Personality disorder: no longer a diagnosis?

Abstract

Purpose

The purpose of this paper is to explore the historic policy context and social implications of the diagnosis of personality disorder and also consider formulation-based and trauma-informed understandings of distress.

Design/methodology/approach

Ongoing changes to (and splits between) medical understandings of what is being labelled as personality disorder have eroded the label’s cultural capital, adding weight to lived-experience-led calls to Drop the Disorder (Watson, 2019). This paper explores the impact and implications of the historic policy and practice context through a lived experience lens.

Findings

Such diversity of views in the lived experience and medical communities on personality disorder has allowed alternatives to diagnostically informed understandings of distress (such as formulation-based and trauma-informed approaches) to gain traction with practitioners (Bloom and Farragher, 2013; Johnstone and Boyle, 2020). The broader assimilation of these alternative perspectives into dominant medical ideology is evidenced by the fact that the Royal College of Psychiatrists (RCP) is now also exploring alternatives to diagnosis (2023). This suggests even more change ahead for how we understand people and their relationships with trauma and distress.

Research limitations/implications

This paper discusses UK policy and does not include broader global policies.

Practical implications

This paper would be helpful for any student interested in where the ideas that underpin personality disorder diagnosis stemmed from and why so many lived experience practitioners and experts by profession question the diagnosis' legitimacy.

Social implications

As the RCP is now considering alternatives to diagnosis, it is even more critical that practitioners are aware of the competing narratives surrounding this contested diagnosis – as the author believes this will promote more compassionate, trauma-informed working practices.

Originality/value

This is the author’s own work and includes not only the RCP position change but also directly quotes Professor Tyrer (who wrote the International Classification of Diseases 11), giving his views on the changed RCP position, as he recently presented at a conference here in Cornwall. The author is a part of Lighthouse peer support group and wrote this paper as preparation for a Participatory Action Research project they are planning, where they will evaluate the Sanctuary Approach with their membership to create a lived experience-designed trauma-informed charter. Before starting that work, the author wanted to better understand the historic policy context and created this paper to fill that need.

Citation

Temple, P. (2023), "Personality disorder: no longer a diagnosis?", Mental Health Review Journal, Vol. 28 No. 4, pp. 376-385. https://doi.org/10.1108/MHRJ-03-2023-0014

Background: It is now 20 years since the National Institute for Mental Health England (NIMHE) called for personality disorder to become No Longer a Diagnosis of Exclusion (2003). Much has since been written on the validity and usefulness of this diagnosis (Lamb, 2018; Watson, 2019, Royal College of Psychiatrists [RCP] 2020, 2023). Most recently, in February this year, the RCP announced that it will consider alternatives to personality disorder for the first time (2023). Almost 20 years after publication of No Longer a Diagnosis of Exclusion, personality disorder could soon become – no longer a diagnosis – at all.

The news has personal appeal. I have lived experience of managing big feelings in ways that do not always bring me happiness; and equally of being treated by and now working in a psychiatric system that has not always been kind. People like us are commonly said to share experiences of stigma associated with being labelled “as” personality disordered (Lamb, 2018). But we can call that stigma what it is: prejudice and discrimination.

Before receiving this diagnosis, I was a journalist. Afterwards, my experience as a researcher allowed unavoidably personal engagement with published literature and ongoing policy discussions around what it meant/means to be labelled with personality disorder. I capitalised this interest to become a mental health nurse. And it has since been a delight to design Lighthouse, a peer support service for Cornwall, which draws on our teams’ personal and professional understandings of distress.

Peer support services have potential to move conversations further away from medical ideas of “treatment” and towards valuing the storying of experience and connection, while taking account of bio-psycho-and social domains that contribute to our sense of self and wellness. This reflects a broader “on the ground” move by individual practitioners to step away from paternalism and into relationship, contributing to a more seismic shift in practise (variously described as values-based practice, adopting formulation and/or becoming trauma informed). This paper tries to support such considerations of change, applying a lived experience lens to the history of personality disorder diagnosis.

Aim: Below I will set out what I have learnt, questioned and (less frequently) concluded, around embodying and working with others who share experiences labelled as personality disorder. This is achieved by exploring the historic policy context and social implications of the diagnosis, with equal consideration given to formulation-based and trauma-informed understandings of distress. In this, the paper pulls together what I feel our peer support workers (and wider world) might helpfully be aware of in terms of our shared history, in relation to the politics and power of personality disorder diagnosis.

