Participants experienced this in terms of being pathologised, normalised or stereotyped. Fundamentally, this consisted in subjectively inappropriate extrinsic judgements of their being that implied they had ‘ontological deficits’ (Scambler, 2009). This pointed towards conflict within cultural structures (especially relating to concepts of mental illness), which were operationalised by actors within structural relations."
"Some participants rejected any intransitive reality to their distress in toto. Some others dismissed the idea that they were permanently disordered in the sense of having an enduring personality fault (BPD) or psychological/biological defect (BD). As a consequence, many rejected, to some extent, the extrinsically instituted social identity of being part of a mentally ill primary agent. This appeared to be a far more salient problem for BPD participants, many of whom felt the diagnosis was either unrelated to themselves or represented a negative moral or pathological-ontological judgement.
'I think you get a certain type of people who like to grab onto labels and it becomes their identity and they become defined by their diagnoses and I never ever wanted to do that. If there was a diagnosis that was particularly useful in that it would help me get better by accepting it... I would be more than happy to... But I just didn't feel that BPD was like that at all.' (BPD)"
"Normalisation
In contrast to being inappropriately pathologised, many participants felt unjustifiably normalised by others. Here, participants' being and subjective illness experience were deemed incompatible with culturally hegemonic notions of illness. Many BPD participants had what they considered to be their ‘illness’ dismissed as illegitimate by healthcare staff, friends and family. Families may be motivated to normalise, as to accept a loved one's illness might be to invite public stigma. Instead of being regarded as ill, participants' behaviour was constructed as morally transgressive. This categorisation served to misunderstand/underappreciate the intransitivity of their distress.
'Some people think BPD's a load of bullshit and that I just can't control my emotions and that I'm a massive attention-seeker who needs to be kicked up the butt, basically ... it's kinda what my mum thought at first.' (BPD)"
"BPD participants felt that the general public was largely unaware of BPD (i.e. an absence of information , rather than misinformation), aside from some unsympathetic Hollywood portrayals. Hence, stereotypes relating to BPD were thought to have originated from and been applied to them by healthcare staff.
'Psychiatrists are the worst ... they need to stop telling people it's their fault, it just makes a person [feel] worse.' (BPD)
Whereas most participants recounted some positive stereotypes relating to BD, there were only negative generalisations described for BPD, the majority of which concerned the ‘logic of culpability’ (Scambler and Paoli, 2008). These included being attention seeking, manipulative, trouble-making, dishonest, childlike, irresponsible, malingerers, untreatable, and pathologically violent/ angry/confrontational. BPD participants compared the perceived positive portrayal of BD, and its relative social acceptance, to their continuing marginalisation. However, BPD participants who had little interaction with healthcare services, or more positive experiences in healthcare, felt that there were no stereotypes related to the disorder.
'I don't really think that there are any stereotypes because no one really knows what it is.' (BPD)"
"Powerlessness
Consequent upon being pathologised, normalised or stereotyped, participants in both sub-samples had their abilities circumscribed within various contexts, constituting powerlessness. Participants experienced identity constraint (pathologisation, normalisation, stereotyping) enacted by others' judgements and were prevented/discouraged from developing subjective interpretations of distress and personal efficacious ways of managing it. Many participants had little power to influence healthcare treatment as a consequence of patient--practitioner role asymmetries, as well as the legal and policy aspects of structure within healthcare. Individual role incumbents (e.g. those occupying clinician or family roles) also misused their positions of power to effect this[...]
Furthermore, participants were unable to get perceived inaccuracies removed from their medical records and sometimes had their right to privacy as in-patients disregarded[...]
Whereas many participants diagnosed with BD were powerless to resist coercion, many of those diagnosed with BPD were powerless to resist exclusion from treatment.
'If you say ‘you've got this, therefore we can help you with X, Y and Z’, that's not as bad as saying ‘you've got this [i.e. BPD], we can no longer help you’ which was basically what I was being told. ‘There is no treatment, we're not offering you any therapy, we're not offering you any medication and there's no point of you going into hospital’...the use of it [i.e. the diagnosis] to the doctors was that it meant they no longer had to bother to make an effort because ‘she's one of those we can't help’.' (BPD)
As such, powerlessness and marginalisation were intertwined for BPD participants in healthcare contexts, which has not previously been made explicit in the literature."
"Even when they could access treatment, it was often viewed as too short-term, too irregular and impersonal. As a consequence, some participants had decided to disengage with services after receiving what they felt was hostile, anti-therapeutic treatment, but this left them relatively isolated and lacking support. Others were deemed ‘recovered’ by services when they felt they still needed care."
"Many participants in both sub-samples experienced physical and psychological violence consequent upon being pathologised or stereotyped. This mainly occurred when entering or being within healthcare settings, often perpetrated by police and healthcare staff[...]
'I had to do whatever they [nurses] were doing. I didn't even have any privacy to put a tampon in. I was followed to the toilet with someone holding the door open all the time watching' (BPD)"
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