Diagnosing borderline personality disorder: Reports and recommendations from people with lived experience

Abstract

Borderline personality disorder (BPD) is a severe mental health condition marked by impairments in self and interpersonal functioning. Stigma from health staff may often result in a reluctance to diagnose, impacting recovery trajectories. Qualitative interviews were conducted with participants (N = 15; M Age = 36.4 years, SD = 7.5; 93.3% female) with lived experience of BPD exploring topics of illness onset, insight, experience of diagnosis and treatment. Qualitative responses were analysed within a co‐design framework with a member of the research team who identifies as having a lived experience of BPD. On average, participant symptoms emerged at 12.1 years of age (SD = 6.6 years, range 1.5–27), but diagnoses of BPD were delayed until 30.2 years (SD = 7.8 years, range 18–44) resulting in a ‘diagnosis gap’ of 18.1 years (SD = 9.6 years, range 3–30). Participant explanations for BPD emergence varied from biological, psychological and social factors. Benefits of diagnosis (e.g., fostering insight, aiding treatment planning and reducing isolation) were contrasted with challenges (e.g., stigma and treatment unavailability). Delay in diagnosis was common, and no participants reported receiving a diagnosis of BPD during their adolescence yet 85% felt they would have benefited from a diagnosis in adolescence. Only a quarter (27%) felt highly supported in the diagnostic process. An ideal four‐step diagnosis procedure was outlined based on recommendations from participants with a lived experience; this involved the following: (1) explain the process, (2) assess thoroughly, (3) explore how the features are active in everyday life and (4) link diagnosis to evidence‐based treatment planning.

Understanding Broader Community Perspectives on the Scientific Accuracy and Stigma of Personality Trait Labels

“…Cano and Sharp's (2023) assessment of diagnostic model perceptions across undergraduate and clinical/community samples identified both potential benefits and challenges of using dimensionally-based models for communicating clinical information with patients. Other research on clinical communication indicates that individuals who have received a borderline PD diagnosis often describe that providers fail to clearly communicate evidenced-based treatment options and the meaning of a PD diagnosis (Lester et al, 2020;Tedesco et al, 2023). Furthermore, Masland et al (2023) provide recommendations for addressing borderline PD stigma, including guidelines for engaging livedexperience perspectives that could be used to build upon the illustrative studies reviewed.…”

“…However, questions concerning broader community perceptions of terminology remain largely unanswered, which is surprising in some ways given the widespread use of different terms and recent terminology proposals. Recognizing that lived and personal experiences may also shape researchers' viewpoints (Haywood et al, 2023;Tedesco et al, 2023), assessing community members' perspectives, including individuals with a PD diagnosis, provides data toward refining construct description in PD research.…”

How negative self-views may interfere with building positive relationships: An experimental analogue of identity dysfunction in borderline personality disorder

“…For identity development, adolescence as well as early adulthood are important life phases [ 49 , 50 ]. Moreover, the onset and development of BPD is commonly reported to be in adolescence and early adulthood [ 51 , 52 ]. We therefore aimed to recruit participants in these life phases.…”