The article adds to a long running conversation around the ongoing validity, utility and meaningfulness of the diagnosis. It is necessitated (in my view) by every revision of the diagnostic classification systems. Each of these revisions changes the parameters of what it means (on paper at least) to have a personality disorder (and yet we are still ourselves). In my view, such changeability means the diagnosis can only be viewed as a social construct. In other words, it is man-made. This understanding opens the door to choice and change – in meaning and in language – even if only in our own practise. The discussion is timely because the classification system used in the UK has recently been reviewed and what it means to have a personality disorder has been changed again.

Discussion: Ongoing changes to (and splits between) medical understandings of what is being labelled as personality disorder have eroded the label’s cultural capital, adding weight to lived-experience-led calls to Drop the Disorder (Watson, 2019).

Conclusion and implications for practice: Diversity of views in the lived experience and medical communities on personality disorder has allowed alternatives to diagnostically informed understandings of distress (such as formulation-based and trauma-informed approaches) to gain traction with practitioners (Bloom and Farragher, 2013; Johnstone and Boyle, 2020). The broader assimilation of these alternative perspectives into dominant medical ideology is evidenced by the RCP now also exploring alternatives to diagnosis (2023). This suggests even more change ahead for how we understand people and their relationships with trauma and distress.

Personality disorder as a social construct

Personality is hardly a new concept, “The word ‘personality’ comes from the medieval Latin persona, which, broadly, means a mask. The term represents how individuals present themselves to the world. [But] The use of the term in everyday English is relatively new, popularised in a 1937 book entitled Personality: A Psychological Interpretation by the American psychologist Gordon Allport (1897–1967)” (Macaskill, 2015). The term personality disorder though, entered the lexicon via the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association (Trestman, 2014). The UK adopted the language of personality disorder shortly after the USA, via the International Classification of Diseases (ICD) framework, and both have stuck with (variations of it) since (Pickersgill, 2014).

For approximately 50 years, by virtue of personality disorder being featured in what some refer to as both “big books of bad names”, a person’s sense of self and their “adaptive modes of being in the world” could be labelled as disordered, for which there was no official treatment or cure in the UK until 2007 (p. 126, Simon, 2000; Pickersgill, 2014). There is an argument that this lack of available treatment made the labelling process, or the personality disorder diagnosis itself, iatrogenic, harm disguised as help (Johnstone and Boyle, 2020).

Further, what professionals agree they are labelling when they use the diagnosis “personality disorder” has changed dramatically over time, which has also impacted the diagnosis’ validity (Simon, 2000; Pickersgill, 2014). Indeed, there has been so much change in what professionals agree they mean when using the term personality disorder, that the diagnosis can be argued to have a chronically unstable sense of self. This is an accusation more often levelled at the people it labels. But this multiplicity supports a relativist position.

Starkly contrasting perspectives (not all of which are represented herein) continue to disagree on what is being labelled as personality disorder – and if the disorder language is helpful or harmful (National Institute for Mental Health in England, N.I.M.H.E, 2003, 2004; Bloom and Farragher, 2013; RCP, 2020, 2023; Lamb, 2018; Watson, 2019; Johnstone and Boyle, 2020). The differing ideologies around personality disorder can only be explained by a relativist position, where meaning can be multiple and transitory. (Diagnosis more typically sits within an absolute or realist position.) But Pickersgill contends that personality disorder is instead: “a plastic rather than obdurate concept”, (p. 30 2014). His way of seeing the world allows for the progression or evolution of meaning that personality disorder has endured – making it a social construct. This means it is defined by beliefs relative to your personal perspectives on (and alignments with or against) the themes discussed herein: diagnosis, formulation and trauma.

Unstable sense of self – who does this belong to?

It was argued above that the validity of the label of personality disorder as an absolute or realist signifier has been eroded by change after change to what it is thought to describe. This is evidenced by personality disorder becoming treatable within the past 20 years (National Institute for Mental Health in England, N.I.M.H.E, 2003, 2004) and further by the recent removal of the clusters of paranoid, antisocial and avoidant types, which we saw in the ICD 10 (World Health Organisation, 2008). Indeed, when it came time to write the ICD 11, authors continued to resist survivor calls for sweeping reform, but did remove the clusters; instead, they now describe personality disorder as a continuum of mild, moderate or severe, with or without borderline tendencies (Watson, 2019; WHO, 2019).

