Empowered by Hope: Insights from Lived Experience in Eating Disorder Recovery

Abstract

This chapter will explore the transformative power of hope, drawing from both my personal battle with the eating disorder (ED) anorexia nervosa (AN) and the clinical insights I have gained since working on an ED inpatient unit during a placement as an MSc student. It was through fostering hope that I was able to support myself and promote recovery, a pattern I have observed frequently in practice. This chapter will explore how hope can be instilled through recovery-promoting strategies such as creativity and goal setting, alongside the value of relationships and lived experience support. Overall, I advocate for a more optimistic and empowering approach to mental health recovery, particularly in the context of EDs, which can be achieved through spreading hope and sharing stories of recovery.

1. Introduction

Within the context of mental illness, hope emerges as an indispensable force, aptly defined by the late Desmond Tutu as ‘being able to see that there is light despite all of the darkness’ [1]. This chapter will explore the transformative power of hope, drawing from both my personal battle with the eating disorder (ED) anorexia nervosa (AN) and the clinical insights I have gained since working on an ED inpatient unit placement as an MSc student. I will share how hope can be fostered on the path to recovery through creativity, supportive relationships, goal-setting, and lived experience support.

1.1 My story

When I was 14 years old, I found myself entangled in a struggle with food and exercise. Initially, it was my enthusiasm for middle-distance running that contributed to my overexercising and focusing on ‘clean’ eating. Quickly, the foods I deemed healthy became less and less calorific, and the runs I went on longer and longer. Inevitably, my weight plummeted. Surprisingly, though my initial motivation was not driven by body image, I found myself besieged by body dysmorphia. I lost the ability to perceive myself accurately. Instead, I viewed my transformed body as a ‘work in progress,’ convinced that more weight needed shedding to achieve a prime athletic physique.

AN takes on two distinct forms: the restricting subtype and the binge-purge subtype [2]. It was when, in a desperate attempt to shed even more weight I engaged in the latter and could no longer deny the unhealthy path I was on. Despite this realization, I was terrified to even entertain the thought of the alternative—eating more and keeping it down. Indeed, AN cruelly operates on the paradoxical principle that the individual’s worst fear, food, is their necessary medicine. Therefore, the preservation of destructive behaviors became my top priority, eclipsing everything else.

Fortunately, with intervention from my parents, who took me to a GP appointment, I was referred to Child and Adolescent Mental Health Services (CAHMS). On my initial visit, I was told I was grappling with AN (for formulation see Table 1). With a body mass index (BMI) of 14 kg/m2, I met the threshold for hospital admission [3]. However, I was granted a mere week to gain weight at home to avoid this. Outpatient treatments provide care in the least restrictive setting and thus are favored by current psychiatric practice [4]. So, for me, like many others, outpatient care was explored as the first-line treatment. I was subsequently placed on ‘bed rest’ at home for the following weeks to gain weight. The stringent measures imposed by the clinicians completely restricted my freedom and, in some ways, bore a resemblance to the sudden restrictions later imposed during the COVID-19 pandemic.

Predisposing factors	Perfectionism
Precipitating factors	Loss of appetite and resulting weight loss
Perpetuating factors	Effects of starvation; Parents not in charge of meals
Protective factors	Expresses a wish to gain weight; Parental support and consistency; Parental commitment

Table 1.

Table of formulation by my consultant child and adolescent psychiatrist.

Phoebe meets the criteria for a DSM-5 diagnosis of Anorexia Nervosa. There are no current comorbidities.

Poignantly, whilst I was away from school, a teacher cautioned my friends to not get their hopes up as I would ‘never fully recover’. This prognosis instilled in me a profound sense of hopelessness. Not only was I physically confined to my home, but I also felt emotionally confined by the belief that any recovery efforts were futile. I felt trapped in a perpetual anorexic existence. My teacher was not alone in her concern, as many people question whether it is possible to ever fully recover from AN [5]. Indeed, even the statistics surrounding recovery seem poor, with less than half of people with AN fully recovering and a third relapsing after treatment, making it one of the most treatment-resistant psychological illnesses [6, 7].

Yet I did manage to find hope during this dark time, and against these odds, I find myself 9 years later typing this chapter as a testament to a fully recovered life. Although definitions of recovery do vary, I have met all definitions of complete recovery concerning physical, behavioral, and psychological indices for many years [8]. Therefore, I want to send the message that real, full, and lasting recovery is possible despite what we are so often told. Now, I am even working with individuals battling with the same illness I overcame. My past has not hindered me but has actually enabled me to bring a deep experiential understanding and empathy to my clinical work. There was so much to be hopeful for.

