Stories of acceptance and resistance: illness identity construction in athletes (mis)diagnosed with a personality disorder

ABSTRACT

Mental illness identities are personally and socially constructed and impact psychological wellbeing. This study explored how athletes diagnosed with a personality disorder construct their illness identity and the various ways this impacted experience. Guided by an interpretivist paradigm, we recruited two powerlifters, Samantha and Alex, who engaged in a series of one-to-one interviews. In total, 11 hours of data was collected and analysed using dialogical narrative analysis. The personality disorder diagnosis had significant but divergent influences on each athlete. Samantha accepted the diagnosis, aligning to dominant medical understandings of mental illness and using these to construct renewed understandings of the self. In contrast, Alex told a counternarrative to dominant medical discourses of mental illness, which was characterised by stories of activism. Alex sought an alternate diagnosis, autism spectrum disorder (ASD), which better validated their experience. We discuss implications of this work for those operating in sport, such as the importance of allowing athletes to develop their own understandings of mental illness to allow for the construction of an authentic self.

KEYWORDS:

• Narrative inquiry
• mental health in sport
• neurodiversity
• labelling
• stigma

Introduction

The mental health of athletes has become a dominant focus within contemporary sport performance research (Prior, Papathomas, and Rhind 2022). There is wide acceptance that unique sporting demands, such as overtraining, injury, competitive failure, and early retirement, place athletes at increased risk of mental ill health (Cosh, McNeil, and Tully 2021; Jewett, Kerr, and Tamminen 2019; Poucher et al. 2021). Although prevalence studies yield inconsistent results, some suggest over half of athlete samples experience a diagnosable mental disorder (Elbe and Nylandsted Jensen 2016). The current focus on the prevalence of athlete mental health issues can provide an important, albeit partial, overview of the extent of the problem, but offers little experiential knowledge (see Papathomas and Lavallee 2012). Further, an overly dominant focus on self-reported mental illness symptoms may restrict understanding by closing space for subjective and interpretive insights (Pereira Vargas et al. 2021). To address these limitations, interpretive methodologies such as narrative inquiry explore personal meanings, constructed through life stories, as a way to make sense of what living with mental illness is like.

A narrative is a ‘genre that contains a point and characters along with a plot connecting events that unfolds sequentially overtime to provide an explanation or consequence’ (Smith and Sparkes 2009, pg. 2). Therefore, narratives are an overarching thematic structure which people use to tell stories, whereas stories are a tale that an individual tells (Smith, Bundon, and Best 2016). Put simply, people do not tell narratives, they tell stories. Constructing and telling stories about one’s life is an essential part of developing and maintaining an identity; associated with a sense of unity, meaning, and purpose in life (McAdams 2018). From a dialogical perspective, narrative identity is co-constructed as establishing identities relies on dialogue; dialogue between storytelling others but also dialogue between dominant stories that circulate within cultures and institutions (Smith and Sparkes 2008). That is, although people have agency in the stories they tell, a story describing personal events is still shaped or constrained by others, and the master narratives which prevail within the culture that an individual operates in (Smith and Sparkes 2009).

Master narratives are ‘culturally shared stories that guide thoughts, beliefs, values, and behaviours’ that override all other stories (Syed and McLean 2022, 8). For example, the medical model provides a master medical narrative of mental illness which powerfully shapes how mentally ill people are understood, by others and themselves. Within this article we define medicalised understandings of mental illness as a narrative that tells of personal deficit and individual pathology, regardless of the perceived cause. Our understandings reflect Frank’s (1995) work, who notes a medical narrative is a story of symptoms, treatments, and outcomes towards eventual recovery. A medical narrative of mental illness typically assumes biological (e.g. brain defects) or psychological causes (e.g. enduring stable psychological traits) to relate to mental illness development (Deacon 2013).

Narrative illness identity refers to storied understandings of one’s mental illness and the attitudes developed in relation to having a mental illness (Yanos, Roe, and Lysaker 2010). For example, one person may use biological explanations to construct an understanding of their mental illness – that it is a brain disease or caused by a biological inadequacy (e.g. ‘I was born this way’) (Deacon and Baird 2009). Although such a medicalised illness identity may absolve the individual of blame following a mental disorder diagnosis, it can also suggest it is fixed and permanent which may lead to reduced recovery efforts (Yanos, Roe, and Lysaker 2010). The acceptance of a medical master narrative of mental illness can be an appealing and accessible resource supporting a coherent life story (McAdams 2018). Narrative coherence is a person’s way of causally and sequentially organising their experiences to create a coherent understanding of their lives and how they came to be (Newitt, Worth, and Smith 2019). As such, alignment to medical understandings of mental illness can provide a strong cause-and-effect pathway for why mental illness happened. For example, a person may correlate mental illness symptoms with a ‘chemical imbalance’ in the brain – a widely endorsed explanation of mental illness (Deacon and Baird 2009) – which provides a reason for why they are living through difficult experiences. Alignment to a coherent narrative gives people an opportunity to narrate a potentially disorganised story of the self into a meaningful narrative, allowing people to make sense of their illness (McAdams 2018).