Speaking at a conference earlier this year, Tyrer, the primary author of the ICD 11 and the National Institute of Clinical Excellence guideline for personality disorder, suggested he saw limited benefit in the RCP’s decision to ask for lived experience input into alternatives to diagnosis and hinted at a potential future where “payment by diagnosis would penalise removing personality disorder, as there will be no funding for unlabelled patient populations” (Tyrer, 2023; RCP, 2023).

It is, however, more common to see evidence of healthcare policy moving towards improvements in Compassion in Practice (Cummings, 2013). The requirement for care and quality improvement initiatives clearly predates both Winterbourne View and the Francis Report (Department of Health 2012, Francis, 2013). Negative and stigmatising views of personality disorder typified 1980s and 1990s healthcare – and they persist today (National Institute for Mental Health in England, N.I.M.H.E, 2003, 2004; RCP 2020).

The normative perceptions of people with this label amongst health-care professionals were encapsulated by the 1988 paper: “Personality Disorder: The Patients Psychiatrists Dislike”, which claimed that people were being described – by the people responsible for their care – as: “manipulative, attention-seeking, annoying […] more difficult and less deserving of care compared with control subjects” (p. 44, Lewis and Appleby, 1988). Psychiatrist vernacular evolved further along these lines. Informally, doctors used the (as noted, now obsolete) ICD 10 personality disorder clusters to bracket people as “mad, sad or bad” (p. 1, Pesqueda, 2021).

Potentially as means to address the isolating effects of such “stigma” (a term some seek to replace with discrimination and prejudice, as these words better describe being done to, whereas stigma is a mark borne by the individual), survivors increasingly organised and mobilised, using the tools of protest and co-produced research to create informal networks and formal associations. These included the British and Irish Group for the Study of Personality Disorder (BIGSPD) (Pickersgill, 2014). This group formed in 2000 and continues to lead in the arena of co-produced research.

At a similar time, in 2002, a group of service users from Borderline UK (which later became Emergence) started working on designing what were the first co-produced national documents with the Department of Health (equally shared between “experts by profession” and “experts by experience”). This project became the (broadly trauma-informed) Knowledge and Understanding Framework Training.

Policy and legislation

A timeline of key milestones in the history of personality disorder diagnosis can be seen in the Appendix. Critically though, it is now 20 years since the then newly formed NIMHE released No Longer a Diagnosis of Exclusion (2003). This proposed new mental health legislation that offered an answer to: “the systemic failings of statutory services to meet the needs of those given a diagnosis of personality disorder” (p. 2 RCP 2020). The following year, a capabilities framework was released. Breaking the cycle of rejection describes the central issue as: “people with personality disorder very frequently become revolving door patients, attempting to obtain help from a wide range of community services that are often unable and/or unwilling to provide it” (p. 7, National Institute for Mental Health in England, N.I.M.H.E, 2004). The NIMHE said staff lacked knowledge and skills and prescribed education for attitudes. (Knowledge and Understanding Framework Training was co-produced to resolve this deficit.)

But it remains unclear as to what degree the changes heralded by the NIMHE, regarding how treatable personality disorder was to be considered in law, were motivated by an evidence base that could, by 2007, clearly demonstrate that people can and do recover from trauma. This evidence had been building since the 1980s, specifically around the work of Linehan’s DBT (Linehan, 2017), but also around Bateman and Fonagy (2004) mentalisation and Ryle’s CAT (Ryle, 2020) – increasingly, other evidence based therapies are available.

Of all the acronyms, DBT has arguably contributed most to making personality treatable. This is because it is a specific, replicable model. Practitioners combined rigorous early outcoming with publication of data, which can be argued to have validated – and thus reinforced – medical understandings of how we might measure “effective” treatments of distress. This could equally have impacted the speed of traction for programmes with less homogonous/evidencable implementation strategies, such as relational or peer support programmes.

