Abstract
Memories act as aids to assemble the chronology of the past, and to reveal the influences of the past on the present. While cognitive recall is a form of memory, memory also exists in other domains including the body, the social and cultural spheres. This article addresses the importance of slow memory research with mental health service users. The silencing of people with mental illness, including in research spheres, compromises the recording of their narrated experiences, diluting their presence within the historical analysis of mental illness in society. Slow memory research supports engagement with silenced groups, thus elevating the importance of narrated memories of people with mental illness, including how they experience the silencing of their voices. Drawing on data from research that gathered narrated memories from mental health service users, this article reveals valuable insights regarding this group’s lived experiences, particularly regarding their contact with mental health services.
Keywords
Introduction
Societal responses to mental illness have been contentious for centuries and polarised views on how best to address mental illness in society continue into the present. In this contested context, theories about mental illness exist in a landscape crowded with conflicting paradigms, such as the medical model, the psychological model and the social model of mental illness (Davidson et al., 2016).
This article considers a key, yet controversial, element in the ongoing search for an agreed explanatory model of mental illness, namely, the participation of mental health service users as informants in research on mental illness. From a social justice-informed research perspective, mental health service users, as people with lived experience of mental illness, are important repositories of memories regarding their experiences of psychiatric treatment and care. Typically, the memories of this group have been excluded from the history of psychiatry due to doubts about the reliability of their narrated memories and concerns about triggering distressing memories when asking them about their lived experiences.
These concerns underscore a reluctance to conduct studies that directly involve people with mental illness, a reluctance which is encircled by concerns regarding the safety or ethical appropriateness of asking people perceived as vulnerable about their lived experiences of mental illness, particularly people whose capacity to consent to be researched is regarded as compromised. This article draws on outputs from an Irish study on mental health service users’ narratives of their experiences of participation in treatment decisions (Kirwan, 2017b) to illustrate the insights which can be gained from their accounts. By applying the practices of slow memory narrative methodology, entailing ‘slowing down our thinking, living, and remembering’ (Wüstenberg, 2023), we bring to the forefront their hitherto silenced voices. Drawing on the findings from Kirwan’s (2017b) study, this article observes how memory not only operates in the past, but also influences people’s actions in the present, as in this case, regarding how they think and behave in their interactions with psychiatric service systems. Such a practice of slow memory narrative research not only enables the service users’ memories to come to light, it also adds to the methodology and theory of slow memory studies.
Subjective memory in the history of mental illness
For many centuries, people with severe and enduring mental illnesses have experienced stigma, discrimination and exclusion from mainstream social life. White and Staniford (2023) illustrate how these negative factors permeate the lived experience of mental illness, serving to compound the impact of illness symptoms. Historically, the voices of people living with mental illness have been almost entirely absent from public discourse and academic research on the subject of mental illness (Davies, 2000; White and Staniford, 2023). Direct reports from people with lived experience of mental illness have been sidelined from mainstream scientific inquiry into mental illness, an arena which, over the past two hundred years, has become dominated by the positivist scientific tradition. Alderson (1998: 1007) provides a useful summary of how positivist science operates: ‘A scientist gazing through a microscope symbolises positivist objective examination, the distance and difference between the observer and the observed, the effort to examine intensely the tiniest part isolated from its context, the use of reliable, visible “hard” data. In medicine, the emphasis on specific body parts, conditions, and treatments assumes that these are universally constant, replicable facts’.
From this positivist perspective, little value is attached to the collection of data in the form of remembered subjective experiences. In contrast, slow memory narrative research on this topic can add the analysis of what Moll (2013) describes as ‘fragmented memories’ where various actors hold different versions of the same events. Although, historical data is available in what Brown et al. (2025: 4) describe as ‘fulsome notes of conversations with patients and descriptions of their concerns, moods and behaviours’, Holmes (2016) points out that the memories (in their own words) of people with mental illness have been obscured within the psychiatric system archives. She explains that historical material mainly involves: ‘. . . institutional archives: case books, admission registers, doctors’ notes, medical journals. . . . They are histories that tend to leave mental illness locked away in the asylum. We hear the voices of those who cared for their patients but a persistent challenge for historians has been to hear the voices of the patients themselves’ (Holmes, 2016: 26).