2. Creativity

So, what enabled me to retain hope during this time?

During my time recovering at home, I created a self-guided scrapbook entitled ‘Healthy Me’. To visualize what life could look like once I was healthy again, I sifted through magazines, selecting images and words to collage on each page. One page simply captured the essence of outdoor walks, emphasizing the sensations of being windswept, the scent of flowers in bloom, and the sights of the different seasons (see Figure 1). Other pages showcased my travel aspirations, one being Cornwall (see Figure 2) and another being South Africa, symbolizing faith that I would be well enough to explore these places for myself. In fact, the entire scrapbook echoed a theme of hope, envisioning my future beyond confinement. I have now witnessed everything I had scrapbooked come to fruition, having been on more walks than I can count, visited both Cornwall and South Africa, and even ventured further abroad. These experiences have been extraordinary, knowing how much I longed for each one, showing that my hope was not in vain.

Figure 1.

The essence of outdoor walks.

Figure 2.

My travel aspirations.

Although this was a self-led activity, scrapbooking is employed by creative arts therapy. The therapeutic and creative process of making art provides a non-verbal way to express thoughts and feelings [9]. This non-verbal process has been shown to reduce the use of defense mechanisms utilized by ED patients to protect themselves and provide a sense of control [10]. Indeed, I found this right-brain-engaging creative activity enabled me to shift from avoiding my feelings to actually feeling them. Furthermore, recent neuroscientific studies suggest that the brain reacts to mental images in the same manner as it does to reality [11]. Therefore, envisioning change through creativity is a very powerful tool. Thus, when I collaged images of going abroad, my mind pictured me there, providing me with a tangible vision of my future beyond AN.

Moreover, creativity in the form of scrapbooking provided me with temporary psychological relief as it served as a distraction from the negative thoughts and emotions that consumed me. Indeed, engaging in creative activities unrelated to disordered behaviors can be transformative for ED patients. I have witnessed this as part of my clinical placement, where I contributed to a weekly music therapy group in an ED inpatient unit. Staff and patients gather to sing and make music, creating a space where distinctions between residents and clinicians blur. Witnessing patients’ faces light up and hearing remarks like ‘We should go on X Factor!’, highlights the escapism that they experienced during this time. The hour of immersive musical expression provides a mental sanctuary, pushing aside disordered thoughts. Therefore, it is no surprise that when used therapeutically, music has been shown to have a positive impact on ED symptomatology [12].

Despite creative arts therapy’s efficacy in helping instil hope through envisionment and escapism, it was not a strategy utilized as part of my treatment. One reason for this may be that CAMHS treatment is mainly based on family interventions. By contrast, adult treatment is based on individual and group therapies and thus might allow more for the employment of techniques such as creative arts therapy [13]. However, I believe there is a need for creative arts therapy to be accessible to ED patients of all ages.

3. Relationships

Another aspect of my recovery that enabled me to retain hope was the presence of supportive relationships.

My parents played a fundamental role in my treatment: they prepared and oversaw all my meals and snacks, enforced the clinicians’ guidelines regarding my freedom, took me to my weekly weigh-in sessions and provided unwavering emotional support. This very significant level of involvement in my recovery was helped by their ability to work from home. As indicated in my formulation (see Table 1), my parents’ support, consistency, and commitment were identified as protective factors from the outset of my recovery journey. Their approach embodied tough love, necessitating difficult decisions on behalf of my well-being. Though I initially resented their firmness, I came to recognize it as a manifestation of their unwavering dedication to my recovery, which instilled in me a profound sense of determination. Their great efforts for my recovery gave me hope as it demonstrated that they believed recovery was possible. As I progressed through recovery and regained control of my life, our relationship evolved into a more balanced dynamic. Despite the extensive support they provided, the ultimate decision to embrace life and pursue recovery rested solely with me, but this was a journey on which they supported me unconditionally, for which I am immensely grateful.

Within the framework of CAMHS treatment, which is centred around family interventions, parents are recognized as pivotal in managing a young person’s ED and bringing about change [13]. Parents are encouraged to take control of their child’s eating until the child is deemed capable of regaining autonomy. Moreover, as parental involvement in the recovery process involves identification of early ED signs, seeking initial help, and navigating the many physical and psychological challenges faced by their child, this begins before commencing treatment [14]. Additionally, the central role of parents in treatment occurs amidst managing other responsibilities such as parenting siblings and maintaining relationships, work, and finances [14]. Optimal parental support has been shown to involve both parents and provide consistency, support, and affirmation [15]. Indeed, I am not alone in recognizing the pivotal role of familial relationships in recovery, as many individuals who have recovered describe their family’s support as instrumental in their journey [16].

