Exploring the Experiences of People who Engage with Pro-eating Disorder Online Media: A Qualitative Inquiry.

The harmful consequences of eating disorders can impact an individual's physical, emotional, and psychosocial wellness. However, these consequences may be exacerbated by the use of pro-eating disorder online media. In this study, we used a hermeneutic phenomenological qualitative inquiry to explore the experiences of an international sample of adults engaging with pro-eating disorder online media. Analysis revealed themes and subthemes and provided context for meaning(s) individuals experience when engaging in pro-eating disorder media. Implications for counsellors across the globe are discussed.

Historically, eating disorders were common diagnoses in Western society; however, with the increase of Westernization and access to social media, eating disorders have become more prevalent across the world (Kim et al., 2021). The global prevalence of eating disorder diagnoses continues to rise, and in 2019, as many as 13.6 million individuals were diagnosed with anorexia or bulimia nervosa worldwide (Santomauro et al., 2021). Further, Galmiche et al., (2019) discovered an overall global increase in prevalence of eating disorder diagnoses or disordered eating symptoms from 3.4 to 7.8% between 2000 and 2018. Disordered eating behaviors can lead to psychological and physical impairment, which can result in death if untreated (American Psychiatric Association [APA], 2013). Individuals with eating disorders often struggle with comorbid diagnoses, including anxiety, depressive disorders, substance use disorders, and obsessive-compulsive disorder (Schebendach, 2012). Further, individuals with disordered eating patterns more likely to participate in self-harming behaviors and suicide attempts due to emotion dysregulation (Arcelus et al., 2011). Researchers estimate around 4% of individuals with bulimia nervosa and between 4% and 8% of individuals with anorexia nervosa will die because of medical complications or completed suicide (APA, 2013; Arcelus et al., 2011; Schebendach, 2012).

Throughout the world, the number of individuals who engage with pro-eating disorder online media (online communities where users can access tips and tricks for behaviors related to eating disorders) continues to grow (Sowles et al., 2018; Borzekowski et al., 2010) found pro-eating disorder websites are easily located by completing an online search of everyday language and/or specific terminology, such as the coined term thinspiration (i.e., images of emaciated or thin bodies used for inspiration and motivation). After accessing this media, community members receive support and information to facilitate their ability to engage in harmful and disordered eating behaviors (e.g., binging on significant quantities of food and subsequently performing purging behaviors, such as vomiting or laxative misuse, to mitigate the over-consumption of food). As a result, the access and use of pro-eating disorder online media may have alarming consequences for adolescents and emerging adults (Jett et al., 2010; Williams & Reid, 2012). However, little is known about how and why individuals use this form of online community, and therefore the purpose of this study is to explore the lived experiences of individuals across the globe who engage with pro-eating disorder online media.

Pro-eating Disorder Online Media

Pro-eating disorder online media is defined as social media webpages that disperse content regarding symptoms and behaviors related to eating disorders (Borzekowski et al., 2010). Individuals on these webpages offer validation and support to those who utilize unhealthy eating patterns by sharing content, engaging in discussion forums, and providing examples of how to perform or conceal disordered eating behaviors (Branley et al., 2017; Williams & Reid 2012). Engaging in these communities can create or exacerbate an individual’s disordered eating by glorifying and idealizing their symptoms as desirable and evidence of strength and control (Branley et al., 2017). When an individual shares content normalizing disordered eating behaviors, eating disorders can be construed as a lifestyle choice instead of a serious mental health diagnosis (Branley et al., 2017; Jett et al., 2010).

Researchers have found that as little as 2.5 h of exposure to pro-eating disorder media drastically impacted the eating behaviors of a group of physically and mentally healthy women for at least three weeks (Jett et al., 2010). Further, if an individual has disordered eating patterns and is supported through these webpages, it may decrease their help seeking behaviors regarding treatment (Wooldridge et al., 2013). On the other hand, if users do not have disordered eating patterns and access pro-eating disorder media, they may learn how to engage in maladaptive eating behaviors, which could ultimately impact their psychological and physiological health (Schebendach, 2012).

Professional counsellors around the world have a unique opportunity to provide services (i.e., individual, family, and group counselling) to those who are impacted by current media trends and subsequent maladaptive behaviors that may occur. Although researchers have identified therapeutic modalities for treating individuals with eating disorders, there is a gap in the literature regarding the best approaches for clients who utilize pro-eating disorder media. Ma et al. (2021) found that individuals who live in countries with recent increases in the prevalence of eating disorders may feel misunderstood and have few options for treatment. This could lead to increased use of pro-eating disorder online media. Though research shows the harmful consequences of eating disorders (Schebendach, 2012) and pro-eating disorder online media (Branley et al., 2017), there is a lack of information regarding the lived experiences of those who actively seek out and engage in these communities. We conducted this study to explore the experiences of individuals who use this media to narrow this gap in current literature, and we addressed the following overarching research question: what are the experiences of individuals who engage in pro-eating disorder online media?

