The experience of treatment for eating disorders as told by content creators on TikTok

Abstract

TikTok, a social media platform with substantial youth engagement, has been used to examine eating disorder (ED) recovery; however, no studies have described the experience of ED treatment as told on TikTok. The purpose of this study was to describe content related to ED treatment using the hashtag #EDtreatment. The 100 most-viewed videos using #EDtreatment were downloaded, transcribed verbatim, and coded. Using qualitative thematic analysis, a coding framework was created; themes were generated and reviewed by coauthors until consensus was reached. Ultimately, 55 videos were included in the analysis. The videos included in analysis had, in total, 15.6 million views, 3 million “likes”, 36,647 comments, and were shared by users 26,673 times. Themes generated included Aspects of Treatment, Interpersonal Relationships, Emotions and Psychiatric Comorbidities, and ED Experiences. Content ranged from uplifting and encouraging to negative and serious. Videos used dramatic reenactments, music, humor, and other entertainment methods, suggesting that creators attempted to generate high volume viewer consumption. When combined with TikTok’s brief video format, users may consume large amounts of content rapidly. Individuals considering treatment may be influenced by viewing TikTok content. When clinically engaging individuals with EDs, the perceived significance of this content is a topic of consideration.

Social networking sites (SNS) have integrated rapidly into the fabric of daily life for Americans, rising from just 5% of individuals connecting via SNS in 2005 to almost 75% in 2021 (Pew Research, 2023). Previous research suggests that individuals experiencing chronic illness often seek support from peers using SNS platforms (Kingod et al., 2017; Rueger et al., 2021). However, the literature is inconsistent about whether these online communities are positive or negative for users of the platform. Some findings indicate that online communities facilitate illness-related self-care, allow for the exchange of knowledge, reduce loneliness, foment peer support, and improve provider-patient relationships (Benetoli et al., 2018; Colineau & Paris, 2010; Kingod et al., 2017; Rueger et al., 2021). Yet other research reveals social media’s potential for yielding incorrect self-diagnoses, spreading misinformation, decreasing optimism, and eliciting distress (Basterfield et al., 2018; Rueger et al., 2021). In some studies, users themselves report experiencing both positive and negative effects from such online communities (Basterfield et al., 2018). Indeed, the field of eating disorders (EDs) has a worrisome history of “pro-ANA” internet content, or content which promotes disordered thoughts and actions such as idealized thin body types and weight control behaviors, that spans across social media and internet platforms (Branley & Covey, 2017; Custers, 2015; Mento et al., 2021). TikTok is a relatively new and popular platform in which individuals share content related to EDs. In recent years, research has begun to describe TikTok content to better understand its use among individuals in this community, finding a mix of both pro-ED and pro-recovery content (Lookingbill et al., 2023).TikTok has become the dominant platform in the SNS landscape with a reported over 1 billion monthly users spending 10 hours or more per week on the site (Doyle, 2024). TikTok utilizes fast-paced videos ranging from entertainment (e.g., dancing) to direct-to-consumer advertising. Using music, captions, special effects, and filters, TikTok facilitates the consumption of an extensive volume of content in a relatively short period of time (Montag et al., 2021). The largest demographic of TikTok users are adolescents ages 10–19 (32.5% of users), and emerging adults ages 20–29 (29.5% of users), two developmental periods that are high risk for EDs (Smink et al., 2012).

In addition to being used for social connection and entertainment, TikTok recently has become a frequently used search engine for individuals seeking information (Tome & Cardita, 2021). Utilizing SNS for information sharing is of concern for individuals with or at risk for EDs, as those who seek information via unsupervised SNS platforms may encounter health-related misinformation that could impact health or treatment seeking behaviors (Kong et al., 2021; Song et al., 2021; Suarez-Lledo & Alvarez-Galvez, 2021). For example, those seeking help with recovery from binge-eating disorder (BED) may encounter content that is embedded in diet culture and therefore unhelpful for those truly aiming for recovery (Greene & Norling, 2023). Another analysis of TikTok use found that adolescents frequently searched for videos promoting dieting and disordered eating across ED diagnostic categories (e.g., #pro-ANA, #bulimia, #bingeeating). Viewing such content was associated with experiencing poor self-esteem and body shaming (Pruccoli et al., 2022). Additionally, it has been purported that using TikTok for #BodyNeutrality or #Body Positivity may actually yield content that promotes disordered eating behaviors by idealizing thin, White bodies (Hallward et al., 2023).