At 14, I was fortunate to have a supportive network of friends and in particular a best friend who I boarded with at school during the week. During my ED acquisition, I often appeared emotionally disconnected as I was preoccupied with internal struggles which consumed my thoughts and energy. Despite these challenges and then the additional hurdle of being separated for weeks, our friendship endured. Whilst recovering at home, she often sent me words of encouragement, shared songs that she thought I would like, and even came to visit. This further example of unwavering relational support gave me hope: both directly, through reassurance that I would get better, and indirectly, because it offered a lifeline to the rich friendships I longed to return to. Despite the damage an ED did to our friendship in the short term, it not only endured but ultimately grew stronger over time. Nine years later, we remain best friends. Like many others in recovery, a motivator to heal stemmed from the desire to return to normal, balanced friendships and reclaim my teenage experience. My friendships taught me that I was valued and loved regardless of my struggles, which gave me a strong foundation on which I found the strength to recover.

Friendship holds a central role in adolescent life, yet the onset of an ED can deeply affect these relationships. Developing an ED often leads to emotional and social distancing from friends, and a desire to heal damaged friendships can serve as a significant motivator for recovery [16, 17]. Individuals in recovery express increased hope when they strengthen emotional connections with supportive friends [16]. Additionally, patients with higher levels of social support, particularly from friends, show better outcomes in terms of recovery and reduction of symptoms. High-quality friendships, characterised by support, trust, and low conflict, promote the best outcomes for those in recovery.

In summary, support systems, such as family and friends, have the influence to significantly aid the ED recovery process. ED services must focus on providing support and guidance regarding fostering stable relationships for both parents and individuals in recovery. Due to the pivotal role parents play in child and adolescent ED recovery, it is vital to guide and support them throughout the recovery process. Offering parents training in skills to manage the illness can alleviate the distress of living with someone with AN and improve patient outcomes [18]. Furthermore, connecting parents with online support groups can be instrumental in offering them support, information, and empowerment throughout their child’s recovery journey [19]. Similarly, individuals in recovery should be encouraged to seek and maintain supportive friendships, due to the positive impact this has on their recovery process [16]. Supporting young people in addressing any challenges that may have arisen in friendships due to their illness can help preserve these relationships and prevent long-term negative consequences for the individual.

4. Goal setting

A further strategy that enabled me to support myself and retain hope was goal setting.

Throughout my early adolescence, I battled with a paralyzing fear of underachievement and the pursuit of excessively high personal standards. Indeed, perfectionism has had longstanding implications in the pathogenesis of AN. Perfectionism often precedes ED onset, is implicated as a maintaining mechanism, and remains elevated after recovery [20]. Goal setting, closely linked to perfectionism, also emerges as a significant construct within EDs [21]. This involves making conditional associations between specific body shape and weight goals and the more abstract goal of attaining happiness as an outcome. The fixation on these conditional goals, irrespective of their appropriateness, organized my cognition and behavior whilst I was ill.

In my outpatient treatment plan, clinicians provided recovery goals which were staggered weight targets, each reinforced once achieved. The progression of reinforcement started with regaining the freedom to go on a walk, then returning to school gradually, reintegrating into sports sessions, and ultimately transitioning back to weekly boarding at school. As someone with high perfectionist tendencies, with goal setting ingrained in my illness attribution, I was used to thinking in a blinkered goal-centred way. My transition from prioritizing illness to prioritizing recovery began with these small weight gain goals, each achievement offering increased freedom and a return to aspects of my former life, ultimately shifting the focus of my perfectionism towards achieving full weight restoration. With each step, my hope of recovery was strengthened. Furthermore, within an inpatient setting, I have seen effective goals regarding the completion of nutrition and weight gain, rewarded by increased freedom. Literature supports the use of goals in recovery, as individuals who are provided with specific, challenging but attainable goals perform better than those given easy, nonspecific, or no goals at all [22].

However, my positive experience with goal-setting reinforcement was specific to the context of my care: As a minor at the time, my freedoms were restricted and subsequently reinstated by my parents in line with the goals set by clinicians. The dynamic becomes more complex upon reaching adulthood. In my clinical experience in an inpatient setting, where patients are sectioned, clinicians have the authority to revoke and reinstate freedoms as necessary. However, for adults undergoing outpatient treatment, the process of reinstating freedoms becomes less straightforward, as there are no mechanisms in place for their removal in the first instance.