Method

The purpose of this study was to explore the experiences of people who engage with pro-eating disorder online media. We chose a hermeneutic phenomenological design as this allowed us to become fully immersed with our participants, their experiences, and the data collected. The process and approach of hermeneutic phenomenology are to inquire and interpret the experiences of individuals within a phenomenon as it was experienced. Hermeneutic phenomenology encourages researchers to explore the nuances within the phenomenon and to gain a firm understanding of the working pieces rather than the whole (Van Manen, 1990, 2014). As such, we interviewed participants who were actively engaging in pro-eating disorder online media, and we performed document analysis over six months of forum postings to examine the experiences of those who engage with this form of social media.

Researchers

During this study, we (one doctoral candidate in counsellor education and one counsellor educator) identified ourselves as observers of the phenomenon because of the nature in which we encountered the phenomenon and how we continuously observed the phenomenon through intrinsic exploration. As observers, we were able to provide a nonjudgmental atmosphere and immerse ourselves within the phenomenon so we could discover themes within the experiences as they were lived. Due to the nature of immersion, it was pertinent for us to express and acknowledge the biases, assumptions, and expectations we had throughout the research process so we could minimize our influence on the developed themes (Van Manen, 1990). As a research team, we had overarching assumptions of the themes we would discover. We believed we would find themes related to support, understanding, and acceptance because of the intrinsic exploration we had already experienced regarding the phenomenon. To succeed during this project, we aimed to limit instances of our own judgment through daily journaling and engaging in open communication with our peer reviewers (two doctoral candidates), and colleagues.

Data Collection

After obtaining institutional review board approval, the first author sought out a pro-eating disorder webpage to invite community members to participate in the study. The moderators of this webpage were open to allowing solicitations for research, thus this webpage was purposefully selected. Participants were then informed of the parameters of the study which included completing a demographics survey, completing three assessments (Eating Attitudes Test (EAT-26; Garner et al. 1982), the Body Appreciation Scale – 2 (BAS-2; Tylka & Wood-Barcalow, 2015), and the Body Dissatisfaction Scale (BDS; Mutale, Stiller, Dunn, & Larkin, 2016), participating in a phone interview (phone interviews were chosen to increase accessibility and privacy for participants), and providing profile information for the researchers to complete document analysis. Participants chose a pseudonym for researchers to use throughout the study. The participants were also provided incentives for participation where they received two $25 Amazon gift cards-one after completing the demographics survey, and another after data analysis was completed.

The first author conducted the individual phone interviews at the convenience of the participant, in a confidential environment. We created interview questions meant to elicit deep and meaningful data regarding the access and use of pro-eating disorder online media to ensure that we were able to collect meaningful data, we followed a semi structured interview process that allowed us to utilize follow-up questions as they were needed. These follow-up questions gave us the opportunity to address any specific situations or experiences and further inquire or receive clarification. Each question was asked to each participant consistently, and interview questions included: How did you learn about pro-eating disorder online media? What experience(s) led to the search of this form of media? Tell me about any ways you may have gained from visiting pro-eating disorder online media. What were you seeking from pro-eating disorder online media webpages? Tell me about the experience(s) of participating in these webpages. Tell me about your experience engaging with these communities. In what ways do you think these webpages have impacted you? The interviews were recorded with the participant’s permission and the transcriptions were provided through a phone application and then corrected as needed by the first author. We emailed the transcripts to the participants so they could review the interview and verify the accuracy. After the transcriptions were approved, we began data analysis.

Instruments

Three formalized assessments were utilized within this study to provide comprehensive information related to the characteristics of the participants. Much like demographic data, the data gleaned from these measures allowed for an in-depth exploration of the themes that were found and provided context for the responses given.

Eating Attitudes Test (EAT-26). The Eating Attitudes Test-40 (EAT-40; Garner & Garfinkel, 1979) was initially created to measure symptoms associated with anorexia nervosa and later revised to the EAT-26 (EAT-26; Garner et al., 1982) to provide individuals with a more concise self-report measure based on assessing eating attitudes. The items on the EAT-26 assess eating attitudes on a Likert-type scale with values ranging from 3 (always) to 1 (often) with higher scores suggesting concerning eating attitudes. The EAT-26 has been documented as a highly reliable (Cronbach’s alpha = 0.90), internally consistent in clinical and community populations (Cronbach’s alphas ranging from 0.78 to 0.91) and valid objective assessment for individuals with weight-related issues, body dissatisfaction, and psychological symptoms of anorexia nervosa (Garner et al., 1982; Lee et al., 2002).

Body Appreciation Scale – 2 (BAS-2). The Body Appreciation Scale (BAS; Avalos, Tylka, & Wood-Barcalow, 2005) was developed to measure features of positive body image (Tylka & Wood-Barcalow, 2015). The Body Appreciation Scale-2 (BAS-2;Tylka & Wood-Barcalow, 2015), the revised version of the BAS, is a highly reliable (Cronbach’s alphas of 0.96 and 0.97 for men and women respectively) brief self-report measure developed to assess individuals appreciation levels of their bodies, the level of respect they may have for their bodies, and to decrease limitations the BAS posed for internalizations of media ideals across genders (Tylka & Wood-Baracalow, 2015).

