‘Commanded to be ill, accused of being well’ a lived-experience-led, qualitative investigation of service user perspectives on the impact of emotionally unstable personality disorder diagnosis on self-concept

Abstract

Background

Emotionally unstable personality disorder (EUPD) is a mental disorder impairing health and functioning and increasing suicide risk and it is a stigmatised condition among healthcare professionals. EUPD diagnosis may significantly affect self-concept, yet no previous investigation has explicitly examined this.

Aims

To explore service user perspectives on (a) the impact of EUPD diagnosis on self-concept and (b) mediators of positive and negative impacts.

Methods

Service user-led, qualitative semi-structured interviews with n = 10 participants with EUPD.

Results

Perceived impacts of diagnosis on self-concept were, broadly, negative. Factors mediating between positive and negative impacts included: exposure to online stigma and public understanding, the responses of relatives, friends, intimate partners and trusted communities, and the attitudes and behaviours of healthcare staff. There were indications that recent guideline and practice developments (guidelines recommending alternatives to inpatient admissions for people with EUPD and “recovery-focused” approaches to self-harm) may have worsened inpatient staff attitudes and led to more rejecting service user experiences.

Conclusion

Mitigating negative impacts of EUPD diagnosis on self-concept may require addressing hateful, online content related to EUPD; revisiting use of the personality disorder label; improving medical communication around diagnosis and improving practice and policy in the management of EUPD in inpatient settings.

Keywords:

• emotionally unstable personality disorder
• borderline personality disorder
• diagnosis
• self-concept
• qualitative
• mental health
• psychiatry

Introduction

Emotionally unstable personality disorder (EUPD), also known as borderline personality disorder (BPD), is a mental health condition characterised by instability in interpersonal relationships, affect regulation, self-image and impulsivity (Lieb et al., 2004). Self-harm is a common feature (Reichl & Kaess, 2021). EUPD has an estimated prevalence of between 0.7 and 2% and is the most commonly diagnosed personality disorder in the United Kingdom (NICE, 2009). Twenty percent of UK psychiatric inpatients and 10–30% of outpatients have a diagnosis of EUPD (NICE, 2007). The consequences of EUPD include premature death (the suicide rate among people with an EUPD diagnosis may be as high as 10%) (Paris, 2019) or permanent damage to physical health resulting from self-harm and suicide attempts (Brooke & Horn, 2010).

Despite only moderate evidence of the effectiveness of either pharmacological (Ripoll et al., 2011) or psychological treatments (Oud et al., 2018), the long-term prognosis for those with EUPD is good. A longitudinal study found that, at 16-year follow up, 78% of patients had had a period of remission lasting eight years or longer (Zanarini et al., 2012). Other longitudinal studies have found similarly high rates of long-term recovery (Gunderson et al., 2011). However, recovery is strongly predicted by social factors, e.g. relationship status, education and vocation (Winsper, 2021). These social factors are influenced, in turn, by societal attitudes and understanding of EUPD (Ilic et al., 2013). Public awareness of personality disorders is limited and results in those with EUPD being judged as poorly behaved rather than ill, limiting social and vocational opportunities (Sheehan et al., 2016). Perhaps ironically, studies consistently find that mental health professionals hold the most pernicious attitudes to people with EUPD (Dickens et al., 2016).

Self-concept is a term used to refer to how an individual evaluates, perceives and thinks about himself or herself. It provides key answers to the questions “Who am I?”, “Where do I belong?” and “How do I fit in?” (Oyserman et al., 2012). Self-concept includes knowledge components (e.g. beliefs about personal attributes, roles, values, and goals) and evaluative components (whether self-beliefs and self-esteem are positive or negative) (Campbell et al., 1996). Previous research has demonstrated that those with EUPD have more negative self-concept than those with bipolar disorder (Wright et al., 2021), depression (De Bonis et al., 1998; Pinto et al., 1996) and three times more negative self-concept than healthy controls (Gad et al., 2019).

