As readers of my previous contributions to the woodlands will know, I get vexed when we hear about people who have lived through traumatic experiences described as having a ‘personality disorder’. There is often a sense that this is necessary in order for people to be helped (despite the absence of any evidence that certain treatments will only be effective if a patient and their care team accept that the problems are arising from a disordered personality).
For years people who use services have told us about the harms that this diagnosis can bring, but they are often not believed (Quin L& E 2017: Recovery in the Bin 2016). The professionals who amplify their concerns are often seen as difficult or maverick in some way. The prevailing idea is that people who are suffering should be told they have disordered personalities because the benefits outweigh the harms. A recent paper told us the diagnosis of BPD in adolescents is no longer controversial (Falk et al 2024) and ICD-11 and the Royal College of Psychiatrists are keen for the diagnosis to be made in 14-year-olds (RCP 2020).
The idea that ‘Borderline Personality Disorde’r (BPD) has scientific validity is debated, but it is estimated 2% of the population of the UK could meet the criteria for the diagnosis. It is widely understood that three in four people given the diagnosis will be female, but variations between countries on the gender of those diagnosed further questions the validity of the diagnosis (Bozzatello, 2024).
BPD is the mental health diagnosis most associated with childhood trauma (Porter et al., 2019) with some studies showing 80% of those given the diagnosis having lived through abuse. If we look just at people in an inpatient setting, who have been told they have BPD, that figure goes above 90% (Zanarini et al., 1997).
The aim of this study was to explore the narratives around “BPD”. There was an effort to discover how people were talked about and consider what effect those narratives had on care (or the lack of). The results made this elf cry….
The prevailing idea is that people who are suffering should be told they have disordered personalities because the benefits outweigh the harms.
Methods
This is the bit this elf is worst at, but let’s have a go. There were people with lived experience advising the research team. While elements of the study were influenced by people with lived experience, they don’t seem to have been part of the core team.
Interviews were completed with 24 people who had some association with the diagnosis of BPD. Three interviewees were men, 17 women and 4 gender fluid/non-binary. Ages were 22-63, 11 heterosexual, 13 sexually diverse, four had been diagnosed over ten years ago. They were recruited online and via local services and all resided in Victoria, Australia.
There were also interviews with 21 health care professionals, but there was a big disparity between what people in specialist services said and what people in more acute services said. As a result the decision was made to only include nine people “working in short-term, acute, non-specialist settings such as EDs and in-patient units.” There were a range of professionals, aged 34-56, eight women and one man.
An iterative, thematic approach was initially used to interpret the data which involved authors reading transcripts, coding and identifying themes, which is a fairly standard practice for this type of qualitative study. However, the team took their analysis one step further with the first author then completing additional analysis on the transcripts using a structural and dialogical narrative analysis approach.
In essence, they looked at the results of the interviews, extrapolated some stories that are told in healthcare and commented on the impact of these stories. You can read more about the approach used in the main paper, but I’m going to suggest that as opposed to a run of the mill thematic analysis, the authors wanted to describe what was said, but also think about its meaning and its impact. Not so much they say this, but this is what happens as a result of them saying this.
Secondary analysis allowed for a deeper exploration of meaning.
Results
The authors broke their results down into three sections as follows:
1. Talking about BPD
This described how BPD was spoken about within the healthcare settings. Beginning with the shared sense that those “with BPD” will be challenging, difficult and likely to escalate. The authors reflect on how different narratives have different tellability, so while one story might be shared widely, a nurse unit manager referring to someone as “a bpd cunt” in a room full of staff that went unchallenged, might be a story that can’t be told outside of a particular setting.
It did seem ok for staff to tell carers that the person “with BPD” was attention-seeking and a recognition that when this terminology is part of the culture, staff assimilate into that culture.
The authors described a seeming sense of helplessness in clinical staff when working with people in emergency settings. What they could provide was limited and there was a frustration at a lack of alternative long-term support, which was described as being needed for some, but interestingly not all of the people presenting in emergency departments with this label.
However, people with lived experience were able to describe positive experiences in emergency settings when staff had been authentic and basically kind. The authors reflect that it is hard for this empathic narrative to compete with the “there’s nothing we can do for them” narrative that permeates clinicians.
2. Empathy burnout
Lived experience participants described how their care deteriorated once the diagnosis of BPD was applied to them. According to the authors: “it was apparent that for lived experience participants, a BPD diagnosis and other people’s awareness of this diagnosis through disclosure, medical notes or handover routines, had distinct effects on the treatment they received”. The individuals didn’t change, but the addition of three letters to their file changed the narrative around them in substantial ways.