Indeed, a less equanimous reading of the 2007 Mental Health Act amendments is that they were driven by desire for control, through legalising the compulsion of treatment and detention of people with this label (Pickersgill, 2014). Recognition by the National Institute of Clinical Excellence guidance served to further entrench the label(s) of personality disorder in the UK. But, by making personality treatable, they also made it punishable. Indeed, despite the NIMHE outwardly pushing for reform through staff education in its 2003 and 2004 publications, these documents both have a subtext that reflects the cultural temperature in public conversations around mental health at the time; they focussed on treatability and risk, compulsion and control (which DBT is more recently linked to via the now [legally] contested model of care, the Serenity Integrated Mentoring programme, which inhumanely applied DBT principles to criminalise people deemed to over-use services) (Pickersgill, 2014; STOPSIM, 2022).

Dissenting voices have, thus, become increasingly united in protest against the diagnosis of personality disorder, producing the Consensus Statement in 2018 (Lamb, 2018). This paper brought together stakeholder views from across the health sector – and all called for improvements in the way society treats people labelled with personality disorder, which they felt could be actualised through removal of the stigmatising label. Summarising the historical critique set out above, the Consensus Statement claimed this diagnosis is: “misleading […] and masks the nature of the problem it is supposed to address, adding to the challenges which people experience” (p. 4, Lamb, 2018).

Increasingly ubiquitous attacks on the legitimacy of personality disorder diagnosis are gaining traction with policymakers and specialist services. The latter seek to display allyship locally by rebranding themselves as a “complex emotional difficulties service”. Formally moving the conversation forward, The NHS Long Term Plan was the first policy document to reference trauma-informed approaches as a possible solution to the growing distrust between the helped and helper (Department of Health, 2019).

But not all quarters are receptive to change. In response to the 2018 Consensus Statement, the RCP released a parrying Position Statement in 2019, in which it stated a concrete pro personality disorder diagnosis position. This 2019 RCP Positioning Statement could be described as an enactment of a parallel process, where the machine raged back. As yet still unwilling to give up (the power of?) diagnosis, despite also acknowledging its dangers, the RCP wrote: “Our conclusions acknowledge the argument that there is the potential for a diagnosis to cause harm, particularly if this is done in a way that lacks appropriate dialogue. However, on balance, we believe that the diagnosis [personality disorder] has brought benefits of better describing the impact of such difficulties on people’s health and social outcomes” (p. 2, RCP 2020).

This is in stark contrast to the RCP’s position in 2023, when it asked for lived experience input to: “review the impact of the diagnostic label(s) of personality disorder […] and consider alternatives” (n.p. RCP 2023). This profound shift in stance could have an enormous impact on how medical professionals describe and label trauma responses in the future.

Indeed, by 2020, NHS websites had started explicitly stating a link between trauma and the experiences and responses common to people with this label. The causes of personality disorder are now cited as a combination of the biological “genes a person inherits” and psychological and social “early environmental influences – for example, a distressing childhood experience (such as abuse or neglect)” (p. 1, NHS England, 2020).

Formulation and adverse childhood experiences (ACEs)

In defiance of and coexistence with the RCP, or diagnosis, there has been an increasingly democratised use of formulation by mental health professionals at all levels of service (Johnstone and Boyle, 2020). This moves the conversation beyond its previous confines of mental “disorder” versus mental “illness”. In 2018, Kendel suggested that the illness/disorder dialectic maps to whether we believe personality can become a difficulty of the mind (broadly: a disorder, your fault; you do not deserve care/compassion) or of the brain (broadly: an illness, not your fault; you do deserve care/compassion). Today, “historical reasons for regarding personality disorders as fundamentally different from mental illnesses are being undermined by both clinical and genetic evidence” (p. 110, Kendel 2018). Much of this can be attributed to the growing knowledge base around the impacts of trauma (particularly early trauma) on long-term physical and mental health outcomes (Felitti et al., 1988).

Perception of fault is key to this discussion. In 2013, a systematic review estimated that “half of those in the mental health system had experienced physical abuse (range 25%–72%) and more than one-third had experienced sexual abuse (range 24%–49%) in childhood or adulthood, significantly higher than in the general population” (p. 176, Mauritz et al., 2013).

Understanding the long-term impacts of trauma

One of the first researchers to explore this link between trauma, health and social outcomes was Vincent Felitti. He was initially conducting an obesity study that explored why people regained weight after they had lost it (and, yes, it was the trauma). His ACEs study in America was one of the largest investigations of its type ever undertaken (Felitti, 1998). It found that: “childhood trauma is far more common than had been acknowledged […]. Stressful or traumatic childhood experiences have a strong relationship to an increased risk of chronic disease, social and behavioural health problems throughout the lifespan, and even premature mortality” (p. 3, Davis and Maul, 2015). As learning from the ACE study permeates the collective consciousness, the plastic concept of personality disorder evolves in an ever more compassionate direction (Pickersgill, 2014).

