Eating Disorder Communities on the Web

1
Eating Disorder Communities on the Web

• Descriptive Study of Open Diary and LiveJournal
  ED Communities
• Rachel Jacobson and Jenny Ryan

2
Introduction

• Wanted to investigate the role of online diary
  sites in eating disordered individuals, which
  have not been studied previously.
• We examined qualitatively a general Eating
  Disorders Body Image circle on OpenDiary, as
  well as nine LiveJournal communities using
  ethnographic analysis and interview data.

3
What previous research has been done on this
topic?

• An article by Dr. Stephanie Tierney (2006) on the
  implications of pro-anorexia websites discusses
  how eating disordered individuals are isolated by
  nature and need to find a creative way to form
  connections with like-minded individuals.
• Members vs. outsiders Membership in these
  communities helps alleviate feelings of
  alienation from normal society.
• Visiting these sites can help normalize behaviors
  and thoughts associated with eating disorder
  identity.
• Benefit available 24 hours/day.
• Suggests asking patients whether they are
  involved in these online communities.

4
What previous research has been done?

• An article entitled Pro-anorexics and recovering
  anorexics differ in their linguistic Internet
  self-presentation (Lyons, Mehl, Pennebaker, 2006
  investigated 162 Internet message board entries
  and 56 homepages, examining both pro-anorexia and
  recovery sites.
• Across both text sources, pro-anorexics
  displayed more positive emotions, less anxiety, a
  lower degree of cognitive reflection, and lower
  levels of self-directed attention than did
  recovering anorexics. Pro-anorexics were also
  more focused on the present and less on the past.
  Finally, pro-anorexics were more preoccupied with
  eating and less with school-related issues and
  death.
• Finally, another article by Fox, Ward and
  ORourke (2006) examined a pro-anorexia site
  (Anagrrl) and discussed the implications of
  normalizing eating disordered behaviors,
  particularly the use of weight-loss
  pharmaceuticals by already-underweight
  individuals.

5
Why is this different from previous research?

• Not just an open forum? intimate diaries.
• Themes not just data or overall role of site,
  but also the role of noters (responses to the
  postings) as well as the interaction sphere
  (feedback, support, discussion, personalized
  responses).
• Explores the positive effects of pro-recovery
  sites and implications with regard to therapy and
  future study.

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Open Diary Purpose

• 1) To see how diarists present themselves and
  their eating disorder to the community
  (pictures?, language?, pose questions?)

• 2) To see how noters (respondents) interact with
  the diarists. Are they supportive of the eating
  disorder or recovery? Are there certain
  characteristics that collect more support?

7
Method

• Open diary website
• Eating Disorders and Body Image diary circle
• Random sample
• 10 diary entries
• Coding system

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• Diarist Rachel
• Diary Title ocdmovieaddict
• Age 19
• Sex F
• State New York
• Stats
• Height 56
• Current Weight 115
• Starting Weight 120
• Short Term Goal 115
• Long Term Goal 110
• Self diagnosis anorexic, now more bulimic
• Medical diagnosis anorexic with bulimic
  tendencies
• Date started diary 7/30/05
• Latest entry date 4/3/06
• of total entries 132
• Entry content (first, last)
• First- Wants to lose weight and eat less, but
  cant urges to eat horrible things and gives
  in doesnt have willpower wants to lose weight
  before goes back to school asks for suggestions
  exercises 3x/week crunches and light weight
  lifting every night
• Last- Went for psych evaluation forced to go
  (not voluntarily) said anorexic with bulimic
  tendencies gave her options- see a
  doctor/nutritionist/therapist, go on meds plans
  to liquid fast wants to binge later

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Circle Members General

• 2,486 members
• 56 males
• Age
• - Average Late teens, early 20s
• - Youngest 13
• - Oldest 49
• Location
• - Non-US members Australia, Germany, Scotland,
  UK, Canada
• - United States Illinois, Michigan, California,
  Tennessee, Pennsylvania, New York, New Jersey,
  Rhode Island, Wisconsin, North Carolina, etc.