Body Dissatisfaction Scale (BDS). The Body Dissatisfaction Scale (BDS; Mutale et al., 2016) was initially developed to provide individuals computerized images of bodies to measure body dissatisfaction. The BDS includes nine male and nine female images that increase in body size from left to right where four thinner bodies than the average and four larger bodies than the average created a body image range of extremely thin (Body 1) to obese (Body 9) (Mutale et al., 2016). Participants are required to choose their ideal body type and then choose the body they most identify. The difference between the scores identifies each participant’s body dissatisfaction score with higher scores indicating a higher level of body dissatisfaction (Mutale et al., 2016). According to Mutale et al. (2016), the BDS has a significant construct validity based on a correlation between the BAS and the BDS (r=-.60, p < .001).

Participants

This study included eight female participants and two male participants between the ages of 18 and 31 (M = 23.7, SD = 4.7, median age = 24.5). Most of the participants identified as Caucasian (n = 6) and four participants were international (e.g., Australia, Canada, Germany, and Ireland). (See Table 1). As participants were from five different countries, some participants utilized British English during the interviews and throughout their original posts on the pro-eating disorder forum. We limited instances of changing the vernacular and culture-specific terminology utilized by each participant to maintain fidelity to the phenomenon from each participant’s perspective. The assessment data was not analyzed, though it provided participant characteristics. See Table 1 for responses on the Eating Attitudes Test (EAT-26; Garner, Olmsted, Bohr, & Garfinkel, 1982) and the Body Appreciation Scale – 2 (BAS-2; Tylka & Wood-Barcalow, 2015), and see Table 2 for responses on the Body Dissatisfaction Scale (BDS; Mutale, Stiller, Dunn, & Larkin, 2016). Overall, participants had higher scores on the EAT-26 in conjunction to higher BDS scores. Participants also had higher BAS-2 scores which equates to higher levels of body appreciation while high BDS scores indicates higher levels of body dissatisfaction, and high EAT-26 scores indicate harsher eating attitudes and eating behaviors.

Table 1

Scores of EAT – 26 and BAS-2

Pseudonym	BodyMass Index	EAT-26Score	BAS-2Score
Abby	20.2	42.0	11.0
Fluff	23.0	22.0	12.0
George	19.4	42.0	12.5
Isa	20.3	7.0	14.5
Jane	16.6	50.0	8.5
N	16.3	50.0	5.0
Nichelle	31.0	50.0	7.5
Skyler	20.5	38.0	9.5
Toby	20.6	46.0	8.0
Veggies	19.4	19.0	15.0

Table 2

Scores of BDS

Pseudonym	Ideal BodyType	Actual BodyType	BDSScore
Abby	1	5	4
Fluff	2	8	6
George	1	3	2
Isa	2	6	4
Jane	1	2	1
N	1	4	3
Nichelle	2	8	6
Skyler	2	4	2
Toby	2	4	2
Veggies	4	6	2

Note. Actual Body Type is Based on Participants Perception of Own Body

Data Analysis

We used two data sources: individual interview transcripts and document analysis. Additionally, that data we collected from the three assessments to provide context and trustworthiness to the qualitative data. We utilized Van Manen’s (1990) hermeneutic phenomenological approach to uncover themes and meanings from the interviews and documents we procured. During data analysis, the first author read the transcripts from each interview and document analysis and performed the initial theming from all data. After the identifying the initial themes, two peer reviewers examined the initial findings and provide any feedback regarding their thematic observations (Van Manen, 1990). Once the peer reviewers were satisfied with the themes, the first author allowed each participant to review the themes associated with their transcripts and document analysis so they could make alteration or changes. After approval from each participant, the second author reviewed the themes as an additional reviewer and the final themes were solidified (Van Manen, 1990).

We were charged with achieving a deep understanding of the phenomenon as it was lived through illustrative data. We were able to accomplish this step by creating meaningful interview questions about the phenomenon. After a thorough review of literature, we developed questions that focused on participants’ experiences. Previous studies reported findings related to validation and support, (Branley et al. 2017; Williams & Reid 2012), however, instead of inquiring about the type of support(s) participants received from pro-eating disorder media use, we asked participants what their experiences within these webpages had been like, and how they engaged with the webpages These questions were also reviewed by an external auditor to increase trustworthiness. Additionally, to better understand the phenomenon, we performed document analysis on individual community forums that were authored and published by users of pro-eating disorder online media. Finally, we utilized participant feedback on the interviews, document analysis, and initial findings so they could adjust any content if needed. This allowed for participants to reflect on the data and themes, while allowing them to be involved in an impactful and meaningful manner.