Costa et al. (2012) alert us to the problem of this type of ‘sanitizing’ or silencing that occurs regarding the memories of people with mental illness. They suggest that if the history of mental healthcare, as experienced by those who receive that care, is never in their own words, then it is likely that established practices in systems of mental healthcare will remain unchanged, because they remain unquestioned, under-interrogated and mainly unknown. In this way, silenced groups are disregarded as knowledge holders of their lived experiences (Kirwan, 2017b, 2020). This culminates in regularly excluding their contribution to research in the field of mental illness.
Slow memory research encourages the practice of ‘daylighting’ which includes ‘close listening and valuing of forgotten, marginalized, or silenced practices’ (Wüstenberg, 2023). Such a method is especially useful in conducting research on silenced or sanitised narratives of mental health service users as it brings to light their memories previously pushed into the half shadows, a position defined by Kirwan (2017a: 3) as ‘being known to exist but not being known about’.
In addition, the conceptualisation of mental health service users as inherently vulnerable and unable to exercise good judgement in their own life decisions can give rise to difficulties in securing ethical approval for research studies which involve conducting interviews with people suffering from long-term and serious mental health issues. Inviting people to disclose their lived experience of mental illness is sometimes viewed as potentially harmful for participants. Even when possible to engage in data collection with this population, the information shared by research participants can be affected by the reluctance of some participants to share their ‘counter-establishment’ memories, due to previous negative experiences of voicing their personal perspectives. Furthermore, the stigma (Rüsch et al., 2005) which surrounds mental illness can affect the willingness of participants to share accounts of their lived experiences. Consequently, memories of living with mental illness may be actively concealed by those who carry them through their lives, and rarely shared by them with others.
This article draws from a qualitative study by Kirwan (2017b) which collected and analysed subjective accounts of lived experiences of mental illness from a sample group of twenty mental health service users, all of whom had experienced long-term and serious mental health problems and who had been involuntarily admitted for psychiatric treatment at some point in their lives. This study is also emblematic of slow moving transformation (Wüstenberg, 2023) in the research on psychiatric care, which is beginning to address the lack of firsthand documented narratives of mental health service users.
By asking individuals to talk about their participation in psychiatric assessment and diagnosis of their symptoms, Kirwan (2017b) study reveals, among other findings, the bricolage of silencing experienced by people with mental illness, and shows how being silenced overlaps with experiences of stigma, vulnerability, and patienthood. Slow memory narrative research, with people whose lived experiences of mental illness have been silenced, fits well with Tali and Astahovska’s (2022) concept of ‘unsilencing’ (which they identify in their work about conflict in Eastern Europe). Referring to the field of mental illness research, Fisher and Freshwater (2014) suggest that research work, incorporating the memories carried by mental health service users, amounts to emancipatory research that enables ‘discursive alternatives’ to professional perspectives to become audible. The amplification of these voices renders them available for analysis. Research that is underpinned by social justice principles (McGarry et al., 2024) complements the drive behind slow memory research to uncover hidden knowledge. Indeed, the concept of unsilencing draws attention to the research and cultural landscape within which silencing has been a common experience for people with lived experience of mental illness. The history of silencing and the prospect of unsilencing feature as themes throughout this article.
As researchers of slow memory, we focus on how we ‘conceptualise memory, which methods we employ’ (Wüstenberg, 2023) to orient our attention towards how mental health service users construct their past experiences and tease out the ways in which these memories have a bearing on their future choices regarding seeking psychiatric care.