A recent qualitative study sought to uncover TikTok content that utilized the hashtag #EDrecovery, and found awareness, storytelling, daily eating, transformation, and “trendy gallows humor” (describing one’s experience in an ironic, morose, or self-deprecating way) were the main content themes (Herrick et al., 2021). Through this exploration, the authors note the complexity of discussing a serious illness while using humor and sharing lived experiences and highlight the challenges of displaying ED recovery-related content on social media. Other researchers have suggested that ED recovery-related communities on TikTok tend to differ regarding the role of treatment in recovery and illness severity depending on the diagnosis of the creator. Specifically, individuals who post about recovery are more likely to self-disclose AN, and those with BED perceived themselves as less sick and less in need of treatment (Greene et al., 2023).

One important facet of recovery is one’s lived experience of ED treatment. However, to our knowledge, no studies have specifically described the experience of ED treatment itself as told by TikTok content creators. It remains unclear if content describing ED treatment reflects a supportive online peer community as observed with other mental health topics (Colineau & Paris, 2010; Kingod et al., 2017), or if these posts have potential to incite fear or distrust (Basterfield et al., 2018; Rueger et al., 2021). Furthermore, categorizing and describing content related to ED treatment found on TikTok as told by the creators themselves provides the unique insight of those with lived experience which can be critical to enhancing research and clinical intervention designs to be more informative and beneficial (Vázquez et al., 2023). . The purpose of this study was to describe ED treatment content on Tik Tok, as reported by Tik Tok creators using the hashtag #EDtreatment.

Methods

This work was approved by the Institutional Review Board. To avoid social media algorithms that tailor content to a user’s previous activity, a new TikTok account was created with no associated likes, saves, or video views. On June 18, 2021, a search for #EDtreatment was performed. At the time, videos tagged #EDtreatment had 47.1 million views. The 107 videos using #EDtreatment with the most views were downloaded and saved to a password-protected, encrypted server. Only publicly available content was downloaded. On initial review, videos were excluded if the audio (spoken word) or captioning features (written word) were in any language other than English (n=2) or the creator self-identified as a treatment provider of any kind (e.g., physician, nurse, therapist, dietitian; n=5). Next, the remaining 100 videos were transcribed verbatim by three of the coauthors and observations of the video content were recorded. The following characteristics of each video were entered into a database: 1) video statistics: date of the video; hashtags; number of views, likes, comments, and shares; 2) visual cues: written words, emojis, captions features used (e.g., filters), description of video visuals (e.g., content creator was seated in a bedroom speaking directly to the camera, creator was laughing or visibly upset) and 3) auditory cues: music or sound effects, if used. Additionally, we noted the type of ED identified if disclosed anywhere (e.g., in caption, said by creator). After in-depth review, a total of 45 videos were ultimately excluded after it was determined they were not related to the experience of treatment (Figure 1). Specifically, videos were excluded if creators did not explicitly state they were in treatment (in spoken word, written captions, hashtags) or show this implicitly (e.g., the creator references the nurse caring for them in the story).

Figure 1.

Flow diagram representing decision points for inclusion/exclusion of videos.

Data Analysis

Data were coded following the thematic analysis process described by Nowell et al. (2017). This process has been used in other work describing TikTok content (Minadeo & Pope, 2022; Unni & Weinstein, 2021) and has been developed to establish trustworthiness during each phase of the qualitative analysis (Nowell et al., 2017). The analysis includes six phases from familiarizing oneself with the data to generating the report; specific steps for each phase are displayed in Table 1. Transcribing videos allowed for prolonged engagement with the data. The research team documented reflective thoughts and observations about the videos in the database (also known as member checking), which were used as discussion points during regular team meetings. Member checking contributed to researcher triangulation, a method to address credibility in which data derived from one member of the team is checked against other members of the team, and to resolve discrepancies in coding between researchers (Lincoln & Guba, 1985). Utilizing both visual and auditory cues, each co-author independently generated an initial round of codes. This was followed by peer debriefing and researcher triangulation in weekly or biweekly team meetings.

