Advocacy through storytelling: Challenging Eating Disorders and Eating Disorders Stigma

Advocacy through storytelling: Challenging Eating Disorders and Eating Disorders Stigma | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Advocacy through storytelling: Challenging Eating Disorders and Eating Disorders Stigma Kiana Habibagahi, Michel Ferrari This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3997775/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 19 Sep, 2024 Read the published version in Journal of Eating Disorders → Version 1 posted 9 You are reading this latest preprint version Abstract Background : Although eating disorders (EDs) are among the most stigmatised mental illnesses, a number of individuals break past this stigma and engage in ED advocacy by sharing their recovery stories. Little is known, however, about the role of such advocacy in their healing journeys. Methods : To bridge this gap, this study examines the role of autobiographical oral storytelling in the ED recovery of adult advocates. Autobiographical oral history interviews were carried out with adult advocates (n = 16) recovering from EDs. The data were analysed using a mixture of Semiotic and Actantial analyses. Results : Advocates chose to share their ED stories as a way to embody resilience and make meaning from their ED experiences. Beyond personal gains, the social benefits of sharing their stories included raising hope and openness to converse further with audiences, advocating for greater ED resources (e.g., ED literacy among school staff), and offering new training initiatives for healthcare professionals. Conclusions : Engaging in advocacy through storytelling can positively affect both the advocates and the audiences with whom they connect. Future studies, informed by feminist biopsychosocial frameworks, can examine storytelling as a therapeutic intervention. Such frameworks serve as alternatives to biomedical models of EDs and mental illnesses. They also emphasise the need for broader changes that destabilise oppressive body cultures and display how storytelling can help mobilise change. eating disorder stigma storytelling Actantial analysis. Figures Figure 1 Plain English summary Eating disorders (EDs) have been identified as one of the most stigmatised mental illnesses, making it difficult for individuals to seek professional help or disclose their mental health situation. Nevertheless, a handful of individuals become advocates who combat this stigma by sharing their personal struggles and ongoing healing journeys. This study thematically analysed the experiences of such advocates while identifying the personal and social benefits of their storytelling advocacy. The outcomes of this study suggested that advocates found these storytelling initiatives to be deeply meaningful because they were able to reflect on how far they had come while increasing hope among audiences that recovery is possible. The findings from this research support the ongoing need for novel interventions against ED stigma, including the potential to incorporate storytelling as a way to normalise conversations on ED while enhancing the resilience of individuals undergoing recovery. Interviewer: Would it be fair to say that advocacy positively contributed to your recovery? Chloë : It played a huge part. I think eating disorders exist with so much isolation, shame, and stigma that [advocacy] felt like a breath of fresh air. My eating disorder was no longer a secret. For more than two decades, eating disorders (EDs) have been one of the most stigmatised mental illnesses (1, 2). Stigma can force people to live with their illness in secrecy, preventing help seeking and exacerbating the culture of silence surrounding the disorder (3). Nevertheless, some people successfully overcome this stigma and seek professional help. Like Chloë in the quote above, others go a step further by advocating for greater awareness of and social change in EDs (4, 5). Oral storytelling is one avenue for advocates to raise awareness of mental illness, combat stigma, and demonstrate how recovery is possible. Such advocacy canmaintain their path toward recovery because of the opportunities for self-reflection and social connectedness that it incurs (6). These advocates often receive intensive training on how to share their stories with audiences (7).Chloë’s quote also highlights how advocating for and disclosing one’s mental illness can invoke strong positive emotions (e.g., “breath of fresh air” as a metaphor for a sense of relief, freedom, etc.) (8,9). They occasionally adapt the story’s delivery or narrative (e.g., changes in tone or word choice for different audiences), although the story’s contents remain the same. Doing s’ encourages them to reflect on their experiences from new angles, enabling their stories to grow and evolve as they do (10). Despite the therapeutic potential of storytelling and advocacy(11) for EDs (4), there are few studies on how ED-recoverees use their recovery stories to engage in advocacy and advance their healing journeys. To our knowledge, this study is the first to examine how ED advocacy through oral storytelling contributes to the healing of young advocates, including how storytelling enables them to combat stigma. Background Eating Disorder Stigma Because stigma has been a key barrier to seeking and continuing treatment for EDs ( 12 ), individuals may lose the opportunity to receive treatment (e.g., 13). Although ED stigma remains underexplored ( 14 ), it is among the most stigmatised mental illnesses ( 15 ). EDs are highly stigmatised because people perceive EDs as personal choices, making people more likely to blame individuals for their EDs–which has been reported for healthcare professionals ( 16 ), young adults ( 17 ), and adolescents ( 15 ). The media portrayal of ED also contributes to people’s negative beliefs and attitudes, from equating anorexia to skeletal bodies or binge eating disorders to lacking self-discipline ( 15 ). These portrayals elicit negative emotions (e.g., fear, anger, disgust) and avoidance toward those with EDs ( 18 ), exacerbating their distress and further impeding their help-seeking ( 15 ). Likewise, individuals may internalise this stigma, believing that they are incompetent, weak, and powerless against their ED ( 18 , 19 ), which negatively affects their self-esteem and worsens their psychological well-being. These two outcomes are risk factors for EDs, entrapping the person in a vicious cycle where stigma delays help seeking, worsens ED symptoms, and prolongs the disorder ( 20 ). Finding ways to understand and target stigma, including through contact-based ED interventions, may therefore have key social benefits ( 21 ). Combating Stigma Through Storytelling Storytelling is integral to contact-based educational interventions that seek to combat stigma and educate audiences on mental health. These educational presentations on mental health enable audiences to connect with the speaker’s own lived experience ( 22 ); speakers can incorporate their recovery stories into such presentation, ensuring to do so safely (e.g., without graphic details) while spreading positive messages of hope ( 23 ). For example, Jack.org is a national mental health charity with certified speakers who share their personal mental health stories ( 7 ). Their first-person accounts help audiences humanise mental illnesses and empathise with the experiences described ( 24 ). Hearing the speaker’s recovery journey also raises hope that healing is possible for members of the audience and others who are struggling with this illness ( 23 ). While audience receptivity to these interventions may vary (e.g., more effective for youth participants or participants without mental illness), contact-based programs have been identified as one of the most promising ways to combat stigma ( 25 , 26 ). The altruistic intent to share one’s story in such contexts also relates to a more positive evaluation of the self ( 27 ) because the person can engage in meaningful activities that contribute to society ( 28 ). Such storytelling interventions can therefore serve as effective ways to address stigma while developing positive attitudes toward seeking help ( 29 ). Storytelling as a way to Transform and Heal the Storyteller Storytelling is a type of creative expression that positions the storyteller’s thoughts in the world. For Maurice Merleau-Ponty, words are our thoughts not mere representations of it, saying “we indwell language in the same way we indwell our bodies, and through them both we indwell the world” ( 30 ). This theoretical account aligns with empirical research highlighting the deep connection between the storyteller and the positive impact of storytelling on their lives ( 26 , 27 ). Storytelling can also become both a valuable form of healing and a tool for advocacy in mental health contexts. Autobiographical storytelling, for instance, can aid trauma recovery if people can situate their trauma within their wider life narrative ( 31 ), engage their imagination ( 33 ) and capture nuances of their life in ways that motivate them to restructure their experiences in personally meaningful ways ( 34 ). Storytelling can also voice service-user experiences to healthcare providers and promote mutual understanding of their lived experiences ( 27 , 28 ). Despite the healing and educational potential of storytelling approaches, few empirical studies are available on the subject, while virtually no studies have been conducted on the use of oral storytelling as a means of ED advocacy. As such, this study qualitatively examines the effect of verbal storytelling on the experiences of ED advocates throughout their lives. Methods Study design This study qualitatively analysed autobiographical oral histories provided by adult ED advocates. The virtual interviews were audiotaped and transcribed. Informed consent and ethics approval were provided prior to the interviews, with extended consent obtained from the University of Toronto. Semi-structured oral history interviews were conducted to obtain the advocate’s autobiographical narrative and explore how EDs appeared, manifested, and were later resolved in their lives ( 36 ). An ecological systems framework was used to design the interview questions that included proximal and distal factors that may have influenced the ED ( 37 ). The interviews also included questions about participants’ hopes for future ED research and advocacy. Finally, a sentence completion task adapted from Loevinger’s 1979 study was used to uncover implicit instances of resilience among participants ( 38 ). The interviews were conducted virtually on the Zencaster recording platform. Only interview audio was recorded. Zencaster created the recording transcripts, and the research assistants manually corrected any transcript errors. Participants This study used purposive criterion sampling to identify the people most experienced in the phenomenon of interest who were willing to engage in the studies ( 39 ). Participants were recruited using the internal mailing system of Jack.org and through social media accounts of Sheena’s Place, a charitable organisation offering group-based support for those affected by EDs or disordered eating. The selected participants were adults ( 18 – 60 ) in Canada who had been trained by that organisation to share their ED recovery stories safely. Participants were excluded if ( 1 ) they had not spoken publicly about their ED recovery, ( 2 ) the ED severely impacted their daily functioning, or ( 3 ) they felt uncomfortable or unsafe discussing their ED history. In all, 16 participants consented to being interviewed virtually and recorded (i.e., audio only) and for their interviews to be available on an open ED-recovery podcast at least 48 hours before the interviews via e-mail. The consent process was also reviewed with participants prior to the interview. Mental health resources were made available to all participants, and access to an on-call mental health professional in training (with ED experience) was provided. Participants were also assured that they could anonymize their interview data at any point before the interview audio was published online. Three out of the 16 participants chose to remain anonymous, and all identifying information in their interviews was removed. Table 1 shows the demographic characteristics of the participants. Table 1 Demographic information of advocates. Advocate Age Gender Ethnic Background Allison 25 Cis Woman White (Caucasian) Anon 37 