The authors reflect on how narratives of its “all their fault and we can’t medicate them” erode empathy, but how the culture maintains these narratives, instilling it into students and trainees in their early placement experiences. They describe how health care practitioners are able to access different narratives in other environments, but that without this exposure there is no other way to think.
3. Boundary-making
When I hear “the PDs need boundaries” this often means staff have a firmly held belief that an absence of warmth and a rigid narrowing of what can be permitted is what quality care looks like.
The authors describe how because of a narrative of “it will be hard” then strict boundaries are needed. A human reaction to an artificial relationship becomes further pathology. Displays of emotion become ‘too much,’ articulate people become manipulative. Human warmth and kindness are replaced by strictness and a professional (cold?) exterior. With encounters like this, staff can then comfortably share how they will try to avoid this client group. While there is a fear that people can “jump to conclusions”, the narratives around this client group do not allow happy endings. The conclusions have to be about manipulative attention seekers who cannot be helped.
The findings suggest there were insidious and powerful narratives about people with a diagnosis of BPD circulating.
Conclusions
The authors conclude that particular stories are created in particular socio-cultural environments. These stories reflect not just how we think, but also what actions we take as a result. They see a need to disrupt narratives that mark people as difficult/manipulative/dangerous and offer alternative ways of understanding, in particular alternative narratives that exist outside of the acute care environment.
While the authors recommend different ways of understanding distress and using lived experience more in training problems, ceasing to tell people they have a disorder of their personality was not considered.
While the authors recommend different ways of understanding distress and using lived experience more in training problems, ceasing to tell people they have a disorder of their personality was not considered.
Strengths and limitations
Arguably, one of the difficulties of a thematic analysis is its subjectivity. It’s easy to find what you’re looking for and tailor your themes to meet your preferred outcomes. That said, the quotes used in the article were the quotes given to the researchers.
This research certainly tells us that some health care practitioners have heard some appalling ways of talking about people with a BPD diagnosis, and that people with a BPD diagnosis have had some awful experiences in the name of ‘care.’
The authors have taken the stories and linked these to the experiences of the people with lived experience. It is entirely plausible that because staff want to avoid contact with people who have a BPD diagnosis, the care they provide is diminished as a result. That isn’t proved in this paper.
What surprised me was that even in a paper with a lot of lived experience input, staff accounts were taken as true while lived experience accounts were what “they claimed to overhear in these health-care settings.”
This would have been a very different article if all the health professional contributions had been included. Instead, it is the data from nine interviews describing the acute care experience. I imagine if the authors had set out to focus on the acute care experience, the sample of professionals would have been higher.
It could be argued (the editor did!) that it is potentially unethical to collect data from a range of practitioners, but then ignore the views of at least half of the sample of practitioners when they do not fit your argument or theory.
This paper very starkly highlights what care environments can look like for people who seek acute care while having a BPD diagnosis. It also provides an argument that a reduction in empathy and warmth occurs as a result of the BPD label, rather than the actions of the person themselves.
Reading through the quotes where staff felt unable to help, I wonder if there was something missed about what help looks like and for who. There were narratives that identified that in the face of unrelenting distress from manipulative, attention-seeking people who couldn’t be helped, the ‘intervention’ seemed to be around helping staff by keeping those with a BPD diagnosis away, rather than helping the patient.
Tom Main (1957) wrote of how, when nurses were utterly overwhelmed by distress: “A sedative would now alter the situation and produce for her a patient who, if not dead, was at least quiet and inclined to lie down, and who would cease to worry her for the time being.”
Strict boundaries that do not allow for genuine human relationships, stitches without sedation, and an encouragement not to be present – these all seem designed to help staff manage their distress via the distressed patient being elsewhere.
This paper starkly highlights what care environments can look like for people who seek acute care while having a BPD diagnosis.
Implications for practice
If we accept the article’s conclusions, it raises serious questions about the value of a diagnosis that people feel leads to worse care; especially in the very places they turn to during their most distressing moments.
This is not the first blog here about BPD to omit reference to the possibility that the diagnosis may be doing more harm than good. In most cases an intervention that resulted in the quality of care deteriorating would be criticised. Instead, authors commonly consider how people can respond to the label of BPD better. While that might make sense for a diagnosis with considerable validity that is applied after vigorous assessment, many articles suggest that the diagnosis of BPD is a dumping ground for “The patients psychiatrists dislike” (Appleby 1988). With the Royal College of Psychiatrists expert reference group on the prejudice and stigma around ‘personality disorder’ due to feedback soon, it will be interesting to see their recommendations around the future use of this diagnosis and the harms that might arise.