Table 1.

Thematic analysis process

Phase of Thematic Analysis	Actions	Authors
Phase I: Familiarizing with the data	Authors transcribed 100 videos, which provided prolonged engagement with the data. Reflective thoughts and observations were written and shared during team meetings and kept in meeting minutes.	MK, CR, SH
Phase II: Generating initial codes	Initial codes were generated independently by three authors, who first coded 10 videos and then met for peer debriefing, including review of reflexive notes and researcher triangulation. Codebook was generated with audit trail and examples of codes as they were generated and shared among team members. This process was repeated and codebook revised with each iteration until no additional codes were generated. Team meetings were documented via meeting minutes. Second cylce coding followed the process above with codebook refinement.	MK, CR, SH
Phase III: Searching for themes	Team met for researcher triangulation, including theme refinement and consultation by fourth author.	MK, CR, SH, HD
Phase IV: Reviewing themes	Themes were reviewed and refined using notes and codebook. Return to raw data was used to confirm adequacy. Themes were vetted by team.	MK, CR, SH, HD, JW
Phase V: Defining and naming themes	Team consensus was reached on theme names including researcher triangulation and debriefing.	MK, CR, SH, HD
Phase VI: Producing the report	Report was generated using process detailed above, descriptions of codes and themes using raw data, and member checking.	MK, HD, CR, SH, JW

A coding framework was created including code name, description, and example of codes. Following initial code generation, second cycle coding was conducted by refining, organizing, and condensing codes by finding commonalities or recurring patterns, also known as pattern coding (Saldana, 2009). The codebook was refined according to the second cycle codes. Next, three authors independently conceptualized possible themes of codes, and then met again for researcher triangulation. The generated potential themes were reviewed, using the original data sources as needed for adequacy and fit. Themes were further defined and named on an ongoing basis until consensus was reached. Themes and codes were presented to all coauthors for review and vetting (Nowell et al., 2017).

Results

The 55 videos included in analysis had, in total, over 9,548,600 views, 1.8 million “likes,”25,220 comments, and were shared by other TikTok users 18,077 times. Table 2 lists other hashtags used along with #Edtreatment. Out of 33 total creators represented, 8 (24.2%) specifically identified an ED diagnosis; all 8 of these creators disclosed having AN. The four overarching themes that emerged were Aspects of Treatment, Interpersonal Relationships, Emotions and Psychiatric Comorbidities, and ED Experiences (Table 3). Out of 55 videos, 43 (78%) included more than one theme; on average, videos contained 2 themes. Themes have been organized into treatment experiences that are outside of the self and those that are experienced within the self. Further details on themes and subthemes are described below.

Table 2.

Additional hashtags used in videos using #EDtreatment^*

#allfoodsfit #anarecovery #anoreccia [sic] #bestseatinthehouse #bodyposi #bodypositivity #camhs #constipation #dothescotttsslide #depresion [sic] #depresiontiktok [sic] #dunny [sic] #eatingdisoder [sic] #eatingdisorderawareness #eatingdisorderrecovery #eatingdisorderthings #ed #edawareness #edmemes #edrecovery #edres #edresidential #edtreatmentcenter #edtreatmentstories #edwarrior #ensurediet #ensureplusbelike #ew #feedingtube

#fdoe #food #foryou #foryoup #foryoupage #foryourpride #funny #fy #fyp #grippysocks #grippysocksjail #grouptherapy #haes #hospital #hospitallife #ifyoudidn’tlaugh #inpatient #inpatinettreamtnet #inpatientmentalhealth #itwasntme #mentalhealth #mentalhealthawareness #mentalhealthmatters #mentalhealthreocvery #mentalillness #mentallyill #mhmemes #notfyp #NotOneThing

#prorecovery #psychpatient #psychnurse #psychward #psychwardlife #psychwardproblems #psychwardstaff #psychwardstories #queenasf #rehabstories #recovery #recoveryisworthit #recoveryjournal #recoveryqueen #residential #residentialtreament #sadvibes #stomachproblems #storytime #therapy #thisisquitting #tiktokGGT #timeofmylife #treatment #viral #wannacry #weightgain #whatieatinaday #yikes

^*two # not reported as they contained ED treatment facility names

Table 3.

