The authors used actantial analysis to identify key narrative themes and then further contextualised and expanded upon these results using activity theory. The key actants are summarised in Tables 2 and 3.

Table 2 Helpers and opponents throughout recoveryTable 3 Senders and receivers throughout the recovery periodSender: gaining awareness of the self

Through actantial analysis, the authors identified “gaining awareness of the ED’s destructive nature” as the Sender or the first step in initiating recovery and ED advocacy. Advocates often 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.

Finally, advocates were 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 [54]. 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 [55]. 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. Other advocates also discussed how they were raised to contribute to their community through acts of service while being empathetic and aware of their peers’ emotions.

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 resilient self (i.e., being vulnerable, empowered, and authentic), improved self-regulation skills, 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 [56]. 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” [35]. 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 [57]. 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 [57]. 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 objective 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 [58]. 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 imposed by society (e.g., no longer presenting ED thoughts or behaviours). Social Opponents included the following: (1) Pervasive nature of 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 included 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 [59] 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. A key Self-perception Receiver included advocates’ ability to cultivate self-worth by realising their stories matter; in doing so, they also developed their altruistic desires to share their stories to help others realise that they are not alone. Finally, Social Receivers included 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 [60]. 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 [61]. These contact-based interventions can integrate advocacy and storytelling initiatives to make the programs more personally meaningful for the youth and advocates involved.