‘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.