Furthermore, Locke and Latham [23] outline, in the goal-setting theory of motivation, those goals must be accepted by the individual [23]. Simply assigning goals to someone is not indicative of their commitment to those goals, especially if the goal is difficult to accomplish, such as weight gain for ED patients. A powerful method of aiding acceptance is to allow patients to participate in the goal-setting process. Indeed, early on in Cognitive Behavior Therapy for Eating Disorders (CBT-E) treatment goals are set collaboratively, allowing the individual to then evaluate their progress throughout therapy [24]. However, concerning weight and food-related recovery goals, collaboration is more difficult as AN is defined by denial. Indeed, after my initial assessment, it was noted that I was not in total agreement with the clinician’s plan for my care. However, as my goals were small increments and were reinforced by valued aspects of my former life, it was not long until I was in total agreement due to the motivation this strategy instilled in me.

5. Lived experience support

Finally, a strategy that I believe would have been instrumental in instilling hope during my treatment is the inclusion of lived experience support. Individuals with lived experience of EDs can play a crucial role in assisting those undergoing ED recovery, by offering treatment support, partaking in research, or even working as ED clinicians.

During my outpatient treatment at CAMHS, I expressed a strong desire for support from someone who had made a full recovery from an ED. Like all ED recoveries, my journey was marked by numerous challenges and triumphs, and I firmly believed that guidance from someone who had navigated a similar journey would have been invaluable. However, clinicians at CAMHS revealed a lack of contact with individuals willing to share their lived experience of ED recovery, highlighting a gap in available resources.

Stable ongoing support from individuals who are also in recovery or have recovered from an ED offers patients a connection with others who understand the complexities of the recovery process [16]. Indeed, patients with EDs express that support from individuals with lived experience alleviates feelings of isolation and poignantly provides tangible hope for recovery [16]. This perspective is echoed by both patients and caregivers alike [25]. Furthermore, adults post-recovery expressed that assistance and support had been the most forthcoming and helpful from other individuals who had recovered from an ED, in comparison to professional help which had generally been unhelpful and unempathetic [26]. Therefore, the resource of lived experience support for children in CAMHS could enhance treatment.

In ED research, studies should continue to venture beyond brief self-report questionnaires to capture the experiential perspective of individuals with lived experience of EDs [26]. Understanding the illness through the lens of lived experience offers a comprehensive picture that validates the experiences of those currently struggling with EDs. For example, Redenbach and Lawler’s [27] study, revealed that none of the participants who had recovered from an ED had adopted dysfunctional eating habits to emulate the idealized body image perpetuated by the media [26]. If these findings had been accessible to me, they could have alleviated my perception of being misunderstood, particularly amidst a societal discourse of body image distortion as the primary driver of food refusal [27]. Additionally, gleaning insights from lived experience research would have offered me hope, knowing that others who had had a similar journey to mine had not only successfully attained full recovery but were able to share their narratives to help others.

Additionally, this research is invaluable in informing practice. If outpatient treatment programmes were informed by findings indicating that self-determination and self-acceptance significantly fuel recovery, rather than solely relying on treatment-focused interventions, individuals in recovery may feel more adequately supported and hopeful [26]. Integrating such insights into treatment modalities could empower individuals to take ownership of their recovery journey and foster a greater sense of agency, hope and resilience.

Being an ED clinician with lived experience can assist those undergoing ED recovery as the delivery of psychiatric services can be affected if clinicians have negative reactions to patients with EDs [28]. It is widely accepted that the lived experience of an ED deepens therapists’ understanding of and empathy for clients [25]. A clinician’s feelings towards patients directly impact the therapeutic alliance associated with patient outcomes. Patients stated that being treated by a recovered therapist had a positive effect on their recovery process as recovered therapists serve as positive role models and inspire hope for recovery [29]. This hope is not only due to the demonstration that recovery is possible but also that one can go on to lead a stable and productive life [30]. For me, always having had very high aspirations for myself, seeing clinicians occupying positions of status would have been very powerful. Furthermore, if I would been aided in recovery by someone who knows what ED recovery is like, I would have granted the clinician significant credibility.

However, there are particular challenges to this dual identity of clinician and lived experience expert in the field of EDs. Clinicians with lived experience may lack objectivity, be at risk of relapse, engage in comparison, and blur boundaries [25]. Nevertheless, these risks can be mitigated through therapists meeting specific conditions such as being fully recovered (though definitions of recovery vary widely), receiving additional training and supervision, having high levels of self-awareness, and engaging in therapy [25]. Furthermore, for clinicians, the longer the time since recovery and the more sophisticated the training, the less likely relapse will occur [30]. Personally, I would not have been equipped to handle working on an inpatient ward immediately after my recovery and it is only through the passage of time and the deliberate steps I have taken towards growth that I now feel confident in my ability to handle such responsibilities safely. Moreover, while sharing experiential knowledge can enhance empathy and understanding, it should be done thoughtfully, as it is not always necessary to disclose one’s own experiences to be beneficial to those in care [29].