In contrast, some individuals construct their illness identity in a manner whereby they reject the traditional mentally ill person label (Yanos, Roe, and Lysaker 2010). Although the medical model provides a coherent story to live by, it may lack narrative authenticity; the degree of alignment between the story told and the experience lived (Ochs and Capps 1996). Therefore, individuals may reject the potentially useful coherence of medical narratives of mental illness in favour of a more authentic account. Rejection of certain mental illness understandings can be achieved through the telling of counternarratives; resistance stories that challenge the medical model’s assumptions regarding causation, diagnostic labelling, and recovery (Andrews 2004). Therefore, the rejection of an illness identity can enhance psychological wellbeing as individuals develop empowered identities through refuting the stigma associated with a particular illness (Yanos, Roe, and Lysaker 2010). However, by telling a story which does not fit within commonly accepted understandings of mental illness, individuals’ risk not being understood by others, as these stories contradict common assumptions about the world (Woods, Hart, and Spandler 2019). The appeal of having stories be believable may pressure people to tell inauthentic stories, which can lead to the development of an inauthentic self (Crossley 2000).

The distinctions presented by Yanos et al. (2010) between the acceptance and rejection of a mental illness provide a useful conceptualisation of illness identity and the potential impact which accepting or rejecting an illness identity can have. However, these dichotomies may be too simplistic to fully understand how illness identity is accepted or rejected, particularly within sport. For instance, there is a lack of understanding of how identities play out within different interactional settings. Identities are malleable (Monrouxe 2010), meaning people may swap between the acceptance and the rejection of an illness identity in different settings.

Sport is a relevant context to explore mental illness and identity construction. Interpretive qualitative research has contributed to knowledge of athlete mental health by providing insight that would be difficult to attain through other methodologies (e.g. Busanich, McGannon, and Schinke 2014, Jewett et al., 2018; McGannon, L’Estrange, and McMahon 2020; Papathomas and Lavallee 2010, 2014). For example, studies have explored the intersectionality between athletic and mental illness identities. Specifically, mental illness can threaten athletic identity as the association with weakness is incongruent with elite sport norms (Busanich, McGannon, and Schinke 2014; Lebrun et al. 2018; Papathomas and Lavallee 2010). However, these studies have focused on prevalent conditions such as depression, addiction, and eating disorders. The illness identity associated with a highly contested and stigmatised mental illness label such as a personality disorder has yet to be explored qualitatively within sport (Pereira Vargas et al. 2021).

Personality disorders, in particular BPD (or emotional unstable personality disorder (EUPD) under ICD-11), are among the most highly stigmatised psychiatric disorders (Sheehan, Nieweglowski, and Corrigan 2016). BPD is clinically defined as a pattern of instability in interpersonal relationships, self-image, and affects, and marked impulsivity, recurrent suicidal behaviour or self-mutilating behaviours, chronic feelings of emptiness and difficulty in controlling anger (American Psychiatric Association 2022). The diagnosis is controversial and has been questioned by sociologists, clinical psychologists/psychiatrists, and feminist scholars (e.g. Shaw and Proctor 2005). Namely, criterion validity has been criticised as BPD can have overlapping symptoms with other mental health concerns which can lead to misdiagnosis (Iversen and Kildahl 2022). This is concerning as wrongly treating individuals experiencing other mental disorders/distress as BPD can cause significant iatrogenic harm (Beatson et al. 2019). Iatrogenic harm refers to harm caused by health interventions or professionals which intend to benefit patients and improve health but rather paradoxically diminishes health (Milligan 2003). Further, critics argue the label is highly stigmatising as those with the diagnosis are often labelled as manipulative, attention-seeking and, difficult (Widuch 2021). Such stigmatising perceptions impact how those with the diagnosis evaluate their identity leading to self-stigma (Corrigan et al. 2011). Although research has been conducted addressing public and healthcare professionals’ negative perceptions of this label (see McKenzie, Gregory, and Hogg 2022), there is limited research on the experience of being diagnosed with BPD and its impact on identity construction.

Given that interest in athlete’s mental illness experiences has attracted much discussion in the last few years within public and academic domains, and the lack of focus on such controversial mental illness diagnoses, it is appropriate to contribute insight on athletes’ mental illness identity constructions. Therefore, the aim of this study is to explore how illness identity is constructed by athletes diagnosed with a personality disorder. We asked the following research questions: What narrative resources do athletes use to construct an illness identity? And, in what ways does narrative illness identity shape experience?

Methods

Philosophical underpinnings and methodology

The study was broadly underpinned by an interpretivist paradigm which assumes a relativist ontology and social constructionist epistemology (Ponterotto 2005). As such, we understand meaning is subjective and reality differs between individuals, which means knowledge cannot be objectively observed (Poucher et al. 2021). Critical to our research questions, identity is developed and sustained through storytelling, as people understand themselves through the stories they tell and feel part of (Smith and Sparkes 2009). These stories are constructed through interactions within specific sociocultural contexts; therefore, identity is socially constructed (Crossley 2000).

Reflexivity

The first author is a qualitative researcher with experience exploring athlete mental illness, although not specifically personality disorders. Exposure to personality disorders came through the first author’s participation in powerlifting and subsequent interactions with athletes who had received a diagnosis. This life context supported the decision to study personality disorder diagnosis which informed the formulation of research questions and associated methods, and served as the site for recruitment of this convenience sample. Each of the remaining authors are experienced qualitative researchers, specifically studying issues related to mental health and/or mental illness. The fourth author is also a practicing clinical psychologist with a sensibility towards critical, community, and cultural psychology. Together, the experiences of the wider research team allowed them to act as critical friends and to develop, refine, and challenge interpretations during analysis (Smith and McGannon 2018).

