More about Pro Ana and about Project Shapeshift
The Fallacy Of Censorship: Why I Oppose Blocking
Pro-Ana, Thinspiration Tags On Social Media Sites
The ProAna Movement remains an issue fraught with a great degree of controversy. Extensive, virulent opposition and widespread censorship efforts have steadily progressed since these unconventional ED Support Communities became known to mainstream society in 2001. Most of the original communities have been destroyed altogether, and for the few which remain, the environment online has become increasingly hostile. The big question is, are these efforts to obliterate "potentially triggering material" -- the much-touted catch phrase of pro-censorship parties -- working to combat the "problem," as they see it? The answer is a resounding "NO." I am far from surprised by this.
When confronted with the silence-versus-tolerance dilemma, the majority of social networking platforms have responded by banning and censoring eating-disordered individuals who do not conform to the status quo: churning out conventional recovery rhetoric and ED-neutral platitudes are good and right; expressing yourself fully and openly is bad and wrong, for you may potentially 'trigger' someone else.
The media hype-driven; ED treatment center-backed approach of censure, all in the name of minimizing exposure of allegedly 'at-risk' populations, is not only futile (persecuted, oppressed individuals will relocate and form their own communities -- this is where ProAna came from in the first place), it can be supremely damaging. Facebook, AOL, Yahoo, Tumblr, Instagram, Pinterest and similar communities have banned content and censored all but the most benign of discussion regarding the ED experience, and the current witch hunt du jour is Twitter.
Regardless of which side of this issue one stands, some facts remain abundantly clear: ED's have extremely poor treatment accessibility and efficacy, resulting in poor prognostic indicators and outcomes. We do not have all the answers, and while I do understand the motivation behind both sides of the argument [for and against censorship], I ultimately find the pro-censorship approach extremely damaging and unproductive in terms of supporting those Living with Eating Disorders. Intolerant opposition to any coping strategy other than what mainstream society dictates is horrifically oppressive, silencing and inappropriate in my opinion. It is difficult enough for those Living with an illness which is experienced beneath a veil of perpetual shame and inadequacy and tends to lead to silence and isolation. When these people dare to reach out; to connect; to come forward and speak of their plight, how is it constructive to place constraints which ultimately force them to present a lie on the surface, or alienate them altogether? This is the reason my research began in the first place, and I can confidently state that the alleged risk-to-benefit ratio leans far on the beneficial side with respect to Alternative-Approach ED Support Communities.
When confronted with the silence-versus-tolerance dilemma, the majority of social networking platforms have responded by banning and censoring eating-disordered individuals who do not conform to the status quo: churning out conventional recovery rhetoric and ED-neutral platitudes are good and right; expressing yourself fully and openly is bad and wrong, for you may potentially 'trigger' someone else.
The media hype-driven; ED treatment center-backed approach of censure, all in the name of minimizing exposure of allegedly 'at-risk' populations, is not only futile (persecuted, oppressed individuals will relocate and form their own communities -- this is where ProAna came from in the first place), it can be supremely damaging. Facebook, AOL, Yahoo, Tumblr, Instagram, Pinterest and similar communities have banned content and censored all but the most benign of discussion regarding the ED experience, and the current witch hunt du jour is Twitter.
Regardless of which side of this issue one stands, some facts remain abundantly clear: ED's have extremely poor treatment accessibility and efficacy, resulting in poor prognostic indicators and outcomes. We do not have all the answers, and while I do understand the motivation behind both sides of the argument [for and against censorship], I ultimately find the pro-censorship approach extremely damaging and unproductive in terms of supporting those Living with Eating Disorders. Intolerant opposition to any coping strategy other than what mainstream society dictates is horrifically oppressive, silencing and inappropriate in my opinion. It is difficult enough for those Living with an illness which is experienced beneath a veil of perpetual shame and inadequacy and tends to lead to silence and isolation. When these people dare to reach out; to connect; to come forward and speak of their plight, how is it constructive to place constraints which ultimately force them to present a lie on the surface, or alienate them altogether? This is the reason my research began in the first place, and I can confidently state that the alleged risk-to-benefit ratio leans far on the beneficial side with respect to Alternative-Approach ED Support Communities.