Empirical studies have found that people with EUPD have lower self-concept clarity than healthy controls (Roepke et al., 2011; Wilkinson-Ryan & Westen, 2000). Self-concept clarity refers to the extent of certainty, consistency, and stability over time, of self-concept (Campbell et al., 1996). Vater et al. (2015), in a cross-sectional study, found that people with EUPD exhibit more compartmentalized self-concept than either healthy controls or depressed people, meaning they have difficulty integrating positive and negative traits within important “aspects” of the self (e.g. friends, family, school, leisure time, “me alone”). They suggest that when exposure to external stimuli relevant to a negatively compartmentalised self-aspect (e.g. “family”) occurs, flooding of negative information follows. In contrast, when a person with an integrated self-concept (i.e. one that incorporates positive and negative traits within self-aspects) is exposed to relevant stimuli, the positive self-attributed traits counterbalance the negative traits in the appraisal process, avoiding the consequences for mood and self-esteem that would otherwise be experienced (Vater et al., 2015). Empirical studies indicate that a negatively compartmentalised self-concept structure makes people more vulnerable to unstable mood and fluctuations in self-esteem caused by experience of day-to-day stressors (Zeigler-Hill & Showers, 2007). Vater et al. (2015), therefore, posit that this mechanism might explain the rapid shifts in cognition, affect and behaviour that are characteristic of EUPD. It is notable that survivors of sexual abuse prior to the age of 15 have higher levels of compartmentalisation compared to those without abuse experiences (Showers et al., 2006), which is consistent with thought about the aetiology of EUPD (Lomani, 2022).

The cross-sectional design of Vater et al.’s (2015) study did not allow for inferences to be made about the stability of EUPD patients’ compartmentalizing self-concept structure over time. However, the importance of positive self-concept to recovery from mental ill-health (Markowitz, 2001), evidence that self-concept clarity can be improved through therapy (Roepke et al., 2011), and the high rates of long-term recovery from EUPD (Gunderson et al., 2011; Zanarini et al., 2012) allow for a reasonable inference to be made that this self-concept structure is modifiable. Clinicians may conclude from these findings that: (a) EUPD is a condition that affects/is characterised by alterations to, self-concept; (b) in the short term, minimisation of exposure to relevant interpersonal triggers may be helpful to people with EUPD, and (c) modifying appraisals of interpersonal/experiential triggers may be helpful for people with EUPD.

One significant experiential trigger for people with EUPD is likely to be receiving a diagnosis. A systematic review of studies exploring the impact of psychiatric diagnosis on self-concept have found that diagnoses have mixed effects on self-concept and identity (O’Connor et al., 2018). This review found that diagnosis can threaten and devalue self-concept, lead to social alienation and invalidation and stigmatisation but can also facilitate self-understanding, self-legitimation, self-enhancement, social identification, and acceptance (O’Connor et al., 2018). However, no study, to the authors’ knowledge, has explored the perceived impact of receiving an EUPD diagnosis on self-concept. Given that the clinical diagnosis is the point at which people receive the stigmatising (Sheehan et al., 2016), EUPD label, and the diagnosis is made by professionals consistently found to harbour negative attitudes toward people in this group (Chartonas et al., 2017); it is likely that receiving this diagnosis will have an important impact on the course of self-concept in EUPD. Such investigations could have important implications for policy and practice changes that could reduce harms linked with diagnosis and improve clinical outcomes. Some may argue that people attributed with a disorder characterised by alterations in self-concept may affect their ability to judge the effect of a psychiatric diagnosis on self-concept. However, people assigned the diagnosis of EUPD have been found to have equal insight into their condition as people assigned with bipolar disorder and superior insight to those assigned with schizophrenia (Martin et al., 2021). Yet, previous studies have been conducted which evaluate the perceived impact of bipolar disorder (Tekin, 2011) and schizophrenia (Karidi et al., 2010) diagnosis on self-concept. Led by a researcher with a EUPD diagnosis, this qualitative study’s primary aim was to investigate service user perspectives on the impact of EUPD diagnosis on self-concept. A secondary aim was to identify factors perceived to mediate the relationship between diagnosis and self-concept.

