The Therapeutic Potential of Eating Disorder Vlogging on YouTube

List of Figures

Figure 1: The P-p-π-model of language

Figure 2: Description of pain

Figure 3: Comments under BN2’s new channel

Figure 4: Systematic inclusion of πH

Figure 5: BN1 in her bathroom

Figure 6: Action pattern of confession

Figure 7: Comments under ED staple foods

Figure 8: Knorr vegetable cubes

Figure 9: Comment under BN2’s video

Figure 10: User asks for reupload

Figure 11: High versus low restriction

Figure 12: ED vloggers’ interaction with food

Figure 13: BN2 in her kitchen

Foreword

This dissertation does not examine intercultural communication in the traditional sense. In the briefest of terms, intercultural communication describes interactions between members of different collectives who do not share the same speech patterns, perception of the world and ideological knowledge—in the sense of “binding and justifying ideas” of a social group (Barker 2012: 504)—and who are, to varying degrees, unaware that their interlocutors do not share their own idea of reality, values and styles of communication. Unlike studies that focus on interactions between speakers of different native languages and from different cultures of origin, this thesis does not offer a pragmalinguistic analysis of communicative events exchanged between members of distinct communities. Instead, it analyzes the illness narratives sufferers from eating disorders uploaded onto the platform YouTube in so-called vlogs. These ED vlogs are monolingual—German, American English and Canadian English—and the speakers, whose stories are the focal point of the empirical analysis, belong to the same cultural sphere. They are females in their early to late twenties, two of them white, who grew up in Western, industrialized, consumer-capitalist societies, are immersed in the same discourses of beauty, fitness, dieting and health, and pursued an academic education. They have far more in common than divides them, particularly since they suffer from similar illnesses—anorexia nervosa and bulimia nervosa—that have shaped their experiences, their understanding of themselves and the world, and their communicative strategies and speech patterns in distinct ways.

Drawing on Redder and Rehbein (1987), this dissertation suggests that communication between mentally ill and mentally healthy individuals can be considered a form of intercultural communication in a narrower sense, and that the intercultural aspect of ED vlogging lies in how affected individuals communicate with different audiences. Mental illnesses are often stigmatized, which creates significant barriers in communication. Those affected frequently struggle to articulate their experiences in ways that are comprehensible to others, and even when they do, their words are often met with skepticism, discomfort, or misunderstanding. This can result in a profound sense of isolation, as mentally ill individuals may feel that their emotions, behaviors, and struggles are unintelligible to those who do not share similar experiences. Conversely, people without personal experience of mental illness may lack the necessary conceptual framework to fully grasp the perspectives of those affected.

This knowledge gap mirrors key aspects of intercultural communication, where differing frames of reference, implicit assumptions, divergent ideological knowledge structures and culturally ingrained ways of understanding the world can lead to misunderstandings and communicative breakdowns. Just as individuals from different cultural backgrounds must navigate these differences to establish mutual understanding, so too are mentally ill individuals confronted with the challenge to find ways to bridge the cognitive and experiential divide that separates them from mentally healthy individuals if they want to feel understood. The empirical analysis of this dissertation demonstrates that the mental spheres of vloggers with eating disorders and their significant others differ substantially—particularly regarding embodied and ideological knowledge structures as well as the perceived integrity of certain (linguistic) action paths to adapt a situation to one’s needs. These differences may result in communicative barriers, much like those observed in “traditional” intercultural encounters. By examining how individuals with eating disorders use the platform YouTube to communicate their struggles, this study sheds light on the ways in which social media sites can serve as a discursive space for overcoming those misunderstandings, misconceptions and stereotypes that perpetuate stigmas. Recording and uploading eating disorder vlogs allow individuals to express their experiences of illness, pain and loss in a critical and reflective manner, offering raw and honest insights into their suffering that might be difficult to convey in face-to-face interactions and that have the potential to induce a change in perspective in anyone who listens.

Looking at illness communication through the lens of the theory of intercultural communication in a narrower sense, this dissertation offers an expanded perspective on what constitutes an intercultural encounter that looks beyond linguistic, national, ethnic and/or religious differences as sources for misunderstandings in order to illustrate the communicative challenges arising among individuals with the same native language due to fundamentally different lived experiences.

Acknowledgments

The completion of this dissertation would not have been possible without the unwavering support of my supervisors Prof. Dr. Stephan Schlickau and Prof. Dr. Beatrix Kreß, who encountered me with respect, encouragement and patience for the extended duration of this project, and whose valuable advice, constructive criticism and extensive knowledge offered me guidance throughout the research process. I extend my deepest gratitude to the both of them for the opportunity to finish this project in my own time and on my own terms. I am also deeply indebted to my colleagues and friends PD Dr. phil. habil. Karsten Senkbeil, whose profound belief in my abilities instilled in me a passion for academia over a decade ago, and Samantha Marzinzik, whose insightful suggestions and sympathetic ear at a crucial time inspired in me the confidence I needed to finish this thesis. Last but certainly not least, I am grateful to my family and friends, who never doubted that I was capable of writing this dissertation even when I did. Ness, Andi, Alice, Anke, Azorito, Krystal, Nawal, I owe you all because I could not have done this without your constant reminders of my skill and inner strength.