Mental illness and memory
As a worldwide phenomenon affecting millions of people, the search for cures of mental illness is an established field of scientific research. Many of the studies for treatments for mental illness, including pharmaceutical treatments, are high volume and high cost, generating substantial revenue streams. The dominance of pharma in the field of mental illness treatments is symbiotically entwined with the strong position of the biological model of mental illness and this strengthens the medical model’s promotion as an overarching explanatory model of mental illness.
In this context, some commentators (e.g. Pilgrim and Rogers, 2008; Rapley et al., 2011) lament the neglect of research on non-biological causes or triggers of mental illness, criticising the lack of research attention to identifying the contribution of adversity factors, such as exposure to poverty, childhood abuse, and interpersonal violence. The exclusion of data on the experiential knowledge of people with mental illness, as a key informant group in mental illness research, fuels criticism that positivist research is incomplete in the analysis it produces because it excludes potentially vital data (Pilgrim, 2015). Historically, research on mental illness has suffered from a dearth of direct accounts from mental health service users regarding their experiences across different periods of time. The absence of this form of data in many research studies on mental illness continues to the present day.
Social inclusion and memory
With the rise of a rights-based agenda in disability and mental health service user social movements (Beresford, 2007, 2012, 2016; Dillon, 2011; Oliver, 1986, 1990), the inclusion and societal recognition of people with disabilities, including people with mental illness, has become a unifying focus, often expressed in the rallying call ‘nothing about us, without us’ (Oliver, 1990). Pushing back on the constraints of paternalism, the voices of people with mental illness are increasingly amplified in policy circles, slowly relocating the collective memorisation of people into mainstream discourse. Rights campaigners and lived experience activists, such as Beresford (2012), argue that including the voices of people with mental illness in research on mental illness fosters greater awareness and visibility of their experiences, for example, regarding their contact and interactions with psychiatric systems of care. Concurrently, a research counter-culture is emerging that forefronts the lived experience of mental illness as an essential component of research, or knowledge-building, in the field of mental illness research (Russo and Sweeney, 2016).
The disability rights perspective within the field of mental illness has thus challenged the exclusion of people with lived experience from the field of scientific inquiry into mental illness. Mental health service users are increasingly represented within research studies as informants who can authentically speak of their personal lived realities (in a way that no other stakeholder group can perform on their behalf) (Rose et al., 2009; Sweeney, 2009; Sweeney et al., 2009). This level of involvement can provide a powerful counterpoint to embedded ways of knowing about mental illness (Brosnan, 2012; Russo, 2012; Thornicroft and Tansella, 2005).
Finding meaning in narrated memories
Goffman’s (1961) ethnographic study on mental asylums revealed the unintended harms of institutional care for people with mental illness from which eventually grew a policy rethink on segregated care. While asylum care had emerged as a benign response in comparison to 18th and 19th century practices of imprisonment and torture of people with mental illness, the qualitative research studies of mid-20th century social scientists propelled further re-examination and reassessment of society’s responses to mental illness.
In addition, Foucault’s (1980, 1988 [1965], 2011 [1954]) work highlighted the oppressive imbalance of power between the patient and psychiatrist and the elevation of ‘the examination’ as an enactment of the psychiatrist’s power in that relationship. He revealed the psychiatric system as a new regime of discipline, where surveillance and monitoring of patients was not only about care but fundamentally about control. These observations gained traction within the social science academy and added impetus to broaden the mental illness research field beyond the ring-fence of the bio-medical, positivist research agenda. The growth of qualitative research on this topic helped shed light on lived experiences of mental health service users. Within the qualitative family of research methods, in addition to ethnography, narrative methodologies were also gaining increased prominence as the 20th century progressed, developed by theorists who sought to uncover ‘personal and social meanings’ that people attach to their lived experiences (Wengraf et al., 2002: 245). Narrative methods directly involve research subjects in the articulation of their memories and feelings regarding their own lived experiences. In the field of mental illness, a new set of voices became increasingly audible due to the collection, publication and dissemination of narrative-based studies (see for example, Saris, 1995).