Participants

Following institutional ethical approval, both athletes were provided with study details and invited to participate. Pseudonyms have been used to protect participant identities. Samantha is a female powerlifter in her mid-20s competing at a national level. At the age of 18 Samantha was diagnosed with BPD. Samantha accepts the diagnosis and uses it to understand herself. Alex is a non-binary powerlifter (pronouns they/them) in their early-30s competing at a regional level. In their late-20s they were diagnosed with EUPD. They reject the diagnosis, stating they had been misdiagnosed and have taken steps to remove it from their medical records. Instead, they spent several years seeking an ASD diagnosis and towards the end of the interview period, they received this.

Data collection

A total of nine life-story interviews were conducted (5 with Samantha and 4 with Alex). Interviews ran between July 2021 and December 2021. Life-story interviews seek to explore participant experiences throughout their lives in relation to personal, historical, social and/or environmental contexts (Adriansen 2012). Interview guides were used during interviews to generate discussion around pertinent topics, and questions were constructed after consulting relevant literature. The first interview was conducted with the intention of getting participants comfortable with an interview setting which included asking questions about early life and sporting experiences (e.g. Can you tell me about your early sporting experiences?). Subsequent interview guides were continuously informed by participants’ previous interview responses, which made data collection an iterative, participant-focused process. Although questions developed organically throughout the interview process, topic guides were used to facilitate each interview. For example, questions in the second set of interviews focused on diagnosis (e.g. ‘Can you tell me about the time you were diagnosed?’). The third interviews focused on sport (e.g. ‘What are your experiences of sport whilst experiencing BPD/EUPD?’. For Samantha, the fourth discussed recovery experiences (e.g. What does mental illness recovery mean to you?), whereas for Alex, the fourth interview focused on resistance to the personality disorder diagnosis, and ASD (e.g. ‘Do you remember who you first voiced your resistance towards about the PD diagnosis?’). Samantha’s fifth interview looked at changes in understandings around the BPD diagnosis (e.g. Has the way you feel about having BPD changed at all since you were diagnosed?).

Data analysis

A dialogical narrative analysis was used to analyse interview data, an approach that understands stories as artful representations of lives (Frank 2012). Dialogical narrative analysis is concerned with how stories are put together through narrative resources and the impact that these stories have on people’s lives and identities. The tenets of dialogical narrative analysis are well-suited to an interpretive study on illness identity construction. For example, to explore what is told within the story we asked: what personal and cultural narratives were used to construct athletes’ illness identity? Regarding the impact of these stories, we asked: in what ways does mental illness identity shape experience?

To begin the process of doing dialogical narrative analysis, interviews were transcribed verbatim. Following this, the lead researcher immersed themself in the data by reading and re-reading the interview transcripts. Transcripts were read following each interview and the data which spoke to the study’s research questions was highlighted and initial analytical ideas and comments about participants’ stories were noted. A dialogical perspective understands that storytelling is a relational rather than individual act, in that storytelling is a part of dialogue between two or more voices (Frank 2012). As such, one’s voice is always permeated with the voices of others (Caddick, Phoenix and Smith 2015). In understanding that stories are always told through dialogues, we asked several dialogical questions to help open up Samantha’s and Alex’s stories and consider the different influences on them. The types of questions included a) resource questions (e.g. What narrative resources does the storyteller draw upon to shape their experiences?); b) affiliation and connection questions (e.g. Who will be affiliated into a group of those who share common understandings of a particular story?), and c) identity questions (e.g. what stories give people a sense of who they are?). Data was sought in the transcripts to answer each of these questions for both athletes, whilst acknowledging that stories were not there to be ‘found’ but rather constructed (Riessman 2008). For example, in asking resource questions, we sought to explore how athletes used the cultural resources available to them (e.g. mental illness narratives, critiques of personality disorders) to make sense of their experiences and situate themselves in that story. In asking affiliation and connection questions, we aimed to illustrate the social processes of storytelling and how stories united or separated individuals. Finally, in asking identity questions, we aimed to highlight within athletes’ accounts how alignment to respective stories (e.g. acceptance or rejection) helped athletes to create and sustain an particular identity.

Rigor and ethical considerations

We aligned with the relativist approach of judging qualitative research outlined by Smith and McGannon (2018) to enhance the rigour of this research. Opportunity for reflection was encouraged by the second author who acted as a critical friend. For example, throughout the interviewing and analysis process, the second author challenged the first authors’ construction of knowledge to encourage further reflection, and exploration of alternative interpretations.

Although institutional ethics approval was secured prior to the start of the research (procedural ethics), the authors committed to a model of ethics-in practice and remained sensitive to ethical issues throughout the day-to-day processes of doing this research (see Palmer 2016). For example, we considered the type of population that data was collected from. Participants were considered a vulnerable group or at risk of experiencing distress through their involvement in the study. Therefore, the lead researcher was sensitive towards the reactions of participants during the interviews. From a procedural standpoint, the research team devised steps to preserve the anonymity of participants such as use of pseudonyms and the removal of identifiable information. Similarly, given the potential for psychological distress when discussing mental illness experiences, we ensured participants could halt interviews at any time and provided contact details to various free support services. Finally, to keep participants identities hidden, participants were given the opportunity to check the article for information they wanted removed. Although the data was diligently combed for possible identifiers that might compromise participant anonymity, the limitations of this were recognised (e.g. the use of particular turns of phrase that might be recognisable to significant others). This ensured iterative consent and culturally responsive relational ethics (Smith and McGannon 2018).