Furthermore, many clinicians hesitate to speak openly about their struggles due to the stigma surrounding mental health, even within their own field. Concerns about negative consequences for self and career and shame prevent some clinicians from disclosing and help-seeking [31]. Indeed, putting my name to this piece of work was something I thought through deeply, for this very reason. Additionally, while some employers actively seek out ED clinicians with personal experience, others may refuse to hire them, underscoring the diversity of opinions regarding this dual identity within the field [25].

6. Conclusion

Reflecting on my struggles in adolescence through the lens of this chapter has been a profound privilege, allowing me to discern more clearly what helped me ‘see that there is light despite all of the darkness’, and what might help others to see the same. Whilst I was recovering at home, I often sought reassurance from the fact that I could help others in the future with my experience. In ED recovery, the importance of spreading hope regarding recovery is crucial and may have broader implications for the wider field of mental health recovery. No one should ever be told they will never recover and instead sharing strategies and stories can aid recovery and help change this narrative.

After recovering from AN, I initially sought to avoid references to that chapter of my life, hesitant to revisit it in conversations with friends and family. One reason for this was I resisted the notion of being solely defined as a ‘recovered anorexic’, feeling that my identity extended far beyond that label. However, as time passed and I pursued my education, earning a bachelor’s degree in Psychology and later studying for a master’s in Mental Health Studies, I gained a profound appreciation for the power of lived experience insights and the value that comes with embracing a dual identity. Reclaiming the title of a survivor of one of the most challenging mental health disorders has been profoundly empowering for me. It is also a way of honoring the strength and resilience of individuals who have faced similar struggles. While that period of my life was significant, I have come to realize that it has not defined who I am nor confined my future; rather, it has opened doors to opportunities that have arisen directly from my experiences, like writing this chapter.

As more individuals with lived experiences bravely share their stories, the stigma surrounding mental health struggles diminishes, and we begin to see people for who they truly are—individuals with unique stories, strengths, and resilience. I am deeply grateful to everyone who supported me on my journey and told me that recovery was possible. My hope is that anyone facing similar struggles can find that same support and hope, in whatever form it may be. Additionally, the ultimate aim of this chapter is to serve as a testament to the transformative power of hope, illustrating how it can be found through various avenues. And while aspects of my experiences are unique, I hope they resonate with others, offering understanding and inspiration.

In summary, firstly, creativity was a powerful tool for promoting my recovery by fostering hope. Engaging in creative activities not only allowed me to envision life beyond my illness but also provided a means of expression whilst offering a break from disordered thoughts. Creative arts therapy, therefore, should be made available to individuals of all ages struggling with EDs.

Secondly, supportive relationships were instrumental not only in implementing my treatment plan but also in providing me with hope for recovery. The unwavering support from friends and family served as a constant reminder that recovery was possible and reinforced my determination to persevere. Services aimed at treating EDs must prioritize fostering stable relationships between parents, friends, and individuals in recovery, due to the significant role they play.

Thirdly, using small goals to focus my recovery, helped me to remain hopeful and thus support myself. Just one step at a time, achieving each milestone enabled freedom to be gained alongside a sense of accomplishment. While the nature of these goals may vary depending on the individual and their circumstances, the collaborative process of setting and working towards them should be encouraged to ensure optimal commitment and success.

Lastly, individuals with lived experience of eating disorders possess invaluable insights and the potential to contribute to the recovery of others. Whether through offering treatment support, sharing personal narratives in research, or even working as clinicians, their first-hand understanding can offer tangible hope to those undergoing recovery. The integration of support from individuals with lived experience into services, particularly within CAMHS, should be sought.

These are just a few strategies that I feel did or would have supported my recovery by providing me with hope for the future I am now living. I am proud to have joined the individuals who have bravely faced death and chosen life [32].

Notes/thanks/other declarations

I extend my heartfelt gratitude to Hubertus Himmerich for graciously reading my story and inviting me to write it in this book. His wisdom and encouragement have been invaluable, and it has been an absolute privilege to work with him. (This book chapter is a revised and extended version of an essay that I had written for my MSc Mental Health Studies programme).

I also want to express my deep appreciation to my wonderful parents. As highlighted in this chapter, their unwavering support was significant during my recovery; however, this has been a constant throughout my whole life. I hope this chapter can be a small token of my infinite thanks to them both.