“Hunger Hurts but Starving Works”: Characterizing the Presentation of Eating Disorders Online

ABSTRACT

Within the CSCW community, little has been done to systematically analyze online eating disorder (ED) user generated content. In this paper, we present the results of a cross-platform content analysis of ED-related posts. We analyze the way that hashtags are used in ad-hoc ED- focused networks and present a comprehensive corpus of ED-terminology that frequently accompanies ED activities online. We provide exemplars of the types of ED-related content found online. Through this characterization of activities, we draw attention to the increasingly important role that these platforms play and how they are used and misappropriated for negative health purposes. We also outline specific challenges associated with researching these types of networks online. CAUTION: This paper includes media that could potentially be a trigger to those dealing with an eating disorder or with other self-injury illnesses. Please use caution when reading, printing, or disseminating this paper.

References

1. Nazanin Andalibi, Pinar Ozturk, and Andrea Forte. 2015. Depression-related Imagery on Instagram. Proceedings of the 18th ACM Conference Companion on Computer Supported Cooperative Work & Social Computing, ACM Press, 231-234.
2. Jon Arcelus, Alex J Mitchell, and Jackie Wales. 2011. Mortality Rates in Patients With Anorexia Nervosa and Other Eating Disorders. Archives of General Psychiatry 68, 7, 724-731.
3. Natalie Boero and Cheri Jo Pascoe. 2012. Pro-anorexia Communities and Online Interaction: Bringing the Proana Body Online. Body & Society 18, 2, 27-57.
4. Dina L G Borzekowski, Summer Schenk, Jenny L Wilson, and Rebecka Peebles. 2010. e-Ana and e-Mia: A content analysis of pro-eating disorder Web sites. American journal of public health 100, 8, 1526-1534.
5. Geoffrey Bowker and Susan Leigh Star. 1999. Sorting Things Out. MIT Press, Boston, MA.
6. Sarah R Brotsky and David Giles. 2007. Inside the "pro-ana" community: a covert online participant observation. Eating disorders 15, 2, 93-109.
7. Hilde Bruch. 1973. Eating Disorders: Obesity, Anorexia Nervosa, and the Person Within. Basic Books.
8. Axel Bruns and Jean Burgess. 2011. The use of Twitter hashtags in the formation of ad hoc publics. 6th European Consortium for Political Research General Conference, August, 25-27. Retrieved from http://eprints.qut.edu.au/46515
9. Marilyn A Campbell. 2005. Cyber bullying: An old problem in a new guise? Australian Journal of Guidance and Counseling 15, 1, 68-76.
10. Stevie Chancellor, Jessica Pater, Trustin Clear, Eric Gilbert, and Munmun De Choudhury. 2016. #thygapp: Instagram Content Moderation and Lexical Variation in Pro-Eating Disorder Communities. Proceedings of the ACM 2016 Conference on Computer Supported Cooperative Work (CSCW), In progress.
11. Elfreda A Chatman. 1999. A Theory of Life in the Round. Journal of the American Society for Information Science 50, 3, 207-217.
12. Mario Christodoulou. 2012. Pro-anorexia websites pose public health challenge. The Lancet 379, 110- 112. Retrieved October 15, 2013 from http://linkinghub.elsevier.com/retrieve/pii/S0140673612600488
13. Sheldon Cohen. 2004. Social relationships and health. The American psychologist 59, 8, 676-684.
14. Mark Connor and Christopher J Armitage. 2002. The Social Psychology of Food. Open University Press.
15. Bruce Damer and Amy Bruckman. 1996. Peopled Online Virtual Worlds: A New Home For Cooperating Communities, A New Frontier For Interaction Design (panel). Proceedings of the 1996 ACM Conference on Computer Supported Cooperative Work, ACM Press, 441-442.
16. Jill Dimond, Casey Fiesler, and Amy S. Bruckman. 2011. Domestic violence and information communicaiton technologies. Interacting with Computers 23, 5, 413-421.
17. Christopher Fairburn and Paul Harrison. 2003. Eating Disorders. The Lancet 361, 9355, 407-416.
18. Rachel A Fleming-may and Laura E Miller. 2010. " I' m Scared to Look. But I'm Dying to Know ": Information Seeking and Sharing on Pro-Ana Weblogs. Proceedings of the 2010 ACM ASIST Conference, ACM Press.