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Circle Members This Study

• Female
• Age
• - Average 19.4
• - Youngest 17
• - Oldest 23
• Location
• - 2 non-US members (UK, Canada)
• - United States- Georgia, New York, New Mexico,
  North Carolina, Wisconsin

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Circle Members

• Names
• - needanaback
• - chubbers86
• - aspiring_qu_tee
• Diary Titles
• - How much is enough?
• - Needlovemorethanever

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BMI
15
BMI Results

• Underweight
• Normal weight 18.5-24.9
• Overweight 25-29.9
• Current underweight BMI- 2 of 10
• Desired underweight BMI- 7 of 10
• Average current BMI- 21.3
• Average desired BMI- 17.5

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Diarists- diary content

• Rules
• - 8/10 set up rules in first diary entry
• - 10/10 set up rules in at least one diary entry
• - Examples exercise 3x/week, restrict and no
  more than 500 cal/day of only liquids, lose 40
  lbs. before school, eat less than 300 cal/day

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Example- (23 year-old female)- first diary entry

• I want to remember these for the tough days.
• 1. NO weighing myself (i'll go psycho)
• 2. 6 glasses of water a day
• 3. No french fries until May 1
• 4. Sweets only every other day, NO chocolate
  until May 1.
• 5. No eating after 10 pm
• 6. no donuts, candybars, etc.
• 7. No taking off my shirt for my boyfriend before
  May 1
• 8. If i can't fit in my old pants May 1, then I'm
  not buying that new gecko.

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Example (21 year-old female)

• Food
•  
• you must follow your meal plan or stay within
  your calorie range everyday! if you stay on your
  plan and eat within your daily range of calories
  give yourself 2 points. If you go over, but not
  by much, 1 point. if you have a bad day 0 points.
  
• Water
•  
• if you have 64, 2 points. 32-64 is 1 point, and
  less than 32 is 0. any decaffeinated beverage
  with 0 calories counts as water, but you can only
  use stuff other than actual water for 24 ounces
  of your daily total. just think of how great your
  skin is going to look after all that water.
•  
• Exercise
•  
• if you work out for 30 minutes or more, 2 points.
  20-29 minutes, 1 point. less than 20 minutes, 0
  points. its unrealistic to expect us to work out
  everyday, so you get a "get out of exercise free"
  card to use once a week.
•  
• if you eat a little extra food, you can exercise
  extra to make up for the food points. 30 minutes
  for every 150 calories. you have to decide if its
  worth it.

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Themes

• Dissatisfaction (I have to fix all of me, not
  just the fat)
• External markers/rationalization (school, summer,
  boyfriend)
• - Article from class about spring break
• Rules and failure consequences- fatalistic
  thinking
• How present selves?
• In a way I feel my mind has had an eating
  disorder for years, my body just doesnt always
  show it

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Thinspiration (Thinspo)
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• Diarist
• Diary title
• Age
• Sex
• State
• Stats
• Height
• Current Weight
• Starting Weight
• Short Term Goal
• Long Term Goal
• Self diagnosis
• Medical diagnosis
• Date started diary
• Latest entry date
• of total entries
• Entry content (first, last)
• Goals/Plan to reach goals
• Total of notes from others (noters)

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• Diarist
• Diary title
• Age
• Sex
• State
• Stats
• Height
• Current Weight
• Starting Weight
• Short Term Goal
• Long Term Goal
• Self diagnosis
• Medical diagnosis
• Date started diary
• Latest entry date
• of total entries
• Entry content (first, last)
• Goals/Plan to reach goals
• Total of notes from others (noters)

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Results

• Support 182
• To continue, encourage 61
• Express jealousy 1
• Compare self to diarist/mention own dieting 63
• Tips 14
• Comment on body (height, weight, etc.) 11
• Mentions inspiration (ex. media, thinspiration,
  admiration of others, etc.) 6
• Support with warning (ex. nutrient information,
  be careful, I hope youre okay) 26
• Against (stop it, support to get better,
  criticism) 25
• Neutral 48

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Results (Weight)

• Highest current weight- 185 lbs.
• Lowest current weight- 113 lbs.
• Average current weight- 134
• Highest long-term weight- 145 lbs.
• Lowest long-term weight- 85 lb.s
• Average long-term weight- 110
• Trends?
• - More support and encouragement with highest
  weights (both current and long-term)
• - More against comments and discouragement
  with lower weights

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Results (Weight)

• Encourage more if higher weight
• Reason
• - see as necessary/justified?