Results and discussion

Within this section, we intersperse direct quotes with interpretive insights on how athletes’ illness identity was constructed and the impact of this for experience. These will be presented within two sections, with Samantha’s story presented first, followed by Alex’s. Samantha’s story was characterised by initial acceptance of a BPD diagnosis, whereas Alex’s story was a counternarrative, which presented resistance to the dominance of the medical model and its understandings of mental illness.

Samantha’s story: ‘it made me feel valid’

Samantha recalled that prior to her BPD diagnosis, it was difficult to make sense of her life experiences:

I just felt different, I felt like no one else had this problem and I didn’t know how to handle it … I just needed to figure it out and I [could] not … I couldn’t live with myself … I just wanted someone to tell me what to do and fix me… I wanted all the answers.

Samantha perceived there were no explanations for her experiences (e.g. low mood, difficult interpersonal relationships), which led to the telling of an incomplete and incoherent narrative about her life. Without an explanation for difficult psychological experiences, fear, self-blame, and confusion ensued.

Resolving narrative incoherence: the diagnosis of BPD

Samantha was later diagnosed with BPD, which worked to resolve the lack of coherence and uncertainty she was experiencing in her life: ‘[The BPD diagnosis] made me feel valid… When people ask me why I’m like this, I have an answer… yeah, I’m a bit crazy but at least I know why now, you know?’. Diagnostic labels are a feature of the dominant medical model of mental illness. Freeman (2010) suggests narratives which circulate within a person’s culture make possible identities available. As such, the BPD label acted as a resource for Samantha to understand her own personal mental illness experiences. A diagnostic label ‘explains, legitimises and normalises’ experiences which stray from the norm (Jutel 2010, 229). Labels can be helpful resources for people to resolve an incoherent life story and improve psychosocial health by attributing blame to a ‘disease’ rather than an individual moral failing. In her need to be ‘fixed’, Samantha aligned to medicalised understandings of mental illness which are linked to restitution narratives (e.g. stories of a return to health through medical expertise) (Frank 1995). The idea that mental illness could be fixed through treatment was appealing as it provided Samantha with a narrative map to follow to help escape illness.

Following her diagnosis, Samantha further attempted to make sense of her experiences by finding ways to present her own identity. Samantha did this by reading stories from others with BPD:

My favourite thing to do is read and go through loads of different papers and forums and see if there’s like anything new that people are talking about, or I can relate to like triggers … Seeing a post or an article [about BPD] I think ‘yes yes that’s how I’m feeling!’ … ‘it’s acknowledged, that’s me!’.

Diagnostic labels are an opportunity for connection as they have the power to offer a social identity, and counteract feelings of isolation and difference (Jutel 2010). As Frank (2012) posits, stories connect and affiliate us to groups. Given this, accounts of BPD from others not only provided Samantha with further sense making opportunities, but they also reinforced Samantha’s alignment to, and acceptance of, the medical model and an associated label.

Questioning the medical model: narrative fragility

Although Samantha initially aligned to medical understandings of mental illness through her strong identification with the BPD label, she also shared some reservations:

My therapist had these papers and would ask me things and tick things off. I thought ‘oh god this is the most basic year-3-like test’. Then she says ‘yes, you have [BPD]’. Then I just thought this is like one of those questionnaires you do online which ok fine if that’s how they do it. But you could see that she just whacked it out, gives them to every person and tells them they have something wrong with their brain.

For Samantha the simplicity of the diagnosis process and the idea that her complex personal experiences could be reduced to a simple test undermined the authenticity of the medical model.

There are dangers in accepting an inauthentic narrative. By telling a story that does not connect with current life conditions, the development of a person’s authentic self is limited (Crossley 2000). The guiding narrative which Samantha first aligned to was not as stable as she once thought, jeopardising the benefits gained from initially accepting the diagnosis. Specifically, with her acceptance of the medical understandings no longer as strong, her commitment to therapy is duly weakened: ‘I couldn’t be bothered to come back’. Although diagnosis is essential to providing people with appropriate care and treatment (Campbell et al. 2020; Corrigan 2007), in this case, the diagnosis process weakened its acceptance which deterred Samantha from pursuing and buying into treatment.

The troubling side of mental illness acceptance: the impact of stigma

Samantha recognised there were negative connotations associated with BPD, as behaviours that typify the label (e.g. impulsivity and emotional instabilities) were associated with language such as ‘psychotic’, ‘crazy’, and ‘difficult’. Given this, Samantha chose to conceal her illness identity from family and friends: ‘It is annoying … I have these two identities: one with [family] and one away from them. I don’t want to have to hide things, and it feels fake’. Although telling her story helped Samantha connect to others with BPD, giving her a social identity and lessening feelings of isolation, her story also repels others in her life who are placed outside of that connection (Smith and Monforte 2020).

Samantha was also able to hide her stigmatised identity through sport by projecting an athletic identity that was not tied to her illness:

I feel completely like [powerlifting is] the one place where I’m truly in my element and feel myself … it doesn’t fully erase [BPD] but it really does suppress it a lot and make me feel so much better. These people that see me lift, they see the strength and not the weakness that I have, and they don’t know. It’s the external bit that they see. When they look at me, [they] probably don’t think ‘oh that girl would cut my head off’, they probably just thought ‘she’s so strong and powerful, she must be so secure within herself’. It’s nice that people think that at first. It makes you less vulnerable when your exterior is so tough.

