Stigma has four parts (Link Reference Link and Phelan2001): first, individual differences are identified and labelled; second, these differences are considered negative by society; third, labelled individuals or groups are considered different; finally, these individuals or groups experience significant status loss (in areas such as opportunity) and discrimination.
Self-stigmatisation and structural stigma in BPD
Significant stigma is associated with borderline personality disorder (BPD). In the general population, the negative perceptions associated with those with a diagnosis of BPD often manifest in labels such as ‘attention-seeking’, ‘manipulative’ and ‘untreatable’: these labels lead to self-stigmatisation, social exclusion and deterioration of symptoms and they form barriers to appropriate care and treatment.
Stigma and discrimination can also come from ‘structural stigma’, i.e. policy and practices that disadvantage specific groups in the population. This can occur in areas such as healthcare, employment, education and culture. Therefore, implementation of practices and delivery of services can reinforce stigma and discrimination, with structural stigma woven into the fabric of care in health systems. This is particularly evident in BPD compared with other mental illnesses. A qualitative study (van Schie Reference van Schie, Matthews and Marceau2024) explored the language used around BPD both within and outside of healthcare settings and the impact that it had on patients and their carers. All participants disclosed experience of stigmatising language, including ‘psycho’ and ‘can’t be helped’. Further, behaviours that invalidate the individual’s needs, such as being ignored or given generic advice of how to manage their signs and symptoms of BPD, were identified. Appropriate assessment and treatment, if administered contemporaneously, could potentially save lives and improve long-term outcomes.
Some argue that BPD as a diagnostic construct is invalid and unnecessary, and that the associated pejorative connotations potentially cause further harm and negatively affect the development of appropriate treatment. Others argue that BPD should be named and treated as early as possible. Yet, clinicians are often less likely to engage in an encouraging manner with those with a BPD diagnosis, which can result in imposing lengthy hospital stays or, conversely, avoiding treating those with BPD altogether.
Late diagnosis and perpetuation of stigma in BPD
Stigma and discrimination play major roles in early diagnosis of BPD, or lack thereof, perpetuating the cycle of negativity. A systematic review and qualitative meta-synthesis (Stiles Reference Stiles, Batchelor and Gumley2023) found resistance on the part of clinicians, such as withholding information, to be a key theme. National Institute for Health and Care Excellence (NICE) guidelines highlight that BPD is often not diagnosed nor treated until the age of 18 (NICE 2009), but research has identified that symptoms can present much earlier (Newton-Howes Reference Newton-Howes, Clark and Chanen2015; Chanen Reference Chanen, Nicol and Betts2020). BPD is common in young people, with an estimated prevalence of 1–3% in the community, 11–22% in psychiatric out-patients and 33–49% in in-patients (Chanen Reference Chanen, Sharp and Hoffman2017). Yet, clinicians are hesitant to diagnose BPD in adolescents. Given the strong associations between early developmental and childhood attachment styles, adverse childhood experiences (ACEs), potential genetic influences, psychosocial factors and familial impact outlined in BPD theories, it would seem pertinent to intervene early. However, only in the past two decades has the potential of a diagnosis in adolescents been recognised.
BPD or typical teenage trajectory?
Clinicians and the general population argue that BPD can be misdiagnosed in adolescence, as symptoms can emulate expected developmental processes such as mood changes due to organic hormonal fluctuations, thus incorrectly labelling a young person with a complex illness. DSM-5 criteria stipulate that symptoms be pervasive, have lasted for at least 1 year and have a significant impact on functioning (American Psychiatric Association 2013). Often, these criteria are ignored. Misconceptions regarding BPD and a gap in knowledge add to the possibility that interactions with healthcare systems will cause harm to some of the most vulnerable. This perpetuates the problem; giving an incorrect diagnosis or brushing off chronic symptoms as ‘normal teen angst’ can be very damaging and forms a barrier between the young person and service providers. Individualised assessment and treatment of BPD are imperative to achieve good clinical outcomes, and therefore tackling stigma and discrimination is essential.