Trustworthiness

Van Manen’s (1990) hermeneutic phenomenology charges researchers to pursue several processes to establish trustworthiness. We ensured trustworthiness and rigor by performing Van Manen’s (1990, 2014) approach to trustworthiness: responding to the appropriately developed research questions, utilizing scholarly resources, using reflection as a critical aspect throughout the research process, using rich data, remaining grounded within the phenomenon being explored, and utilizing participants within the research process. Van Manen’s (1990, 2014) approach to hermeneutic phenomenology obligates researchers to create overarching research question that identifies a single phenomenon, inquire how the world is experienced, and to investigate the phenomenon as lived. Our research question was developed over time to solidify the direction of the investigation. After the phenomenon of pro-eating disorder media use was identified, the question was cultivated to investigate the world of the participants and their experiences as they were lived. We then immersed ourselves with scholarly works related to phenomenological research and the phenomenon of utilizing pro-eating disorder online media Hermeneutic phenomenology also requires that the researchers must be grounded within their research questions throughout the research process. This allows the researchers to develop and maintain a strong relationship with the experience under investigation. By remaining grounded, the researchers can maintain or develop a deeper sense of curiosity, openness, and wonder regarding the phenomenon. To consistently maintain this close relationship with the research, the first author reflected several times a week using a journal and regular meetings with the second author and peer reviewers. To gather rich data, we designed interview questions to gain detailed and rich descriptions of the experiences as they were lived by the participants. We also performed document analysis to provide further support to the themes and meanings analyzed from the interviews. Finally, we engaged with participants to receive their feedback on the discovered themes from the interviews and document analysis (Van Manen, 1990).

Results

The themes and subthemes that emerged from our analysis included curiosity, spiraling down, increased knowledge, unfulfilled needs (subthemes – (a) acceptance, (b) control, and (c) understanding), support, safety and harm reduction, community (subthemes – (a) genuine relationships, and (b) loneliness), duality, lack of understanding from professionals, harmful aspects (subthemes – (a) risk of predators, and (b) triggering content), motivation for eating disorders (subthemes – (a) competitive aspects, (b) never sick enough, and (c) intentional harmful behavior, recovery (subthemes – (a) hope related to recovery, and (b) struggles with recovery).

These themes follow a cyclical pattern encapsulated by a rectangle (see Fig. 1). The rectangle depicts the physical and social environment of each individual and the interior depicts the experience of accessing and using pro-eating disorder online media. Lack of understanding from professionals is indicative of the external viewpoint many participants encountered. Curiosity is the driving force and acts as the catalyst that initially engaged each participant with pro-eating disorder media. Similarly, spiraling down is a continuous experience participants have once initial exposure to these webpages has been made as they become deeply immersed into pro-eating disorder media. The findings suggest a central force that rotates all the internal themes in a repetitive circular motion once curiosity has been established. This force is the experience of externalizing eating behaviors and thus identified as duality within this study. Unfulfilled needs, support, increased body of knowledge, safety, and community are encompassed on the left side of the circle’s interior. Motivation for eating disorders and harmful aspects include experiences that occur due to participating in pro-eating disorder media. Due to the central force, participants still receive benefits from use, so they willingly choose to participate in these communities regardless of the consequences. Recovery is a reactive agent externally located from the circle. This theme addresses the experience of clients pursuing recovery and how they may be drawn back into the central force because of consistent communication between members. The following sections provide further detail on each theme and subtheme.

Fig. 1

Visual representation of themes and subthemes. Note: Themes are depicted within a black rectangular figure while subthemes extend away from the themes or show movement.

Curiosity

Curiosity embodies each participants’ intrigue with pro-eating disorder media once they discovered it through self-exploration or media coverage. Several community members discussed their limited awareness regarding the existence of these communities prior to exposure from the news, media, documentaries, or Internet searches. For example, Fluff mentioned “there was a documentary on BBC or Channel 4 about [pro-eating disorder online media] which sort of caught my eye.” She further explained, saying “. . it was probably not designed to encourage people to use or find those sites out, but it did.“ Isa reported after having had an eating disorder for 16 years, she had the desire to investigate things via the Internet. She stated she searched for:

.. . Anything related to [eating disorders]. So when I heard the term ‘pro-ana,’ I was always curious what that is, so I looked into [pro-ana media]. .. because the [news media] said “it is so evil,” so I wanted to know what it [was].

This theme seems to be the catalyst most of the participants encountered prior to becoming immersed into the experience of spiraling down.

Spiraling Down

Spiraling down describes the experience of becoming deeply immersed into pro-eating disorder webpages and how it can exacerbate an individual’s eating behaviors. This theme appears to be a universal experience for those who actively pursue this form of media, partly because it is a continuous cycle while access occurs. Jane’s experiences personified this theme:

I think I sort of vaguely remember seeing pro-eating disorder stuff. .. I very much realized that the behaviors I was doing were eating disorder behaviors. And I realized I was very much falling down a rabbit hole. . .