Powerlifting provided a means for Samantha to project an identity to others which was one of a strong, secure athlete; and hide her illness identity which she perceived was weak and vulnerable. Samantha’s presentation of a tough exterior, aided through sport, adds complexity to her story which was not provided by the medical narrative she told. These identities were used interchangeably; an illness identity was masked through the projection of an athletic identity to non-athletes but projected to other athletes with similar stories of illness. Echoing Carless’s (2008) case study of living with schizophrenia, sport was used as more than just a means to alleviate mental illness symptoms; sport contributed a sense of meaning and purpose for Samantha. Sport also provided a space where Samantha connected with other athletes’ stories of mental illness: ‘A lot of people I’ve met through powerlifting have their own issues and it does help … you do bond with people who have their own issues’. Although mental illness diagnoses can act to emphasise fundamental differences between the self and others, meeting others with similar concerns reduces feelings of ‘otherness’ (Read et al. 2006). Interactions with those who also experience mental illness can challenge stigma through enhanced social connectedness, feelings of belonging, and empowerment (Naslund et al. 2016).

Samantha suggested the social stigma created by stereotyped perceptions of BPD that largely align with the medical narrative she lived by, were reinforced in the media and online. The following conversation between the lead researcher and Samantha draws attention to the impact which such perceptions had on her:

Samantha:

If other people are saying ‘if you know someone who has BPD, just don’t get involved, run’, they’re literally saying that it’s not fixable… You already know these things about yourself and feel that you’re difficult and not worthy, and when other people pile on top of it, it just makes things worse and you’re not taking the steps forward, you just take steps back.

Researcher:

When you hear these things, you believe these things about yourself?

Samantha:

Yeah of course because they’re not wrong… I know how time consuming and exhausting and draining it is, it’s so unstable and so rocky so I would say that yes, I believe these things that are said.

The excerpt above presents just one example of how dominant understandings of mental illness can impact individuals’ wellbeing. Further, this account highlights the risks that come with living by the medical narrative of mental illness. Associated stereotypes of BPD influenced Samantha’s self-identity shown through her descriptions of herself as ‘not worthy’ and ‘difficult’. Here, Samantha acknowledged, and in some ways sustained, the stigma associated with the label she identifies with; resulting in self-stigma or a ‘spoiled identity’ (Goffman 1963), whereby characteristics which are stereotypically associated with a group become a part of a person’s identity (Ociskova et al. 2017). This is shown through Samantha’s use of self-stigmatising language (e.g. ‘toxic’, ‘psychotic’). In sum, although the acceptance of the BPD label provides Samantha with validation and self-acceptance, the reliance on a dominant medical storyline leaves her at risk of internalising the unhelpful discourses associated with the BPD label.

Evolving the medical narrative of mental illness

Although initially Samantha understood mental illness through a deficit lens, over time this understanding changed. With the medical model of mental illness already on shaky ground following her unsatisfactory diagnosis experience, and with recovery failing to materialise, Samantha began to redefine her understandings of her illness:

[Recovery] means progress … recovery doesn’t mean you’re going to be fully recovered but you’re striving to be as close to that as you can, whilst being fully aware that you will probably never get exactly to that point of normality. Realising that has helped me.

Samantha began to construct recovery as a journey, in line with growth-oriented perspectives of recovery (Jacob 2015). The recovery model offers an alternative to the medical model’s assumptions of mental illness that suggest recovery has an objective outcome (i.e. a cure). Here, Samantha challenges the ‘full recovery’ narrative associated with complete alleviation of symptoms (Shohet 2007). Samantha’s story highlights that even when a dominant and desirable narrative is adopted, it can be adapted. That is, although she uses medical understandings to narrate her life story and accept an illness identity, she holds agency to evolve this storyline when it comes to constructing recovery meanings.

Alex’s story: ‘it’s not actually who I am’

Alex presents a counternarrative to medical perspectives of mental illness. Alex’s story of resistance formed the basis on which their identity was established:

First of all, I don’t think I have it, secondly the caveat to that is I don’t think personality disorders should be a thing. I just don’t think people should be given that diagnosis and they should actually just address what’s going on like neurodiversity or trauma or whatever. I don’t feel as though this diagnosis fits so why should I have this label, but you guys have put this on me when I believe it’s something else and it’s a misrepresentation of me and who I am and it’s the paper version of me.

Alex’s story is distinct in that when dominant narratives are presented to a person, these are often accepted as there are no alternative resources to tell an alternative story, much like with Samantha (McLeod 1997). When personal experience is misaligned with the narrative resources available, it can lead to psychological tensions and poor mental health (Crossley 2000). When Alex was unable to align their experiences to the ‘paper version’ of themself, they described feelings of confusion and distress. For example, they suggested they did not express anger in the way that the diagnosis suggested: ‘I’m not angry or manipulative outwards’.

Alex went on to resist dominant cultural narratives of mental illness by telling a counternarrative, which was characterised by activism and rejection of the personality disorder diagnostic label:

It was just slowly through reading and meeting fellow peers that I became more knowledgeable… I found out that [BPD] was actually a common misdiagnosis for females and queer people, it all just fell into place. That’s when I went ‘oh this is a common thing, it isn’t just me it’s happening to’ and that made me really want to fight it and actually try and talk about it and let people know.