Furthermore, the expression of lived experience has not been confined within the walls of academic research and often finds voice in illness narratives which as texts create sites of representation and memorialization of the vectors of sickness and the body. Written or co-authored by people with lived experience of mental illness in a range of genres, they deal with the experiences of symptoms (such as depression, or psychosis) (see for example, Deegan, 2002; Greally, 2009 [1971]; O’Donoghue, 2009; Schiller and Bennet, 2011 [1994]).
The combined effect of these different opportunities, in and outside academia, for hearing directly from people with lived experience of mental illness has informed greater awareness of the unique insight their memories can provide. Foregrounding the importance of illness narratives in the study of illness and their effects on the body, Mishra and Chopra Chatterjee (2013: 1) emphasise the necessity of the study of illness narratives in order to attain a more holistic understanding of the experiences of being ill. They state ‘illness narratives point to the limitations of the positivist language of biomedicine and highlight the role of culture and society in understanding health, illness and suffering in everyday lives’.
The study of lived experience focuses on the indispensability of illness narratives as they help the patients understand the pressing question ‘why me?’ (Jurecic, 2012), which otherwise goes unanswered in the economy of modern medicine, where the ill are reduced to a common denominator of ‘patients’ and are seldom treated as individuals. Memory studies can help broaden this question to ask, ‘why any of us, and how?’
The need to know more about ‘the what’ and ‘the how’ is relevant in the endeavour to understand the impact of mental illness because it is important to highlight both the personal as well as the social experience of sickness. In this context, the distinction drawn between ‘illness’ and ‘disease’ by Dr. Arthur Kleinman becomes especially relevant where ‘illness refers to how the sick person and the members of the family or wider social network perceive, live with, and respond to symptoms and disability’ (Kleinman, 2020: 26). He emphasises the importance of understanding the multiple aspects of being ill, which will ultimately lead to an improved infrastructure of caregiving.
A similar argument is put forward by Charon (2006) who makes a case for narrative medicine. By this she implies that treatment done by doctors can take into account the narratives of patients which can be ‘told in words, silences, tracings, images, laboratory test results, and change in the body – and to cohere all these stories into something that makes provisional sense, enough sense, that is, on which to act’ (Charon, 2006: 26). Such an approach respects the narrative that the ill person constructs for themselves and takes that into account in the process of treatment.
Narrative research, also known as life history interviewing or biographical research (Chamberlayne et al., 2000), is a qualitative approach used in research concerned with the lived experiences of people, particularly those drawn from hard-to-reach populations. It is a flexible method, capable of accommodating emergent themes through an interactive engagement with the narratives of the target research population (Rubin and Rubin, 2005). However, the analysis of illness narratives can be challenging as they are customarily infused with references to lived reality that are expressed through myths and metaphors, often in an attempt to bypass the inexpressibility of pain and narrate the experiences of the sick body. The problem of analysis arises if these narratives are only examined through a focus on the chronological truth value of the narratives in question. Invariably, owing to the presence of myths, metaphors, and (sometimes) hazy recollections in these narratives, researchers often dismiss these works as lacking authenticity, and not worth critical scrutiny.
This problem can be overcome by analysing illness narratives through the lens of slow memory studies. Such a methodology shifts the focus of analysis from the binary of truth and falsity to questions like – what purpose do narratives of illness, with their use of myth, metaphors, and false memories, achieve? Does the expression of illness help one in coming to terms with one’s state of sickness? Do these narratives help in producing myriad ways of looking at embodied experiences? How do these memories influence the narrators’ future treatment-seeking decisions?
As evidenced in some of narratives, especially regarding the previously referenced experiences of mental healthcare memories, it can be observed that prior experiences have a direct impact on an individual’s perspective with respect to availing of services in the future. Such a scrutiny of past experiences to understand their impact on future preferences is in keeping with slow memory’s emphasis on ‘thinking through which “pasts” have a meaningful impact on our present(s)’ (Wüstenberg, 2023), thus emphasising the necessity of conducting slow memory research with narratives of illness.