Cis Woman South Asian origins Anon2 18 Cis Woman White (Caucasian) Anon3 39 Cis Woman White (Caucasian) Ashley N 30 Cis Woman White (Caucasian) Ashley S 42 Cis Woman White (Caucasian) Betsy 60 Cis Woman White (Caucasian) Caitlin 35 Cis Woman White (Caucasian) Catherine 31 Cis Woman White (Caucasian) Daphne 24 Cis Woman Latin, Central and South American origins, West Central Asian and Middle Eastern origins Jay 24 Nonbinary East and Southeast Asian origins, Other Asian origins Kat 25 Cis Woman White (Caucasian) Olivia 29 Cis Woman White (Caucasian) Patrice 23 Cis Man White (Caucasian) Sarah 27 Cis Woman White (Caucasian) Sophie 22 Cis Woman White (Caucasian) Data analysis This study used NVivo12 software to qualitatively analyse the data. A mix of semiotic analysis ( 40 ) and actantial analysis ( 41 ) was used to explore the structure of young people’s ED narratives and the stories of how ED advocacy plays a role in their lives. In this article, only discussions of advocacy and recovery are presented. Semiotic analysis was used to highlight the overarching themes and subthemes. In the first stage of grounded theory, the first author (KH) used two exemplar interviews to familiarise herself with the interview data and generate initial codes (i.e., open coding). Two more interviews were used to organise and recursively revise hierarchal themes and subthemes (i.e., axial coding). Selective coding began once the organisation of the themes was reviewed by the second author, Dr. Michel Ferrari. Themes were recursively reviewed, redefined, and reorganised through discussion. Actantial Analysis Actantial analysis was used to explore how the recovery stories were constructed ( 41 ). Although originally intended for literary texts ( 42 ), this approach has recently been applied to analyse the deep structures of oral narratives ( 43 , 44 ). To the author’s knowledge, this is the first study that has used the actantial model to explore the life stories of EDs . The model argues that every event can be broken down into six actants that are mapped onto 3 pairs of binary oppositions: Subject-Object (axis of desire) , highlighting the quest of the story; Helper-Opponent (axis of conflict) , supporting or opposing the subject’s achieving their object(s); and Sender-Receiver (axis of communication) actants, where senders initiate the establishment of the subject-object relationship and Receivers benefit from it. Activity Theory We also used activity theory ( 45 ) to illustrate how motivation translates into action within a community network that extends beyond the individual. As shown in Fig. 1 , in this view, embodied experiences and motives shape a person’s reason for acting. The figure also identifies several system mediators, including tools (e.g., language and social media), which mediate how this object is carried out. Likewise, rules mediate the subject-community relationship, while the division of labour mediates the relationship between the object and community. Rules are a result of social conditioning, influencing how and why individuals act. The division of labour determines the different growth of community workers that helped them carry out the given social activity. Finally, outcomes refer to the consequences of the activity. The Results and Discussion section uses Actantial analysis to identify key narrative themes and further contextualises and expands upon these results using activity theory. Results & Discussion This study used autobiographical narrative analysis to explore how storytelling influenced the ED recovery of young advocates. This paper explored the ongoing recovery stage during which the advocacy and storytelling journey began. For our purposes, the advocate was the Subject , and their recovery from the ED was the O bject . Actantial analysis identifies the key actants that initiated recovery (i.e., Senders), encouraged recovery (i.e., Helpers), hindered recovery (i.e., Opponents), or benefited from the recovery process (i.e., Receivers). These actants were further organised according to affective (i.e., emotions or feelings), cognitive (self-perceptions of their emotional and physical self), and sociocultural processes. Since the axis of desire is straightforward (subjects desire to overcome their EDs, which is the object of their story), we focus our analysis on the axes of conflict (helper-opponent) and communication (sender-receiver). Table 1 Helpers and Opponents Throughout Recovery. HELPER OPPONENT Affect Self-perception Social Interactions Affect Self-perception Social Interactions Hope Relief Gratitude Happiness and excitement Transform into resilient self Find belonging thanks to support systems and advocacy work Shame Self-judgement Sadness Will never be good enough as they failed to meet social standards of “full” recovery Harmful body culture and ED stigma Culture of invalidation Poor knowledge of EDs Table 2 Senders and Receivers Throughout the Recovery Period. SENDER RECEIVER Affect Self-perception Social Interactions Affect Self-perception Social Interactions Feelings associated with insight Awareness of/insight into ED (e.g., by hearing someone else’s story) Prosocial upbringings and purpose to help others Pride Cultivate self-worth (e.g., realise their story matters) Altruistic desire to share story (e.g., help others know they are not alone) Encourage ED literacy Challenge ED stigma Apply lived experience to improve/introduce ED prevention initiatives & treatments Senders: Initiating Activity In our actantial analysis, Senders initiated the recovery process: gaining awareness of the harmful nature of ED (Self-perception Senders) or realising their desire to help others (Social Senders) prompted them to pursue recovery. Gaining awareness of the ED’s destructive nature was the Sender, or first step to initiate recovery and engage in ED advocacy. Advocates gained this insight by listening to the vulnerable and personal accounts of community leaders or role models (e.g., coaches and supervising professors): Allison One of my coaches in high school talked about her journey with an eating disorder and that got me thinking. She shared it in front of a huge group of students. Really great that she did that and that gave me the strength and made me feel that I could share my story as well. So, I think the power in sharing your story is amazing. A key feeling associated with this insight was awe or surprise, where the advocate suddenly realised that they could let go of their ED self and move toward advocacy and recovery. Activity theory also highlights how the division of labour (e.g., involvement of school and coaches) was needed for the advocate to arrive upon this insight and gain awareness of her strengths. More specifically, dividing responsibilities enabled the school to organise a safe and effective mental health talk, where storytelling was used as an effective tool to inspire young people about the importance of recovery and the need to help others throughout this process. Prosocial Tendencies Like Allison, other advocates were particularly receptive to messages about the importance of advocacy and sharing one’s story because of the strong prosocial rules that they grew up with. Here, a prosocial act refers to a diverse set of actions that benefit those other than the self ( 46 ). From a developmental perspective, people need appropriate childhood experiences to activate prosocial values and behaviours, particularly empathy for distressed others and an internalisation of prosocial norms ( 47 ). Advocates mentioned how they were raised to contribute to their community through acts of service while being empathetic and aware of their peers’ emotions. For instance, those who grew up as elite athletes learned about the importance of teamwork and sought to prioritise the needs of others in their daily lives. However, several advocates also noted instances where their prosocial tendencies led to neglecting themselves: Jay “My parents truly wanted the best for me and what that entails is making sure that I don’t stick out or that I can make sure that I can support the community… I always try to put others first, cause that’s what my cultural values teach me. And I’ve grown to learn and love doing that. But I stopped doing that for myself.” Prioritising others while neglecting the self, became a deeply-rooted habit for advocates, which continued to manifest as shame, self-judgement, and sadness (Affect Opponents) during the recovery phase. However, with recovery as their object, advocates cultivated psychological resources to realise that they cannot effectively care for others without first caring for themselves, from receiving professional support to utilising yoga, poetry, and other practices. This finding aligns with how people in both formal and informal caregiving roles seek to prioritise self-care as a way to protect themselves against perceived stress and pain ( 44 , 45 ). Helper: The Resilient Self Several Helpers (i.e., themes that encouraged recovery) emerged from storytelling during the recovery process. Affect Helpers included hope for the future, happiness in life and gratitude for life. Self-perception Helpers were transforming into the “authentic” self (i.e., being resilient, vulnerable, and empowered), improved perception of self-regulation, and actively exploring recovery (i.e., realising life is meaningful and that recovery is nonlinear and possible). Social Helpers included setting healthy boundaries and having a reliable support system (e.g., accessing ED-neutral social media, supportive family or community, and professional care). Vulnerability By narrating their stories to audiences, advocates shared that they felt resilient, which was identified as being vulnerable, empowered, and authentic. Here, vulnerability primarily refers to Dr. Brené Brown’s definition, which is the emotional experience one has during times of risk, uncertainty, and unknowing ( 50 ). Interestingly, several advocates had engaged with Dr. Brown’s work and intentionally embraced this concept of vulnerability during their recovery: Ashley N “I remember feeling a little nervous because I was like ‘well what if I say something that doesn't make sense?’ Then, when the conversation started rolling, I felt fine. I felt fulfilled and proud of myself for like speaking vulnerably. I think it was around that time that I found Brené Brown who talks a lot about vulnerability.” Sharing their stories with a room of strangers bears considerable risk for advocates, despite the support and protection they receive by being part of a mental health organisation. In addition to potential experiences of stigma and judgement from audiences, openly and honestly sharing their story may reopen emotional wounds, risking the potential to be overwhelmed by their feelings in a public setting. Nevertheless, they also expressed feeling great relief and excitement that made their storytelling overwhelmingly positive: Odeta “I was shaking. I had butterflies in my stomach. But when I got on stage, I knew that I was there for a bigger purpose. So those nerves kind of went away.” Empowerment These quotes showcase the altruistic and resilience-building nature of advocacy through autobiographical storytelling. More specifically, the advocates primarily sought to share their stories to increase hope and understanding among others rather than to achieve any self-serving goal. Similarly, speaking about their recovery reminded them of the resilience and courage that they demonstrated, helping them embody some of those feelings in the moment of storytelling. As such, each storytelling opportunity encouraged them to reflect further upon how far they had come. Patrice synthesises this feeling in the following quote: For me, it’s basically [a way to] reflect every time. I almost learn new facts about myself. Every time I say it, it’s the same story– there's nothing new to it. But each time I tell it, it almost feels like I’m telling it for the first time. And then, later on, I'm like, ‘oh, so this thing in my life could have led to that’ and so on. So, I almost get a better understanding of myself. To highlight the significance of this passage, one can revive Merleau-Ponty’s quote that “we indwell language in the same way we indwell our bodies, and through them both we indwell the world.” Retelling one’s story enables that person to embody it, such that the story guides them to discover new things about themselves and their world. Performing or narrating their story to an audience also plays an integral role in this transformative process. Primarily, there is rarely a set script that speakers read off of, encouraging them to memorise the story’s main talking points while leaving room for improvisation and elaboration. Performance also provides an audible voice to the speaker’s thoughts, allowing their voice and body to embody their ideas. As such, every performance becomes an opportunity to focus on something new: the speaker may change the tempo, pitch, or duration of a pause to arrive at a new insight or achieve a different reaction from the audience. Patrice once again captures this transformative experience by saying: I'm telling this story. I can see [people’s] reactions, and I interpret some of their reactions. And I find it interesting that the majority of the people are like, ‘whoa, this is a big deal.’ This particular example highlights how oral storytelling can become a collective meaning-making experience because audience reactions, feedback, and questions provide speakers with a new way to reflect upon their stories. Notably, the audience helped Patrice understand the significance of his recovery more deeply, as their reactions helped him understand that his healing journey was “a big deal.” In effect, advocates described their talks as empowering experiences because talks helped them become more aware of their inner strengths. Here, empowerment refers to behaving in ways that align with one’s inner states and desires such that one feels more confident in one’s feelings, values, and dispositions ( 51 ). Empowerment also enables people to rely more on their internal rather than on external resources. As such, advocates moved away from the rewards of harmful body culture (e.g., compliments on their body from others) and instead embraced their inner resilience. Authenticity Moreover, feeling empowered helps enhance one's feeling of authenticity, which is the extent to which individuals can connect with and represent their “authentic”selves in various contexts ( 51 ). In this manner, they were able to cultivate a deeper and more compassionate understanding of themselves and reclaim their identities as being resilient. Such self-transformation and self-fulfilment were also associated with greater subjective well-being. As Patrice described above, sharing and resharing their stories enabled advocates to make sense of their lives. Doing so also enabled them to experience strong positive feelings, including happiness and excitement for future talks and gratitude for their recovery journey. Participating in a mental health organisation also enabled them to witness the positive effect their advocacy had on the community, both immediately through audience reactions and over time by contributing to the organisations’ anti-stigma initiatives. Their hope to inspire future advocacy and strengthen future eating disorder prevention initiatives also gave them the strength and encouragement to continue their advocacy journey. Advocacy as a Tool As mentioned earlier, tools mediate how an object is carried out. In this context, advocacy can be considered as a tool while recovery (i.e., a life unhindered by EDs) is the object. Since the tool of advocacy was associated with positive experiences (e.g., Helpers like happiness and Receivers like pride), advocates became more likely to disengage from EDs while focusing more on their goal of recovery: Odeta “When I found all of these other tools that gave me so much more intrinsic happiness and self-worth, I was okay of letting that destructive part go.” In this manner, advocacy became an adaptive form of self-care, perhaps because of its altruistic nature and prosocial impact ( 52 ). This example also highlights how activity theory compliments and augments the role of actants (i.e., Helper and Receiver) while shielding against the Opponents that hinder the subject-object relationship. That is to say, while feelings of happiness and self-worth associated with the advocacy continue to maintain the path towards recovery, they also buffered the impact of elements that opposed the recovery process. Opponents: never good enough Despite the helpers and protective factors that supported the advocate’s recovery, several opponents challenged the recovery process. Affect Opponents included shame with their ED, self-judgment, and sadness with their lives. A key Self-perception Opponent was the tendency of advocates to internalise unrealistic standards of recovery brought upon by society (e.g., no longer presenting ED thoughts or behaviours). Social Opponents included the following: 1. susceptibility to harmful body culture and ED stigma, 2. Advocates’ perceptions of society’s low understanding of EDs, and 3. Advocates’ feelings of constant invalidation of their experiences. What connected these Opponents was the domineering belief that advocates were somehow inadequate or not good enough: Kat “I’ve definitely felt like I’m not enough. I'm not being enough as an advocate, not doing enough in the world–or not resting enough when that’s probably the most important thing you can do.” The identified risk factors for this deep-rooted belief include invalidation from parental figures, early experiences of bullying, and complex relationships with one’s ED, all of which have been found to negatively impact self-esteem. In addition to these factors, the media was also noted as a force that influenced their sense of self. Media can effectively broadcast social expectations for a variety of social ideals, from the drive for excessive thinness ( 53 ) to the endorsement of unrealistic depictions of “healthy” living. Advocates grew up being exposed to these pressures and continued to see them during their recovery, with the media dictating what is considered a “healthy” lifestyle or what can be defined as recovery. These topics were also discussed in the advocates’ social circles, from interactions with their families to those with hospital staff who pressured them to acquire a specific image of recovery. Although advocates had learned to internalise these social pressures, drawing upon self-care tools and rules continued to steer their path toward healing: Kat “With practice, I learned how to tune out the negative self-talk. It just takes time, I think, and knowing yourself and being able to pinpoint when you might need a little bit more self-love.” Catherine further highlights how she felt it was important to share her story to provide a more realistic and authentic portrayal of recovery: There are still days that are hard for you, and there are still things that are tricky for you. But it's when people hear that they know that they're also not alone in that they don't feel like they're perfect in their recovery and I think that really helped um but I'm being very nervous at first. In addition to emphasising the possibility of recovery, her quote also exemplifies how each recovery is unique and personal; there is no “perfect” recovery. Rather, recovery is difficult and nonlinear, all while being possible. Highlighting this message throughout their advocacy therefore served as a reminder to themselves while combatting the overbearing sense of isolation that comes with having EDs. Receivers: Altruistic behaviours Affect Receivers (i.e., gains from this recovery process) included pride, relief, and excitement as they shared their ED stories. Advocates also cultivated self-worth by realising their story matters; as such, the Self-perception Receiver was the altruistic desire to share one’s story and help others realise that they are not alone. Finally, Social Receivers were the benefits of sharing their stories, including encouraging conversations on EDs, enhancing ED literacy, and applying lived experiences to enhance ED prevention and treatment programs. Advocates reported having altruistic motivations that encouraged their ED advocacy, even if they were to receive no external rewards or were punished for their actions ( 54 ). Jay exemplified this altruistic trait by speaking up against family members who “blatantly call[ed] someone fat.” Other advocates also argued against authority figures who normalised stigmatising attitudes toward EDs; for instance, Sarah spoke up against an employer who fat-shamed her colleagues, while Daphne criticised a professor who promoted diet culture in their lectures. These everyday moments of advocacy began to develop their confidence in speaking up while helping them realise the positive social impact of their actions. Organisational advocacy continued to enhance this altruism because it encouraged advocates to reflect on the prosocial impacts of sharing their stories. Above all, they hoped that their stories could help combat the significant loneliness and stigma that individuals may experience when living with EDs. Odeta exemplified this feeling: The impact I wanted [my story] to have was hope. I wanted somebody to feel seen. After the first speech I gave, a mom came up to me and shared her daughter’s struggles with an eating disorder. She was on the verge of tears saying, ‘Oh, it was so beautiful hearing your story and seeing so much of my daughter in you. Thank you for sharing that.’ Even on social media when I've shared about my journey, I've gotten personal messages of people sharing their story with me. Through the activity theory lens, since the availability and accessibilities of relevant tools mediate the subject-community relationship, one must consider the role of social media and the internet in maximising the advocate’s outreach. These tools enabled advocates to receive positive feedback from viewers, helping them feel relieved and empowered by sharing their stories. Mental health events and organisations offer another unit of analysis; they provide platforms, funding, and wide outreach to communities, while advocates demonstrated personal, moral, and altruistic virtues to effectively connect with and educate that community. In addition to gaining audience feedback and reflecting more deeply upon their lives, advocates noted the wider social benefits of their advocacy, including the possibility of normalising conversations on EDs in educational and healthcare settings: Ashley S (an educator) ” I really want schools to have a comprehensive and compassionate curriculum that prioritises mental health, including eating disorders. I want them to have eating disorder support and resources, even if it’s just normalising the language around it. I want it to be something that kids feel comfortable talking about because it is very much something that they go through.” Catherine (an occupational therapist) “[in ED-ucation], we shift how we talk about our food, our bodies, and everything in a way that's more body neutral and how to look at ourselves as wonderful human beings and not feed into the diet culture world of today.” As seen in these instances, several advocates sought to deepen their understanding of EDs and integrate this knowledge into their professional lives. For instance, while Ashely S took an ED-informed approach in her teaching, Catherine sought to provide more equitable ED treatments for her clients. They also highlight the pervasiveness of ED stigma and the need to enact positive social change. Advocates identified storytelling as one key avenue to combat this stigma: Odeta (Yoga instructor and wellness practitioner) “Having people who have recovered to speak at schools [gives] children a real person they can listen to. Humans are social creatures and natural storytellers. That’s the way we learn best... I never got that when I was in school, so I dealt with all these really big emotions as a teenager.” Establishing safe and compassionate relationships with ED survivors through advocacy organisations could serve as an effective way to prevent the risk of EDs or maintain young people’s path toward recovery. Doing so is particularly helpful for youth and young adults, who present some of the most frequent and severe cases of EDs ( 55 ). These contact-based interventions can integrate advocacy and storytelling initiatives to make the programs more personally meaningful for the youth and advocates involved. Future studies can investigate the efficacy of such contact-based interventions in schools or healthcare settings. Limitations Despite the findings of this study, there are several limitations to consider. First, the authors did not rely upon ED questionnaires during recruitment and did not require advocates to have formal diagnoses to qualify. In doing so, the authors wished to acknowledge the