Materials and methods

A descriptive qualitative research methodology (Lambert & Lambert, 2012) was adopted, using theoretically informed, semi-structured interviews. Semi-structured, theoretically informed interviews were chosen to ensure that the interviews were focused on the two main concepts examined in the research question, EUPD diagnosis and self-concept. The interview schedule for the semi-structured interview was developed from a literature review conducted in preparation for the study. Although no previous study had directly examined the relationship between these concepts, there was extensive theoretical and empirical evidence relating to both individual concepts. The following topics were inferred from the literature review as of potential importance to the relationship between EUPD diagnosis and self-concept: the experience of diagnosis; researching the diagnosis; sense of self following diagnosis; sense of belonging following diagnosis; reactions of professionals and others; discrimination experience; labelling, and perceptions of their future prospects. Questions of participants were asked in ways that were as non-leading as possible given the topic of investigation. For example, we asked “can you tell us about the impact, if any, receiving a diagnosis of EUPD had on your sense of self?”

A demographics questionnaire captured sample characteristics (see Table 1). Interviews were audio and video recorded using the Zoom platform then transcribed verbatim. An opportunity sample of 10 participants with a EUPD diagnosis was recruited through adverts posted via relevant charities on Facebook and Twitter. Recruitment and data collection continued to the point at which a sufficiently theoretically rich account of the topic of investigation was achieved to the extent that no new concepts or ideas were emerging. Using methods similar to those used for testing theoretical saturation in qualitative research (Francis et al., 2010), recruitment continued for a further three interviews after the point at which both authors agreed theoretical sufficiency had first been achieved (interviews 7–10).

Table 1. Sample characteristics.

Age	Gender	Ethnicity	Interventions	Co-morbidities	MHA detained in past 12 months	Years since diagnosis
18–30: 5 31–43: 5	Male: 2 Female: 7 Non binary: 1	White British: 8 Mixed race (white and Asian): 2	Care co-ordination: 7 Psychiatrist: 10 Psychological therapy: 10 Psychotropic medication: 10 Inpatient admission: 6	Mood disorders: 7 Anxiety disorders: 6 Psychotic disorders: 2	n = 0	0–1 years: 0 >1–5 years: 4 >5–10 years: 2 >10 years: 4

Data were analysed using thematic analysis (Braun & Clarke, 2006). Researchers familiarised with the data through reading transcripts and listening to recordings. Transcripts were then coded line-by-line. The transcripts were independently coded by both authors and regular meetings were held between the two to discuss emergent codes and shape and reshape the provisional coding framework until both authors were satisfied that the codes and themes represented a comprehensive and theoretically rich representation of the participants’ accounts. Data coding and theme development followed an inductive process. This was intended to ensure that the theoretical account developed from the analysis remained faithful to the nature and form of views and experiences that were described by participants (consistent with descriptive qualitative research methodology; Sandelowski, 2000). The combined use of theoretical (theory-informed interview schedule) and atheoretical approaches (inductive analysis) to the study, was intended to allow an authentic representation of participant experiences that was sufficiently focused on the two theoretical constructs under investigation (EUPD and self-concept).

Data quality and trustworthiness were assured by the involvement of both authors in the analysis; the inclusion of contradictory perspectives in the presentation of results and providing an audit trail. A reflexive approach to the study was adopted. The lead researcher (ZM) has a diagnosis of EUPD and has longstanding experience of both community and inpatient care. The second researcher (OP) has been a registered mental health nurse since 2005 and a lecturer of mental health nursing since 2015. His clinical background is in forensic mental health inpatient nursing. He has no diagnosis of EUPD or BPD and has no experience of being a patient in either community or inpatient mental health settings. The authors differing backgrounds could have led to either or both lending too much from their own experiences so that their interpretations no longer reflected participants’ views. These risks were managed through regular discussion of interpretations between the researchers and joint review of the coding framework and themes. In actuality, the authors found that these discussions tended to enrich and refine our interpretations rather than involve conflict over the essential meaning of participants’ experiences. As such, there was not requirement for the involvement of a third party in resolving conflicts over codes or final themes. Positive impacts of the service user researcher’s background on data quality were noted. For example, both authors felt that the lead researcher’s diagnosis enhanced reciprocal empathy and trust between the interviewer and participants and reduced social desirability bias. All participants were made aware of the backgrounds of both researchers in the participant information leaflets and during the consent process. Ethical approval was granted by University of Manchester Research Ethics Committee (ref: 2021-10389-17994) and participants consented to their data being used in the research.