• Discourage more if lower weight
• Reason
• - competition?
• - safety/health issue?

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Results (BMI)

• People with the highest BMIs (current and
  desired) tended to get less against notes and
  more support notes.
• People with the lowest BMIs (current and desired)
  tended to get more against notes and less
  support notes

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Results

• of months (as member)- for two members of 1
  month or less, ALL SUPPORT, NO AGAINST

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LiveJournal Purpose and Methods

• Purpose
• I posted a series of questions asking how
  members understood the role of these online diary
  communities in their eating disorders, what are
  the positive and negative aspects, how these
  sites might benefit recovery, how identity is
  shaped/altered their participation, what they
  write about and what they take out of their
  involvement.
• Methods
• In deciding which communities to sample for this
  study, the following was taken into account
• -Activity level of the community frequency of
  posts and presence of current posts.
• -Sample various types of communities
  pro-recovery, pro-eating disorder, bulimia,
  anorexia.
• -Popularity of the community number of members,
  frequency of dialogue.

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LiveJournal Limitations

• Responses were by those who chose to respond,
  thus individuals unwilling to disclose such
  information on the site were not accounted for in
  this study.
• Previous responses could have influenced the
  responses that followed, as users can view
  threads as they evolve.
• Stigma attached to newcomers entering the
  community, particularly newcomers whose
  intentions are researching other members.

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First Response

• You're being rather respectful and I trust your
  intentions are good. Just thought I'd warn you
  though that ED communities usually aren't big
  fans of people doing their studies and research
  on them. Be careful where you post, this can get
  you banned in a number of places, not to mention
  some bitchy comments. You might get some replies,
  but I doubt it'd be enough to conduct a real
  study. You might need a plan B. Good luck.
• -Shellanne, Am_I_Thin.

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Response RateTotal 37 responses
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Questions Posed 4/10

• 1. Would you say that you have an eating
  disorder?
• 2. What role does this community (LiveJournal)
  play in your eating disorder (eg do you come
  here for support of the disorder, support of
  recovery, inspiration, etc)?
• 3. How often do you post to this community?
• 4. What do you typically write about?
• 5. What have you learned through your involvement
  with this community?
• 6. What are the positive and negative effects, in
  your opinion, of this community?
• 7. Any additional comments/questions, please feel
  free.

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Questions Posed 4/18

• 8. In what ways do you feel that your membership
  in online communities devoted to eating disorders
  shapes your identity?
• 9. Do you feel that you take on a specific
  identity in this community that is not
  necessarily the one you exhibit outside of this
  realm?
• 10. Would you say that your online identity is
  more or less your true self?
• 11. If in recovery, do you feel that online
  support is more or less effective than group or
  individual therapy? Why?

37
What role does this community play in your eating
disorder (eg do you come here for support of the
disorder, support of recovery, inspiration, etc)?

• Phew - thats a complicated question. Most days
  LiveJournal has as much to do with my eating
  disorder as what shoes I wear. On bad days I look
  for support of recovery, on really bad days I
  look for support of the disorder and
  inspiration. (BUSST)
• When Ive totally lost it and had a huge
  breakdown/major uncontrollable reckless purging
  episode I usually come here to talk about it.
  Also, having others who are in the same boat as
  me can be kind of comforting. (Bulimia_Support)
• When I am in the middle of a cycle it always
  seems to inspire me to get back into my recovery
  mode. (Bulimia_Support)
• I would say that LJ recovery communities are as
  much as like 50 responsible for my recovery and
  staying in recovery, especially in the beginning.
  I believe this is because my ED was exacerbated
  by PRO eating-disordered information, and
  therefore it only makes sense to me that PRO
  recovery information is what would exacerbate
  recovery. (ED_Recovery)
• I used to come on here a lot more in the early
  days for support, not necessarily looking to copy
  anyone but rather keeping myself occupied and
  away from the kitchen. (Ana_Circle)
• I come here for motivation. I see what others
  are doing and I try to copy them. I like to see
  what the girls who are thinner than me do. I also
  like to talk about my feelings and support
  others. (Ana_Circle)

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What do you typically write about?