Ultimately, some participants found their eating behaviors changed and/or they participated more frequently within these communities – thus they spiraled further into disordered eating patterns.

Increased Knowledge

Participants communicated an increased level of awareness related to their bodies or eating behaviors because of participating in these communities. Participants also discussed providing information to other community members. Jane’s experiences epitomized this theme:

I have gained. .. a much greater understanding of how I developed this eating disorder and why I developed it. And what it’s doing to my body. .. I think I have learned more about anorexia and eating disorders through pro-eating disorder sites than through. .. recovery organizations, or therapy. . .

Jane’s statement reflected an experience of gaining greater insight into eating disorders as well as insight into how these webpages have affected her body.

Unfulfilled Needs

Participants in this study reported experiencing various unfulfilled needs. These experiences are described in subthemes: (a) acceptance, (b) control, and (c) understanding. In a general sense, participants had unmet needs in their personal lives that were either fulfilled by the relationships established within pro-eating disorder webpages or via the alteration of eating behaviors. For example, George stated, “. . I didn’t have anyone to talk to. . It was really just looking for someone to talk to.”

Acceptance. Because they did not feel accepted outside of online communities, participants met this need by engaging with pro-eating disorder communities. For example, Fluff wanted someone to listen to what she was going through and accept her thoughts instead of judging her behaviors. She noted:

I relapsed and I was really attracted to losing weight. .. I started looking for the Pro-Ana side of things because I wanted someone who was in the same boat that I could talk to. So if I said, you know, “I’m feeling proud of myself because I haven’t eaten,” I wanted someone who wasn’t going to go, “oh well that is terrible,” because to me that wasn’t.

Control. Participants wanted to experience control over their bodies, thoughts, and feelings. When speaking of the communities and her relationships with the members, Veggies emphasized the control she has over her choices when engaging with community members because control in her personal life was something she lacked. When telling a story of her experiences with her diagnoses, she noted:

I had just gotten my PTSD diagnosis and my bipolar diagnosis. .. And it was honestly all a little too much. .. I didn’t see at the beginning how much of a problem it was and. .. if I had an eating disorder before I went into treatment. .. I don’t think I would have gone. .. It is a coping mechanism and it is a “good one”.. . it provides me control over my own body which is something I have been denied.

Understanding. Participants found understanding within the pro-eating disorder online media communities. For example, George shared:

.. . I didn’t have anybody to talk to, so what I received was. .. open ears. Just so you could have people to talk to. .. because these people experienced the exact same thing, they would understand like what’s going on and stuff like that. . .

Additionally, some participants recognized they have discovered an understanding of who they are, of other people and personal dilemmas they may be experiencing, why they perform behaviors they do, and what disordered eating does to their physical bodies.

Support. Support, in the context of this study, is how each member feels and shares with other community members; and how participants received and provided support to their fellow community members. For example, Toby’s experiences within the communities were nourished primarily by instances he received or observed support within the members. He stated:

.. . The way that the whole community tends to be set up. .. It’s the same way that you will see harm reduction on drug forums. It is all support without judgement. It is, “whatever the [expletive] you are trying to do, we support it.”

Safety and Harm Reduction

Participants reported not only feeling safe when participating in these online communities, but also voiced a need for safety and harm reduction. For instance, Jane described how pro-eating disorder communities offer safety in similar ways as pill testing centers (i.e., specified areas where individuals who are using illicit substances may have their pills tested, without penalty, to ensure safety when introducing the substance to their bodies). She mentioned:

“You’re finding a sort of safe way to do something that would usually be considered dangerous. . And that is kind of what it’s like.” Beyond experiencing safety within these communities, participants also had experiences with providing safety to those who were exposed to unsafe stimuli. Harm reduction occurs when members provide alternative options for performing disordered eating behaviors in hopes of reducing the physical consequences. Fluff experienced harm reduction in different ways within the communities. In one instance, Fluff wrote to another member who had injured herself purging:

You really shouldn’t be purging using cutlery. It’s much easier to hurt yourself with tools than it is with your hands/handsfree. Cold drinks might help it, or sucking on ice cubes. The only thing that will definitely help is not purging for a few days if you can.

Fluff experiences were further emphasized during her phone interview:

.. . the tips and tricks and things like that, they are generally harm reduction that people would share. .. Things like, after purging not brushing your teeth because you would brush the stomach acid around your mouth and you’d rot your teeth faster. Things like that have been really helpful and probably why I still have all of my teeth.

Community

Each participant experienced being part of a community at a different level. This theme overlaps with unfulfilled needs because a sense of community was a commonly unmet need within the participants. This theme includes subthemes of genuine relationships and loneliness.

Genuine Relationships. The participants in this study believed they have developed genuine friendships in the online forums. For example, Skyler stated, “. . I’ve gained. . not only factual knowledge about. . calorie deficits and stuff like that but I have also gained a friendship out of it as well.” For Skyler, developing friendship was just as meaningful as learning about disordered eating patterns. Isa mentioned, “. . yeah it is a sense of community. I have met several people that I would consider online friends. . It makes me feel less isolated. . I’m appreciated and valued.” Others emphasized having something in common with other members as the precipice for gaining community and connection.