discrimination and sociocultural barriers that prevent most individuals from receiving fair ED assessments, though this decision may limit the ability to standardise results across studies ( 56 ). Another limitation was the difficulty to determine exactly when or how the recovery process started. Advocates struggled to pinpoint this exact moment because of various hardships or “relapses” that occurred after their willingness to pursue recovery. Nevertheless, sharing these difficulties and striving to overcome them emphasised the non-linear nature of recovery, helping to strengthen rather than disempower the advocates. Considering the multifaceted nature of recovery can provide a more in-depth analysis of people’s perceptions of this phenomenon ( 57 ). Finally, given the qualitative nature of the study, it was difficult to delineate the extent to which different factors mediated the relationship between advocacy and recovery or whether the desire for recovery preceded or followed the desire to engage in advocacy. Future quantitative studies can identify the temporality of these relationships while further elucidating the role of different mediators. Conclusion This paper offers storytelling praxis as an accessible way to encourage ED literacy in various domains. For instance, healthcare professionals may benefit from listening to stories of recoverees in their training. Reports highlight how inexperienced health providers show strong negative reactions to ED patients, including frustration, hopelessness, and low competence. Workers can also become desensitised to the physical condition of patients ( 58 ), while some struggle to remain empathetic and respectful in their patient interactions ( 59 ). Since patients deeply value empathetic care, intentionally listening to ED stories can help maintain this positive relationship while offering insight into how to provide better care ( 60 ). Storytelling can also empower patients and recoverees to challenge dominant narratives on EDs. One of these narratives involves the notion that one can “complete” recovery, while the stories of advocates in this study showed how recovery is an ongoing process. Finally, storytelling enables advocates to position themselves in their larger life narratives, providing the opportunity to explore social structures (e.g., hypersexualised beauty culture) that motivate their disorders. As such, this study is part of an emerging field of empirical literature that challenges the medicalisation of EDs, helping us move towards more holistic interventions that interrogate oppressive structures and empower individuals to reclaim their life stories. Future research can investigate the implications of implicating these findings into anti-stigma interventions and therapeutic programs. Doing so can contribute to growing initiatives that empower individuals to seek help while raising more compassion across their communities. Abbreviations Eating Disorder ED Declarations Acknowledgements The authors would like to acknowledge the time and devotion of the advocates who made this study possible. They also wish to acknowledge the diligent research assistants who helped transcribe and analyse this study’s data: Fiona McKay, Maryam Taj, Charlyn Marie Cerdan, Ban Al-Qadhi, and Gretl Baghdadi. Finally, they would like to acknowledge Michael Koslowski and Stacy Costa for guiding the writing of this manuscript. Author contributions Both authors made substantive contributions to this paper; this work included the conception of this research, along with consideration and review of the data analysis. KH prepared the paper, while both authors contributed to its final review. Funding Not applicable. Ethics approval and consent to participate Written informed consent and ethics approval were obtained from the REB at the University of Toronto (protocol number: 39770). Consent for publication Written informed consent for the publication of individual data was obtained at the time of the initial study. Competing interests The authors declare that they have no competing interests. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3997775","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":275832858,"identity":"f6b07e64-b544-49a1-b483-245eb5f44cbf","order_by":0,"name":"Kiana Habibagahi","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABQklEQVRIiWNgGAWjYBACCWYwdYDBgJkHzODhB5EPSNIi2QAkE4AyUAlMLQwwLQw8UAZIFT4tku3Mzx78YLgjb87Oe/Djl5o7MsbXDj8E2nK4jl/68LHHHyoY5PkbULRIM7OZG/YwPDPc2cyXLC1z7BmP2e00A5AWCcm+tHSDA2cYDGegWiXHzGAmwcNwmHHDYR4DaQm2w0AtCRAtBmd4zCQOtgEdia6F/ZvkH4bD9kAtxr8l/gHJ2ekfULXIo2qRZuYxkwbakgjUYib5sQ1kVw6aLQaoWiSbecqkZQwOJwP9kmbN2HeYR+J2TsGBBIN0yZk9bGkSZ85IGG5E1SJx/vg2yTcVh2238589fPPHt8P2/LPTN3/4UGHNz8/DfEyiosJGXg5LSAMjBQwgsYkswgCPORyA8Qde6VEwCkbBKBipAADORHbj3lqKzAAAAABJRU5ErkJggg==","orcid":"","institution":"Wilfrid Laurier University","correspondingAuthor":true,"prefix":"","firstName":"Kiana","middleName":"","lastName":"Habibagahi","suffix":""},{"id":275832859,"identity":"be0a204d-6108-4bfb-97c3-da1739a69ef3","order_by":1,"name":"Michel Ferrari","email":"","orcid":"","institution":"University of Toronto","correspondingAuthor":false,"prefix":"","firstName":"Michel","middleName":"","lastName":"Ferrari","suffix":""}],"badges":[],"createdAt":"2024-02-28 21:05:16","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3997775/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3997775/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40337-024-01099-5","type":"published","date":"2024-09-19T15:57:39+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":52058060,"identity":"3e1899b0-cb5f-49c5-bc6e-7b9bb265a86c","added_by":"auto","created_at":"2024-03-06 04:07:34","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":45664,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eVisual Depiction of Activity Theory.\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-3997775/v1/2761bdd9ee185f0d9c92d8b9.png"},{"id":65104035,"identity":"666cc1d3-f911-4750-99c7-25d827a94a6e","added_by":"auto","created_at":"2024-09-23 16:11:00","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":725461,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3997775/v1/42482a6e-3309-4b48-8747-1225238f9aae.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Advocacy through storytelling: Challenging Eating Disorders and Eating Disorders Stigma","fulltext":[{"header":"Plain English summary","content":"\u003cp\u003eEating disorders (EDs) have been identified as one of the most stigmatised mental illnesses, making it difficult for individuals to seek professional help or disclose their mental health situation. Nevertheless, a handful of individuals become advocates who combat this stigma by sharing their personal struggles and ongoing healing journeys. This study thematically analysed the experiences of such advocates while identifying the personal and social benefits of their storytelling advocacy. The outcomes of this study suggested that advocates found these storytelling initiatives to be deeply meaningful because they were able to reflect on how far they had come while increasing hope among audiences that recovery is possible. The findings from this research support the ongoing need for novel interventions against ED stigma, including the potential to incorporate storytelling as a way to normalise conversations on ED while enhancing the resilience of individuals undergoing recovery.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eInterviewer:\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003cem\u003eWould it be fair to say that advocacy positively contributed to your recovery?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eChloë\u003c/em\u003e\u003c/strong\u003e\u003cem\u003e: It played a huge part. I think eating disorders exist with so much isolation, shame, and stigma that [advocacy] felt like a breath of fresh air. My eating disorder was no longer a secret.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFor more than two decades, eating disorders (EDs) have been one of the most stigmatised mental illnesses\u0026nbsp;(1,\u0026nbsp;2). Stigma can force people to live with their illness in secrecy, preventing help seeking and exacerbating the culture of silence surrounding the disorder\u0026nbsp;(3). Nevertheless, some people successfully overcome this stigma and seek professional help. Like Chloë in the quote above, others go a step further by advocating for greater awareness of and social change in EDs\u0026nbsp;(4,\u0026nbsp;5). Oral storytelling is one avenue for advocates to raise awareness of mental illness, combat stigma, and demonstrate how recovery is possible. Such advocacy canmaintain their path toward recovery because of the opportunities for self-reflection and social connectedness that it incurs\u0026nbsp;(6).\u0026nbsp;These advocates often receive intensive training on how to share their stories with audiences\u0026nbsp;(7).Chloë’s quote also highlights how advocating for and disclosing one’s mental illness can invoke strong positive emotions (e.g., “breath of fresh air” as a metaphor for a sense of relief, freedom, etc.)\u0026nbsp;(8,9). They occasionally adapt the story’s delivery or narrative (e.g., changes in tone or word choice for different audiences), although the story’s contents remain the same. Doing s’ encourages them to reflect on their experiences from new angles, enabling their stories to grow and evolve as they do\u0026nbsp;(10).\u003c/p\u003e\n\u003cp\u003eDespite the therapeutic potential of\u0026nbsp;storytelling\u0026nbsp;and\u0026nbsp;advocacy(11) for EDs (4), there are few studies on how ED-recoverees use their recovery stories to engage in advocacy and advance their healing journeys. To our knowledge, this study is the first to examine how ED advocacy through oral storytelling contributes to the healing of young advocates, including how storytelling enables them to combat stigma.\u003c/p\u003e"},{"header":"Background","content":"\u003cdiv id=\"Sec2\" class=\"Section2\"\u003e \u003ch2\u003eEating Disorder Stigma\u003c/h2\u003e \u003cp\u003eBecause stigma has been a key barrier to seeking and continuing treatment for EDs (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), individuals may lose the opportunity to receive treatment (e.g., 13). Although ED stigma remains underexplored (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e), it is among the most stigmatised mental illnesses (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). EDs are highly stigmatised because people perceive EDs as personal choices, making people more likely to blame individuals for their EDs\u0026ndash;which has been reported for healthcare professionals (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e), young adults (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e), and adolescents (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). The media portrayal of ED also contributes to people\u0026rsquo;s negative beliefs and attitudes, from equating anorexia to skeletal bodies or binge eating disorders to lacking self-discipline (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). These portrayals elicit negative emotions (e.g., fear, anger, disgust) and avoidance toward those with EDs (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e), exacerbating their distress and further impeding their help-seeking (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Likewise, individuals may internalise this stigma, believing that they are incompetent, weak, and powerless against their ED (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e), which negatively affects their self-esteem and worsens their psychological well-being. These two outcomes are risk factors for EDs, entrapping the person in a vicious cycle where stigma delays help seeking, worsens ED symptoms, and prolongs the disorder (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Finding ways to understand and target stigma, including through contact-based ED interventions, may therefore have key social benefits (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eCombating Stigma Through Storytelling\u003c/h2\u003e \u003cp\u003eStorytelling is integral to contact-based educational interventions that seek to combat stigma and educate audiences on mental health. These educational presentations on mental health enable audiences to connect with the speaker\u0026rsquo;s own lived experience (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e); speakers can incorporate their recovery stories into