Perhaps as a result of developing understanding of both the prevalence of trauma exposure, and the role this plays in health outcomes, formulation is increasingly used to story peoples’ experiences (Bloom and Farragher, 2013). Indeed, at its most pure, Jonhstone and Boyle suggest that trauma-informed formulation avoids diagnostic labelling altogether, as it is reductive (2020).

In practice though, formulation and diagnosis are more often used simultaneously by staff (sometimes including doctors) to describe and understand the people served by the community and specialist mental health teams I have worked in. If you are with a psychologist for any length of time, you will hear the phrase “both, and […]”. What we have currently, with formulation sitting alongside interpretations of the labelling and classification system on the ground, is both, and. This could be argued to be a transference of the multiple self states that Ryle talks about and equally could suit a group of people with varying opinions on the validity of labelling (2020).

Regardless, the above clearly shows a clear departure from where personality disorder started, with medical professionals critically telling people what was wrong with them. Instead, there is a groundswell of support asking for a less judgmental and more validating question: “what happened to you?” (Lamb, 2018). Adopting this formulation based approach marks the beginning of a journey towards becoming trauma informed (Johnstone and Boyle, 2020). And although evidence suggests that the tide is turning against diagnostically aligned understandings of difficulty, it sure does turn slow. The above-described shifts in thinking around who gets to decide on the legitimacy of personality disorder diagnosis (or trauma) started almost 30 years ago. As far back as 1988, Lewis and Appleby were suggesting: “PD […] appears to be an enduring pejorative judgement, rather than a clinical diagnosis […]. It is proposed that the concept be abandoned” (p. 44). This was long before these discussions became amplified by activists like Johnstone, Watson and the passionate collectives of Drop the Disorder and contributors to the Consensus Statement.

But, until the 2023 RCP statement, it seemed that the growing consensus of calls for change had stalled in their efforts. Competing factions had doubled down in increasingly concrete and opposing positions (Lamb, 2018; RCP, 2019). Yet deciding who gets to choose the language that describes, and the systems that treat these difficulties, has never been more topical.

On what remains a battlefield of contradictory and conflicting ideology, almost the only agreeables are that we can expect people with this diagnosis to have had distressing experiences, which likely started in childhood and were exacerbated in later relationships with services; because medical professionals have either described the effects of these (likely traumatic) experiences as untreatable; or have treated them only after labelling the person who experienced them with a prejudicial and discriminatory, blaming and shaming diagnosis. Indeed, personality disorder diagnosis appears consistent in history only in that it elicits poor care.

Hope is a persistent thing though. The existence of my role as a band seven lived experience lead suggests that the transformation of mental health services is valuing new voices. Our service was designed by the peer team and the members who attend our groups, which do not have edges people can fall off. You can come whenever you want, as long as you want, regardless of if you are managing with drugs or alcohol and if you are homeless or hurting yourself to cope. There is no referral form (we ask for phone numbers, so we can personally invite people along) and no discharge.

Meanwhile, at the beginning of your journey, in GP offices, formulation-based conversations are being normalised here; and more mental health nurses are employed in primary care. Early mapping of childhood ACEs is becoming commonplace across all services, and better understandings of trauma impact is permeating. Thus, culture and environment are moving away from retraumatising language, behaviours and treatments of personality disorder diagnoses – largely because individuals are moving away from them (this is how change happens: the local becomes global).

As stated, change is also slow though. I recently asked a member of the RCP if their calls to hear lived experience voices would mean an end for personality disorder diagnosis. He said categorically not, as the new ICD 11 uses personality disorder language, which will keep us wedded to a diagnostic understanding of distress for at least the next 20 years. I laughed and asked, “so we think you hold the power, and you think the ICD people hold the power?” In the spirit of calling in, rather than calling out (which was beautifully modelled at BIGSPD this year), he replied that he thought: “we all have a little bit of power”. Isn’t that a strong reflection?

Submitted by Lighthouse peer support group, because: “Until the lions have historians, tales of the hunt will always glorify the hunter” (Nigerian proverb, n.d).

Appendix. Timeline