Loneliness. This subtheme addressed participants’ experience of becoming lonely because of participating in disordered eating related behaviors. In an original post, Abby shared with her community members, she wrote:

.. . Emotionally, I am such[emphasis added] a wreck. I’m so tired of being tired. .. so tired of crying and sleeping. .. I feel totally and utterly alone. .. Like, when I was exercising 2 + hours per day and restricting food, I was too busy with all of that to recognize that I was lonely. Now that I’m trying to recover, I realize that I have no connections with people. . .

In her post, she wrote about how alone and lonely she feels as a result of “spending a decade alone with [her] ED.”

Duality

Participants discussed the experiences of externalizing eating disorders, disordered eating patterns, and eating behaviors as independent parts of their personality, beyond who the individual participant is. For example, Abby responded to a community member when she provided Abby encouragement related to recovery in the forum:

You could certainly be right that it’s the ED telling me to screw them. .. because you are 100% correct that the ED wants any reason at all for me to run back to it. You are also right about “ED tinted glasses.” It changes our perception of everything. . .

Abby’s experience with duality was related to how she has externalized her eating disorder and how she has almost given her eating disorder a voice as well as an identity.

Lack of Understanding from Professionals

Participants did not feel heard or understood by professionals. Some participants reported they were categorized by professionals as “not sick enough” due to their weights regardless of their eating behaviors and eating history. For example, Abby created an original post that personified the lack of understanding from professionals. She wrote:

I’m so tired of everyone’s thoughts of a person with an ED -- EVEN TREATMENT PROFESSIONALS - being based around weight. No one takes me [expletive] seriously because I’m at a healthy weight. I’m sorry, were the 5 past years underweight not enough for you? Would you like me to lose a [expletive] of weight and come back?

To many participants, the lack of understanding she has perceived from healthcare and mental healthcare professionals has been detrimental to their ability to recover.

Harmful Aspects

Community members acknowledged parts of these webpages that are not helpful and that they can present or cause harm. This theme includes the following subthemes: (a) triggering content, and (b) risk of predators. For example, Jane mentioned:

.. . Looking back at my own personal experiences, as much as pro-ED sites have helped me, they have also made me sicker. .. They taught me lots more ways to hide my eating disorder and they gave me lots more ways to lose weight quickly. .. And you know I’m not sure, even now I am not sure what kind of damage I have done to my body because of that. .. I can definitely say, they have made me feel more in control of my eating disorder. But they have also made me sicker.

Toby also described this process when he said, “. . I think the sites are doing a lot more good than they are doing harm, but they are still doing harm.” Similarly, Veggies shared, “It is a little ironic, but at the same time, there are potential dangers all of the time of course. But I think that the positives, not that they outweigh. . but they are still positive.”

Triggering Content. Triggering content describes the collection of material (e.g., original posts, pictures, responses, and forums) that community members perceive as a ‘trigger’ to engage in disordered eating behaviors. Jane spoke of how impactful some of this content is:

I guess the websites are still very much triggering, as much as I hate that term, in a sense that there are still going to be lots of posts on there about people posting body checks, people posting. .. emaciated bodies. .. People talking about how many calories they eat or you know, or what’s the best way to exercise. . .

Risk of Predators. Many participants discussed encountering or observing individuals who may have malicious intent for younger participants within pro-eating disorder webpages. They referred to these individuals as Ana Coaches, as described by community members, are individuals who are typically middle-aged men who solicit young (sometimes underage) community members to “coach” them to continue engaging in disordered eating behaviors. Fluff has been a moderator, someone who helps run and maintain webpages, for pro-eating disorder webpages for several years. As a moderator, she has tried to limit the presence of Ana Coaches within the sites, though there have times when she (and other moderators) has not been successful. She stated:

We were banning members for [Ana Coaching] and something was going wrong with the database and they were able to talk to people again. .. So a lot of [Ana Coaches] were just able to come in and post things like that and we weren’t able to do anything about it.

Each of the participants who addressed this theme had a different perspective on the severity and risks involved. For example, Veggies stated: “Now on that [pro-eating disorder webpage], it is very obvious that there are predators on that site. It is just obvious that there are just sexual predators looking for people. . .” Toby also had experiences similar to Veggies’. He described:

.. . there is a problem with older men using it to troll for pictures of younger girls. .. If you go to the. .. body check areas there are a lot of people claiming to be Ana coaches who are really just looking for younger girls who. .. will do what they tell them.

Motivation for Eating Disorders

Individuals reported receiving motivation and encouragement while participating in the communities. This theme has three subthemes including (a) competitive aspects, (b) never sick enough, and (c) intentional harmful behavior.