Alex’s resistance aligns with critical perspectives on mental illness which question the legitimacy of the medical model and psychiatric power (see Richter and Dixon 2023 for a review of different critical perspectives). For example, Ussher (2017) explain women and queer people experience significant gendered oppressions when engaging with mental health services, which contextualises Alex’s negative mental health service experience.

Feminist critiques argue that personality disorders pathologize the way in which women respond to abuse and oppression (Berger 2014). Alex was exposed to such critical feminist perspectives of personality disorders which helped construct their counternarrative and re-construct their illness identity:

[BPD] is very misogynistic because if females or queer people show anger—and of course we get angry, we’re fighting against a system that’s not listening to us, then that’s pathologized. If a man gets angry, they don’t get given a diagnosis of a personality disorder … [Psychiatrists] see risk taking behaviour as a [symptom] so like drinking, drugs, sex, self-harm, spending, things like that. If you look at all of that and get like a cis man doing any of those behaviours and then a woman or queer person doing those behaviours, that’s going to be subjectively seen as not appropriate.

Echoing Smith and Monforte (2020), narratives do not always determine action, and people do not always passively do what a narrative teaches them to. Therefore, through access to counter stories of personality disorders, Alex was given the opportunity and flexibility to re-story their life and live in a more meaningful way as they expanded their identity (McLeod 1997). Alex’s story shows that even the most pervasive narrative can be rejected if there is access to alternative narrative resources.

Alex’s identity centred on not having a personality disorder and fighting the diagnosis, which was their form of activism. As an activist, Alex advocates for change, as they quote, by ‘challenging and critiquing the system, through living in [a] marginalised or oppressed group’. Alex rejects dominant narratives and attitudes that socially oppress individuals, and places great value on speaking from experience as a form of activism (see Shaw and Proctor 2005). Therefore, Alex’s counternarrative is one which challenges the taken-for-granted assumptions of mental illness, which pathologizes human experiences. These findings support work recommending the use of counternarratives for reconstructing identity (Carless 2008; Smith and Sparkes 2005).

Re-storying illness identity: sourcing a new diagnosis

Despite Alex’s rejection of medical discourses around personality disorders, they acknowledged the value of diagnoses in providing a person with validation, which is why they sought an ASD diagnosis, as they identified with being neurodivergent. Neurodiversity is used to describe a manifestation of genetic diversity, typically associated with conditions such as ASD (Chapman 2020). Therefore, the neurodiversity movement challenges the medical model’s focus on dysfunction, causation, and cure (Kapp et al. 2012), focusing instead on subjective wellbeing and the de-pathologising of difference (Chapman 2020). In using language such as ‘we’ and ‘us’ throughout the interviews, Alex positioned themself as part of this group.

When questioned by their therapist ‘Surely you are just replacing the label with another?’, Alex rejected this observation, stating ‘but being autistic isn’t negative’, in fact ‘it’s validating’. Alex described a ‘lightbulb moment’ when they came to the realisation they may have been misdiagnosed with a personality disorder, and that instead an ASD label may be a better fit. Through identification with the ASD label, Alex was able to reconstruct their life story to one which made sense to them. Therefore, the fight for a new diagnostic label went beyond just replacing one label with another as Alex’s therapist had suggested, but rather replacing a diagnosis which invalidated experience with one that was validating.

Although Alex strongly identified with the autism label, they spoke in-depth about the emotional and practical difficulties they faced in getting ASD diagnosed:

Everyone always needs proof on paper … you get a lot of people who are like ‘do you have an official diagnosis?’ and when I say no, they’re like ‘well you’re making it up then’ and I’m like for fuck’s sake, self-diagnosis is valid especially when the reason you can’t get a diagnosis is because there’s no pathway and you’re not rich. Although I have got to the point now where … I am able to save up and pay for a private diagnosis after 7 years.

Alex’s account represents the commonly reported challenges of many adults who are unable to obtain a formal ASD diagnosis and therefore must rely on a self-diagnosis (Lewis 2016). Alex used online platforms to explore the diagnosis further (e.g. forums, social media, YouTube) whilst awaiting an assessment and whilst trying to navigate a misdiagnosis.

Alex also recounted the practical challenges of self-diagnosis within a therapy setting. Alex’s therapist was restricted to practicing in line with the diagnostic label currently on their medical records; which led to Alex’s concerns and behaviours to be pathologised:

The psychodynamic therapy is not helpful for me, it in itself is quite traumatic just because of how invalidating it is. I end up being so exhausted by the end of it and feeling like crap and I think ‘oh god am I making this all up?’ … you end up in a situation where you experience harm and distress from a system that is meant to be supporting you … You’re stuck in a cycle that’s particularly pertinent to having a PD label because if you try and challenge the system and fight it and be assertive and stand up for yourself then that’s then pathologized as you being manipulative … That’s the kind of challenge of living with a really pervasive condition or label that is generally incorrect and pathologizes trauma and neurodiversity.

Lewis (2016) suggests it is important that those working with those who self-diagnose are mindful of their own biases and preconceived judgements about self-diagnosis to avoid harm, and understand the practical difficulties in attaining a formal diagnosis. This is particularly pertinent as research has indicated that a personality disorder can be a common misdiagnosis in autistic adults before their autism is formally recognised (Iversen and Kildahl 2022).

As Smith and Monforte (2020) explain people cannot simply tell any story about their lives and expect it to be believed. Although Alex found resources to shape their experiences; without an official diagnosis, their story is questioned. Alex is unable to tell the story about their life that they want, as they are constrained by the dominance of master narratives of mental illness. Systemically, medical diagnoses are privileged over personal experience (Malterud, Candib, and Code 2004). Therefore, in an attempt to have their story heard, Alex goes on to privately source an ASD diagnosis.