Results

Participants identified generally negative but some limited positive impacts of EUPD diagnosis on self-concept. Impacts, and mediators of impact, were subsumed under three themes: (1) public understanding and online stigma; (2) the attitudes and behaviours of healthcare professionals and (3) the responses of family members, relatives, intimate partners, friends and trusted communities. An in-depth analysis of each theme is provided in the following.

Theme 1: public understanding and online stigma

Participants’ experience of clinical diagnosis followed a consistent pattern. They broadly reported identifying with the constellation of symptoms implicated in EUPD and a sense of relief that they had an explanation for their problems and a possibility of recovery. All participants who received their diagnosis in the community reported that their first response was to research the diagnosis online. Online researching represented a seminal moment for participants in terms of the impact of diagnosis on self-concept. They described feelings of despair at the quantity and consistency of online hatred toward people with EUPD. The main messages absorbed were that they were inherently emotionally abusive, manipulative and incapable of having functioning relationships. Participants described a process of foreshadowing their futures after reading this material, e.g. that they wouldn’t have functioning intimate relationships and friendships, wouldn’t have successful careers and that they would die young, e.g.:

I remember reading about it, and I was like, ‘Yep, this is me.’ But there was so much horrible information out there and it can feel like a death sentence. I remember reading one Reddit forum about BPD, and it was people all saying how we’re abusers, we’re awful and everybody should stay away from us… I was just like, ‘Oh my God, am I this awful person?’ (Participant 1, Female)

In addition to distress induced by online material, the internalisation of these messages had tangible impacts on participants’ behaviour. They reported reluctance to be open about their diagnosis with others despite this being in direct conflict with strategies they felt important in maintaining positive self-concept following diagnosis. For example, they felt positive self-concept was maintained through the integration of the diagnosis as part of their identity, achieved through connections with others with EUPD and validating relationships in general. Rarer negative impacts of online material included a sense of nihilism and diminished personal responsibility that impaired recovery and exacerbated harms. Others reported over-identification with symptoms of EUPD and a tendency to pathologise their part in “normal” relationship difficulties and conflicts.

A strategy to mitigate the impact of online material on self-concept was to identify with the creators of the negative material. For example, by attributing their views to a lack of knowledge of the condition. Participants pointed to what they regarded as an attribution error in the online accounts depicting those with EUPD. Namely that the behaviours described were characterised as fixed traits, rather than temporary states provoked by stressful circumstances and unhealthy relationships. These reflections were helpful in reducing feelings of anger and self-stigma. Another mitigation of the impact of online stigma was access to communities of people diagnosed with EUPD, developing a sense of collective identity and a motivation to support and defend members of this community. Many perceived the general effect of time helpful. As the foreshadowed consequences of EUPD diagnosis failed to materialise, participants realised that healthy relationships and vocational opportunities were still achievable. In spite of the positive life experiences participants reported, there was agreement that EUPD diagnosis could not be disclosed to employers. This provided an important indication of public attitudes to EUPD and the lack of protected rights of this group. Participants commonly reported disclosing conditions with similar symptoms, e.g. depression, anxiety or posttraumatic stress disorder, that were more socially accepted. They reported feelings of shame and alienation as a consequence of this enforced secrecy.

Theme 2: the attitudes and behaviours of healthcare professionals

This theme examines how self-concept of people with EUPD is undermined by healthcare professionals from diagnosis and throughout subsequent contact with mental health services. The typical experience participants described was of coercion or inducement to accept a diagnosis, e.g. by making access to dialectical behaviour therapy (DBT) conditional on accepting the label of EUPD. This required participants to accept a conceptualisation of their mental health problems that they did not always agree with. For example, some participants did not feel that the symptoms necessitating their engagement with mental health services should be characterised as a disorder of personality but rather understandable responses to interpersonal trauma. Latter contacts with nurses in inpatient and community settings were often characterised by invalidation of the diagnosed condition, e.g. “There’s nothing wrong with you, you’re just badly behaved” (Participant 9, Female). As such, participants were simultaneously required to assume psychiatry’s accepted definitions of their health problems, whilst being told by the designated “healing” agents of this system, that they had, in fact, no health problems to resolve. As such, a typical participant experience of mental health services was of being commanded to be ill, then accused of being well. These experiences had such a devastating impact on self-concept that some perceived the only self-protective response was to disengage from all contact with services.