Beyond narrative practices of memory, mental health service users are also often reluctant to disclose their lived experiences for fear of stigma. Costa et al. (2012) ask us as receivers of narratives of illness to ‘listen’ better and to make sure that we do not divide our analysis into the binaries of survivors and martyrs to the system, but recognise and honour the emotional labour that is entwined with this form of personal storytelling.
In an Irish research study on mental health service users’ experiences of participation in treatment decisions, Kirwan, (2017b) illuminates how the memories carried by the participants influenced their views on any future contact they might have with mental health services. By directly recording service users’ narrated experiences of participation in the treatment settings they encountered, Kirwan, (2017b) study set out to ‘listen better’ with the aim of illuminating the experiences of patient participation in diagnosis and treatment decisions.
The focus on patient participation in this study was due to the increasing policy guidance both in Ireland and worldwide to involve mental health service users as participants at every level of mental healthcare delivery (Department of Health, 2006; WHO, 2013). Kirwan’s (2017b) study intentionally focused on the individual level of contact between service users and treatment systems, and positioned people with experience of mental illness as experts regarding their lived experiences. This study explored this under-critiqued policy context where people with mental illness are positioned as participating on an equal playing field with professional service providers (Department of Health, 2006), despite the reality that the same service providers control access to treatments and also have the power to impose treatments (including involuntary admission to psychiatric treatment centres) in certain circumstances. The study aimed to address the concern, expressed clearly by Kelly (2016), about the absence of patient voices in policy, treatment systems or historical research on mental illness care systems. Kelly (2016: 87) suggests that mental health service users are ‘remarkably elusive, their voices astonishingly silent’ regarding the interpretation of the history of Irish mental health services, despite the fact that the service is built around them and they occupy a central position within it.
The study adopted a qualitative research design (Rubin and Rubin, 2005) in order to document and gain insight into the experiences of people with mental illness regarding their contact and interactions with mental health services in Ireland. In particular, the study focused on eliciting the views of people with mental illness regarding their experiences of participation in their individual-level interactions with mental health services. In the tradition of biographical methods in social research (Chamberlayne et al., 2000), this study privileged the ‘voice’ of people with lived experience of mental illness (past or current) and utilised a narrative methodology for both data collection and analysis that was informed by the Voice Centred Relational Method (VCRM) (Mauthner and Doucet, 1998).
Because the Irish study was centrally concerned with the perceptions, recollections, reactions and opinions of people with mental illness regarding their experiences of participation in their interactions with the mental health service system, the adoption of VCRM methods provided an effective means of data collection and analysis. In total, twenty people participated in the study, all of whom had experienced severe and enduring mental illness for many years and had been admitted involuntarily for psychiatric treatment at some point in their lives.
While the study’s main focus was on the experience of participation in their diagnosis and treatment decisions, the study by its nature required in-depth consideration of the part played by memory in how the participants narrated those experiences. For at least some of the participants it was evident in their research interviews that precise recall of events was not always possible. However, it also became clear that the participants’ memories operated within a range of domains, including somatic memories (how occasions were remembered in terms of bodily sensations), social memories (how they remembered events due to the social implications of the interactions with service providers or family, for example), emotional memories (feelings of fear, shame, and embarrassment were often vividly accounted in their narratives), and psychological memories (how their experiences helped them understand their illness or the choices they faced in the past and into the future). The analysis revealed that the memories likely to influence their participation in future health-care interactions were carried by participants in a variety of ways, and not necessarily in a detail-by-detail form of accuracy, but in a feeling-by-feeling, or impression-by-impression form of accuracy, the strength of which was almost palpable in some of the interviews. For example, one participant, Deborah (all names of participants have been pseudonymised to protect their privacy), described her ongoing fear that her children would be removed from her care if she fully revealed the extent of her symptoms to her treating team. However, she could not recall any exact interaction where this was raised with her as a possibility by any member of the treatment team–but it was a fear she carried psychologically and emotionally, and it influenced her willingness to share information about her symptoms nonetheless.
