WASHINGTON — Videos promoting 300 calorie diets and other pro-anorexia content flooded Amanda Noll’s TikTok feed, even as she searched for videos encouraging eating disorder recovery.
Noll, a college student and support specialist at Legacy Treatment Services, has been in eating disorder recovery since 2014. She said the app’s algorithm gave her little to no control over the content she was viewing, and it fueled her obsessive thoughts about body image and food consumption. These videos led her to delete the TikTok app from her phone after two years of use.
She isn’t alone. Appearance-based platforms that utilize photos and videos are “most problematic” in eating disorder risk, said Madeline Wick, a doctoral student in clinical psychology at Florida State University who studies the intersections between eating disorders and social media.
“We are seeing that people who tend to spend more time on social media and also people who tend to do more problematic activities such as editing and posting their photos, things like that. They do tend to have higher levels of disordered eating,” Wick said. “There is a lot of evidence to that regard that social media can have a pretty problematic impact on people.”
TikTok has circulated eating disorder content for years. The app promotes videos encouraging starvation and workout routines for users to see “abs in a week.” The search “calorie obsession” generated hundreds of videos, and a June 2021 investigation by the Wall Street Journal found the app showed teenage accounts tens of thousands of videos encouraging dramatic weight loss within just a few weeks.
Despite this history, the National Eating Disorder Association (NEDA) and National Alliance for Eating Disorders (NAED), two of the country’s leading eating disorder organizations, launched a partnership with TikTok as part of programming for Eating Disorder Awareness Week.
The collaborations between these two organizations and TikTok, a platform that has personally caused or exacerbated eating disorders among many survivors, has left them confused and angry.
“I don’t understand why they would work with TikTok unless TikTok was actually going to do something to help eating disorders,” Noll said. “When you go into eating disorder treatment, we talk about TikTok a lot. There is a lot of harmful content on there that encourages and fuels and sustains and maintains eating disorders.”
Sarah Chase, vice president of communication and marketing at NEDA, said in a statement that the organization works to guide TikTok on “emerging trends, features and terminology,” with the goal of improving policies on eating disorder-related content. NEDA is also helping the platform ban search terms and pro-eating disorder hashtags, she added.
“We believe in being present wherever there may be someone affected by an eating disorder,” Chase said in the statement. “That means working with online platforms, such as TikTok, where we can help them strengthen how they approach safety on their app.”
Chase added TikTok’s community guidelines should prohibit content promoting pro-eating disorder behaviors and said TikTok’s safety team removes content and accounts that regularly further this type of content.
Research conducted by the Center for Countering Digital Hate, however, presented a different story. In January 2023, the center found TikTok removed access to just seven of the 56 eating disorder hashtags it had flagged in a previous safety report using November 2022 data. These hashtags, which often encourage pro-thinness content, have more than 14.5 billion views.
On average, 91% of those views came from users under 24. Wick said teenagers are using social media at increased rates and are impacted by comparing themselves to others.
“Social media is so heavily curated, people aren’t necessarily posting their real lives on social media, but as you’re scrolling through your TikTok or Instagram feed, you’re not necessarily processing that information,” Wick said. “You might see an image and you’ll quickly be comparing yourself of ‘Oh, well, I don’t look like that person’ not really realizing that that image is heavily edited.”
College student Gabby Barber, who has struggled with body image issues related to social media, said she was hurt by the partnership because NEDA did not recognize the app’s harm to the eating disorder community. She said the lack of acknowledgment made her feel the organization was enabling TikTok’s work.
While she can understand where NEDA is coming from, she said the organization needs to be more specific and transparent about its work on the platform.
In a statement to Medill News Service, a TikTok spokesperson said they regularly consult with health experts to remove violations of their policies. This includes a broad definition of disordered eating, encompassing things like over exercising and short-term fasting.
“We’re mindful that triggering content is unique to each individual and remain focused on fostering a safe and comfortable space for everyone, including people who choose to share their recovery journeys or educate others on these important topics,” the spokesperson said.
The spokesperson also said there are ways to limit content exposure on the app by reporting videos and establishing content preferences by swiping a not interested icon on the app.
Sophia Aurand, a high school student and survivor of anorexia nervosa, said the site heavily encouraged weight loss tips that she copied. TikTok videos showed her tips on how to hide her eating disorder from her parents, and she said it normalized behavior like passing out, undereating and dramatic hair loss.
Aurand, who deleted the app after being inundated with these videos, said she found the partnership counterproductive, especially for organizations trying to serve eating disorder survivors and their loved ones.
“NEDA shouldn’t have partnered with TikTok because we can’t really change the algorithm, and I know firsthand that even when people try to change their feed they still end up with the triggering content they are trying to avoid,” Aurand said. “If NEDA is going to partner with TikTok, the best option isn’t for spreading awareness on EDs and marketing their services but rather to stop ED content.”
Johanna Kandel, the CEO of NAED, said her organization worked with TikTok to spotlight their hotlines on an app-based eating disorder awareness page. Unlike other organizations that utilize volunteer-based lines, Kandel said her organization staffs hotlines with clinicians who have specializations in eating disorder treatments.
Kandel went into the partnership with an understanding of the harm TikTok can bring to those struggling with eating disorders, and said she presented her concerns in the first meeting they had with the company. However, she said it’s important to have a presence on social media.
“Millions and millions of people are using these apps, and if we remove ourselves completely from the conversation, speaking on behalf of the Alliance, there’s a potential to connect people to care and to let them feel less alone,” Kandel said. “I came to this space because I struggled with my eating disorder. I had zero ideas of in a sense what an eating disorder was, and that there were services available.”
The Alliance has seen increased calls and emails since the partnership, Kandel said. But, if harm on the platform continues, she said she will re-evaluate future partnerships.
Noll, the support specialist, said having a seat at the table is not a good enough justification for these organizations. TikTok promotes too much harm in the eating disorder community, she said, and she doesn’t see serious changes being made.
“Social media, there is a correlation there with mental health and it is something that should be looked at and taken seriously,” Noll said. “I would hope that if NEDA is serious about their work and their mission and what they do, then they would be serious about making some serious changes and being more specific about what those changes look like.”
Some eating disorder groups, including the Eating Disorder Coalition, are working on regulating social media companies, including TikTok, through legislation. Allison Ivie, an EDC government relations representative, said the organization has been working to push the Kids Online Safety Act, legislation that would place a duty of care policy onto these companies.
The bill would hold social media companies accountable for mental health harms their platforms spread, which Ivie said includes eating disorders. She said companies have had too long to regulate their own policies, and things are only getting worse, which motivated the EDC to look into legislation.
KOSA passed unanimously out of the Senate Commerce Committee in July. Though it did not pass last year, Ivie said the EDC is working to create a companion bill in the House and run the act through both chambers of Congress for a better chance of passing legislation this year.
“The mental health trends that are happening in young adults and adolescents, it’s not going down and it’s only getting worse,” Ivie said. “Social media is not going away, no one’s asking for it to go away. But we can be a lot more responsible and take care of future generations, much more than we are.”
The EDC has not worked directly with social media companies during its legislative work, and Ivie said the current debate about TikTok partnerships reflects internal divisions in the eating disorder community. She said organizations have to decide whether they are going to try and influence positive change on the app, or step away from the conversation because of routine harm caused by it.
“I don’t know if there’s a right answer,” Ivie said. “A lot of advocacy is that, if you’re not going to be at the table, these decisions are going to be made without your voice … What’s the benefit loss ratio there? I think for every organization that looks very different.”