Stigma, Diagnosis, and Identity

This post is by Aneela Khan.

Unusual experiences

In a recent paper co-authored with Lisa Bortolotti, Andrew Fox, and Matthew Broome, forthcoming in Journal of Medicine and Philosophy, I explore how the stigma associated with a diagnosis of psychosis can result in epistemic injustice, wrongs done to someone specifically in their capacity as a knower. Drawing on findings from the Epistemic Injustice and Psychosis (EIP) study, I highlight how both testimonial and hermeneutical forms of epistemic injustice arise in clinical encounters and in people’s wider social worlds.

The study involved interviews with people diagnosed with schizophrenia spectrum disorders (clinical participants) and people who had unusual experiences without receiving a diagnosis (non-clinical participants). While both groups encountered stigma, it was only the clinical participants who experienced a significant loss of credibility and identity transformation as a result of being diagnosed. For many, the label of psychosis, often associated with stereotypes of dangerousness and incompetence, became a lens through which others interpreted their thoughts and behaviours, often overriding their own self-understandings.

Person having a religious experience

An example comes from two clinical participants, Anna and Zara. Both had experiences they initially interpreted through spiritual or religious frameworks. Anna felt guided by God, while Zara understood her voices as a punishment for her sins. In both cases, these meanings were overlooked or pathologised during their engagement with mental health services. Although both eventually found aspects of the medical model helpful, especially in accessing support, they also described feeling “funnelled” into a diagnostic identity that clashed with their personal beliefs and values.

I use the concept of epistemic injustice to make sense of these experiences. Testimonial injustice occurs when someone’s credibility is unfairly deflated, something that happens frequently to people with a diagnosis of psychosis. Hermeneutical injustice arises when individuals lack the social resources to make sense of what is happening to them, or when their interpretations are dismissed. This was particularly evident in how spiritual or cultural frameworks were marginalised in clinical settings.

Communication

Importantly, I found that non-clinical participants, those with unusual experiences but no diagnosis, were often able to make sense of what they were going through using personal, cultural or religious resources, and did not report the same harms to their credibility or sense of self. This comparison suggests that epistemic injustice is not caused by the experiences themselves, but by how they are framed and responded to by others.

I make several recommendations for clinical practice, including: 

• creating open epistemic spaces where patients can express alternative interpretations of their experiences, 
• supporting meaning-making; and 
• improving communication around diagnosis. 

By exploring the interplay between stigma, identity, relationships, and knowledge, we can contribute to  structural changes to reduce stigma and promote epistemic justice, not only in clinical settings, but also within families, communities, and wider society. 

Workshop report: Loneliness, Metaphor & Empathy

Last week, Project EPIC held a workshop at the University of Nottingham entitled 'Loneliness, Metaphor & Empathy'. This workshop featured three talks by Project EPIC postdocs Fred Cooper (Bristol), Kathleen Murphy-Hollies (Birmingham) and Eleanor Byrne (Nottingham). 

The workshop theme reflects some current research interests of the project postdocs. All three talks teased out varieties of epistemic injustice that can arise when certain forms of suffering are marginalised by others. Fred asked what epistemic injustices might be at stake in claiming that certain experiences are inherently unknowable, Kathleen discussed the role of various prejudices in shaping how uptake-worthy we take people's claims to be, and Eleanor discussed the extent to which attempts to empathise with others can result in epistemic injustices.

Fred began the day with his talk The Naked Terror: Joseph Conrad, 'True Loneliness' and the inability to know. Fred discussed themes of loneliness in Conrad's Under Western Eyes where there is an implication that loneliness--or rather, 'true loneliness'--is characteristically unknowable. He gives us the following quote:

Who knows what true loneliness is-not the conventional word, but the naked terror? To the lonely themselves it wears a mask. The most miserable outcast hugs some memory or some illusion. Now and then a fatal conjunction of events may lift the veil for an instant. For an instant only. No human being could bear a steady view of moral solitude without going mad. 

Fred Cooper

Fred argued for a closer historical interrogation of the ways that epistemically  unjust or constraining narratives on health and ilness are sustained over time.

Kathleen then talked about metaphorical meaning and giving 'uptake' to the experiences of people with delusions and various other false beliefs. She argued argued that the content of what people say is often over-scrutinised for accuracy and truth, and that these tendencies are often exacerbated by prejudices.

Kathleen Murphy-Hollies

For example, she mentions how the claims of asylum seekers are often over-scrutinised for truth and accuracy as a result of certain prejudices. Ultimately, Kathleen's position is that even when we highly doubt that a certain belief expressed is true, there are still possible meanings to give uptake to in our engagement with them. Kathleen argued that dismissing those meanings can constitute a form of epistemic injustice, and that giving uptake to metaphorical meaning is a way of engaging with the agents' best attempts to communicate their experiences.