New Groundbreaking Study:
~*ProAna Sites HELP Those With ED's!*~
8.20.12: It is with great joy that I bring this news: An Indiana University study published this month in Health Communication shows that participation in a ProAna Community actually *benefits* participants! Those of us who are veterans of the Movement know this well, but this is a cause for celebration: At last, beneath the detritus of sensationalist media hype, the Voices of the Movement have been heard: We are here to support one another in Living with ED's -- NOT to recruit, promote, deny or glorify pathology!
IU researchers interview pro-anorexic bloggers for groundbreaking new study
Primary motivation of many was to seek social support and deal with stigma, not promote a 'lifestyle'
FOR IMMEDIATE RELEASE
Aug. 20, 2012
BLOOMINGTON, Ind. -- A groundbreaking new research study from Indiana University suggests there may be benefits to the controversial activities of "pro-ana" bloggers, the online community for people with eating disorders.
Most of the 33 bloggers from seven countries interviewed for the study, which has just been published in the journal Health Communication, said their writing activities provide a way to express themselves without judgment, which the authors believe can be crucial to their treatment.
"We don't know what are the effects of participating in this community on health," said Daphna Yeshua-Katz, a doctoral student in telecommunications in the IU College of Arts and Sciences. "But we do know that the current therapy for eating disorders is not effective."
"These communities are providing support, albeit supporting an illness that may result in someone's death," added Nicole Martins, an assistant professor of telecommunications at IU. "But until they're ready to go and seek recovery on their own terms, this might actually be a way of prolonging their life, so that they are mentally ready to tackle their recovery process.
"From the outside looking in, this looks like a really disturbing community, but I think that the fact that these women are able to find support from one another and find a place where someone understands what they're going through is a really good thing," Martins added.
They acknowledged that the study findings are different from media coverage and other research about the pro-ana community.
The National Association of Anorexia Nervosa and Associated Disorders in 2010 reported that eating disorders affect more than 11 million people in the United States alone. Anorexics lose between 15 and 60 percent of their body weight and are susceptible to osteoporosis and heart ailments that can lead to death. It is viewed as a mental illness.
Little is known about the "pro-ana" online community because of the closeted and secretive nature of its members. The IU study is believed to be the first one to focus on interviews with the bloggers. Previous research in this area has centered on content analysis of what these people, mostly women with the disorders, are writing.
The researchers reached out to 300 bloggers and received a 10 percent response -- a statistically significant response. Both men and women with eating disorders were approached, but only women participated. Participants ranged in age from 15 to 33. Most were attending high school or college, and all lived in countries where anorexia is most common. About two-thirds lived in the United States.
Yeshua-Katz said many bloggers express themselves through song lyrics, music and photos that they call "thinspiration," which are very controversial. Complaints from eating disorder support groups have led Internet service providers to shut down pro-anorexia websites, but the site administrators and bloggers have remained resilient.
"They use the blogs to look for support and understanding, but at the same time, the content they display is something that for us -- people who are not sick -- is very disturbing," she said. "Studies show that people with eating disorders are stigmatized. Therefore these bloggers are looking for a place to vent out and express themselves without judgment of others."
Yeshua-Katz, the lead author on the paper, frequently researches how marginalized people are mediating their stigma through social media.
"The results revealed that the answers to why individuals are attracted to pro-ana sites have little to do with the need to share a broad philosophy or outlook and may stem from the desire simply to belong to a safe community of individuals with similar experiences," the researchers wrote in the study.