Beginning with the experience of clinical diagnosis, participants described brief consultations with medical staff and inadequate explanations of the condition. The extreme examples were two long-term inpatients who had only become aware of their diagnoses from reading their medical notes following subject access requests. One participant showed a lack of understanding of the term “borderline personality disorder” despite having their diagnosis for many years, e.g.:

From my understanding, it’s called borderline, because it’s like a quasi-personality disorder, akin to narcissistic personality disorder or antisocial personality disorder, I think. But I still don’t really know… I think literally the other day, the reason I was like, “Oh it’s borderline personality disorder, because it’s similar, but not quite as bad as other personality disorders.” (Participant 7, female)

This created the perception among participants that the diagnosis was something shameful that professionals were reluctant to discuss. The main criticism of medical staff was in the perceived failure to consider the consequences of the EUPD label for people’s lives and self-concept. These consequences ranged from, at the extreme, losing custody of a child and being discouraged by professionals not to have children, to discriminatory practices in non-mental health settings, e.g. referrals to perinatal psychiatry because the diagnosis was noticed in medical notes. Multiple participants discussed impacts on their roles as mothers and potential mothers, indicating that this is an important impact of the diagnosis on self-concept, e.g.:

When I had my contraceptive implant taken out… because of the BPD diagnosis, and my history, they wanted me to have an assessment about my suitability, and part of this was assessing whether I would be being caring to a kid as well. Like my suitability or my ability to cope… If I became a mum. I think that made them ask questions that they would not have asked necessarily if I hadn’t had these labels. You know, if we’ve just declared a trauma and responded with trauma responses, I’m not sure they would have raised the red flags in quite the same way. The perinatal psychiatrist was very happy for me and my partner to continue with this plan to have children…that was quite reassuring but suddenly you find yourself thinking can I not be a parent? Can I do not do this well enough? (Participant 8, Female)

Others described assumptions made by accident and emergency staff that presentations for treatment of cutting would not require anaesthetic. Participants emphasised that this diagnosis, once made, follows the individual throughout their health career, irrespective of healthcare context or the extent of their recovery.

The necessity for medical professionals to use the diagnosis of EUPD was, by no means, evident from the accounts provided by participants. For example, many reported they had received multiple diagnoses throughout the course of their encounters with mental health services. They often described doctors who either rejected the diagnosis out-of-hand or gave credence to it to greater or lesser degrees. This suggested a potential validity problem with the diagnosis but, perhaps, more probably, variations between medical professionals in the extent to which they viewed the label as helpful to patients. Consistent with the debate within the field of “personality disorders,” participants were in unanimous agreement on the damaging impact of receiving the label of personality disorder on self-concept. Participants felt this label located the person’s problems within deficits of character. Whereas other conditions might be conceptualised as “biological”, e.g. you are depressed because of a “chemical imbalance in your brain” or “environmental”, e.g. you have flashbacks because you were sexually abused, the label of personality disorder was perceived as implying chronicity and personal blame that was damaging to self-concept.

There were descriptions of helpful medical practices that could mitigate the impact of EUPD diagnosis on self-concept. Avoiding focus on stigmatising labels and description of common symptoms, participants valued personalised insights into their problems, e.g. “You do reckless behaviours because you’re trying to self-sabotage” or “You’re self-harming because you’re dealing with these very strong emotions” (Participant 7, female). Whereas many participants had received messages of despair from medics, e.g. EUPD is “untreatable” or is a “lifelong disorder” (Participant 6, female), others reported psychiatrists who had pointed to the high rates of long-term recovery. Whilst this was broadly considered helpful, one participant reported paradoxical effects, in that this message could create pressure not to get worse and that it, again, communicated that the responsibility for recovery lay with the individual rather than the need to make changes to their environment and relationships.

