A leading UK Eating Disorder(s) (ED) charity, Beat (2019), estimates that 1.25 million UK individuals have EDs, including Anorexia Nervosa (AN), Bulimia Nervosa (BN), and Avoidant/Restrictive Food Intake Disorder (ARFID). ARFID is a heterogeneous psychiatric disorder and is common among young individuals (Thomas et al., 2017). American Psychiatric Association’s (APA) (2013) and the International Classification of Diseases (ICD-11) (World Health Organization, 2019), define ARFID as 1) An eating or feeding disturbance; 2) avoidance of high sensitivity to sensory components of food; 3) anxiety and fear of aversive consequences (National Eating Disorders Association, 2022). Sufferers can demonstrate one or more of these manifestations (APA, 2013).
ARFID shares similarities with AN in that the two conditions result in restrictions on quantity and/or types of food eaten, however in contrast to AN, ARFID is not associated with fears over one’s physique (body-size), and/or feelings of fatness (National Eating Disorders Association, 2022). Koomar et al. (2021) assert ARFID symptomatically maybe restrictive and repetitive when it comes to sensory sensitivities affecting eating traits. Furthermore, ARFID can exhibit other psychiatric comorbidities, like Autism (Brigham et al., 2018). However, according to Sanchez-Cerezo et al.’s (2023) systematic review, research on the epidemiology of ARFID is scarce, and Bryant-Waugh et al. (2020) also notes that ARFID is under-recognised and underdiagnosed in the UK.
While ARFID is reported as a new diagnosis in DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), still the exact prevalence is unknown; however, this may range between 5–13% of patients in psychiatric settings (Spicer et al., 2019). Diagnoses were frequently identified in individuals, who experienced eating challenges lasting beyond childhood (Norris et al., 2016). Howard et al., (2023) also report that most ARFID studies are conducted in children and adolescents, and less research amongst adults (Bradbury, 2020) .
Sharing ED Lived Experiences (LEs) is common on internet platforms; and due to the novelty of ARFID and the adult LEs phenomenon compared to other EDs, encapsulating these stories online could offer an insightful direction for researchers and offer a newer perspective. In this paper, the term Social Media (SM) is referred to as opposed to internet/ online platforms.
The following section reviews existing literature related to the phenomena of sharing personal narratives through the lens of cyberpsychology (online blogging) and examines how sharing personal experiences on the internet helps individuals with their recovery or at least understanding their illness. There will be a mix of empirical studies, some of which analyse blogs whilst one research used interviews to compare results. It is important to include studies that focus on contemporary EDs which have not been formally recognised by health authorities.
Literature Review
Cyberspace utilisation around peer-to-peer connection is one of its greatest transforming web-appearances. Social Media (SM) is a convenient platform for individuals to develop online connections and this increases human connectedness (Cannon et al., 2017). Research reports users engage in SM to discuss health-related issues and chronic illnesses (Salzmann-Erikson & Hiçdurmaz, 2017), and how this can be supportive.
In the last decade, according to Ngwenya et al. (2014), there was an upsurge in the usage of SM. A weblog (blog) is an internet site that keeps a diary account on particular topics. Blogs can be private or open to the public, with the ability for others to comment and engage with the writer. Blogging has become one of the fastest-growing technological advances, with 7% of adults in the USA writing a blog and 27% reading one. It is also estimated that there are 600 million blogs today (Byers, 2022).
Blogs provide a perspective on an individual's mental, emotional, and, in some cases, physical health, indicating bloggers sharing these experiences that they can be an ‘expert' in their condition. The charity Mind (2023) hosts a ‘Blog for Mind’ site for those with mental health challenges where personal experiences can be shared. Also, the National Elf Service’s (2023) ‘Mental Elf’ has become one of the leading mental health research online blogs.
Empirical Eating Disorder Narratives
An online LE research by Kenny et al. (2020), looked at understanding ED recovery blogs. This internet analysis conducted qualitative and inductive Thematic Analysis (TA), and had a large sample-size (Mason, 2010), with over 150 blogs. However, the study revealed over-representation blogs of 95% of women; of which 36% reported Anorexia (as a diagnosis), and age was not disclosed. Although Kenny et al.’s (2020) analysis identified fewer shared ED bloggers’ personal experiences, this study discusses the benefits of understanding their EDs through blogs, however, there is no mention of ARFID so further research is needed.
Staite et al. (2018) conducted an online review of bloggers having Type 1 Diabetes and a self-identified ED also known as ‘Diabulimia’ (defined by planned insulin restriction for weight control). This is not yet a recognised mental illness nor listed as a diagnosis in DSM-5 (Yahya et al., 2023). This study sample used between 3 and 124 published blog entries of 11 bloggers. However, the age population was narrow ranging from 25 to 34. Bloggers came from the UK (n = four), USA (n = four), and Unspecified (n = three). There was an over-representation of females with a focus on feminine Disordered Eating (DE). The research methods were qualitative and thematic with three key themes and 18 subthemes with bloggers sharing their strategies for recovery to help others due to a lack of professional recognition. Whilst Diabulimia is not widely understood it is, however, still considered as a serious ED (Coleman et al., 2020). This is demonstrated by a blogger who reported that professionals referred to their condition as Severe and Enduring Eating Disorder (SEED).