Age-related discrimination
Adolescents experience significantly more stigma than adults when it comes to mental illness; further, adolescents with BPD experience an even higher level of stigma. A qualitative study (Tedesco Reference Tedesco, Day and Lucas2024) of individuals with BPD focusing specifically on illness onset and experience of diagnosis and treatment highlighted that the mean age at diagnosis was 30.2 years, yet 85% of participants felt that a diagnosis in adolescence would have been beneficial; only 27% felt well supported when receiving the diagnosis, indicating that a diagnosis did not necessarily open many doors in terms of appropriate treatment. Another qualitative study explored how clinicians perceive and use the BPD diagnosis in child and adolescent mental health services (CAMHS) in England (Papadopoullos Reference Papadopoullos, Fisher and Leddy2022). The overall reflections of the 13 participating clinicians revealed unease in terms of working with BPD patients and giving a diagnosis.
Practical suggestions for including patients’ experience in clinical practice
Evidently, much more research is required into the nature and phenomenology of stigma and discrimination in BPD. There is scope here for all to work towards tackling and reducing the associated negative connotations, thus supporting individuals to seek care and receive bespoke treatment plans.
Qualitative research, particularly if focusing on people with lived experience of BPD, could better inform, educate and influence training for mental health professionals, allowing for a better therapeutic relationship to be formed. Collaboration between experts by experience and clinicians is imperative in all areas, including research design, to achieve a better understanding of the impact of structural stigma on opportunities for those with BPD and where use of language can be reviewed. Conversations, active listening and more engagement with patients would allow researchers and clinicians to build meaningful, therapeutic relationships and enhance their knowledge and understanding of BPD and how it manifests in unique ways. Further, collaboration with third-sector organisations might create a bridge to connect in non-confrontational ways, since a neutral party can encourage sensitivity and anti-stigma behaviours.
DSM-5 (American Psychiatric Association 2013) and ICD-11 (World Health Organization 2019) introduced improvements to their diagnostic frameworks that allow for the person behind the diagnosis to be considered rather than a label more closely related to disease, thus appearing more empathetic and in turn attempting to reduce stigma.
BOX 1 Understanding stigma first-hand
‘With experience of receiving a borderline personality disorder (BPD) diagnosis at age 32, I am familiar with the impact of late diagnosis and experiences of stigma and discrimination. During a long journey to my referral being accepted by services, none of the many general practitioners, psychiatrists and mental health nurses I encountered even considered BPD. Only when my long-term psychiatrist left and I was able to fully discuss my feelings, behaviours and emotions with a locum psychiatrist was a BPD diagnosis agreed, following my suggestion. Yet stigma continued: I read books on BPD that finished with a warning about avoiding individuals with BPD. Treatment began and, fortunately, this opened doors in the form of dialectical behaviour therapy (DBT), psychotherapy and changes in my psychopharmacology, resulting in my journey to recovery (McAllister Reference McAllister2023).
It is clear from my experiences as both a mental health researcher and an individual with BPD that it was meaningful collaboration with a healthcare provider that led to my diagnosis. Although I had years of unnecessary suffering, I consider myself fortunate to have benefitted from my diagnosis. For many individuals this is not the case: many, especially young people, are met with the same barriers, stigma and discrimination that I experienced in the early days of my journey to diagnosis. This is a result of lack of education in both the general population and health professionals and of poor collaboration between mental health services and patients.’
(Kirsty Margaret Collins, an expert by experience researcher)
It is clear that collaboration is needed in tackling structural stigma and improving chances and outcomes. Such collaboration could reduce the suffering of many young people with BPD from an earlier stage in their diagnosis.
Author contributions
K.M.C. was responsible for the topic chosen for clinical reflection and for writing the original and final drafts. H.M. and R.G. contributed to reviewing and editing.
Funding
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Declaration of interest
None.
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