Competitive aspects. Participants reported competition with those around them (either in their social life or through pro-eating disorder media) regarding eating behaviors, weight loss, or body appearance. For example, in response to thread posts about behaviors and thoughts that contribute to their eating patterns, Jane wrote:

I always try and convince my friends to get unhealthy food. They’re my friends and I love them, but it feels so good to be both in control of what I eat AND what others eat. I’m half-thinking:. .. “I’ll seem even thinner in comparison to them when they gain weight.”

While Jane’s words do not specifically mention that she is in competition with her friends, the underlying meaning resonates with the idea that she believes she is in an internal competition to be “better” at having an eating disorder.

Never sick enough. Participants in this study had the perception they will never be sick enough to need or deserve treatment for their disordered eating. These beliefs were sometimes a result of advice from healthcare professionals. For example, Jane wrote in an original post:

.. . Even though I’m diagnosed with Anorexia Nervosa somedays I just feel like I’m not even close to being a proper anorexic - I get all the shitty symptoms like low heart rate, dizziness, blue nails, black spots. .. But my period is still here. .. and when I plateau or gain weight from a binge or even just water weight, I feel like the most disgusting person ever. Like I’ll never reach my goal weight cause I’m not a real anorexic. . .

Jane’s experiences are similar to the Fluff’s. In a thread where a community member was discussing the idea of not being sick enough, Fluff wrote:

Feeling like you’re not really sick is part of the illness, and you absolutely deserve help if you want it. Whether it’s disordered eating or an eating disorder doesn’t matter, if it’s impacting your life you can work to change it.

Intentional harmful behaviors. Participants discussed engaging in behaviors to punish themselves. For example, Veggies created a thread where she asked community members about any instances of self-punishment, they may participate in. She wrote, “anyone else make exercise rules/punishments? For example: I always take the stairs, two at a time. If I’m going to the grocery store than I have to take a long route. . .” On one occasion, Jane wrote, “I wanna exercise until I pass out when I eat something outside my meal plan,” in response to a community member who discussed her disordered eating thoughts and behaviors. Furthermore, she wrote: “Just the feeling of starving makes me feel so in control. I can’t wait to be underweight, it’s my biggest dream. I love punishing myself so much because it makes me feel.”

Recovery

This theme is about the ongoing experience of recovery and the related emotions, thoughts, and behaviors. Participants discussed recovery as a continuous cycle that included relapses of binging, purging, and restrictive behaviors. This theme has two subthemes including (a) hope related to recovery, and (b) struggles with recovery. For example, Fluff acknowledged the impact pro-eating disorder webpages have had on her level of recovery. During her interview, she mentioned, “since I’ve been more involved with the site. . my behaviors have got a lot better. I will still purge occasionally, but I haven’t actually gone out and binged and purged in a couple of years.”

Hope related to recovery. Many participants expressed feelings of hope related to their recovery. Specifically, participants experienced positive change and felt hope for the future and a life without an eating disorder. For example, Abby created a thread in which she wrote, “It’s been a positive day! A really nice one, honestly. Today’s a day that I feel like: YES, LET’S GO RECOVER!!!!! LIFE IS WAITING!”

Struggles with recovery. Finally, participants discussed struggles related to seeking recovery. The participants discussed these struggles including internal and external adversity, guilt, disappointment, confusion, and distress. Abby chronicled her experiences with recovery in an original thread. She wrote:

There are days I want to run back to my ED and get back to my [lowest weight] and I wish I weren’t trying to recover at all. There are other days -- like today -- that I am SO [expletive] SICK OF HAVING AN ED!!!!. .. I spent the morning and lunch restricting, eating as little as I could get by with, and I went on a 6 mile run. . .

Abby’s experience of entering recovery was rewarding as much as it was exhausting. As a result, she used her social community to discuss the current stage of frustration she was experiencing.

Discussion

The results of this study revealed several findings that are relevant to international counselling practice. For example, participants reported gaining a sense of community after engaging in these webpages. Similarly, Wooldridge and colleagues (2013) found community appreciation and a search for “like-minded” people as a common theme among individuals who use pro-eating disorder media. Participants may seek out people who share similar experiences and thought processes, and once they find these individuals, they believe they can express themselves without fear of receiving judgment.

Overall, participants in this study endorsed higher levels of disordered eating, and over half of the participants half of the participants scored twice as high as the threshold for concern regarding disordered eating on the EAT-26. They also reported high levels of body dissatisfaction on the BDS and low levels of body appreciation on the BAS-2, and these findings were consistent across participants, regardless of their country of origin. This descriptive information aligns with and supports the themes in this study, as well as with previous research that found a correlation between use of pro-eating disorder media and disordered thoughts and behaviors around eating (Mincey & Hunnicutt Hollenbaugh, 2018). Subjects in this study also used pro-eating disorder media to gain helpful (and less harmful) tips and tricks to lose weight, and these findings are corroborated by previous studies as well (Branley et al., 2017; Williams & Reid 2012). Further, previous researchers have found that individuals who use this form of social media glorify disordered eating, and these behaviors are shared and discussed as evidence of strength and control (Arcelus et al., 2011; Branley et al., 2017). This finding was corroborated throughout this study with participants highlighting how empowered they felt when they engaged in disordered eating behaviors.