Some members of Project EPIC (L>R; Alice Monypenny; Fred Cooper; Ian James Kidd; Eleanor Byrne; Kathleen Murphy-Hollies)

Eleanor Byrne then closed the day with her talk about empathy. Drawing on ongoing collaborative work with Allan Køster (Danish National Centre for Grief), Eleanor discussed the limits of empathic understanding in contexts of profound suffering. She engaged with recent critiques of empathy which state that certain experiences are too alien, too profoundly catastrophic, to be understood by others. She concedes that some experiences can evade understanding, but maintains that some basic form of empathy remains possible no matter the circumstances at hand. This, she called ground empathy. 

Eleanor drew on a passage by Georg Simmel in order to argue that no matter the profound difference in your circumstances, it is always possible to empathically relate to the other person by attending to the fact that we all share the same existential fragility. Simmel writes:

All the thoughts and fates that make us suffer are actually only the occasional causes that bring about a part of the infinite potential for suffering that is inherent in us. [...] The most uncanny thing is that on such occasions we get the inkling of an immeasurable store of suffering that we carry around with us as if in a sealed vessel; a dark being that is not yet reality, but is still there somewhere, from which fate always releases certain parts, but leaves behind an inexhaustible amount. Most of the time this vessel rumbles quite quietly within us, but sometimes, when a single misery or shock opens it, it starts to move, to tremble dully, and we feel – we ourselves do not know where or what it means – this terrible treasure of potential suffering that we carry around with us that is our dowry, which can never be fully realised, cannot be exhausted by any real misery.

(Simmel 1923, Fragmente und Aufsätze)

Eleanor takes this passage to be illustrative of the inherent fragility that lies within all of us, waiting to be made salient by misfortune. It is by attending to these facts of life, the contingency of our position, that we are able to empathically relate to (if not understand) others in times of catastrophic upheaval, illness and suffering. 

This was the first official Nottingham event for Project EPIC. Keep an eye out for updates and adverts for upcoming events across Nottingham, Bristol and Birmingham.

Epistemic Justice in Mental Healthcare

This week we announce the publication of an edited collection which is entirely open access: Epistemic Justice in Mental Healthcare: Recognising agency and promoting virtues across the lifespan (Palgrave 2024), edited by myself, Lisa Bortolotti. The book is an output of project EPIC, featuring eight new chapters exploring epistemic justice in mental health. 

Epistemic Justice in Mental Healthcare

In the Preface (downloadable here), Matthew Broome and I frame the discussion as a way to affirm the role of the mental health patient as a person, an agent, and a collaborator. When we are mental health patients, we are persons because we are more than our health or our diagnosis, we have needs and interests that matter and that affect the way in which our health impacts our lives. 

We are also agents, because despite the vulnerabilities of our status as patients, we have a perspective that matters and the capacity to contribute to positive change. Crucially to the success of clinical encounters, we are partners in the project of addressing our health issues. We can collaborate with healthcare professionals by sharing our experiences and participating in decision making.

Chapter 1, Being understood: epistemic injustice towards young people seeking support for their mental health, is authored by Michael Larkin with members of the Agency Projects team including lived experience researchers from McPin. It addresses some of the factors that make clinical interactions unsuccessful, offering some suggestions for improving clinical communication. The focus is on ensuring that young people are understood and supported at times of crisis, that they are not blamed for the difficulties they face, and that they are not reduced to a diagnostic label.

Chapter 2, Challenging stereotypes about young people who hear voices, is authored by myself, Lisa Bortolotti, Kathleen Murphy-Hollis, Fiona Malpass, and young people from the Voice Collective. It highlights three stereotypes associated with voice hearing that have harmful consequences for young people's relationships and opportunities to thrive, in the family, the school, and the clinic. These are incompetence, dangerousness, and diversity leading to exclusion. The chapter illustrates the impact of these stereotypes based on the young people's experiences, and encourages further empirical research in this area.

Chapter 3, Reacting to demoralization and investigating the experience of dignity in psychosis: reflections from an acute psychiatric ward, authored by a team led by Martino Belvederi Murri, addresses the unique challenges to epistemic justice that emerge in an acute ward, where coercion may be used. The use of coercion may engender situations that are detrimental for individual dignity and morale. One such effect is demoralization, which may increase the risk of suicide. The chapter provides an overview of the work on these topics and offers some suggestions for strategies that might improve the experience of psychiatric inpatient care.

Chapter 4, Not all diagnosis are created equal: Comparing depression and borderline personality disorder diagnoses through the lens of epistemic injustice, authored by Jay Watts, examines four aspects of epistemic injustice: objectification, moral agency, trivialization, and narrative agency. It compares personality disorder and depression, arguably the least and most popular diagnoses with patients in psychiatry. The analysis emphasises the importance of epistemic injustice as a tool in critically evaluating the usefulness of specific psychiatric diagnoses, encouraging a shift in clinical training to embrace reflective practices and restructure power dynamics in clinical encounters. 