Orthorexia Nervosa (ON), is a new ED, yet to be included in the DSM-5, referring to an obsession, fixation, or preoccupation with consuming only ‘healthy’ or ‘pure’ foods (Greville-Harris et al., 2020). This paper qualitatively and thematically studied a sample of fifteen female recruited bloggers self-identifying with ON, aged 19–32 and were made up of USA (n = 12), UK (n = one), Australia (n = one), and India (n = one). Most bloggers are again from Western countries except one from India. There is no mention in the study of cultural differences between the bloggers’ experiences. Similarly, Greville-Harris et al. (2020) assert that these blogs offer helpful qualitative inquiry since they represent openly accessible naturalistic data.
There was again feminine over-representation in this study with other gender voices being less captured. Also, this analysis had three key themes but there were no subsequent emerged subthemes which could be a drawback, as other studies had similar sample-sizes but more emerging themes for methodology. This analysis concluded female bloggers’ narrative indicating ON is a debilitating and legitimate illness, with recommended take-home points that this disorder is worthy of clinical and academic inquiry (Greville-Harris et al., 2020). It is worth reflecting on how these newly identified ED bloggers use online spaces to connect, and how more can be done, in the absence of recognised medical information.
Knedgen (2023) investigated ED online narratives of nine semi-structured, qualitative interviews of adults with a “Diagnosis of ARFID”. This phenomenological study explored in-depth perceptions of DE. This research transcripts qualitatively employed Interpretive Phenomenological Analysis (IPA) using three distinct categories of experimental topics alongside subsequent subthemes.
While this research investigated ARFID DSM-5 diagnosis (APA, 2013) it also provided insights into nine adults seeking treatment who met the full-threshold of the condition. The research participants were all USA women (n = nine), aged between 20 and 42, which is a limitation as it is not representative of other cultures and demographics. The recruitment was ‘purposive sampling’, with it being a small homogeneous of participants (ARFID adults found on SM), who were interested in participating in the study (Knedgen, 2023). This paper utilised the theoretical framework of IPA-experimental method, detailing the examination of a personal phenomenon. This is useful as Smith (2011) assert this IPA methodology approach centres on theoretical principles such as phenomenology, hermeneutics, and ideography. The findings highlighted adult females’ over-representation in improving the quality of treatment, retention, and involvement, whilst also developing future interventions for ARFID diagnosis (Knedgen, 2023).
Lived Experience
To describe a person’s LEs, this refers to an event or experience as ‘research phenomenology’. This emphasizes how only those who experience something convey this externally. Lived Experience (LE) is a shared knowledge and understanding of a person living with a condition or situation. Communicating one’s LE empowers and helps combat stigmas, allowing the LE to assist others in building communities by sharing individual experiences, which is invaluable to develop peer-based initiatives and support resources (St. Amant & Asper, 2021). Furthermore, sharing experiences with peers improves one's health, and helps promote inclusion and diversity. Receiving support from peers who also had mental-health struggles themselves could substantially decrease readmission to acute psychiatric hospital (St. Amant & Asper, 2021).
LE theory may be investigated through qualitative phenomenological methods, highlighting the importance of an individual's voice. A key philosopher Husserl (1999) pioneered the concept of phenomenology where he described a reflective inquiry of the fundamental principles of consciousness that is first-hand experience (Smith, 2013). However, Husserl's phenomenological model has been criticised as being overly intellectual, conceptual, and difficult to understand. Despite these criticisms, Husserl’s model remains important in the LE domain as the leading theoretical framework.
Research Rationale Only one newly published study specifically focused on ARFID and used interviews (Knedgen, 2023). Whilst the others discussed the use of blogs and sharing their LEs phenomena (Kenny et al., 2020; Staite et al., 2018; Greville-Harris et al., 2020). It is apparent these empirical studies predominantly were conducted on young English-speaking females living in Western countries. Still, many of these studies asserted benefits to individuals with health conditions to share their LEs in the form of blogging. Collins’s (1999) conducted the historical evolution of online support as a means of studying EDs alongside individual experiences and recommended subsequent studies should further investigate the feasibility of data-collection using online sources.
The increase in publications and clinical interest in ARFID is to be commended (Bryant-Waugh, 2019) but there is not enough knowledge of this disorder as there is still a lack of understanding of its epidemiology, aetiology, effective therapeutic methods, and service provision (Micali & Cooper-Vince, 2020). The impact of ARFID on children who perceived food as intimidating was examined in a recent study by Doleman (2023); however, the researcher found no qualitative studies describing ARFID in younger ages, indicating that these voices are missing from the research. Current publications also offer limited findings from adulthood perspectives (Norris et al., 2016). An earlier study on ARFID also discovered adult picky eaters often seek online support. Bradbury (2020) notes that there are limited studies so far about the LE of ARFID, suggesting there is a lack of expressing personal perspectives, including blogging as an avenue for adults to do so.
Subsequently, the objective of this study examines how those living with ARFID use SM (blogs) to share authentic experiences of their daily life. It is hoped each blogger gives their perspective in their own words to reveal nuances of these phenomena. This study refrains from making hypotheses to allow for the emergence of aspects deemed salient by LEs. This paper explores LEs of ARFID in qualitative analysis narratives utilising digital blogging platforms as a means of communication and aims to strengthen the voices of individuals’ journeys.