Many participants expressed the view that it was not the diagnosis per se that impacted self-concept but, rather, the prejudiced attitudes and discriminatory practices they experienced from nursing staff once diagnosed. They felt that, post-diagnosis, everything they say said or did was interpreted through the lens of the EUPD label. Whilst unacceptable and damaging, these nurses’ attitudes were considered so ubiquitous that they were of secondary importance compared to cultural and systemic ideologies that, they perceived, undermined risk assessment and intervention in self-harm and suicide in this population. Many participants made reference to what was labelled in the analysis a “Taking responsibility ideology” where self-harm in EUPD could be trivialised or ignored on the basis that it was encouraging the person to take responsibility, or to enhance coping strategies or avoid reinforcing the behaviour. Participants were explicit that these ideologies contributed to neglectful care and patient deaths. There were indications that clinical guidelines recommending that alternatives to inpatient admissions for people with EUPD should be sought, may have worsened staff attitudes and led to more rejecting inpatient experiences for people diagnosed with EUPD:

Everyone is treated like an attention seeker, basically, If you don’t cut deep enough then you don’t get any help… ‘no we can’t help you in here.’ What? Surely if they’re a risk, cutting themselves, taking overdoses, whether it’s care seeking or not they could accidentally kill themselves… They’re like, “She’s still tying a ligature, we’ll leave her another ten minutes to see if she takes it off.” She could die… It’s tainted my view of support workers and nurses… the risks they take are too much… I’ve had friends die with EUPD when they wanted to be found and weren’t. . They are left to die, it’s horrendous.’ (Participant 4, Female)

Participants identified some personal strategies to mitigate the impact of abusive treatment from mental health services on self-concept. In addition to having access to EUPD communities, participants identified conducting personal research on the diagnosis as helpful. Specifically, gaining a grounding in critical feminist theory and the history of psychiatry’s treatment of women. For example, the labelling of gendered traumas as “hysteria,” in the same way as they are labelled “EUPD” now. Knowledge of the concept of complex post-traumatic stress disorder (CPTSD) also seemed helpful to participants in increasing self-understanding and reducing self-blame.

Theme 3: the responses of family members, relatives, friends, intimate partners, and trusted communities

This theme examines how the responses of family members, relatives, friends, intimate partners and trusted communities mediate the relationship between EUPD diagnosis and self-concept. One of participants’ key messages was that the diagnosis was disclosed to a small, inner-circle of trusted people only, which expanded gradually over time. Stigma meant that participants were initially reluctant to tell anyone about the diagnosis, including family and friends, for fear of being abandoned. One participant stated this need for secrecy had destroyed her self-worth by creating the perception there was a part of her “so rotten” (Participant 7, female) it had to remain hidden. There was broad agreement among participants of an indirect, positive impact of diagnosis on self-concept in modifying the behaviour of others in helpful ways. For example, the authority of the diagnosis was seen as validating of the person’s distress in the eyes of relatives and friends, increasing their understanding of rapid emotional cycles, patience and acceptance. This created a positive feedback loop whereby increased understanding; acceptance and support from others improved wellbeing and, over time, enhanced self-concept. Participants broadly agreed that the diagnosis was largely for the benefit of others and only of indirect benefit to them, e.g.:

Putting a label on it helped everyone else understand, which, in turn, helped me accept myself… Because I’d always been told… “There’s nothing wrong with you… Why are you self-harming? You shouldn’t be doing this.” The BPD diagnosis changed that narrative, suddenly people were, “Oh actually she’s not okay.” The label is more about how other people see your distress. It’s not for me, that label is for everyone else. (Participant 1, Female)