Themes, subthemes, and examples

Theme	Subthemes	Example
ED Experiences	-Weight Stigma -Body Image -ED Thoughts and Behaviors -Future/Recovery Thinking -Experiences of the Body (e.g., fainting, vomiting, constipation) -Loss of Normal Life/Life Experiences (e.g., college)	ED Treatment Stories Part 794: *everyone on their way to group*, *sitting down realizing its cold in there* everyone starts talking about how its cold. The nutritionist running the group asking if we are cold and want a window shut. Everyone insisting that they were fine. Me, shivering “of course we’re all cold do you think any of us have the body fat to stay warm being cold is part of malnutrition jesus”.
Aspects of Treatment	-Mealtimes -Feelings about Treatment (positive or negative) -Pitfalls of Treatment -Rules and Privileges -Phases of Treatment	hi these are things i got in trouble for in eating disorder treatment// i hid my switch (nintendo) for 5 weeks successfully and played animal crossing under the covers until one day they did a bag check while we were at lunch // i kept it in my bag bc i knew they did room searches when we weren’t there and ya it was a good 5 weeks // I put cigarettes under the bench in the smoking area to save for later because we were only allowed to have 2 but sometimes i wanted 3 // someone heard me say that i wanted to run away on the phone so they ~took my shoes~ for the rest of the time i was there // starting a black market for chewing gum // i had a shirt that said “im only here for the food” they didnt like that // and they switched my roommate bc they found out we were hooking up
Interpersonal Relationships	-Interactions with Staff and Other Patients -Interactions with Family, Friends, and Significant Others -Interactions with the Outside World	him: hey i saw ur snaphat- why u at the hospital??? // me : my weight is quite bad again sorry :( // him: please stay safe... for me boys dont like super thin girls // me: ....
Emotions and Psychiatric Comorbidities	-Expressions of Emotion (e.g. Guilt, Pride, Determination) -Reference to Co-morbidities (Anxiety, Self-Injurious Behavior)	I was really nervous about the avocado but it was okay. Sometimes you have rough spots. I was feeling really guilty about eating all the food but I kept going.

Themes Outside of Self

Aspects of Treatment

Over half of the videos (n=38; 69%) referenced aspects of treatment. Creators talked about mealtime, rules they were required to follow, and their feelings about their treatment. Although not every video specified treatment level, overall, many aspects of care were represented in the cohort, including medical and psychiatric hospital units, residential care, groups, and individual therapy. Creators referenced these aspects of care in written text, spoken word, hashtags, and captions.

Eating while in treatment was also frequently discussed, ranging from stories about tube feeding to pride about eating a feared food that was served. One creator shared the experience of tube feeding, saying, “my first restraint was over a tube… 7 grown men stood over me & held my hands and feet down to a bed. // i was screaming when they put the tube down my nose. // it went down my airpipe and i couldn’t breathe. // i tried to signal for them to stop but my hands weren’t free. // they took it out when my face turned blue.” Multiple creators shared what they ate over the span of a single day while in treatment and the emotions that accompanied eating. Creators also shared stories of mealtimes with other patients and victories around eating, such as, “eating all my meals 100% (even though it’s hard) // finally medically stable, out of starvation euphoria, and able to walk around :).”

Creators also focused on “weird rules we had to follow in treatment,” which included staff encouraging patients to vomit on the floor rather than in the garbage can to prevent the can from being removed, or other rules such as limited access to video games, room searches, chewing gum being forbidden, and mandatory exercise. Many creators testified to a lack of privacy in treatment, such as attempts to use the bathroom while the nursing staff were knocking on the door. One creator expressed discontent about rules, the food, and a lack of privacy but was pleased with the bed in their room. They stated,

Reasons why I never want to go back to eating disorder treatment // Getting up early every day for breakfast // being up that early is unnecessary // Tuesday morning weigh ins RIGHT after breakfast // ensures // LOCKED.BATHROOMS. // cc: do you know how annoying it is to have to ask to go pee when you need to go pee and then have someone listen to you when you go to pee? // The food isn’t that great... which is ironic because i’m here for not eating so you’d think they’d make good food? // NO STARBUCKS :( (I am Starbucks deprived) / /Always needing to be sitting down // cc: I will say though, i really like the beds because I can control how much i wanna sit up, and i really like the side tables... // side note - i actually think i might buy a bed like this when i leave because i like that i can make it higher or whatever

