# “It didn't feel like they cared”: exploring factors that influence privacy and disclosure in disordered eating and eating disorders (DEEDs)

## TL;DR

This study explores how family, social media, and healthcare influence disordered eating behaviors and why people avoid seeking help.

## Contribution

The study identifies specific factors influencing disordered eating and barriers to disclosure using qualitative insights from affected individuals.

## Key findings

- Family comments and maternal influence significantly contribute to disordered eating behaviors.
- Social media glamorizes disordered eating through platforms like TikTok and Tumblr.
- Stigma and healthcare provider neglect prevent individuals from seeking help for eating disorders.

## Abstract

Disordered eating (DE) affects millions of individuals each day as they are exposed to diet culture, normalization of restricting foods, and public perception of a "healthy" body and diet. Persistent DE behaviors may progress in severity and frequency, leading to harmful behaviors that result in physical and psychological health outcomes, ultimately meeting the diagnostic criteria for an eating disorder (ED). The purpose of this study was to identify what factors influence disordered eating and eating disorders (DEED), why individuals do not disclose their experiences, and what could have been done to help them with their DEED.

Using the Communication Privacy Management theory to develop questions, qualitative semi-structured interviews were conducted with 15 participants. A thematic analysis was conducted from interview transcripts to develop overarching themes.

Five key themes emerged from participant interviews: family influence and comments, social media influence, healthcare influence, justification factors, and comorbidities. These themes reflect influences on participants developing DEEDs and barriers to getting help such as stigma associated with mental health issues and healthcare providers' unwillingness to discuss their DEED. Many participants also noted that family influences, particularly mothers, were a contributing factor to their DEED as well as playing sports and social media like Tumblr or "What I eat in a day" videos on TikTok.

These findings highlight the complex social, cultural, and structural factors that shape privacy management and the development and disclosure of DEED. Public health professionals can use these results to help bridge the gap between education, policy reform, and accessible healthcare to address the often-overlooked public health issues of DEED.

Disordered eating and eating disorders (DEEDs) impact many individuals and when left unattended can lead to deadly consequences. In this study, we asked people about what influenced or continues to influence their DEED behaviors, why people did not tell those close to them about their DEEDs, and what they wish people close to them would have done to help them. What we found is that there are a lot of influences on DEEDs mostly stemming from childhood and adolescence. The people we talked to in this study said their family was a big influence, especially their mothers who played a large part in their development of DEEDs as well as their grandparents and fathers. We also learned that social media has played a role by seeing people make DEEDs look glamorous or through "What I eat in a day" videos. Some individuals said that healthcare providers also influenced their DEEDs by not taking their patients seriously about DEED concerns. Often participants mentioned their DEED was coupled with mental health challenges, that are often stigmatized. These influences also dissuaded participants from telling those close to them about their struggles, which prevented them from seeking help. This research helps us understand what leads to DEEDs and what prevents people from getting the help they need.