The study set out to privilege and illuminate these personal narratives of people with mental illness, positioning them as valid, sense-making sources of knowledge. This somewhat contentious methodological positioning mapped the terrain of the study as one involving the exploration of remembered experiences in order to better understand the nature of mental illness, including what helps or hinders people to obtain the assistance they believe they need in order to cope with or recover from their symptoms of mental illness.
The subjective experience of silencing
Costa et al. (2012: 87) refer to the ‘subjectivities’ of mental health service users’ experiences, which in the context of the Irish study came to the fore in relation to a number of issues. First, the narratives revealed both the positive and negative experiences of mental health service users in their interactions with mental health services. The analysis illuminated an inherent contradiction in the policy of positioning mental health service users as partners in treatment planning (similar to Charon’s (2006) concept of narrative medicine), when the system in which they are to enact this role constructs them as incapable of providing reliable or useful information or being incapable of making best interest decisions for themselves. The inherent power imbalance revealed in Foucault’s (1980) analysis of the psychiatric system was illustrated repeatedly (as in the example of Deborah described earlier) in the narrated recollections of the participants in Kirwan’s (2017b) study. Some of these accounts highlighted the interplay between power relations within the psychiatric system of care and the individual experiences of silencing that many of the participants associated with their experiences of treatment.
For example, the analysis revealed the dynamics that participants recalled during episodes of contact with psychiatric services when they wished their views to be heard. Through the practice of (slowly) listening to the participants without a prefigured agenda, it was observed that the participants felt ‘heard’ in the research interviews, which enabled them to shed light on their memories. The excerpts from their narratives displayed examples of some research participants’ memories of silencing in their contact with service providers across a range of contexts (all names are pseudonymised here to protect the participants’ privacy).
For example, Eric experienced tactile hallucinations that would sometimes cause him somatic discomfort (he sometimes felt pain due to an external object, although the object that he believed was causing his pain did not factually exist). He explained that he felt he could discuss his symptoms with one of his doctors and get advice. However, he also recalled how he felt his experiences and views were dismissed in consultations with a different doctor when he was seeking both understanding and a solution (pain relief) for his specific somatic symptoms. In one scenario narrated by Eric, he described why he believed that the doctor wanted him to stop talking about his symptoms: I brought it up once or twice with my doctor. . . And he goes:
Amy, who had a history of self-harm and depression, outlined her perception that her relationship with service providers was based on a power imbalance that negated her voice:
Every appointment I have ever gone in to, I’ve always felt beneath the person I have been speaking to. I’ve always felt that it’s kind of amazing that
Amy provided examples where her views and knowledge of her personal distress were not heeded. She captured how these memories helped her formulate her priorities in terms of what she wanted from future consultations with psychiatrists or other professionals: I just wanted to be treated with respect. . .treated with respect and I think that, I think that you need to be, I think that
However, Amy also provided a positive example of being listened to when she described one encounter that occurred at a time when she was feeling actively suicidal and consequently admitted to hospital. She provided this example in her interview as a way to highlight how most of her contacts with mental health services contrasted to this good experience:
I had agreed but em I had agreed reluctantly em I knew that I didn’t want to be there but they didn’t have to force me to be there either. . . When they asked me questions I could have lied but I chose not to . . . like when they asked me was I suicidal I could have said ‘no’ when I clearly was em and at this stage
Similarly, in Kyle’s narrated memories, he provided an example of a doctor who listened to his views and how he, Kyle, explained his symptoms. However, Kyle provided this recollection as an exception against which he contrasted most of his encounters with the psychiatric services: . . .