Interpersonal Relationships

Creators (n=28; 50%) commented on relationships both inside and outside of treatment. Stories of patient-patient interactions in treatment included those that were perceived as positive, neutral, romantic, and detrimental, such as the creator that told the story “me talking about how I’m insecure about my weight restored body // another patient telling me i’m thick and built like a caveman // me (angry reaction)” [sic]. Individuals also described interactions with individuals from their treatment team or medical professionals, as in this story in which the creator describes the interaction when she was sent from residential treatment to the emergency department:

She [a nurse] asked me why I was there so I told her that I was in ED residential and I hadn’t eaten much that week and so my team wanted to send me [to the emergency room] just to make sure everything was medically okay and she was like “what kind of eating disorder do you have?!” So, I told her my diagnoses and she said “well, you look fine? and you’re used to not eating anyway so what’s the big deal why’d they send you here?” And then the doctor literally said the same thing (crying emoji, skull and crossbones emoji, hand emoji). I guess since I don’t “look” like I have an ED that means that I’m automatically fine. [sic]

Relationships presented in videos sometimes included individuals from outside of treatment. One creator described feeling upset because they had broken up with a person they were dating and expressed frustration with lack of support from staff. In another story, a creator outlined how their mom found their laptop while in treatment and read about their ED behaviors. Some creators talked about positive relationships with roommates in treatment, and found humor with them in the situation they were in. For example, one video detailed how the creator felt nauseated and vomited on the floor, which caused their roommate to do the same and they found the scene humorous.

Themes Within Self

Emotions and Psychiatric Comorbidities

The theme of emotions and psychiatric comorbidities (n=21; 38%) included how creators felt during treatment and other co-morbidities, such as nonsuicidal self-injury. Creators talked about guilt and shame surrounding eating, their clothing, and their weight. Positive and mixed emotions were also described, such as happiness about finishing food or anger toward their ED but determination about recovering. In a video about what a creator ate in a day, they described a range of emotions while detailing what they ate. They wrote,

What i eat in a day hospital edition… Breakfast Cheerios w/cow milk 4/10 // Guilt :( // Anxious… Lunch Couldnt eat sandwich, had to supplement… Dinner Omfg this was absolutely terrifying // Dinner I finished it! // Guilt & 2 mental breakdowns”

Another creator also described anxiety and dissociation during a group therapy session, saying,

“Hi guys! Time to check in. Julia want to go?” “Sure, im feeling anxious...and kinda scared” “Ok! We’re here for support” Me starting to dissociate. (star eye emoji) anxiety attack (face emoji with squigggle line for mouth--? eek). Dissociating HaRD. “Julia are we doing okay?” Me barely able to talk: “Im having an anxiety attack” “Okay, remember to ground yourself” Me trying to breath, use an ice pack, and bring myself back it nOT working. “How are we doign Julia” “Im still having an anxiety attack” “Ok” “How are we doing on the food (food in black background with white letters, different from all other words with white background on black letters)” Me in outer space questioning everything that just happened “Not good”

One creator detailed how they have co-morbid ED and nonsuicidal self-injury which impacts their ability to get treatment, saying “when no hospitals will take you because you have an ED and you SH [self-harm]. [In smaller font] the system is so broken.”

ED Experiences

The theme ED Experiences was found in 42% (n=23) of the videos and encapsulates subthemes surrounding the experience of living with an ED. Content creators spoke directly about thoughts and behaviors associated with an ED (e.g., vomiting, concealing their weight loss under baggy clothes), shared thoughts about their weight, or talked about recovery. In an example of ED-related thoughts, one creator described their competitive self-talk upon returning to treatment with the caption, “me 2 minutes in after comparing my body to every other patients.” In 7 videos, creators described medical complications they had experienced, such as dizziness and fainting on standing, constipation, and cold intolerance. In one story, a creator shared how they were woken by nursing staff and experienced orthostatic dizziness but had to follow the meal schedule:

the nurse: are you ready to head down to breakfast? me standing up and feeling dizzy: I don’t feel so good. the nurse: well if we don’t go now you’ll miss breakfast and have to do a supplement. me deciding to give it a try and slowly walking to the elevator. me passing out as soon as the elevator starts moving. laying passed out on the floor of the elevator for 10 minutes.