Parents were seen as having a largely negative impact on the relationship between diagnosis and self-concept. EUPD was perceived threatening to parents because of its relationship to childhood trauma and the implication that, through omission or commission, they had contributed to their child’s diagnosis. There were exceptions, including, one parent who acknowledged their child’s trauma history and objected to the selective bias of the doctor diagnosing his daughter. The single factor that seemed to positively mediate the relationship between diagnosis and self-concept was relationships that were (a) voluntarily entered into and (b) characterised by authentic love. The label “authentic love” was applied to participant descriptions of relationships during data coding by the two data analysts. This code captured the nature of helpful relationships that were described by participants. The analysts noticed that participants tended to describe loving relationships that were not complicated by conflicts of interest, for example, the possibility of guilt or duty influencing the way a parent might relate to a child or the possibility that duty and/or financial gain might be the primary motivators of a healthcare professionals’ relationship with a service user. In this sense, such relationships were interpreted as being motivated by love alone (i.e. authentic love). Applicable relationships had marked breadth but all met these dual criteria. Participants talked, with deep affection and appreciation, about intimate partners and friends who conceptualised their diagnosis as context-dependent and not a fixed trait (how professionals often communicated EUPD). They discussed how consistent acceptance, kindness and understanding could enhance self-awareness and emotion regulation and, over time, reduce the person’s identification with symptoms of EUPD. These relationships were found in intimate partners, friends, within EUPD communities and, for one participant, the Christian Church. It was notable that all these relational contexts (albeit, admittedly, dependent on your conceptualisation of organised religion) met the two criteria of voluntariness and authentic love.

Discussion

This study investigated service user perspectives on the impact of EUPD diagnosis on self-concept. The findings indicate that impacts of EUPD diagnosis on self-concept are, generally, but not, exclusively, negative. The diagnosis was accepted, broadly, as a useful explanation of the mental health problems participants experienced. The factors perceived to lessen or exacerbate its impacts on self-concept were exposure to online stigma and public understanding, the attitudes and behaviours of healthcare professionals, and the responses of family members, relatives, friends, intimate partners, and trusted communities. Participant accounts included reflections on knowledge-based and evaluative components of self-concept (Campbell et al., 1996). For example, attributes (EUPD as context-dependent, not a fixed trait), roles and goals (motherhood), values (feminism) and evaluation (“Oh my god, am I this awful person?”). The findings were also well mapped to key self-aspects relevant to the structure of self-concept, i.e. work, intimate relationships, family, friends, “me alone” (Vater et al., 2015). Our findings were also consistent with research exploring the impact of psychiatric diagnosis in other conditions. For example, threatening and devaluing self-concept but also providing some opportunity for social identification and acceptance (O'Connor et al., 2018). These reflections provide some evidence for the credibility (Lincoln & Guba, 1985) of our study, i.e. the data collection and analysis methods were sufficiently focused on the key phenomena of interest, self-concept and EUPD diagnosis.

Over the last decade, there has been significant impetus to censor social media content that promotes hatred and negative stereotypes related to ethnicity, sexuality, and gender (Copland, 2020). There has been less focus on content promoting hatred toward people with mental health disorders. Our findings indicate that limiting the availability of this content may help mitigate the impact of EUPD diagnosis on self-concept. Participants agreed they would be unwilling to disclose their EUPD diagnosis in an employment context but would be willing to disclose other mental health disorders (e.g. depressive, anxiety or posttraumatic stress). This provided an important indication of the level of public understanding and sympathy toward people with EUPD. There is evidence to support the claim that public stigma is pronounced in relation to personality disorders (Sheehan et al., 2016). Participants indicated that a key negative impact of diagnosis on self-concept was receiving the label of personality disorder. Despite research highlighting the detrimental impact of this label on identity and recovery (Ng et al., 2016) and service-user led campaigns to end its use (Watson, 2019), the label endures. Indeed, the construct of EUPD is contested (Lomani, 2022). Participants, in our own study, raised CPTSD as providing a more accurate conceptualisation of EUPD that may promote self-compassion and compassion in others. Although the majority of those with EUPD have trauma histories (Winston, 2000), CPTSD may not account for the needs of those without them.

Communication around diagnosis also affected self-concept. Participants reported medical coercion to accept the EUPD label and failure to adequately explain and, in two cases, inform them of their diagnosis. Participants linked professional reluctance to discuss the diagnosis with self-stigma, shame and alienation. Similar findings in relation to coercion to accept labels (Ociskova et al., 2017) and failure to communicate the diagnosis have been reported elsewhere (Castillo et al., 2001; Fallon, 2003; Francis et al., 2010). It was notable that, whilst participants were critical of the ethical and communication practices of psychiatrists, their descriptions of more overtly abusive practices related to nurses. Although our data did not reveal the reason for this, it is possible that the less time-bounded nature of relationships between nurses and service users contributes to more frequent and intense conflict and, thereby, reduces nurses’ capacity for self-regulation.