such presentation, ensuring to do so safely (e.g., without graphic details) while spreading positive messages of hope (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). For example, Jack.org is a national mental health charity with certified speakers who share their personal mental health stories (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Their first-person accounts help audiences humanise mental illnesses and empathise with the experiences described (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Hearing the speaker\u0026rsquo;s recovery journey also raises hope that healing is possible for members of the audience and others who are struggling with this illness (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). While audience receptivity to these interventions may vary (e.g., more effective for youth participants or participants without mental illness), contact-based programs have been identified as one of the most promising ways to combat stigma (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). The altruistic intent to share one\u0026rsquo;s story in such contexts also relates to a more positive evaluation of the self (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) because the person can engage in meaningful activities that contribute to society (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Such storytelling interventions can therefore serve as effective ways to address stigma while developing positive attitudes toward seeking help (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eStorytelling as a way to Transform and Heal the Storyteller\u003c/h2\u003e \u003cp\u003eStorytelling is a type of creative expression that positions the storyteller\u0026rsquo;s thoughts in the world. For Maurice Merleau-Ponty, words are our thoughts not mere representations of it, saying \u0026ldquo;we indwell language in the same way we indwell our bodies, and through them both we indwell the world\u0026rdquo; (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). This theoretical account aligns with empirical research highlighting the deep connection between the storyteller and the positive impact of storytelling on their lives (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eStorytelling can also become both a valuable form of healing and a tool for advocacy in mental health contexts. Autobiographical storytelling, for instance, can aid trauma recovery if people can situate their trauma within their wider life narrative (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e), engage their imagination (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e) and capture nuances of their life in ways that motivate them to restructure their experiences in personally meaningful ways (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). Storytelling can also voice service-user experiences to healthcare providers and promote mutual understanding of their lived experiences (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e Despite the healing and educational potential of storytelling approaches, few empirical studies are available on the subject, while virtually no studies have been conducted on the use of oral storytelling as a means of ED advocacy. As such, this study qualitatively examines the effect of verbal storytelling on the experiences of ED advocates throughout their lives.\u003c/p\u003e \u003c/div\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\n \u003ch2\u003eStudy design\u003c/h2\u003e\n \u003cp\u003eThis study qualitatively analysed autobiographical oral histories provided by adult ED advocates. The virtual interviews were audiotaped and transcribed. Informed consent and ethics approval were provided prior to the interviews, with extended consent obtained from the University of Toronto. Semi-structured oral history interviews were conducted to obtain the advocate\u0026rsquo;s autobiographical narrative and explore how EDs appeared, manifested, and were later resolved in their lives (\u003cspan class=\"CitationRef\"\u003e36\u003c/span\u003e). An ecological systems framework was used to design the interview questions that included proximal and distal factors that may have influenced the ED (\u003cspan class=\"CitationRef\"\u003e37\u003c/span\u003e). The interviews also included questions about participants\u0026rsquo; hopes for future ED research and advocacy. Finally, a sentence completion task adapted from Loevinger\u0026rsquo;s 1979 study was used to uncover implicit instances of resilience among participants (\u003cspan class=\"CitationRef\"\u003e38\u003c/span\u003e). The interviews were conducted virtually on the Zencaster recording platform. Only interview audio was recorded. Zencaster created the recording transcripts, and the research assistants manually corrected any transcript errors.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\n \u003ch2\u003eParticipants\u003c/h2\u003e\n \u003cp\u003eThis study used purposive criterion sampling to identify the people most experienced in the phenomenon of interest who were willing to engage in the studies (\u003cspan class=\"CitationRef\"\u003e39\u003c/span\u003e). Participants were recruited using the internal mailing system of Jack.org and through social media accounts of Sheena\u0026rsquo;s Place, a charitable organisation offering group-based support for those affected by EDs or disordered eating. The selected participants were adults (\u003cspan class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan class=\"CitationRef\"\u003e60\u003c/span\u003e) in Canada who had been trained by that organisation to share their ED recovery stories safely. Participants were excluded if (\u003cspan class=\"CitationRef\"\u003e1\u003c/span\u003e) they had not spoken publicly about their ED recovery, (\u003cspan class=\"CitationRef\"\u003e2\u003c/span\u003e) the ED severely impacted their daily functioning, or (\u003cspan class=\"CitationRef\"\u003e3\u003c/span\u003e) they felt uncomfortable or unsafe discussing their ED history. In all, 16 participants consented to being interviewed virtually and recorded (i.e., audio only) and for their interviews to be available on an open ED-recovery podcast at least 48 hours before the interviews via e-mail. The consent process was also reviewed with participants prior to the interview. Mental health resources were made available to all participants, and access to an on-call mental health professional in training (with ED experience) was provided. Participants were also assured that they could anonymize their interview data at any point before the interview audio was published online. Three out of the 16 participants chose to remain anonymous, and all identifying information in their interviews was removed. Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e shows the demographic characteristics of the participants.\u003c/p\u003e\n \u003cdiv class=\"gridtable\"\u003e\n \u003ctable id=\"Tab1\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eDemographic information of advocates.\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eAdvocate\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eAge\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eGender\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEthnic Background\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAllison\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAnon\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e37\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSouth Asian origins\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAnon2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAnon3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e39\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAshley N\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e30\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAshley S\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e42\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eBetsy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e60\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCaitlin\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e35\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCatherine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDaphne\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eLatin, Central and South American origins, West Central Asian and Middle Eastern origins\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eJay\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNonbinary\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEast and Southeast Asian origins, Other Asian origins\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eKat\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOlivia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePatrice\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Man\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSarah\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSophie\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCis Woman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite (Caucasian)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch2\u003eData analysis\u003c/h2\u003e\n \u003cp\u003eThis study used NVivo12 software to qualitatively analyse the data. A mix of semiotic analysis (\u003cspan class=\"CitationRef\"\u003e40\u003c/span\u003e) and actantial analysis (\u003cspan class=\"CitationRef\"\u003e41\u003c/span\u003e) was used to explore the structure of young people\u0026rsquo;s ED narratives and the stories of how ED advocacy plays a role in their lives. In this article, only discussions of advocacy and recovery are presented.\u003c/p\u003e\n \u003cp\u003eSemiotic analysis was used to highlight the overarching themes and subthemes. In the first stage of grounded theory, the first author (KH) used two exemplar interviews to familiarise herself with the interview data and generate initial codes (i.e., open coding). Two more interviews were used to organise and recursively revise hierarchal themes and subthemes (i.e., axial coding). Selective coding began once the organisation of the themes was reviewed by the second author, Dr. Michel Ferrari. Themes were recursively reviewed, redefined, and reorganised through discussion.\u003c/p\u003e\n \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e\n \u003ch2\u003eActantial Analysis\u003c/h2\u003e\n \u003cp\u003eActantial analysis was used to explore how the recovery stories were constructed (\u003cspan class=\"CitationRef\"\u003e41\u003c/span\u003e). Although originally intended for literary texts (\u003cspan class=\"CitationRef\"\u003e42\u003c/span\u003e), this approach has recently been applied to analyse the deep structures of oral narratives (\u003cspan class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e44\u003c/span\u003e). To the author\u0026rsquo;s knowledge, this is the first study that has used the actantial model to explore the \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003elife stories of EDs\u003c/span\u003e. The model argues that every event can be broken down into six actants that are mapped onto 3 pairs of binary oppositions: \u003cem\u003eSubject-Object (axis of desire)\u003c/em\u003e, highlighting the quest of the story; \u003cem\u003eHelper-Opponent (axis of conflict)\u003c/em\u003e, supporting or opposing the subject\u0026rsquo;s achieving their object(s); and \u003cem\u003eSender-Receiver (axis of communication)\u003c/em\u003e actants, where senders initiate the establishment of the subject-object relationship and \u003cem\u003eReceivers\u003c/em\u003e benefit from it.\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e\n \u003ch2\u003eActivity Theory\u003c/h2\u003e\n \u003cp\u003eWe also used activity theory (\u003cspan class=\"CitationRef\"\u003e45\u003c/span\u003e) to illustrate how motivation translates into action within a community network that extends beyond the individual. As shown in Fig. \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e, in this view, embodied experiences and motives shape a person\u0026rsquo;s reason for acting. The figure also identifies several system mediators, including \u003cem\u003etools\u003c/em\u003e (e.g., language and social media), which mediate how this object is carried out. Likewise, \u003cem\u003erules\u003c/em\u003e mediate the subject-community relationship, while the \u003cem\u003edivision of labour\u003c/em\u003e mediates the relationship between the object and community. \u003cem\u003eRules\u003c/em\u003e are a result of social conditioning, influencing how and why individuals act. The division of labour determines the different growth of community workers that helped them carry out the given social activity. Finally, outcomes refer to the consequences of the activity.