Content creators also spoke directly about how their ED had changed their life (e.g., not gaining admission to their “dream school”), and “stolen so much from them.” Two out of the 23 videos highlighted ways to engage in ED behaviors in treatment: one individual hid a plastic spoon up their sleeve “knowing damn well what it’ll be used for” later (implying use of the spoon for harmful behaviors such as purging or self-injury), and one described hiding food in their bra to avoid eating it.

Discussion

Whether it is for finding community, social connection, escapism, motivation, or entertainment, social media is part of the lives of billions of people (Jarman et al., 2021; Pew Research, 2021). This study describes the content found on the social media platform TikTok using the hashtag #EDtreatment. TikTok content creators who used this hashtag discussed four broad themes: Aspects of Treatment, Interpersonal Relationships, Emotions and Psychiatric Co-morbidities, and ED Experiences. With over 9 million views, these videos had an extensive reach. This study builds on previous research on ED content found on TikTok which describes eating- and recovery-related videos (Davis et al., 2023; Greene & Norling, 2023; Herrick et al., 2021).

We excluded many videos despite their use of #EDtreatment because they did not actually discuss the experiences of treatment, which was the focus of the current study. Excluded videos included discourse about ED stigma, experiences of having ED symptoms, and troubles with the healthcare system, often in the form of fatphobia (biases against individuals who live in larger bodies) that occurred outside of treatment for an ED. While these forms of discourse are often found within treatment settings and may be relevant to treatment, videos that did not describe the topic within the context of treatment were excluded. It is possible that creators used the #EDtreatment hashtag in videos not explicitly or implicitly about treatment as they perceived the video to be an alternative form of treatment found through the peer support of an online community (Naslund et al., 2016). The concept of using social media as an alternative or adjunct to mainstream treatment has been highlighted in previous work in which qualitative responses of participants highlight financial concerns or treatment access as a barrier to professional help (Au & Cosh, 2022). In this way, creators excluded from the present study may have used #EDtreatment as a means of offering or soliciting peer support through TikTok in lieu of formal treatment. Alternatively, it is unclear if creators may have posted their experiences on social media as a modern iteration of pro-ANA content (Branley & Covey, 2017), in some way promoting the experience of EDs or being in treatment. Continued work in policy and advocacy in terms of geographic and financial accessibility of evidence-based treatment is critical. Additionally, future work engaging with individuals with lived experience on the motivators for social media use, whether for ED promotion (pro-ANA), or the ways in which social media provides an aspect of coping or recovery may produce recommendations for adjunct treatment or modifications to existing modalities.

The themes identified in this work represent both previously documented discussions of ED content on social media as well as identification of new themes. Novel to this work is the addition of the theme and subthemes of Aspects of Treatment. Although other studies have examined recovery (Au & Cosh, 2022; Goh et al., 2022; LaMarre & Rice, 2017) and components therein such as eating in recovery (Herrick et al., 2021), this is the first, to our knowledge, to specifically target and analyze treatment. Descriptions of treatment varied from a tough-but-necessary message to a forum for expressing the more challenging aspects of engaging in treatment, such as lack of privacy and “weird rules I had to follow.” Sharing these challenges and how being in treatment might differ from being at home may provide users an outlet to express frustrations in a community that can relate to these unique scenarios (e.g., being monitored while using the bathroom). Clinicians may use this content to address components of treatment that may be reasonably modified while still maintaining appropriate treatment and safety of individuals in their care. Additionally, in therapeutic settings, this content may serve as a framework to discuss the rationale for “weird rules” and how the rule might relate to an individual’s eating or weight control behavior.

The theme of interpersonal relationships is an addition to the literature that highlights the inherently social nature of treatment. Individuals described relationships with patients, family, friends, and providers. The prominence of this theme, with half of videos mentioning relationships either inside or outside of treatment, underscores the need for future research on how relationship dynamics between staff, other patients, and family affect treatment outcomes.