CHAPTER 1 Introductory Remarks

This dissertation exists because I am mentally ill. It would not exist in this form and with this specific focus had I not struggled with depression, anxiety, panic attacks and self-harm for the past 22 years. It would not exist had I not failed repeatedly to put into words the elusive, overwhelming chaos in my head and, as a result, been drawn to other individuals’ attempts to articulate in memoirs and documentaries the grueling experiences that mental illness brings in its wake. As Ong, deHaes, Hoos and Lammes (1995: 906) summarized very pointedly, there are two different needs characteristic for the situation of illness: The need to understand one’s condition for oneself and the need to feel understood by others. As a suffering adolescent, I read countless books because I was utterly lost without a proper diagnosis that would have ensured pertinent psychological treatment and found solace in other people’s stories of suffering and healing.

My academic interest in how individuals suffering from a serious illness attempt to communicate to non-sufferers their experiences developed when I attended a seminar that focused the explanatory power of conceptual metaphors (Lakoff & Johnson 1980, 1999, Fauconnier & Turner 2002, Fauconnier 2006, Kövecses 2002, Deignan 2012) in the summer of 2013. Arguing that metaphors are not purely linguistic devices or surface phenomena but an integral, fundamental part of human thought that shapes our understanding of abstractions, Conceptual Metaphor Theory (CMT) posits that intangible concepts such as emotions and distress are understood and expressed through metaphorical mappings onto more concrete and familiar experiences, such as experiencing physical force or temperatures. In order to write the term paper for this seminar that emphasized the importance of metaphors for describing the indescribable, I chose to analyze the book Wasted: A Memoir of Anorexia and Bulimia written by Marya Hornbacher (1998) for several reasons. The first was that eating disorders—defined as a severe and persistent disturbance in eating behavior as well as eating-related thoughts and emotions (Heller 2003)—are a type of mental illness I personally have only temporary, limited experience with and I was convinced at that time that it was a prerequisite for successful research to remain as objective as possible. The second reason was that the author herself emphasized how, even after finishing the book, she found her “lexicon vastly insufficient” to describe her struggles with eating disorders because “the words lack shape and taste, temperature and weight” (Hornbacher 1998: 275), which turned the linguistic means she did choose despite their “inadequacy” into an even more intriguing object of research. The third reason was my surprise that this book was such a great critical and commercial success—it reached the New York Times bestseller list, became Pulitzer Prize shortlisted, sold over a million copies in the United States alone and was translated into 14 languages—even though eating disorders had been extensively researched academically and were no longer a mystery to the general population either in the late 1990ies. I focused on the conceptual metaphors the young author used in order to make her experiences accessible for the audience and, in a research paper that grew out of this term paper, we argued that it was Hornbacher’s ability to reframe conceptual metaphors in creative ways that created interpersonal empathy for her extraordinary bodily experiences and immersed the audience in her story (Senkbeil & Hoppe 2016: 14).

After the publication of this paper and the completion of my postgraduate degree, the sustained prevalence of eating disorders 17 years after the release of Hornbacher’s book struck me as a “pressing social issue” (van Dijk 1993: 252) that deserved further investigation from a linguistic standpoint that looks beyond metaphor. It is estimated that the global eating disorder prevalence has increased from 3.4.% to 7.8% between the years of 2000 and 2018 (Galmiche et al. 2019) and that, nowadays, about 70 million people worldwide are affected by an eating disorder (National Eating Disorder Association 2023). While opioid addiction leads the list of psychiatric diseases that claim the most lives across the globe, eating disorders have the second highest mortality rate among mental illnesses (Arcelus, Mitchell & Wales 2011), with suicide being one of the leading causes (Goldstein & Gvion 2019). Despite a general understanding from medico-therapeutic, psychological, sociological, cultural studies as well as polito-critical feminist perspectives (see Saukko 2008 for an overview) of how eating disorders develop, and of how dangerous they are, millions of people worldwide continue to suffer due to equally persistent stigma and misinformation.