19. David M Garner, Marion P. Olmstead, Yvonne Bohr, and Paul E Garfinkel. 1982. The Eating Attitudes Test: Psychometric features and clincial correlates. Psychological Medicine 12, 871-878.
20. David Giles. 2006. Constructing Identites in Cyberspace: The case of eating disorders. British Journal of Social Psychology 45, 3, 463-477.
21. Oliver L Haimson, Jed R Brubaker, Lynn Dombrowski, and Gillian R Hayes. 2015. Disclosure, Stress, and Support During Gender Transition on Facebook. Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing, ACM Press, 1176-1190.
22. Derek Hansen, Ben Shneiderman, and Marc Smith. 2010. Analyzing Social Media Networks with NodeXL: Insights from a connected world. Human Computer Interaction Lab 27th Annual Symposium.
23. Lavelle Hendricks, Rick Lumadue, and L. Rusty Waller. 2012. The evolution of bullying to cyberbulying: an overivew of the best methods for implementing a cyber bullying preventive program. National Forum Journal of Counseling and Addiction 1, 1, 1-9.
24. Judith Horne and Sally Wiggins. 2009. Doing being "on the edge": managing the dilemma of being authentically suicidal in an online forum. Sociology of Health & Illness 31, 2, 170-184.
25. Yuheng Hu, Kartik Talamadupula, and Subbarao Kambhampati. 2013. No Dude, srsly?: The Surprisingly Formal Nature of Twitter's Language. Proceedings of the 2013 AAAI ICWSM Conference.
26. Funda Kirvan-Swaine, Jeremy Ting, Jed Richards Brubaker, Rannie Teodoro, and Mor Naaman. 2014. Understanding Loneliness in Social Awareness Streams: Expressions and Responses. 8th International AAAI Conference on Weblogs and Social Media.
27. Joyce Lamerichs and Hedwig FM Te Molder. 2003. Computer-mediated communication: From a cognitive to a discursive model. New Media & Society 5, 4, 451- 473.
28. Joyce Lamerichs. 2003. Discourse of support: exploring online discussion on depression. Wageningen University.
29. Susan P. Limber and Mark A. Small. 2003. State laws adn policies to address bullying in school. School Psychology Review 32, 445-554.
30. Michael Massimi, Jackie Bender, Holly O Witteman, and Osman Hassan Ahmed. 2014. Life Transitions and Online Health Communities : Reflecting on Adoption, Use, and Disengagement. Proceedings of the 17th ACM conference on Computer supported cooperative work & social computing, ACM Press, 1491-1501.
31. Bharat Mehra, Cecelia Merkel, and Ann Peterson Bishop. 2004. The internet for empowerment of minority and marginalized users. New Media & Society 6, 6, 781-802.
32. Andrew D Miller and Elizabeth D Mynatt. 2014. StepStream : A School - based Pervasive Social Fitness System for Everyday Adolescent Health. Proc. of ACM CHI 2014, 2823-2832.
33. Wendy Moncur. 2013. The Emotional Wellbeing of Researcher: Considerations for Practice. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, ACM, 1883-1890.
34. Janet Moursund. 1997. SANCTUARY: social support on the Internet. In Mapping Cyberspace: Social Research on the Electronic Forntier, J.E. Behar (ed.). Dowling College Press, Oakdale, NY.
35. Elizabeth D. Mynatt, Vicki L. O'Day, Annette Adler, and Mizuko Ito. 1998. Network communities: something old, something new, something borrowed...". Proceedings of the Computer Supported Cooperative Work (CSCW) Conference, 123-156.
36. Brian D Ng and Wiemer Wiemer-Hastings. 2005. Addiction to the Internet and online gaming. Cyber Psychology & Behavior 8, 2, 110-113.
37. Suzanne Nofke. 1980. The Dialogue - Saint Catherine (of Siena). Paulist Press.
38. Eric Partridge. 2015. Slang: To-day and yesterdayNo Title. Routledge.
39. Jessica Pater, Andrew Miller, and Elizabeth D Mynatt. 2015. This Digital Life : A Neighborhood - B ased Study of Adolescents' Lives Online. Proceedings of the 33nd annual ACM conference on Human factors in computing systems, ACM.