Findings from this study suggest some participants around the world experienced more recovery support from pro-eating disorder media than from mental health professionals, healthcare organizations, and other professional resources. In other words, the lack of understanding from mental healthcare professionals may increase the likelihood of individuals seeking support from pro-eating disorder communities as opposed to professional counsellors and physicians. This may be especially true in countries that do not have many options for eating disorder treatment (Ma et al., 2021). As a result, individuals may experience chronic eating disturbances which may lead to deleterious physical and mental health consequences and decrease help seeking behaviors. The themes of feeling misunderstood and having poor treatment experiences are consistent with other studies of international populations (Ma et al., 2021). These findings suggest that the consistency of these problems may need to be mitigated on a global level among intentional targeting through international associations (Nechita et al., 2021).

Implications for Counsellors

The results of this study support the need for a more novel and intentional approach to treating for eating disorders. Our findings contradicted traditional approaches to eating disorder treatment, as participants frequently discussed the unfavorable circumstances of rehabilitative care, including a strict behavioral approach, and forced shared mealtimes during inpatient stays. Researchers have found Dialectical Behavioral Therapy (DBT) is an alternative to traditional rehabilitative treatment, and research shows it is helpful for reducing symptom severity for those with eating disorders (Linehan, 2015). DBT directly targets symptoms of emotion dysregulation, reducing life threatening behaviors, and replacing quality of life interfering behaviors which more productive coping skills. (Linehan, 2015). There is also an extensive amount of research on DBT with participants from a variety of cultures, and it has been adapted into several different languages (Linehan, 2015).

Integrative care is also paramount, and an ideal treatment could incorporate treatment and psychoeducation regarding societal messages with medical and physiological care. (Baker-Ericzen et al., 2012). In addition, systemic approaches (e.g., family reunification groups to unify connection, acceptance, support, and understanding) and the process of meeting contextual needs of everyone (e.g., comorbid diagnoses, trauma, poor social relationships) can be incorporated into an integrative approach to provide a comprehensive level of care. This integrative approach can increase the likelihood of recovery in comparison to a solely behavioral approach.

Counsellors should address the use of pro-eating disorder media in treatment. For example, we found that individuals use pro-eating disorder media as an opportunity to experience safety and support. As result, it is pertinent to help clients establish connection and community outside of pro-eating disorder media webpages. Professional counsellors should evaluate clients’ current level of social support and provide opportunities and resources for clients to receive support services, for example, family reunification groups and recovery support groups (Phillips, 2013). Along with virtual approaches, the implementation of web apps and engagement in healthy social media outlets and pages may fulfill the clients’ needs for support while also directing them to healthier venues.

Finally, the global COVID-19 pandemic greatly increased and facilitated the access individuals have to virtual care. Implementing an evidence-based approach in an online setting has been found to be a practical replacement for face-to-face approaches (Munsch et al., 2019; Steiger et al., 2022). Further implementation of online counseling may help individuals who otherwise did not have access to care across the globe.

Limitations and Recommendations for Future Research

While our study provided a detailed exploration of participants’ access and use of pro-eating disorder online media, there were a few notable limitations. First, the participants of this study were solely solicited from one pro-eating disorder webpage, and this may have limited our findings because we were unable to gain additional perspectives of individuals who may have accessed other webpages and applications. Future studies could include perspectives of individuals from other webpages and forms of pro-eating disorder social media. Finally, we are obligated to assume all participant responses were truthful and not a result of social desirability bias regarding interviews and responses on the assessments provided. Future studies could analyze data gained from the assessments utilized in this study, and/or additional assessments, to validate interview responses. Finally, researchers should lessen the research gap related to eating disorders across genders and ethnicities, as the findings of this study suggest there is a cross-cultural impact pro-eating disorder media has on all populations. The results of these proposed studies could inform clinical practice of clinicians, supervisors, and supervisees when treating vulnerable populations. However, the countries represented in this study only represented North America, Europe, and Australia, and therefore the experiences of individuals in South American and Asia may be different. For example, until recently the prevalence of eating disorder diagnoses in Asia were relatively small and many were likely going undiagnosed (Kim et al., 2021).

Conclusions

While previous research on pro-eating disorder media has highlighted the significant impact this form of social media can have on individuals, the voices, and perceptions of those who engage in pro-eating disorder online media had not been previously explored. Engaging with pro-eating disorder online media offers comfort, encouragement, harm reduction, and support to participants. Participants also discussed the use of pro-eating disorder media and the impact of safety these communities provide, how unfulfilled needs are met, knowledge is gained, and community is built. Future research should replicate and expand on these findings in international settings, so professional counsellors can provide care and rehabilitation to those who need it most, in all parts of the world.