Negative professional attitudes to EUPD have persisted over time and across cultures (Dickens et al., 2016). Our study further confirms these findings and there remains a need to change professional attitudes and the cultures that maintain them. Novel findings of our study related to service user perceptions of changes in risk management practices in in-patient mental health settings. First, they described treatment from inpatient services and professionals as being, almost, solely, focused on minimising the duration of admission. Often, they perceived, discharges were recommended when risk of suicide had not been sufficiently reduced. It is possible that the UK’s NICE guidelines recommending that alternatives to inpatient admissions for EUPD should be sought (NICE, 2009), may have resulted in more rejecting staff attitudes and experiences when an inpatient admission is necessary. If this is an accurate reflection of the changing circumstances in in-patient settings, then, because EUPD is characterised by extreme sensitivity to rejection and fear of abandonment (Whewell et al., 2000), there is a risk that mental health services may be inadvertently re-enacting this population’s trauma in a rather systematic and precise way.

The second perceived practice change participants observed related to the management of self-harm, and they perceived an increased tendency among staff to trivialise and ignore self-harm. The need for inpatient services to move from approaches to self-harm based on removal of means to recovery-oriented, relational approaches has been proposed (Morrissey et al., 2018) on the basis that prevention-only approaches fail to address the need self-harm meets, intensify the need to self-harm, and increase the severity of self-harm when the opportunity arises (Murphy et al., 2019). Our findings indicate a potential risk that this change of philosophy could have been interpreted, at ground level, as a justification for trivialising or ignoring self-harm. If these perceptions are an accurate reflection of changes in practices in in-patient settings, then responding to self-harm in this way may risk (a) failing to address the communicative function of self-harm (McCallister, 2003), (b) exacerbating feelings of worthlessness and rejection, and (c) putting patients at increased risk of serious injury and death.

Participants identified relationships that were entered into voluntarily and were authentically loving, as the key positive mediator in the relationship between EUPD diagnosis and self-concept. Similar, relational theories of trauma recovery have been previously proposed (Saakvitne, 2017). Reflecting on relationships meeting these two criteria, relatives and healthcare professionals could not meet the standard of voluntariness and neither could healthcare professionals. Given EUPD makes people sensitive to others’ motives (Lévay et al., 2021), that healthcare professionals are paid to care is, intuitively, an obstacle to the relationships participants identified as therapeutic. A more temperate policy and practice aspiration should be to reduce the frequency of abuse and neglect of EUPD patients in mental health services, perceived as endemic by participants in this study.

In conclusion, our findings indicate the negative impact of EUPD diagnosis on self-concept may be mitigated by: addressing the proliferation of hateful, online content targeted at people with an EUPD diagnosis; revisiting the helpfulness of the personality disorder label; improving medical communication around diagnosis and improving mental health staff attitudes. Paradoxical impacts of the NICE guidelines promoting alternatives to inpatient admissions for people with EUPD and “recovery-focused” approaches to self-harm and their implications for self-concept in EUPD, are important areas for further research.

Strengths and limitations

One of the key strengths of the study was that it was led by a researcher with lived experience of receiving and living with an EUPD diagnosis. Whilst, for reasons outlined in the reflexivity section, this could also be seen as a limitation, it is likely (from participant responses) that this increased the willingness of participants to take part and increased the richness of their responses through enhanced trust in the researcher and less potential for feeling judged.

Although we took measures to ensure we obtained a theoretically sufficient account of the impact of EUPD/BPD diagnosis on self-concept, owing to limited resources available for the study, we were unable to achieve the level of diversity within our sample that would allow claims of theoretical saturation. For example, only two male participants were recruited and, whilst no obvious differences in experiences were observed, this does not mean differences do not exist. No participants from Black British backgrounds, and no participants older than 43 were recruited. There was also high level of comorbidities within the sample, but this may be characteristic of the EUPD population (Biskin & Paris, 2013).

Acknowledgements

The authors would like to thank all the service users who freely gave their time to discuss these difficult experiences and Cat Papastavrou Brooks and Professor Christine Rogers for their support and guidance throughout the project.

Disclosure statement

None to declare.