In the early phase of my research, I set my academic sights on the empirical analysis of communication in the shielded communicative space of eating disorder support groups and initially planned to write my doctoral dissertation about the joint meaning construction of individuals who suffer from the same illness in order to examine whether the creative use of metaphors is beneficial in interpersonal communication as well. In contrast to the one-sided linguistic activity of writing a book that involves the constant mental anticipation of how the reader might understand one’s attempts to explain oneself, I theorized that authentic data of several interlocutors who are physically co-present in the same space of perception (Rehbein 2001: 928) might provide insight into how similarly harrowing experiences might bring forth similar ways of translating mental concepts and embodied experiences (Johnson 1987, Lakoff & Johnson 1999) into linguistic structures. Based on the pragmatic precept that “the concept of mutual knowledge provides a powerful solution for explaining how interlocutors successfully coordinate meanings” (Horton 2012: 378), I hoped that researching co-constructed discourse would contribute to a deeper understanding of what causes eating-disordered individuals to suffer, both on the subjective and the collective level. I began to contact several self-help groups in the area but soon realized that, while the leaders of those groups appeared enthusiastic about my project and welcomed my efforts to approach communication about eating disorders from a linguistic perspective, the participants themselves did not give me their consent to record them; even when I assured everyone involved that the transcripts I was going to produce of the recorded sessions were going to be fully anonymized. I tried several times and, ultimately, became aware of how deeply ashamed some of these individuals must feel and how much stigma is truly attached to suffering from a mental illness. This realization was accompanied by a growing interest in the communicative functions of the text type illness narrative (Kleinman 1988, Hydén 1997, Lepore & Smyth 2002, Gülich 2005, Frank 2010) beyond what I always perceived as the primary one of trying to make sense of one’s condition for oneself and foster understanding in others. Due to the moral inhibitions that rose in me whenever I planned to contact another group and the uncomfortable hesitation about the dissertation project as a whole because I did not want to impose myself on individuals who are vulnerable and unwell, I abandoned the idea of recording self-help group communication.

Instead, I took to social media and began to look at illness narratives told by individuals who had already voluntarily shared their experiences with an audience online, and thus discovered YouTube as a communicative space, in which sufferers give their account of countless serious, life-changing and potentially fatal physical and mental illnesses, including eating disorders, in so-called vlogs. Short for video log or videographed blog, the category vlog comprises many different types of videos that, in essence, share something of value from the vlogger’s life (Staley 2017: 7) stemming directly from personal life experience or expertise in different areas. They can take the form of political comments, social commentaries, reviews of computer games or beauty products, educational instructions or simply be a videographed diary entry of daily activities (ibid.: 4). When I began collecting my data in the spring of 2016, many publications had already emphasized YouTube’s allure as a social media platform that fostered online participatory culture as one of the first applications (Burgess & Green 2009, Raun 2012, Shifman 2012, Marek 2013, to name only a few) and allowed ordinary people to tell extraordinary stories (Strangelove 2010, title). Researchers had found that vlogs enjoyed an ever-growing popularity because they “allowed communication at a more personal, realistic level” than the written word in text blogs and give those affected the opportunity “to raise awareness about themselves or other issues” (Warmbrodt, Sheng, Hall & Cao 2012: 76), such as illness as well as social marginalization due to illness and stigma. With regard to communicating matters of illness, however, the initial scholarly concern was devoted to how YouTube, as a medium for (mostly private) storytelling, could potentially endanger the dissemination of “accurate” health-related information in public discourse (Madathil et al. 2015, Briones et al. 2012) and only gradually shifted toward the “greater advantage of the empirical riches of YouTube vlogs” (Fullenkamp 2020: 89). Researchers examined the visual aspects of vlogging and found that the medium video generated different layers of meaning that can be conveyed through, for instance, nonverbal cues such as pauses, crying, gestures, facial expressions and a specific manner of dress that forge strong emotional connections between the YouTubers and their audience, and the incorporation of one’s body and spatial surroundings that enhance the intimacy and intensity of the narrative (Chou, Hunt, Folkers & Auguston 2011, Huh et al. 2014, Harris, Kelly & Wyatt 2014, Horak 2014, Raun 2016).

Browsing through eating disorder vlogs on YouTube, I came across a bulimia sufferer who stated that three years of vlogging about her struggles has helped her more than a year in psychotherapy (BN1, video 23, E45).¹ This intriguing statement combined with the findings of previous research on YouTube illness stories excited both my personal and my academic curiosity, and I chose to focus my doctoral research on examining the curative or therapeutic potential of vlogging about illness experience in one’s own discursive space that is, at first glance, not restricted by a clear institutional role distribution or dictated by dominant discourses about medicine, health or physical and mental well-being. In order to make a linguistic and, more specifically, pragmatic contribution to a field that is commonly regarded as (digital) health communication² (Fitzpatrick 2023, Altendorfer 2019, Scherenberg & Pundt 2018), I set out to systematically describe the communicative setting of the eating disorder vlog with an action-theoretical approach to language in use.