The discussion of ED experiences, emotions, and psychiatric co-morbidities, as captured by our themes, is not unique to TikTok. Reports of ED content on other platforms such as YouTube and Instagram have analyzed topics such as recovery, reasons for engagement, and the experience of being male with an ED (Goh et al., 2022; LaMarre & Rice, 2017; Malova & Dunleavy, 2022; Pereira et al., 2016). The finding that the theme ED Experiences emerged in videos about treatment is consistent with previous research that found high rates of ED behaviors in videos about recovery (Goh et al., 2022). Notably, ED Experiences was the least prevalent theme identified in the videos and only two videos described surreptitious behaviors to use during treatment (hiding spoons and food). This may allay fears of families or providers that maladaptive behaviors are learned from viewing TikTok content. Additionally, Emotions and Psychiatric Co-morbidities, as well as the subthemes, are not surprising given the emotions and co-morbidities described are highly prevalent in people with EDs, according to quantitative research (Burney & Irwin, 2000; Fox et al., 2015; Sanftner et al., 1995).

Additionally, many videos contained an “If-You-Know-You-Know” subtext, wherein creators alluded to possessing insider knowledge that would only be obvious to people with personal knowledge of ED treatment. The presence of this content suggests that TikTok, like most other social media platforms, hosts online peer communities (Greene & Norling, 2023; Rolls et al., 2016). Positive or negative, the content posted in these online communities may have a powerful effect on users. Research indicates SNS influence health-related behaviors, suggesting that membership in online communities can be an important determinant of health (Laranjo et al., 2015; Miller et al., 2020). As adolescents report the highest TikTok usage (Doyle, 2024), peak incidence of eating disorders (Smink et al., 2012), and tend to be highly influenced by peers and those who possess information important to a social network (Miller et al., 2020; Rueger et al., 2021) individuals who relay stories of treatment may have a heightened ability to bias this vulnerable population.. Whether creators intend to persuade viewers to regard ED treatment as they do is not entirely clear. However, messages that do not explicitly intend to persuade, such as narratives, may be even more influential than those that do (Miller et al., 2020).

Videos often capitalized on what Herrick et al. (2021) categorized as “trendy gallows humor,” which was also found by Greene et al. (2023) in their analysis of TikTok content. Although we viewed this as a storytelling device, and not a theme of the content perse, it was noted by all co-authors who viewed, transcribed, and coded videos. Gallows humor is more frequently described in relation to health professionals as opposed to individuals experiencing an illness, although its use has been described as a behavioral coping strategy in stressful or traumatic situations (Maxwell, 2003) which may apply to individuals experiencing an ED or those in treatment. It is noteworthy that regardless of type (recovery vs. treatment), gallows humor is found across ED content on TikTok. Understanding the use of gallows humor for individuals with EDs may provide insight to the process of recovery or coping mechanisms and should be explored further. Although not a theme of the content itself, the way in which the content was presented is of interest. The use of entertainment techniques such as dramatic reenactments, music, and humor suggests that creators may have been attempting to generate a high volume of viewer consumption. When combined with the brief, one-minute format of TikTok videos, users may consume large amounts of content rapidly (Montag et al., 2021). Many of the videos were narratives of personal anecdotes related to sensitive material, which has been shown to be highly persuasive (Miller et al., 2020). The imagery and attentional focus of a narrative tends to prevent critical appraisal of a message, leading to an increased likelihood that it will be taken at face value (Miller et al., 2020; Rueger et al., 2021). Therefore, videos about treatment may influence individuals who are considering treatment options either positively or negatively, depending on the messaging of the content they consumed. For example, discussion of “weird rules” and privacy concerns may be interpreted as something to be avoided. Alternatively, discussion of friendship, understanding, and community found in content about positive peer relationships may engender a more favorable perception of treatment. When engaging individuals with EDs, their interpretation of and the significance they ascribe to this content is warranted, and clinicians may consider incorporating discussion of social media content as a routine part of each visit. Future studies of #EDtreatment on TikTok should investigate participants’ reactions to the varied content in this hashtag. For example, experimental studies investigating willingness to pursue treatment following exposure to this content may be useful. This could be achieved by randomly assigning participants to view either #EDtreatment or neutral (e.g. landscape) videos and assessing intentions to seek help for their ED before and after viewing the videos. Future qualitative interview studies that aim to gather data about participants’ reactions to such videos may also clarify whether these videos are harmful, validating, or perhaps a mixture of both.