Chapter 5, Resisting perceptions of patient untrustworthiness, authored by Eleanor Palafox-Harris, argues that a beneficial therapeutic relationship between patient and clinician requires mutual trust. In order to effectively treat someone, a clinician has to trust the patient’s reports of their symptoms but many psychiatric diagnoses are stereotypically associated with traits that indicate untrustworthiness (such as irrationality). In this chapter Palafox-Harris illustrates how psychiatric labels can signal stereotypes of untrustworthiness, reducing patients' perceived epistemic credibility.

Chapter 6, Preserving dignity and epistemic justice in palliative care for patients with serious mental health problems, with Luigi Grassi as lead author, considers the challenges faced by people with serious mental disorders who are at the end of life and promotes a person-centred approach, which can increase the sense of personal dignity and epistemic justice. Dignity Therapy can be applied in palliative care settings, offering people an opportunity to reflect upon crucial existential and relational issues and prepare their legacy.

Chapter 7, Promoting good living and social health in dementia, with Rabih Chattat as lead author, explores the notion of good living in the case of dementia and highlights the role of social health in preserving wellbeing. Discrimination impacts people with dementia in diagnosis disclosure, advance care planning, and decision making. The chapter critically examines the labelling of the behaviour of people with dementia as problematic and pathological even when it is a reaction to difficulties in communication.

Chapter 8, Ameliorating epistemic injustice with digital health technologies, authored by Elisabetta Lalumera, discusses the potential of digital phenotyping for ameliorating epistemic injustice in mental health. There is a concern that the evidence digital health technologies gather may overshadow individual experiences but, through a fictional case study, Lalumera portrays digital phenotyping as way to support shared decision-making. 

The book aims to help understand how the demands of epistemic justice relate to and complement recent research on agency in youth mental health, person-centred care, dignity therapy, stigmatising diagnoses, good living, social health, and access to digital technologies. As illustrated in the figure below, people seeking help should preserve crucial roles as agents and collaborators with valuable perspectives, multiple interests and needs, the capacity to contribute to positive change, and the capacity for shared decision making.

The mental health patient as an agent

Communicating Ineffable Experiences

On the occasion of the Research & Development (R&D) Conference 2024 on October 15th, Jodie Russell, postdoctoral researcher on project EPIC, presented her work on ineffable experiences and the phenomenology of language to the Herefordshire and Worcestershire Health and Care NHS Trust.

In this post, Jodie summarises the key points in her talk.

Ineffability

Language as gesture

I want to make the case that it is possible for people who don’t themselves experience mental disorder to understand the experiences of those who do, even when these individuals struggle to communicate their experiences. This recognition is important as it may help us overcome some epistemic injustices as a result of assuming some experiences are un-understandable and therefore not worth trying to understand.

To make my case, I argue that we should take a phenomenological approach to language, drawing on French philosopher Maurice Merleau-Ponty for this purpose. On the phenomenological view, language is much more than the words on the page or the sounds that come out of our mouths; for Merleau-Ponty, language is a gesture at the world, which our whole body is involved in. When we speak, we are 'geared' towards the world in a particular way.

For example, when I talk about my cat Fluffy sitting on the mat, I’m gesturing toward Fluffy with my words, in the same way that I might point at Fluffy with my finger. My statement also indicates Fluffy’s ‘presence’; my statement turns us towards Fluffy in our shared world. At my mention, you might look for her or anticipate her to appear, for example, even if she’s actually just hopped out the cat flap.

A cat

The horizon of ideas

My language also implies certain things about me, the world I live in and the nature of Fluffy. For example, I live in a world where cats are domesticated. Her name also tells you that she’s a cat with a significant coat (hence her name) who is well known to me. Language, in the way that it points to aspects of the world, also implies further ideas beyond what we merely see; this is what Hayden Kee (2020) refers to as the ‘horizon’ of ideas.

Importantly, we are aware of other ideas implied by our language in virtue of being part of a shared world. As members of a linguistic community, we all contribute to a stock of shared meanings by both introducing new meanings, changing the old meanings, or reinforcing the old meanings. Which kinds of contribution we make depends on the context (my old saying maybe new to your ears, and thus I may contribute something new – in one way - to our personal pool of shared meanings). Nevertheless, we are, I claim, inherently embedded in a linguistic community and thus our language is (almost) inescapable from this pool of shared meanings.

Horizon

Sharing a linguistic community 

Individuals with ineffable disorder experiences are part of the linguistic community too; they may lack words for their experiences because there simply is no way to describe them in our community. But that doesn’t make their experiences totally incommunicable, I argue. We may just have to understand communication as being broader than words (someone may indicate with their body how they feel, and it is up to us to take up this meaning and try to integrate in into our horizon of ideas).

