In August 2022, Beat conducted a survey of 255 people with lived experience of eating disorders to understand more about their experiences online. The survey was open from Wednesday 10th August 2022 – Wednesday 24th August 2022. There were 25 questions, which were a mixture of multiple choice and descriptive answers.
The results were concerning: 91% of people with lived experience of having an eating disorder had encountered content which was harmful in the context of their eating disorder.
People with lived experience of eating disorders described being ‘bombarded’ with triggering content, imagery and advertisements which could ‘fuel’ eating disorder thoughts and behaviours (indeed, the word ‘fuel’ appeared 13 times throughout the responses).
Many of the concerns voiced by people with eating disorders centred on ‘algorithms’, which ‘are designed to show people what they want to see to keep them online’. These algorithms were seen to target content and advertisements at social media users based on their previous online interactions and behaviour.
The algorithms that function to keep me hooked started to actually fuel my ED as they churned out more and more triggering content.
Some described how difficult it can be to avoid harmful content, when seeking out harmful content can be symptomatic of an eating disorder.
"For someone with anorexia, that means there is a part of me that wants to see content that will result in me causing me further harm to myself […] The algorithm is easy game for an eating disorder and makes the illness’ job easier by giving it access to more tools that can be used to hurt the sufferer."
People with lived experience of eating disorders described a lack of control over the content they view, and the impossibility of avoiding harmful content. Respondents used words and phrases which emphasised a lack of agency in online spaces: ‘addictive’, ‘drawn down rabbit holes’, ‘subjected to’, ‘keep me hooked.’
"In the past […] you would have to search to find it and it wasn't always so easy. This made stopping that behaviour easier than it would have been but now, its like you can't avoid it and all the pop ups and suggestions across social media make it unavoidable. […] I'm transported back into the eating disorder way of thinking and not by choice."
A number of those who completed the survey described having to avoid online platforms or even delete social media because of how harmful these platforms could be in the context of their eating disorder.
During my recovery, I decided to stay off certain social media sites so I could avoid this content and found that it helped me to build my self-esteem and self-confidence.
91% of people with lived experience of having an eating disorder had encountered content which was harmful in the context of their eating disorder.
The content they described as harmful in the context of their eating disorder included:
Content which actively encourages, promotes or glamorises eating disorders
Respondents described a so-called ‘darker side’ of online spaces, which actively promotes eating disorders. Some respondents described learning eating disorder behaviours or ‘tips’ online.
“I have recovered from my ED nearly 10 years ago but I have recently come across Instagram accounts of people who […] are glorifying it. It is bringing up feelings I haven't felt in a long time.”
Diet Culture, Fitness and Weight Loss Adverts
Alongside content which actively promotes eating disorders, some respondents also found diet culture, fitness, and weight loss content harmful in the context of their eating disorder. Many described being recommended diet culture content in online spaces:
"I have more diet culture related content being recommended to me than ever before and it's not something I have engaged with in a long time but now it's unavoidable"
Alongside content created by social media users, online advertising was also seen to cause harm. 76% of people responding to the survey felt that online advertising was harmful for people with eating disorders. Many respondents described being ‘inundated with adverts for diets or weight loss surgeries’ which they ‘can’t avoid’.
“Can't avoid adverts. I control what I follow but have no control about ads. Even when I say I don't want to see ones like that they still come up”
A number of people felt that they were targeted by adverts promoting weight loss specifically because of their attempts to seek help for their eating disorder online.
"Often, if I've looked up body-positivity or ED recovery, adverts will then pop up that promote weight loss, diet pills, extreme workouts which is the complete opposite of what I initially searched for."
When asked which platforms respondents felt could be most harmful for people impacted by eating disorders, by far the most frequently selected platforms were Instagram (83%) and TikTok (75%). The third most frequently selected platform was Youtube (34%).
Throughout the survey responses Instagram and TikTok were also the most frequently mentioned platforms, with Instagram mentioned 100 times, and TikTok mentioned 81 times. In comparison, eating disorder forums were mentioned 28 times, Twitter was mentioned 27 times and Facebook was mentioned 26 times.
TikTok was seen to be uniquely harmful because of its content-based algorithm design, and the lack of control users have over the content they view:
77% felt that online spaces could be positive for people with eating disorders.
"Social media, although it can be damaging, has been such a motivator for my personal recovery. Especially some tiktok and Instagram accounts I follow have been a real inspiration of life after an ed and how good that can be, and a real comfort when nobody in my real life seemed to relate."
We heard numerous testimonies from individuals who had found support, comfort and solidarity in online communities whilst recovering from an eating disorder, or whilst supporting someone else in their recovery. However, we also heard concerning reports of individuals being suggested harmful content after engaging with these positive online spaces, as a result of content-based algorithms.
"I have also found these platforms super helpful for my recovery because there are some wonderful accounts that promote healthy relationships with food & body image. But you have to be in a good place mentally to find positive content, and the negative content is too easy to find. "
While there are genuine opportunities for online spaces to be able to support people in recovery from an eating disorder, it’s clear that the designs of, and content available on, these platforms can make these spaces unsafe. It’s important that online platforms are held to account to protect people with eating disorders on their platforms.