Improving clinician-client communication around TikTok and other social media content may provide a forum to dispel erroneous perceptions of treatment, discuss fears or barriers that inhibit treatment seeking or engagement with treatment, or open a realistic conversation about what a person is experiencing in a particular treatment setting and the reasoning behind rules that exist during treatment (e.g., bathroom privileges). Working with individuals to disentangle information that is strongly worded, hyperbolized, or potentially provocative presented via social media may be useful in this population (Suarez-Lledo & Alvarez-Galvez, 2021). Experiences of treatment may focus on discussions that fall into the categories presented here of experiences that are outside of self vs. within self. For example, clinicians might discuss experiences outside of self, such as treatment protocols or relationships with others including others’ potential reactions to the patient’s ED and treatment. Also, clinicians might discuss experiences within self, such as an individual’s emotional reactions and psychiatric symptoms or specific ED symptoms.

Although recent platform-level initiatives such as content warnings and restrictions on TikTok have sought to reduce the possibility of potentially harmful content from reaching vulnerable individuals, individual or broad level public health initiatives that improve media literacy may be warranted, Teaching adolescents ways to process the vast amount of messaging they receive digitally each day is an ongoing issue not unique to eating disorders. This is especially salient to adolescent health behaviors as we begin to understand the ways in which individuals both find health-related support in social media as well as the ways in which these platforms contribute to misinformation (Basterfield et al., 2018; Benetoli et al., 2018; Colineau & Paris, 2010; Fleary et al., 2018; Kingod et al., 2017; Rueger et al., 2021). Social media literacy interventions both in schools and in clinic settings have shown initial promise, including interventions that focus on improving body image and preventing eating disorder symptoms; however, best practice for how to deliver these interventions, and in what setting, remains to be established (Gordon et al., 2021; Kurz et al., 2022; Mora et al., 2015).Limitations of this work should be considered and results interpreted with caution. This study was conducted in the United States; geographic location influences which videos are presented to users due to TikTok’s algorithms. Additionally, videos were restricted to those in which content and captions were in English. Thus, findings may not be generalizable to audiences in other countries or those that are non-English speaking. Further, we did not interview participants and therefore do not have information on age, self-identified gender, race, ethnicity, socioeconomic status, and other characteristics. Additionally, only 8 creators identified their ED; therefore, we cannot know the illness or recovery status of the remaining creators and its relevance to creating content regarding treatment specifically for EDs other than their use of #EDtreatment. Finally, we used #EDtreatment to select videos, which is one of many hashtags used to capture similar content. Although it is possible that we inadvertently excluded videos in which creators were referencing treatment experiences, such a possibility was neither explicit nor implicit from the videos we viewed. The focus of this study was to understand the experience of being in treatment for an ED as told by individuals on TikTok. Therefore, if the video was not pertaining to treatment, it was excluded. Although we carefully looked for explicit and implicit clues about treatment in the written caption, spoken word, hashtags, content, and the video itself (e.g., in a hospital room), we did not interview creators to discuss the intent or setting of their videos and therefore cannot know with absolute certainty that other treatment videos were not excluded. Finally, although every attempt was made to thoroughly capture all content in the database, we may have inadvertently missed a particular visual or auditory cue in our transcription.

This study builds on extant literature cultivating understanding of the experience of EDs as told through social media platforms, with a focus on TikTok and the experience of ED treatment. Viewing content regarding treatment for EDs may influence at-risk individuals, including those who are considering, or are actively in, treatment. Clinicians already working with individuals experiencing EDs should additionally consider opening communication with their clients regarding content viewed on social media platforms.

Clinical Implications:

• Individuals share their stories and feelings of their treatment experience on TikTok

• The meaning of TikTok content should be discussed with clients and patients

• Social media literacy may be an important intervention for those with, or at risk for, EDs

• Research on motivations for those with ED posting on social media may be informative

Availability of data:

Data sharing is not applicable to this article because data are publicly available.