Seeking connection through illness stories

A consideration of who Alex’s story connected them with helped to understand what groups could be formed through the telling of a counternarrative (Frank 2012). In identifying with the autism label, Alex sought experiences from this group to enhance feelings of connectedness: ‘It’s reassuring to read the experiences of other people and have those shared experiences and just feel less like an alien’. A way in which identity is constructed and maintained is through sharing mutual stories (Frank 2012). As such, Alex uses these stories as a tool to learn more about themselves:

I’m trying to undo years of internal ableism and I’m slowly learning that that a lot of the things that I do are masking and so by reading the work of other autistic people and neurodivergent people or watching YouTube videos, it’s really helpful because it’s like if you’ve got that community and network of people and you realise no it is ok to be you… I found my people.

Alex’s account suggested that the dominance of ableism within society (Richardson and Motl 2020) led them to engage in ‘masking’. Masking is an artificial performance of social behaviours which are deemed to be more acceptable in society, thus suppressing aspects of the self to appear ‘normal’ and avoid harm such as stigma (Miller, Rees, and Pearson 2021). In masking, Alex is rejecting their identity by hiding their authentic self, causing them to experience mental distress (e.g. invalidation, autistic burnout, see Raymaker et al. 2020). In finding ‘my people’, Alex expressed an identification with this group through shared storytelling. Becoming a member of this ‘outgroup’; defined as people whose marginality defies the boundaries of mainstream and whose voice has been supressed (Delgado 1989), further strengthened Alex’s counternarrative and neurodivergent identity, leading them to unmask.

Alex performed their real identity to other neurodivergent people and to fellow athletes who were understanding of them. For example:

One of my friends saw me going through my ADHD diagnosis… And she said, ‘oh my god, I’ve thought I’ve had ADHD for ages, and I just didn’t know if I should go ahead with the diagnosis stuff’ and she’s now got through the same process as I did, she’s waiting for an assessment.

The example above reiterates Frank’s (2010) assertion that ‘stories call individuals to groups and, they call on groups to assert common identities’ (p. 10). Encountering such stories strengthened Alex’s resistance to dominant narratives of mental illness.

Final reflections

The purpose of this study was to explore how illness identity was constructed by athletes diagnosed with a personality disorder. Through dialogical narrative analysis, we identified how certain narratives were used to construct life stories and identities. For example, following the diagnosis of a personality disorder, athletes went on to construct identities that resonated strongly with personal experience. Samantha’s alignment to medical understandings of mental illness and the acceptance of a BPD label was better than the alternative: no explanation for her feelings. Medical understandings of mental illness provided with a useful blueprint to interpret what was happening in her life (Syed and McLean 2022). In contrast, Alex’s story of resistance is an alternative to dominant medical narratives which typically guide athlete mental illness stories (e.g. Busanich, McGannon, and Schinke 2014; Papathomas, Smith, and Lavallee 2015). Not only was Alex’s identity constructed around being neurodiverse, but also constructed around not having a personality disorder, which acted as a form of activism. Alex’s narrative highlights the benefits that come with access to an alternate narrative and the opportunity to flourish through re-storying a life (Phoenix and Smith 2011).

Although participants’ stories focused predominately on their wider lives and their efforts to story an authentic illness identity, this should not negate the relevance of this research to applied sports practice. First and foremost, the participants in this study are athletes, and if we are to treat athletes as people first rather than commodities, then their life challenges beyond sport are of direct relevance to applied sports practitioners. The experience of the person should not be artificially separated from the experience of the athlete, or we risk an athlete mental health research base that only considers environmental stressors and responses. With this said, the stories in this study present several applied implications. Sport did play an important role in Samantha and Alex’s lives and their identities. Our results contradict the dominant idea that mental illness identity conflicts with athletic identity. For example, research has suggested that that mental illness associations with weakness contrast athlete associations with strength, a burdensome tension for athletes to manage (e.g. Busanich, McGannon, and Schinke 2014; Lebrun et al. 2018). Rather, our findings suggest these seemingly contrasting identities can work in harmony; with athletic identity protecting the mentally ill self from persistent scrutiny. That is, as athletic identity is foregrounded, participants experienced respite from the challenges associated with their illness identity.

Previous literature has tied the incompatibility of an athletic and illness identity to a lack of help-seeking in athletes, due to fear that athletes will be stigmatised as mentally weak (Crawford et al. 2023; Pereira Vargas and Winter 2021). However, for Samantha and Alex, negative discrimination occurred in their wider lives, whereas sport became a place of refuge. The lack of stigma experienced within this space, which the participants suggested was due to other athletes sharing similar experiences, facilitated their own disclosures. Future research should explore such unique athletic cultures and consider how they are able to offer safe and supportive environments for athletes living with mental illness.

Athlete accounts highlighted the importance of athletes developing their own understandings of mental distress and mental illness. Helping athletes to construct understandings of mental illness solely through the medical model and its diagnostic criteria may be limiting the development of a coherent sense of self for some (Woods, Hart, and Spandler 2019). However, master narratives typically operate beyond one’s awareness (Syed and McLean 2022), therefore loosening the hold which dominant narratives have on people in narrating their illness story is a difficult task. Narratives are ways of negotiating identities, so it is important to provide athletes with the opportunities to narrate their own stories and align themselves to narratives that fit with their sense of self (McLeod 1997).