Kyle compared this positive experience with a negative encounter during an admission to hospital via the Emergency Department that he described as follows: I was put into the Admissions Unit and I can remember I was sobbing and just so raw and I remember the doctor who was filling the, do you know, the admission, and I remember he was saying, he was asking me all these questions I can’t answer, I can’t think straight, like you know, and I started bawling [crying] and they actually got up and they were just like, ‘maybe you need to go back to the ward now, you’re not in a place to do this’. . . and sent me off and I was thinking like what is going on here. I felt so alone on my own. Rather than actually reaching over to me and saying ‘you can take some time here you know I am here with you and we’re going to. . .this is ok to be like this here’. There was nearly a fear of ‘ok, well I’m not going to deal with this –shit’ like you know
Kyle’s narrated memories also demonstrated the shortcomings in a policy that promotes service user participation, including open dialogue and information-sharing regarding symptoms, but simultaneously empowers service providers with the legal authority and responsibility to involuntarily detain individuals with mental illness in certain circumstances as set out in current Irish legislation (Department of Health, 2001). It appears that ideas of participation, drawn from the wider policy discourse (Department of Health, 2006; WHO, 2013), create tensions when they conflict with the responsibility on mental health services to protect individuals and the public from risk related to mental illness symptoms.
In the interview with Ultan, who described himself as a mental health service user with ‘30 years of good solid experience’, he explained that he believed it to be a good idea to share some details with his doctor about his symptoms. However, based on situations where he received treatment early in his illness that he was unhappy about, he qualified this statement by setting out the limits of disclosure he applies to his interactions with mental health service providers: Well, you know,
Similarly, based on her memories, Deborah explained how, in the early years of her diagnosis, she often felt conflicted about telling her doctor about her psychotic symptoms so that she could get treatment she needed, while, at the same time, worrying that her doctor would become concerned about the safety of her young children whom she cared for alone during the day. She summarised this dilemma and the silencing effect it had on her in this statement: ‘
Arthur, who could not remember how many times he had been involuntarily admitted to psychiatric hospitals, outlined how he had learnt to submit to his treatment regime when in hospital as opposed to seeking an inclusive, participative experience. He explained he had realised that he would be released quicker if he concealed his symptoms. He narrated the following memory describing one of his periods of involuntary admission for treatment:
These narrated memories, from the dataset in Kirwan’s (2017b) study, revealed how efforts to participate can be perceived as counterproductive by lived experience experts, particularly in relation to silencing dynamics. These narrations depicted how silencing can influence decision-making regarding future participation or non-participation in scenarios surrounding diagnosis, treatment or ongoing support.
Discussion
Conducting memory research with mental health service users provides an important route to enable this group to exercise leverage and influence regarding the services they receive (Foster, 2003). In qualitative research studies on mental illness, there is a discernible shift towards recognition of the value of firsthand narratives of people with lived experience of mental illness. Nonetheless, the task of accessing the memories of individuals with lived experience of mental illness remains challenging, not least because society views this group of people as unreliable informants of their own experiences or too vulnerable to be exposed to re-traumatization by recounting their experiences in research contexts. Furthermore, memory work in this field requires the researcher to address the question of the reliability of memories carried by people with mental illness. Traditional stereotypes of the service user (patient) make a presumption of unreliable recall. While acquiring a diagnosis can be beneficial in terms of opening access pathways to mental health services, the flipside remains problematic as it is difficult for society to shake the perception of people with mental illness as lacking agentive rationality and, therefore, incapable of giving informed consent to participate in research that collects their memories and viewpoints. These views constrict the opportunities for people with lived experience of mental illness to speak out through research about the care they have received. The emergence of research with or by people with lived experience offers a counter-narrative to mainstream thinking on the impact of mental illness, but this genre of research remains marginal in a context of dominance by resource-intense studies on mental illness that are grounded in the traditional medical science domain.
Nonetheless, this article draws on slow memory theory to highlight the value of investigating the experiences of people with mental illness, albeit in acceptance that people may not fully recall precise factual or chronological details about their experiences during moments of distress or ill-health. This article has argued that mental illness research is incomplete without the views and voices of people with mental illness. Drawing from an Irish narrative research study with people with mental illness (Kirwan, 2017b), this article argues that the influence of memory (factually accurate or not) on the subject group’s individual behaviours and attitudes to treatment is discernible in the narratives of that study’s participants. Understanding the rationale behind their narrated behaviours and attitudes offers a vital ingredient for improving treatment options and how they are administered.