We must also acknowledge that describing an experience as ineffable is still, itself, communicating some of the experience. We may then need to tease apart the implications of that for other areas of the individual’s life (how they feel they live with an experience that can’t describe, e.g., as a mother, a friend or a working professional) to work around the areas that are more difficult to express.

Understanding individuals with mental disorder to be a part of our linguistic community, of which we are all inherently embedded, is key, I think, to overcoming some of the communicative issues that can arise when someone lacks words for a complex experience, and to gaining valuable insight into what it is like for them to live with said experiences.

Demoralisation and testimonial injustice in an acute psychiatric ward

Individuals experiencing acute psychosis in inpatient psychiatric settings face unique challenges. Consider the case of Jake, a student who is struggling between familial conflicts and economic difficulties, as well as choices related to his life career. Auditory hallucinations may take the form of “voices” that comment on his everyday actions, and may lead Jake to think that people spy on him with malevolent intent. These symptoms can lead to angst and withdrawal from social activities, possibly culminating into severe anxiety and agitation.

The grave societal stigma that is attached to mental illness exacerbates feelings of isolation and diminishes help-seeking. The promotion of patient empowerment is a key component of recovery, and is increasingly seen as a duty of healthcare providers (Larkin and Hutton 2017). People like Jake desire respect and understanding by healthcare providers, need clear and empathetic communication, and want genuine involvement in decision-making (Stovell et al. 2016). Core themes in inpatient treatment are those of powerlessness, quality of care environment, relationship to staff, psychological and physical impact of involuntary treatment, and coercive practices.

Mood and morale

The experience of psychosis in itself and coercive treatment might constitute a “double hit” for the individual’s sense of self-worth, mood, hope, morale. Enhanced insight into one’s mental health is a desirable condition, but can paradoxically lead to adverse outcomes, a phenomenon often referred to as the “insight paradox” (Lysaker, Roe and Yanos 2007, Belvederi Murri et al. 2016). 

This paradox suggests that insight can also lead to increased distress and depression: patients who gain a clear awareness of their psychosis often experience a profound sense of loss and sadness over their perceived decline in personal and social identity. It is particularly evident among people who hold self-stigmatizing beliefs. 

Demoralization may also manifest in patients with chronic psychotic illnesses, but also affective disorders, as loss of hope after a lifetime of struggling with an illness (Grassi et al. 2020) and may be expressed as reduced quality of life. As patients become more cognizant of how they are perceived and treated by others due to their illness, this can exacerbate feelings of hopelessness and low self-worth. However, the effect is tempered by better relationship with the carers. 

On one hand, insight can empower patients, allowing for better self-management and informed decision-making; on the other, it can heighten awareness of stigma, the possible chronicity of their condition, and the impact on their life goals, thereby contributing to depressive symptoms or even suicide (Berardelli et al. 2021). Addressing the insight paradox in treatment planning requires fostering an environment that promotes insight while simultaneously providing robust emotional support and therapeutic interventions to mitigate the distressing impact of such insights. 

Psychosis and epistemic injustice

The concept of epistemic injustice is particularly relevant both for the consequences of psychosis (as a clinical phenomenon) and for the experience of treatment. Individuals with psychosis often find themselves at the intersection of testimonial and hermeneutic injustices, where their capacity to know and communicate their experiences is unfairly discounted due to the nature of the illness and to the internal or external stigmatization of their condition (Smyth 2021, Kidd, Spencer and Carel 2022).

Testimonial injustice may occur when an individual's account of their experiences is disregarded or deemed unreliable, not because of the content of their testimony but because of prejudicial beliefs about their capacity to know (‘identity-prejudicial’ stereotype). For individuals with psychosis, this form of injustice is all too common, as the hallmark symptoms of their condition—delusions and hallucinations—are often dismissed as mere artefacts of their illness, rather than expressions of lived reality. 

Patients with psychosis are judged not to have capacity and are considered completely unreliable in all aspects of their testimony, not just in regard to the content of a particular delusion or hallucination. But psychosis does not necessarily invade all realms of mental functioning and in many instances, patients may hold reliable accounts of a large proportion of their reality and experience. 

The generic, “by default”, dismissal of the whole testimony of people with psychosis not only silences their voices but also impedes their recovery by fostering feelings of isolation, alienation from the healthcare system and society at large (Lysaker and Lysaker 2010). 

It could be argued that a person experiencing psychosis does also risk to commit testimonial injustice on themselves, by judging the self-experience of the world less reliable than it is, and by developing what is called self- or internalized stigma, which is particularly relevant for subsequent loss of self-esteem (Fernández et al. 2023).

Martino Belvederi Murri is Associate Professor in the Department of Neurosciences and Rehabilitation at the University of Ferrara. Martino is also a partner of project EPIC.