Accounts within this study point towards the potential beneficial use of narrative therapy for athletes who are in need of a more authentic narrative to live by (Ricks et al. 2014). For example, Samantha experienced narrative misalignment as she began to question the medically informed restitution narrative which she initially aligned to. Through narrative reconstruction, Samantha was able to mould a narrative to better suit experience and reconstruct her understandings of recovery. This occurred in the aftermath of an unpleasant diagnosis experience. She began adapting the storyline she lived by, which inferred mental illness recovery was synonymous with ‘cure’, to a story where recovery was a journey. There may be athletes who, unlike Samantha, are unable to construct an authentic narrative due to a lack of exposure to counternarratives. Narrative therapy can help facilitate these individuals to form an awareness of the impact of the (potentially harmful) narratives that they live by (McLeod 1997). Future research should explore how non-traditional psychological practices such as narrative therapy might be used to better support athletes living with mental illness.

This study also questions the extent to which athletes should be encouraged to help-seek and receive treatment for diagnoses that might not be accepted. Purcell, Gwyther, and Rice (2019) framework for help-seeking suggests there is an important need to honour athlete’s preferences for help-seeking and equip stakeholders to better recognise and respond to mental health concerns. Alex’s experience illustrates that it may not always be appropriate to provide specific treatment for a diagnosis that an athlete does not identify with as this can increase distress. However, honouring athlete’s counternarratives should not come at the cost of risking athlete’s health and should therefore be assessed on a case-by-case basis. For example, in the case of an athlete with an eating disorder who perceives they do not have a problem, it may not be possible to honour their counternarrative given the risk to health posed. Future research may explore how applied practitioners might navigate this difficult terrain. Specifically, researchers could explore how personal counternarratives can be honoured while remaining vigilant to the destructive consequences of mental illness.

Both athletes presented narratives which are not often heard within sport and society. For example, stories of personality disorders and neurodiversity have not been explored qualitatively in sport (Pereira Vargas et al. 2021), and stories of rejected diagnoses are rare due to the benefits mental illness labels can sometimes provide a person (Jutel 2010). Through hearing stories like Samantha and Alex’s, more education and inclusive environments can be created for athletes with mental illness and neurodiversity. Stories which question widely accepted ‘truths’ of mental illness raise awareness that illness labels are simply constructions which can change. In presenting athlete stories of BPD and neurodiversity, we contribute to the qualitative literature on athlete mental health; as well as to athlete activism literature (e.g. Smith, Bundon, and Best 2016). We encourage future research to consider exploring athlete stories of mental illness and distress outside of more commonly discussed mental health conditions. Doing so can both enhance understandings of different athlete concerns and specifically how to support these athletes, as well as illuminate the voices of athletes who are rarely heard. In this research, participant narratives performed identity, expressed values, and showed the various ways mental illness diagnosis can be made sense of. More stories are needed if understandings of athlete mental ill health are to move beyond symptom identification and prevalence rates. Such stories may be collected through diverse qualitative methods that invite athletes to recount their lives in different ways, for example, through written participant stories, creative methods such as visual methods, or ethnography (e.g. Day et al. 2023; Ing and Mills 2019; Phoenix 2010).

Conclusion

This study is the first to qualitatively explore illness identity in athletes with severe mental illness and neurodiversity. Through privileging such stories, which to our knowledge are limited within qualitative literature, we have offered unique insights into how athletes interpret mental illness labelling and construct an illness identity. Although athletes presented contrasting understandings of mental illness, both understood their alignment to their respective narratives as helpful in constructing a coherent identity. Findings extend knowledge of athlete mental illness beyond medical perspectives, to include illness identity construction and the ways personal and cultural narratives interact to shape the self and the experience of mental illness and neurodiversity.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Maria Luisa Fernanda Pereira Vargas

Maria Luisa Fernanda Pereira Vargas is a Doctoral Researcher in the School of Sport, Exercise and Health Sciences at Loughborough University, United Kingdom. Luisa’s research uses primarily qualitative methodologies to explore mental illness within sport focusing on athletes’ subjective experiences.

Anthony Papathomas

Anthony Papathomas is Senior Lecturer in Sport and Exercise Psychology within Loughborough University’s School of Sport, Exercise, and Health Sciences. His research is informed by interpretivism, and he deploys qualitative methodologies to explore the experiences of marginalised groups. Anthony’s principal focus is mental health in sport and specifically athletes living with mental illness. His research has been funded by organisations such as the English Institute of Sport and the International Olympic Committee.

Florence-Emilie Kinnafick

Florence Kinnafick is a is a Chartered Psychologist with the British Psychological Society and Senior Lecturer in Exercise Psychology in the School of Sport, Exercise and Health Sciences, Loughborough University. Florence’s research focuses on the role of physical activity and sport for mental health and management and recovery of mental illness including the social contextual and environmental determinants of engagement in physical activity and sport.

Paul Rhodes

Paul Rhodes is an Associate Professor in Clinical Psychology at the University of Sydney and Research Fellow in Earth Emotions at The Sydney Environment Institute. His teaching and research relates to cultural responsiveness and decolonisation in psychology, family and community-based forms of therapy, the cultural basis of psychopathology, embodiment, art-based and narrative methods, innovations in qualitative inquiry and others. He is a practicing artist specialising in climate art and the representation of internal landscapes.