\u003c/p\u003e\n \u003cp\u003eThe Results and Discussion section uses Actantial analysis to identify key narrative themes and further contextualises and expands upon these results using activity theory.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Results \u0026 Discussion","content":"\u003cp\u003eThis study used autobiographical narrative analysis to explore how storytelling influenced the ED recovery of young advocates. This paper explored the ongoing recovery stage during which the advocacy and storytelling journey began.\u003c/p\u003e\u003cp\u003eFor our purposes, the advocate was the \u003cem\u003eSubject\u003c/em\u003e, and their recovery from the ED was the O\u003cem\u003ebject\u003c/em\u003e. Actantial analysis identifies the key actants that initiated recovery (i.e., Senders), encouraged recovery (i.e., Helpers), hindered recovery (i.e., Opponents), or benefited from the recovery process (i.e., Receivers). These actants were further organised according to affective (i.e., emotions or feelings), cognitive (self-perceptions of their emotional and physical self), and sociocultural processes.\u003c/p\u003e\u003cp\u003eSince the axis of desire is straightforward (subjects desire to overcome their EDs, which is the object of their story), we focus our analysis on the axes of conflict (helper-opponent) and communication (sender-receiver).\u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eHelpers and Opponents Throughout Recovery.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e\u003ccolgroup cols=\"6\"\u003e\u003c/colgroup\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eHELPER\u003c/p\u003e \u003c/th\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c6\" namest=\"c4\"\u003e \u003cp\u003eOPPONENT\u003c/p\u003e \u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAffect\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eSelf-perception\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eSocial Interactions\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eAffect\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003eSelf-perception\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003eSocial Interactions\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHope\u003c/p\u003e \u003cp\u003eRelief \u003c/p\u003e \u003cp\u003eGratitude\u003c/p\u003e \u003cp\u003eHappiness and excitement\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTransform into resilient self\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFind belonging thanks to support systems and advocacy work\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eShame\u003c/p\u003e \u003cp\u003eSelf-judgement\u003c/p\u003e \u003cp\u003eSadness\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cem\u003eWill never be good enough\u003c/em\u003e as they failed to meet social standards of “full” recovery\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eHarmful body culture and ED stigma\u003c/p\u003e \u003cp\u003eCulture of invalidation\u003c/p\u003e \u003cp\u003ePoor knowledge of EDs\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/table\u003e\u003c/div\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSenders and Receivers Throughout the Recovery Period.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e\u003ccolgroup cols=\"6\"\u003e\u003c/colgroup\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSENDER\u003c/p\u003e \u003c/th\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c6\" namest=\"c4\"\u003e \u003cp\u003eRECEIVER\u003c/p\u003e \u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAffect\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eSelf-perception\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eSocial Interactions\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eAffect\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003eSelf-perception\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003eSocial Interactions\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFeelings associated with insight\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAwareness of/insight into ED (e.g., by hearing someone else’s story)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eProsocial upbringings and purpose to help others\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePride\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eCultivate self-worth (e.g., realise their story matters)\u003c/p\u003e \u003cp\u003eAltruistic desire to share story (e.g., help others know they are not alone)\u003c/p\u003e \u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eEncourage ED literacy\u003c/p\u003e \u003cp\u003eChallenge ED stigma\u003c/p\u003e \u003cp\u003eApply lived experience to improve/introduce ED prevention initiatives \u0026amp; treatments\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/table\u003e\u003c/div\u003e\u003ch2\u003eSenders: Initiating Activity\u003c/h2\u003e\u003cp\u003eIn our actantial analysis, Senders initiated the recovery process: gaining awareness of the harmful nature of ED (Self-perception Senders) or realising their desire to help others (Social Senders) prompted them to pursue recovery.\u003c/p\u003e\u003cp\u003eGaining awareness of the ED’s destructive nature was the Sender, or first step to initiate recovery and engage in ED advocacy. Advocates gained this insight by listening to the vulnerable and personal accounts of community leaders or role models (e.g., coaches and supervising professors):\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eAllison\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eOne of my coaches in high school talked about her journey with an eating disorder and that got me thinking. She shared it in front of a huge group of students. Really great that she did that and that gave me the strength and made me feel that I could share my story as well. So, I think the power in sharing your story is amazing.\u003c/em\u003e \u003c/p\u003e\u003cp\u003eA key feeling associated with this insight was awe or surprise, where the advocate suddenly realised that they could let go of their ED self and move toward advocacy and recovery. Activity theory also highlights how the division of labour (e.g., involvement of school and coaches) was needed for the advocate to arrive upon this insight and gain awareness of her strengths. More specifically, dividing responsibilities enabled the school to organise a safe and effective mental health talk, where storytelling was used as an effective tool to inspire young people about the importance of recovery and the need to help others throughout this process.\u003c/p\u003e\u003ch2\u003eProsocial Tendencies\u003c/h2\u003e\u003cp\u003eLike Allison, other advocates were particularly receptive to messages about the importance of advocacy and sharing one’s story because of the strong prosocial rules that they grew up with. Here, a prosocial act refers to a diverse set of actions that benefit those other than the self (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). From a developmental perspective, people need appropriate childhood experiences to activate prosocial values and behaviours, particularly empathy for distressed others and an internalisation of prosocial norms (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e). Advocates mentioned how they were raised to contribute to their community through acts of service while being empathetic and aware of their peers’ emotions. For instance, those who grew up as elite athletes learned about the importance of teamwork and sought to prioritise the needs of others in their daily lives. However, several advocates also noted instances where their prosocial tendencies led to neglecting themselves:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eJay\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“My parents truly wanted the best for me and what that entails is making sure that I don’t stick out or that I can make sure that I can support the community… I always try to put others first, cause that’s what my cultural values teach me. And I’ve grown to learn and love doing that. But I stopped doing that for myself.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003ePrioritising others while neglecting the self, became a deeply-rooted habit for advocates, which continued to manifest as shame, self-judgement, and sadness (Affect Opponents) during the recovery phase. However, with recovery as their object, advocates cultivated psychological resources to realise that they cannot effectively care for others without first caring for themselves, from receiving professional support to utilising yoga, poetry, and other practices. This finding aligns with how people in both formal and informal caregiving roles seek to prioritise self-care as a way to protect themselves against perceived stress and pain (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e).\u003c/p\u003e\u003ch2\u003eHelper: The Resilient Self\u003c/h2\u003e\u003cp\u003eSeveral Helpers (i.e., themes that encouraged recovery) emerged from storytelling during the recovery process. \u003cem\u003eAffect Helpers\u003c/em\u003e included hope for the future, happiness in life and gratitude for life. \u003cem\u003eSelf-perception Helpers\u003c/em\u003e were transforming into the “authentic” self (i.e., being resilient, vulnerable, and empowered), improved perception of self-regulation, and actively exploring recovery (i.e., realising life is meaningful and that recovery is nonlinear and possible). Social Helpers included setting healthy boundaries and having a reliable support system (e.g., accessing ED-neutral social media, supportive family or community, and professional care).\u003c/p\u003e\u003ch2\u003eVulnerability\u003c/h2\u003e\u003cp\u003eBy narrating their stories to audiences, advocates shared that they felt resilient, which was identified as being vulnerable, empowered, and authentic. Here, vulnerability primarily refers to Dr. Brené Brown’s definition, which is the emotional experience one has during times of risk, uncertainty, and unknowing (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). Interestingly, several advocates had engaged with Dr. Brown’s work and intentionally embraced this concept of vulnerability during their recovery:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eAshley N\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“I remember feeling a little nervous because I was like ‘well what if I say something that doesn't make sense?’ Then, when the conversation started rolling, I felt fine. I felt fulfilled and proud of myself for like speaking vulnerably. I think it was around that time that I found Brené Brown who talks a lot about vulnerability.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003eSharing their stories with a room of strangers bears considerable risk for advocates, despite the support and protection they receive by being part of a mental health organisation. In addition to potential experiences of stigma and judgement from audiences, openly and honestly sharing their story may reopen emotional wounds, risking the potential to be overwhelmed by their feelings in a public setting. Nevertheless, they also expressed feeling great relief and excitement that made their storytelling overwhelmingly positive:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eOdeta\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“I was shaking. I had butterflies in my stomach. But when I got on stage, I knew that I was there for a bigger purpose. So those nerves kind of went away.”\u003c/em\u003e \u003c/p\u003e\u003ch2\u003eEmpowerment\u003c/h2\u003e\u003cp\u003eThese quotes showcase the altruistic and resilience-building nature of advocacy through autobiographical storytelling. More specifically, the advocates primarily sought to share their stories to increase hope and understanding among others rather than to achieve any self-serving goal. Similarly, speaking about their recovery reminded them of the resilience and courage that they demonstrated, helping them embody some of those feelings in the moment of storytelling. As such, each storytelling opportunity encouraged them to reflect further upon how far they had come. Patrice synthesises this feeling in the following quote:\u003c/p\u003e\u003cp\u003eFor me, it’s basically [a way to] reflect every time. I almost learn new facts about myself. Every time I say it, it’s the same story– there's nothing new to it. But each time I tell it, it almost feels like I’m telling it for the first time. And then, later on, I'm like, ‘oh, so this thing in my life could have led to that’ and so on. So, I almost get a better understanding of myself.