The increased visibility of mental health service user movements at local and international levels (Crossley, 2006) has been depicted within the sociological literature as ‘a powerful means for action, resistance and change’ (Carr, 2004: 270), because of the strong focus across various representative groups on heightening recognition of the lived experiences of people with mental illness. Slow memory research can offer an important contribution to illuminating the lived experience of mental illness, including regarding the mechanics of the silencing this population may encounter. Thus, research using a slow memory narrative methodology has a role to play in developing this subject area. Overall, this article shows how research on narrated memories by mental health service users can provide key insights into the inherent contradiction attached to constructing service users as partners in treatment planning, when the system in which they are to enact this participative role also constructs them as lacking capacity for informed decision-making. These inherent contradictions operate to diminish rather than augment the ability of some service users to express their truth. There is a growing urgency to gain and better understand this phenomenon. Recently, the World Health Organisation (WHO, 2025) updated its guidance on mental health policy urging a more human rights-based approach in the way mental health services are delivered, and one that respects the preferences of mental health service users. In the foreword to this policy guide, Dr Tedros Adhanom Ghebreyesus, WHO Director-General, emphasised ‘the importance of embracing rights-based, person-centered, and recovery-oriented approaches that emphasize autonomy and dignity, while also engaging people with lived experience in planning and decision-making’ (WHO, 2025: vi). This is the aspiration, but clearly much work, including research that includes the views of mental health services users, needs to be done to understand how rights-based approaches can work in the context of oppressive histories and continued power imbalances.
Concluding remarks
This article argues that slow memory narrative research has much to offer to research on mental illness that continues to search for an evidenced explanation of the root causes of mental illness as well as remedies and care practices that work. In this context, this article argues for greater recognition of people with severe and enduring mental illnesses as valid knowledge carriers, whose expertise by experience and narrated memories can provide a useful and unique perspective in the quest for knowledge on the causes and solutions related to mental illness.
This article draws on a study (Kirwan, 2017b) in which in-depth narrative interviews were conducted with mental health service users, all of whom had been diagnosed in their adulthood with a serious and enduring mental health condition, and all of whom had been involuntarily detained in psychiatric treatment centres at some point during the trajectory of their illness. An emerging theme within that study was the enactment of silencing, and why mental health service users find it challenging and sometimes risky to voice their experiences of mental illness and the symptoms they endure. Themes identified by the research participants included the experience of silencing that incorporated not being listened to or feeling they could not seek help for their needs. This article aimed to illuminate the benefits of conducting slow memory narrative research which entails deliberate ‘listening’ to the memories that currently reside in the half shadows, bringing to light how past experiences have an impact on future choices of service users in terms of how they go about availing care and what factors influence their engagement with treatment systems.
A central focus of this article concerns how mental health service users’ illness narratives can enrich our understanding of the lived experience of mental illness, including the ways in which individual service users can sometimes feel silenced during their illness journey. While the ‘expert by experience’ perspective has emerged as a valid contribution to research on mental illness, there is more work to be done to better understand the influence of memory and what slow memory research can reveal in this context.
Footnotes
Acknowledgements
This article is based on work from COST Action Slow Memory: Transformative Practices for Times of Uneven and Accelerating Change, CA20105, supported by COST (European Cooperation in Science and Technology).
Ethics approval statement
The study referred to in this article received approval from the Research Ethics Approval Committee of the School of Social Work and Social Policy, Trinity College Dublin, Ireland in 2014. The research participants involved in that study gave written consent with signature, including for publication of the study, before starting interviews.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The publication costs were supported by the Royal College of Surgeons in Ireland, University of Medicine and Health Sciences.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.