40. Filippo Radicchi, Claudio Castellano, Federico Cecconi, Vittorio Loreto, and Domenico Parisi. 2004. Defining and Identifying communities in networks. Proceedings of the National Academy of Sciences of hte United States of America 101, 9, 2658-2663.
41. Jessica Reaves. 2001. Anorexia Goes High Tech. Time.
42. Emma Rich. 2006. Anorexic dis(connection): managing anorexia as an illness and an identity. Sociology of Health and Illness 28, 3, 284-305.
43. Derek Ruths and Jurgen Pfeffer. 2014. Social media for large studies of behavior. Science 346, 6213, 1063- 1064.
44. Deborah A Salem, G. Anne Bogat, and Christina Ried. 1997. Mutual help goes on-line. Journal of Community Psychology 25, 2, 189-207.
45. Yukari Seko. 2013. Picturesque Wounds: A Multimodal Analysis of Self-Injury Photographs on Flickr. Qualitative Social Research 14, 2.
46. Leslie Regan Shade. 2003. Weborexics : The Ethical Issues Surrounding Pro-Ana Websites. ACM SIGCAS Computers and Society 32, 7, 1-9.
47. Lorraine Sheridan and Tim Grant. 2007. Is cyberstalking different? Psychology, Crime & Law 13, 6, 627-640.
48. Frédérique R E Smink, Daphne van Hoeken, and Hans W Hoek. 2012. Epidemiology of eating disorders: incidence, prevalence and mortality rates. Current psychiatry reports 14, 4, 406-14.
49. Patrick F. Sullivan. 1995. Mortality in anorexia nervosa. The American Journal of Psychiatry 152, 7, 1073-1074.
50. Zeynep Tufekci. Big questions for social media big data: Representativeness, validity and other methodological pitfalls. arXiv preprint arXiv:1403.7400.
51. Kimmo Tuominen and Reijo Savolainen. 1997. A social constructionist approach to the study of information use as discursive action. Proceedings of International Conference on Information Seeking in Context, Taylor Graham Publishing, 81-96.
52. T.D. Wade, A Keski-Rahkonen, and J. Hudson. 2011. Epidemiology of Eating Disorders. In Textbook in Psychiatric Epidemiology (3rd ed.), M. Tsuang and M. Tohen (eds.). Wiley, 343-360.
53. Samuel M. Wilson and Leighton C. Peterson. 2002. The Anthropology of Online Communities. Annual Review of Anthropology 31, 1, 449-467. http://doi.org/10.1146/annurev.anthro.31.040402.085436
54. Andrew Winzelberg. 1997. The Analysis of an Electronic Support Group for Individuals with Eating Disorders. Computers in Human Behavior 13, 3, 393- 407.
55. Susan P Wyche, Gillian R Hayes, Lonnie D Harvel, and Rebecca E Grinter. 2006. Technology in spiritual formation: an exploratory study of computer mediated religious communications. Proceedings of the 2006 20th anniversary conference on Computer supported cooperative work, 199-208.
56. Yafu Zhao and William Encinosa. 2009. Hospitalizations for Eating Disorders from 1999-2006. Agency for Health Care Policy and Research, Rockville, MD. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK53970/
57. Mark Zimmerman and Jill Mattia. 2001. A self-report scale to help make psychiatric diagnoses: the Psychiatric Diagnostic Screening Questionnaire. Archives fo General Psychiatry 58, 8, 787-794.
58. 2000. American Psychiatric Association Work Group on Eating Disorders - Practice guidelines for the treatment of patinets with eating disorders. American Journal of Psychiatry 157, 1 Supplement, 1-39.
59. 2002. The Promoting Healthy Eating Bheaviors Youth Act of 2002 as a part of a Women's Omnibus Health Bill.
60. 2013. Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Washington.
61. 2014. General Statistics. National Eating Disorders Association.
62. 2015. Anorexia nervosa. Mayo Clinic. Retrieved from http://www.mayoclinic.org/diseases-conditions/anorexia/
63. 2015. Malicious Cyber Behavior. Retrieved from https://www.vodafone.co.nz/corporate-responsibility/report-2013/social-impact/