\u003c/p\u003e\u003cp\u003eTo highlight the significance of this passage, one can revive Merleau-Ponty’s quote that “we indwell language in the same way we indwell our bodies, and through them both we indwell the world.” Retelling one’s story enables that person to embody it, such that the story guides them to discover new things about themselves and their world. Performing or narrating their story to an audience also plays an integral role in this transformative process. Primarily, there is rarely a set script that speakers read off of, encouraging them to memorise the story’s main talking points while leaving room for improvisation and elaboration. Performance also provides an audible voice to the speaker’s thoughts, allowing their voice and body to embody their ideas. As such, every performance becomes an opportunity to focus on something new: the speaker may change the tempo, pitch, or duration of a pause to arrive at a new insight or achieve a different reaction from the audience. Patrice once again captures this transformative experience by saying:\u003c/p\u003e\u003cp\u003eI'm telling this story. I can see [people’s] reactions, and I interpret some of their reactions. And I find it interesting that the majority of the people are like, ‘whoa, this is a big deal.’\u003c/p\u003e\u003cp\u003e This particular example highlights how oral storytelling can become a collective meaning-making experience because audience reactions, feedback, and questions provide speakers with a new way to reflect upon their stories. Notably, the audience helped Patrice understand the significance of his recovery more deeply, as their reactions helped him understand that his healing journey was “a big deal.” In effect, advocates described their talks as empowering experiences because talks helped them become more aware of their inner strengths. Here, empowerment refers to behaving in ways that align with one’s inner states and desires such that one feels more confident in one’s feelings, values, and dispositions (\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e). Empowerment also enables people to rely more on their internal rather than on external resources. As such, advocates moved away from the rewards of harmful body culture (e.g., compliments on their body from others) and instead embraced their inner resilience.\u003c/p\u003e\u003ch2\u003eAuthenticity\u003c/h2\u003e\u003cp\u003eMoreover, feeling empowered helps enhance one's feeling of authenticity, which is the extent to which individuals can connect with and represent their “authentic”selves in various contexts (\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e). In this manner, they were able to cultivate a deeper and more compassionate understanding of themselves and reclaim their identities as being resilient. Such self-transformation and self-fulfilment were also associated with greater subjective well-being. As Patrice described above, sharing and resharing their stories enabled advocates to make sense of their lives. Doing so also enabled them to experience strong positive feelings, including happiness and excitement for future talks and gratitude for their recovery journey. Participating in a mental health organisation also enabled them to witness the positive effect their advocacy had on the community, both immediately through audience reactions and over time by contributing to the organisations’ anti-stigma initiatives. Their hope to inspire future advocacy and strengthen future eating disorder prevention initiatives also gave them the strength and encouragement to continue their advocacy journey.\u003c/p\u003e\u003ch2\u003eAdvocacy as a Tool\u003c/h2\u003e\u003cp\u003eAs mentioned earlier, tools mediate how an object is carried out. In this context, advocacy can be considered as a tool while recovery (i.e., a life unhindered by EDs) is the object. Since the tool of advocacy was associated with positive experiences (e.g., Helpers like happiness and Receivers like pride), advocates became more likely to disengage from EDs while focusing more on their goal of recovery:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eOdeta\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“When I found all of these other tools that gave me so much more intrinsic happiness and self-worth, I was okay of letting that destructive part go.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003eIn this manner, advocacy became an adaptive form of self-care, perhaps because of its altruistic nature and prosocial impact (\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e). This example also highlights how activity theory compliments and augments the role of actants (i.e., Helper and Receiver) while shielding against the Opponents that hinder the subject-object relationship. That is to say, while feelings of happiness and self-worth associated with the advocacy continue to maintain the path towards recovery, they also buffered the impact of elements that opposed the recovery process.\u003c/p\u003e\u003ch2\u003eOpponents: never good enough\u003c/h2\u003e\u003cp\u003eDespite the helpers and protective factors that supported the advocate’s recovery, several opponents challenged the recovery process. \u003cem\u003eAffect Opponents\u003c/em\u003e included shame with their ED, self-judgment, and sadness with their lives. A key \u003cem\u003eSelf-perception Opponent\u003c/em\u003e was the tendency of advocates to internalise unrealistic standards of recovery brought upon by society (e.g., no longer presenting ED thoughts or behaviours). \u003cem\u003eSocial Opponents\u003c/em\u003e included the following: 1. susceptibility to harmful body culture and ED stigma, 2. Advocates’ perceptions of society’s low understanding of EDs, and 3. Advocates’ feelings of constant invalidation of their experiences. What connected these Opponents was the domineering belief that advocates were somehow inadequate or not good enough:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eKat\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“I’ve definitely felt like I’m not enough. I'm not being enough as an advocate, not doing enough in the world–or not resting enough when that’s probably the most important thing you can do.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003eThe identified risk factors for this deep-rooted belief include invalidation from parental figures, early experiences of bullying, and complex relationships with one’s ED, all of which have been found to negatively impact self-esteem. In addition to these factors, the media was also noted as a force that influenced their sense of self. Media can effectively broadcast social expectations for a variety of social ideals, from the drive for excessive thinness (\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e) to the endorsement of unrealistic depictions of “healthy” living. Advocates grew up being exposed to these pressures and continued to see them during their recovery, with the media dictating what is considered a “healthy” lifestyle or what can be defined as recovery. These topics were also discussed in the advocates’ social circles, from interactions with their families to those with hospital staff who pressured them to acquire a specific image of recovery. Although advocates had learned to internalise these social pressures, drawing upon self-care tools and rules continued to steer their path toward healing:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eKat\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“With practice, I learned how to tune out the negative self-talk. It just takes time, I think, and knowing yourself and being able to pinpoint when you might need a little bit more self-love.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003eCatherine further highlights how she felt it was important to share her story to provide a more realistic and authentic portrayal of recovery:\u003c/p\u003e\u003cp\u003eThere are still days that are hard for you, and there are still things that are tricky for you. But it's when people hear that they know that they're also not alone in that they don't feel like they're perfect in their recovery and I think that really helped um but I'm being very nervous at first.\u003c/p\u003e\u003cp\u003eIn addition to emphasising the possibility of recovery, her quote also exemplifies how each recovery is unique and personal; there is no “perfect” recovery. Rather, recovery is difficult and nonlinear, all while being possible. Highlighting this message throughout their advocacy therefore served as a reminder to themselves while combatting the overbearing sense of isolation that comes with having EDs.\u003c/p\u003e\u003ch2\u003eReceivers: Altruistic behaviours\u003c/h2\u003e\u003cp\u003e \u003cem\u003eAffect Receivers\u003c/em\u003e (i.e., gains from this recovery process) included pride, relief, and excitement as they shared their ED stories. Advocates also cultivated self-worth by realising their story matters; as such, \u003cem\u003ethe Self-perception Receiver\u003c/em\u003e was the altruistic desire to share one’s story and help others realise that they are not alone. Finally, \u003cem\u003eSocial Receivers\u003c/em\u003e were the benefits of sharing their stories, including encouraging conversations on EDs, enhancing ED literacy, and applying lived experiences to enhance ED prevention and treatment programs.\u003c/p\u003e\u003cp\u003eAdvocates reported having altruistic motivations that encouraged their ED advocacy, even if they were to receive no external rewards or were punished for their actions (\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). Jay exemplified this altruistic trait by speaking up against family members who “blatantly call[ed] someone fat.” Other advocates also argued against authority figures who normalised stigmatising attitudes toward EDs; for instance, Sarah spoke up against an employer who fat-shamed her colleagues, while Daphne criticised a professor who promoted diet culture in their lectures. These everyday moments of advocacy began to develop their confidence in speaking up while helping them realise the positive social impact of their actions.\u003c/p\u003e\u003cp\u003eOrganisational advocacy continued to enhance this altruism because it encouraged advocates to reflect on the prosocial impacts of sharing their stories. Above all, they hoped that their stories could help combat the significant loneliness and stigma that individuals may experience when living with EDs. Odeta exemplified this feeling:\u003c/p\u003e\u003cp\u003eThe impact I wanted [my story] to have was hope. I wanted somebody to feel seen. After the first speech I gave, a mom came up to me and shared her daughter’s struggles with an eating disorder. She was on the verge of tears saying, ‘Oh, it was so beautiful hearing your story and seeing so much of my daughter in you. Thank you for sharing that.’ Even on social media when I've shared about my journey, I've gotten personal messages of people sharing their story with me.\u003c/p\u003e\u003cp\u003eThrough the activity theory lens, since the availability and accessibilities of relevant tools mediate the subject-community relationship, one must consider the role of social media and the internet in maximising the advocate’s outreach. These tools enabled advocates to receive positive feedback from viewers, helping them feel relieved and empowered by sharing their stories. Mental health events and organisations offer another unit of analysis; they provide platforms, funding, and wide outreach to communities, while advocates demonstrated personal, moral, and altruistic virtues to effectively connect with and educate that community.\u003c/p\u003e\u003cp\u003eIn addition to gaining audience feedback and reflecting more deeply upon their lives, advocates noted the wider social benefits of their advocacy, including the possibility of normalising conversations on EDs in educational and healthcare settings:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eAshley S (an educator)\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e” I really want schools to have a comprehensive and compassionate curriculum that prioritises mental health, including eating disorders. I want them to have eating disorder support and resources, even if it’s just normalising the language around it. I want it to be something that kids feel comfortable talking about because it is very much something that they go through.