Briefly put, such an approach analyzes linguistic structures “as the result of action needs in human communication” (Ehlich 1999b: 25) and posits that all interpersonal interaction is an attempt to grant one’s interlocutor access to one’s own subjective constructions of experience, meaning and reality (Ehlich 1996: 922). Mental illness experience entails a persistent change in mood, thinking and behavior that causes frequent stress, affects an individual’s ability to exercise control in daily situations, impairs rational thinking and leads to symptoms such as confusion, agitation, anxiety, depression, decrease in energy levels, reduced ability to concentrate, social withdrawal, low self-esteem, substance abuse, major changes in eating habits, dissociation, detachment from reality, insomnia and/or suicidal thinking (Mayo Clinic 2022). Untreated, it permeates every aspect of daily life but is, at the same time, hard to grasp and even harder to communicate (Gülich 2005). It paralyzes a person and diminishes their agency (Frank 2010). As I can tell from personal experience and from the data without anticipating too much, the primary needs that arise in the individual in times of such distress are the need to understand one’s own inability to pursue change despite rationally “knowing better” than to engage in destructive coping mechanisms and to overcome the shame and stigma of failure attached to most conditions in order to convince other people that this struggle is utterly exhausting.

Language is a tool available to most human beings to take care of those needs. The institution of psychotherapy, for instance, is based on the premise that language heals. Speaking, writing and, consequently, vlogging about mental illness experience despite its inherent indescribability and its debilitation can be considered a linguistic action path that serves the superordinate purposes of restoring some of the agency lost to the disease (Scarvaglieri 2013), decrease the intensity of the experience (Lepore & Smyth 2002) or reformulate psychological experiences (Pawelczyk 2011a).

The structure of this dissertation reflects my attempt to approach the reconstruction of how eating disorder (ED) vloggers make use of language in order to adapt an excruciating constellation of reality to their (communicative) needs and achieve an alleviation of their distress through the activity. This is, ultimately, how I interpret the terms “curative” or “therapeutic”: Not (necessarily) in the sense that uploading videos is a catalyst for recovery but in the sense that the act must provide those affected with temporary pain relief.

Eating disorders have not evolved in a void. Food consumption is vital for biological survival, constitutes an integral part of social life in many different cultures and is fraught with myths and ideologies in societies with highly developed consumer capitalism (Klotter 2014, Barlösius 2011). The first part of Chapter 2 will discuss the sociocultural dimension of eating disorders in order to demonstrate that the ED vloggers’ attitude toward and perception of their bodies, eating, food, their illnesses as well as the (sometimes rather) abstract concepts of health and recovery are the result of living in a specific culture at a specific point in time and having absorbed discourses constituent of that time. The second part of Chapter 2 will discuss the role of the illness narrative in the social sciences in order to show that communicating about illness is embedded in existing linguistic structures and patterns available to the members of a specific language community, and will list some of the major communicative functions that have been ascribed to illness narratives, such as sense-making (Kleinman 1988, Sharf and Vanderford 2009, Gülich 2005), demoralizing (Bury 2001, Matthews et al. 2017, Charmaz 1999), challenging dominant discourses of health and medicine (Fisher 1991, Hydén 1997, Plunger 2013), and destigmatizing (Raun 2012, Cvetkovich 2003, Frank 2010). Based on the review of the literature, I will present my set of research questions in Chapter 3 and further discuss how they relate to and emerge from the theoretical assumptions. Chapter 4 will present the critical (speech) action-theoretical approach I have applied to my empirical data in order to reconstruct ED vlogging as an ensemble of paths of (linguistic) action that is available to diseased individuals in times when their agency is diminished by illness. I will discuss how social reality, knowledge—cultural, embodied, ideological and otherwise—and linguistic representation are interwoven in the integral action theory of Functional Pragmatics (Rehbein 2001, Redder 2008, Ehlich 1999a) and how such an approach can be used to systematically reconstruct the role the interlocutor plays in the communicative process of ED vlogging. Since the benefits ascribed to communicating with metaphors in illness communication are indisputable (Brünner & Gülich 2002, McMullen 2008, Kopp 2013), the second part of the fourth chapter will present Conceptual Metaphor Theory in the Lakoffian tradition as a complementary tool for the analysis of those instances of figurative language in which the speakers refer to themselves, their mind, their disorders and their relationship with their disorders as well as their relationship with their bodies and minds with the help of more concrete source domains. Chapter 5 will give a brief overview of how I selected, collected and transcribed my data that consists of three main eating disorder channels and 33 hours of video material. The empirical part of this dissertation is comprised of Chapters 6, 7 and 8, which present the linguistic action paths that these three ED vloggers traveled over the course of their vlogging history. The concluding remarks offer a critical theoretical and methodological discussion of the results (Chapter 9) as well as future implications for the analysis of mental illness communication (Chapter 10).