Many of those who support the diagnosis of ‘Borderline Personality Disorder’ have chosen to work in that area and work in environments where there is a very compassionate understanding. This paper would suggest that outside of those areas, the BPD diagnosis enables different narratives that will be harmful to people who have been diagnosed. This would have implications for the cherished healthcare concept of ‘first do no harm’ and issues of informed consent for patients who are not told of the consequences of their new diagnosis. It might also challenge professionals who are content with how people are labelled in specialist services to look outside their area and consider the wider impact of a diagnosis.
When I worked in the CMHT “you can go to A&E” was a regular line in someone’s risk management plan. At times this was suggested as the last option for someone who desperately needed help in that moment. At other times, it meant that I had exhausted everything I had to offer, but that if needed, the patient could seek an opinion elsewhere. I was very aware of how little help would be available in A&E, but it was something to suggest that didn’t involve me. The advice to go to an acute care setting could be rethought in light of this paper.
An exposure to different narratives was the author’s solution to bringing about change. Not simply targeting overt stigma and discrimination, but exposing people to different stories. I’m fortunate enough to work with a consultant lived experience practitioner, Hollie Berrigan, whose presence is a constant challenge to systemic narratives around ‘recovery’, the need for rigid, immovable boundaries, and behaviour being inexplicable.
As a respected MDT member, she is able to introduce new narratives that mean patients can be understood in ways that are compassionate and empathic. Behaviour that infuriates becomes less personal. Actions that are baffling can be understood as logical ways of getting needs met.
While the authors advocate for lived experience in training, I’m convinced no one would have been using the term BPD C-U-N-T in a handover where people with lived experience, who hold power and responsibility in the organisation, are present.
Senior lived experience roles in healthcare organisations are an essential component of change.
Statement of interests
Keir is not neutral in this field and would happily end the practice of telling survivors of abuse that their personalities are disordered.
Links
Primary paper
Other references
Bozzatello P, Blua C, Brandellero D, Baldassarri L, Brasso C, Rocca P, Bellino S., 2024. Gender differences in borderline personality disorder: a narrative review. Front Psychiatry. Jan 12;15:1320546. https://recoveryinthebin.org/wp-content/uploads/2017/07/not-so-nice-full.pdf
Quinn. L & E., 2017. Not so NICE guidelines to BPD. https://recoveryin thebin.org/2017/07/06/not-so-nice-guide lines-to-bpd/
Lewis G, Appleby L. 1988. Personality disorder: the patients psychiatrists dislike. Br J Psychiatry, 153: 44–9. https://doi.org/10.1192/bjp.153.1.44
Main, T. F. 1957. The ailment. The British Journal of Medical Psychology, 30(3), 129–145. https://doi.org/10.1111/j.2044-8341.1957.tb01193.x
Recovery in the bin. 2016. A simple guide to avoid receiving a diagnosis of ‘Personality Disorder’ https://recoveryinthebin.org/a-simple-guide-to-avoid-receiving-a-diagnosis-of-personality-disorder/
Leichsenring F, Fonagy P, Heim N, Kernberg OF, Leweke F, Luyten P, Salzer S, Spitzer C, Steinert C. 2024. Borderline personality disorder: a comprehensive review of diagnosis and clinical presentation, etiology, treatment, and current controversies. World Psychiatry. Feb;23(1):4-25. https://pubmed.ncbi.nlm.nih.gov/38214629/
Royal College of Psychiatrists., 2020. PS01/20: Services for people diagnosed with personality disorder. https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/position-statements/ps01_20.pdf?sfvrsn=85af7fbc_2
Porter C, Palmier-Claus J, Branitsky A, Mansell W, Warwick H, Varese F. 2020. Childhood adversity and borderline personality disorder: a meta-analysis. Acta Psychiatr Scand.141(1):6-20. https://pubmed.ncbi.nlm.nih.gov/31630389/
Zanarini MC, Williams AA, Lewis RE, Reich RB, Vera SC, Marino MF, Levin A, Yong L, Frankenburg FR. 1997. Reported pathological childhood experiences associated with the development of borderline personality disorder. Am J Psychiatry. 141(1):6-20 https://pubmed.ncbi.nlm.nih.gov/9247396/