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cstrong\u003eCatherine (an occupational therapist)\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“[in ED-ucation], we shift how we talk about our food, our bodies, and everything in a way that's more body neutral and how to look at ourselves as wonderful human beings and not feed into the diet culture world of today.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003eAs seen in these instances, several advocates sought to deepen their understanding of EDs and integrate this knowledge into their professional lives. For instance, while Ashely S took an ED-informed approach in her teaching, Catherine sought to provide more equitable ED treatments for her clients. They also highlight the pervasiveness of ED stigma and the need to enact positive social change. Advocates identified storytelling as one key avenue to combat this stigma:\u003c/p\u003e\u003cp\u003e \u003cstrong\u003eOdeta (Yoga instructor and wellness practitioner)\u003c/strong\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003e“Having people who have recovered to speak at schools [gives] children a real person they can listen to. Humans are social creatures and natural storytellers. That’s the way we learn best... I never got that when I was in school, so I dealt with all these really big emotions as a teenager.”\u003c/em\u003e \u003c/p\u003e\u003cp\u003eEstablishing safe and compassionate relationships with ED survivors through advocacy organisations could serve as an effective way to prevent the risk of EDs or maintain young people’s path toward recovery. Doing so is particularly helpful for youth and young adults, who present some of the most frequent and severe cases of EDs (\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e). These contact-based interventions can integrate advocacy and storytelling initiatives to make the programs more personally meaningful for the youth and advocates involved. Future studies can investigate the efficacy of such contact-based interventions in schools or healthcare settings.\u003c/p\u003e\u003ch2\u003eLimitations\u003c/h2\u003e\u003cp\u003eDespite the findings of this study, there are several limitations to consider. First, the authors did not rely upon ED questionnaires during recruitment and did not require advocates to have formal diagnoses to qualify. In doing so, the authors wished to acknowledge the discrimination and sociocultural barriers that prevent most individuals from receiving fair ED assessments, though this decision may limit the ability to standardise results across studies (\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e). Another limitation was the difficulty to determine exactly when or how the recovery process started. Advocates struggled to pinpoint this exact moment because of various hardships or “relapses” that occurred after their willingness to pursue recovery. Nevertheless, sharing these difficulties and striving to overcome them emphasised the non-linear nature of recovery, helping to strengthen rather than disempower the advocates. Considering the multifaceted nature of recovery can provide a more in-depth analysis of people’s perceptions of this phenomenon (\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e). Finally, given the qualitative nature of the study, it was difficult to delineate the extent to which different factors mediated the relationship between advocacy and recovery or whether the desire for recovery preceded or followed the desire to engage in advocacy. Future quantitative studies can identify the temporality of these relationships while further elucidating the role of different mediators.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis paper offers storytelling praxis as an accessible way to encourage ED literacy in various domains. For instance, healthcare professionals may benefit from listening to stories of recoverees in their training. Reports highlight how inexperienced health providers show strong negative reactions to ED patients, including frustration, hopelessness, and low competence. Workers can also become desensitised to the physical condition of patients (\u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e), while some struggle to remain empathetic and respectful in their patient interactions (\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e). Since patients deeply value empathetic care, intentionally listening to ED stories can help maintain this positive relationship while offering insight into how to provide better care (\u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e). Storytelling can also empower patients and recoverees to challenge dominant narratives on EDs. One of these narratives involves the notion that one can \u0026ldquo;complete\u0026rdquo; recovery, while the stories of advocates in this study showed how recovery is an ongoing process. Finally, storytelling enables advocates to position themselves in their larger life narratives, providing the opportunity to explore social structures (e.g., hypersexualised beauty culture) that motivate their disorders. As such, this study is part of an emerging field of empirical literature that challenges the medicalisation of EDs, helping us move towards more holistic interventions that interrogate oppressive structures and empower individuals to reclaim their life stories. Future research can investigate the implications of implicating these findings into anti-stigma interventions and therapeutic programs. Doing so can contribute to growing initiatives that empower individuals to seek help while raising more compassion across their communities.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eEating Disorder\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eED\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u0026nbsp;\u003cbr\u003e\u0026nbsp;The authors would like to acknowledge the time and devotion of the advocates who made this study possible. They also wish to acknowledge the diligent research assistants who helped transcribe and analyse this study’s data: Fiona McKay, Maryam Taj, Charlyn Marie Cerdan, Ban Al-Qadhi, and Gretl Baghdadi. Finally, they would like to acknowledge Michael Koslowski and Stacy Costa for guiding the writing of this manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBoth authors made substantive contributions to this paper; this work included the conception of this research, along with consideration and review of the data analysis. KH prepared the paper, while both authors contributed to its final review.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent and ethics approval were obtained from the REB at the University of Toronto (protocol number: 39770).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWritten informed consent for the publication of individual data was obtained at the time of the initial study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003cbr\u003e\u0026nbsp;\u003c/strong\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor details\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e1\u003c/sup\u003eDepartment of Applied Psychology \u0026amp; Human Development, Ontario Institute for Studies in Education, University of Toronto, Toronto, Canada.\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e2\u003c/sup\u003e Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Kitchener, Canada.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eBryant E, Touyz S, Maguire S. Public perceptions of people with eating disorders: Commentary on results from the 2022 Australian national survey of mental health-related stigma and discrimination. Journal of Eating Disorders [Internet]. 2023 Apr 16 [cited 2023 May 31];11(1):62. Available from: https://doi.org/10.1186/s40337-023-00786-z\u003c/li\u003e\n \u003cli\u003eCrisp AH, Gelder MG, Rix S, Meltzer HI, Rowlands OJ. Stigmatisation of people with mental illnesses. The British Journal of Psychiatry [Internet]. 2000 Jul [cited 2023 May 31];177(1):4\u0026ndash;7. 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Available from: https://doi.org/10.1080/10640266.2019.1605778\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"eating disorder, stigma, storytelling, Actantial analysis.","lastPublishedDoi":"10.21203/rs.3.rs-3997775/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3997775/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e: Although eating disorders (EDs) are among the most stigmatised mental illnesses, a number of individuals break past this stigma and engage in ED advocacy by sharing their recovery stories. Little is known, however, about the role of such advocacy in their healing journeys.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: To bridge this gap, this study examines the role of autobiographical oral storytelling in the ED recovery of adult advocates. Autobiographical oral history interviews were carried out with adult advocates (n = 16) recovering from EDs. The data were analysed using a mixture of Semiotic and Actantial analyses.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: Advocates chose to share their ED stories as a way to embody resilience and make meaning from their ED experiences. Beyond personal gains, the social benefits of sharing their stories included raising hope and openness to converse further with audiences, advocating for greater ED resources (e.g., ED literacy among school staff), and offering new training initiatives for healthcare professionals.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e: Engaging in advocacy through storytelling can positively affect both the advocates and the audiences with whom they connect. Future studies, informed by feminist biopsychosocial frameworks, can examine storytelling as a therapeutic intervention. Such frameworks serve as alternatives to biomedical models of EDs and mental illnesses. They also emphasise the need for broader changes that destabilise oppressive body cultures and display how storytelling can help mobilise change.\u003c/p\u003e","manuscriptTitle":"Advocacy through storytelling: Challenging Eating Disorders and Eating Disorders Stigma","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-03-06 04:07:30","doi":"10.21203/rs.3.rs-3997775/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-05-20T16:27:11+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-05-20T06:04:56+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"217381707507170747041128667136496125533","date":"2024-04-29T22:05:37+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-03-18T14:33:09+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"3aa1926b-c9a0-4344-96aa-9414e688d123","date":"2024-03-17T23:39:09+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-03-17T18:04:33+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-03-07T04:15:40+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-03-06T07:38:49+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Eating Disorders","date":"2024-02-28T20:55:56+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-eating-disorders","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"joed","sideBox":"Learn more about [Journal of Eating Disorders](http://jeatdisord.biomedcentral.com)","snPcode":"40337","submissionUrl":"https://submission.nature.com/new-submission/40337/3","title":"Journal of Eating Disorders","twitterHandle":"@JEatDisord","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"e356cd1f-4db7-4545-8643-ecc9782f68c7","owner":[],"postedDate":"March 6th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-09-23T16:03:26+00:00","versionOfRecord":{"articleIdentity":"rs-3997775","link":"https://doi.org/10.1186/s40337-024-01099-5","journal":{"identity":"journal-of-eating-disorders","isVorOnly":false,"title":"Journal of Eating Disorders"},"publishedOn":"2024-09-19 15:57:39","publishedOnDateReadable":"September 19th, 2024"},"versionCreatedAt":"2024-03-06 04:07:30","video":"","vorDoi":"10.1186/s40337-024-01099-5","vorDoiUrl":"https://doi.org/10.1186/s40337-024-01099-5","workflowStages":[]},"version":"v1","identity":"rs-3997775","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3997775","identity":"rs-3997775","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}