• When I did post, I posted my feelings about the
  day, how many calories consumed, my ass looks
  fatter I SWEAR!, things like that. (Ana_Circle)
• Sometimes, I share something good that happened,
  like overcoming an urge, and other times I share
  what Im struggling with or new information I
  come across relevant to the community.
  (ED_Recovery)
• My struggle of the week asking for tips about
  how to deal with the disordered thinking and
  food-related social situations mostly sometimes
  I write about my musing on the joys of recovery,
  too. (ED_Recovery)
• Nothing in particular. Just how Im doing, or if
  Im having a major freak-out, or if I just want
  to talk to people about it who understand.
  (Bulimia_Support)
• About half of the respondents reported commenting
  on posts, rather than posting themselves. These
  were all pro-recovery community members, who
  commented with welcoming messages, support and
  advice.

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In what ways would you say that your membership
in online communities devoted to eating disorders
shapes your identity?

• It doesnt so much shape your identity as help
  you through something in your life. In fact, I
  wouldnt say that it shapes your identity at
  all- so many people look and say, oh, thats the
  anorexic girl. No, thats not the anorexic
  girl, thats the girl that you called fat to a
  point that she took CONTROL of it, and theres
  much more to her than an eating disorder. She has
  a personality and a life and a family and even
  friends. Shocking, I know. (Am_I_Thin)
• It makes you feel like youre part of something
  bigger than yourself, and cuts down on the
  isolation many people have often felt when
  theyve been faced with the reality of a
  situation. However, at the same time, it also
  becomes a pissing contest in which people who
  arent really ready to recover often see the way
  other people respond to the illnesses and try to
  out-sick them. (BUSST)
• I think the eating disorder has shaped my
  identity. I dont think the communities have
  shaped my identity in any way whatsoever.
  (Individual Account)

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Recovery?

• If not in recovery, what is your opinion on how
  these communities affect your eating disorder? Is
  it possible to voice your true feelings in
  situations outside of this community?
• They feed into my eating disorder and i love
  every second of it. its a support, its a safety
  net, its like... im feeling down and like i cant
  do it- i come here and i get inspired to keep
  going. (Ana_Circle)
• Communities allow you talk about how you
  think/feel w/o someone telling you you are crazy.
  WE are not stupid, we know that an ed is not a
  normal/healthy thing but that doesnt mean we
  want to stop. In regular life people dont
  understand it so you need someone to talk to
  about it, someone who understands. People in the
  communities dont encourage people to keep their
  eating disorders or to recover. They just listen,
  and relate, offer advice whether how to keep
  your ed or how to get over it. (Kaye)
• It's far and away less effective than any other
  method I've seen. With the anonymity of the
  online community comes a sense of power among the
  members. They don't have to be there, so
  they get to define what they think is
  "support."I've also seen communities who stated
  that they were not pro-ED, but encouraged
  "thinspiration" and technique advice. (BUSST)

• If in recovery, do you feel that online support
  is more or less effective than group or
  individual therapy? Why?
• At one point I was in recovery and online
  support is what made me relapse. i guess i got
  the wrong support though. it is good if you find
  the right kind. def. better than group therapy
  just cuz you know its always there but you
  always wanna have an individual therapist if you
  wanna stay in recovery. (Ana_Circle)
• I think it is better to have group and
  individual therapy because in group therapy you
  actually see the people and it makes it more
  real. And in individual you can tell them
  anything because you no they are there to help
  you, help you find out what is causing your
  eating disorder and will help you get through
  it.... I think online support is there for when
  you don't have your therapy that day and you just
  need a little push to get your mind back in the
  right place and to vent when no one will listen.
  
• (ED_Recovery Bulimia_Support)

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Further Study

• More extensive study more diaries, more entry
  analysis, different journal sites compare
  pro-ana vs. recovery sites case studies.
• Male vs. Female use of sites?
• Cant stop sites, so how can this be addressed?
  Brought up in treatment? Implications of this?
• Is this unique to eating disorders? How does this
  bring light to the differences between eating
  disorders and other physical/psychological
  illnesses? Other illnesses-support sites dont
  promote the disease. How can this knowledge be
  used to understand eating disorders?
• Given the convenient, accessible, inexpensive and
  anonymous nature of the Internet, might these
  online communities potentially be moderated by
  therapists in order to create a therapeutic
  environment?