Their primary motivation for blogging was to seek social support. Most bloggers started publishing because they did not want to feel alone and were interested in finding others like themselves. They described interactions with family and friends as stressful "because they lack the understanding of their situation, while online they receive support constituted with sympathy, understanding and encouragement."
About half of the bloggers also said self-expression and the need to cope with social stigmas were other motives. When asked to give an example of how blogging might help them cope with stigma, six respondents answered that blogging offers them a different reality.
The majority of the sample reported that blogging about their illness improves their mood, and they found relief through their writing. The support they found was seen as unconditional.
"They receive encouragement when they post about their weight loss success and comfort in bloggers' comments when they fail in such efforts. Moreover, when a user wants to stop self-harm behavior or go into recovery, the community supports her choice too," the researchers explained.
"Our participants perceived the support within their ED community to be stronger than the support they received for their so-called strong ties to their offline life," they said, adding that eight bloggers reported meeting other community members in person.
In medical literature, a patient's decision to find support is seen as a good predictor of compliance and treatment leading to a cure.
Nearly 20 percent of the women interviewed for the study indicated that they were in the process of going through recovery from the illness. One respondent, who was in recovery, said that her blogging activities "gave her the skills to talk about her illness in the recovery process."
Of the 33 women interviewed, 27 defined their eating disorder as a mental illness and six said it was a coping mechanism. Contrary to previous research based on content analysis of the blogs, only three of those interviewed called anorexia a "lifestyle."
"In other words, people living with eating disorders are not purposely making unhealthy or health-compromising decisions. They are trying to find the best way they can to live with this disorder," the researchers wrote.
"I think that's encouraging that a majority don't look at it as a lifestyle," Martins said. "The silver lining is there that if they realize that it's a disease, then maybe they'll eventually seek help for it. But right now this is how they're coping."
While most studies make the claim that pro-ana websites promote and maintain anorexia by sharing tips for weight loss and concealing the disorder, only five bloggers mentioned this as a reason to start their blogs.
"Participants in this research, except for shutting down their blogs, did actively engage in ways to warn their audience about the content and ignored or blocked requests for tips and tricks from what they nicknamed 'wannarexics' -- young teenagers who want to become anorexic," the paper said.
Yeshua-Katz and Martins hope their research provides the medical community with greater understanding of the people they are treating. One of the bloggers they spoke to expressed difficulty finding "recovery" blogs and still follows the pro-ana blogs because "it's hard to totally abandon them."
"For example, they were missing a 24-hour support place," Yeshua-Katz said. "We need to see what about (the pro-ana blogs) is drawing people into the community and design blogs for recovery that offer the same kind of useful information so the recovery will work.
"By knowing what they're doing in those blogs, we might be able to find better ways to provide online support," she added.
The paper also highlights a major paradox for the pro-ana community. "They go online to vent out and to relieve stress. But then by having their blog, by having their secret life, it adds another level of stress to their life," Yeshua-Katz said. "There is an information game going on, and it's very intense and stressful because your stigma is unknown."
Ten of the pro-ana bloggers actually produce two blogs -- a "healthy" one for family members and friends and another about their eating disorders.
"The fact that disordered eating is such a solitary and isolating experience makes the Internet an ideal place for offering support and advice," the researchers wrote. "The pro-ana community is worth studying in its own right as a social space that affords a style of interaction that would be highly unlikely to be visible in the offline or pre-Internet environment."
IU researchers interview pro-anorexic bloggers for groundbreaking new study
Primary motivation of many was to seek social support and deal with stigma, not promote a 'lifestyle'
FOR IMMEDIATE RELEASE
Aug. 20, 2012
BLOOMINGTON, Ind. -- A groundbreaking new research study from Indiana University suggests there may be benefits to the controversial activities of "pro-ana" bloggers, the online community for people with eating disorders.
Most of the 33 bloggers from seven countries interviewed for the study, which has just been published in the journal Health Communication, said their writing activities provide a way to express themselves without judgment, which the authors believe can be crucial to their treatment.
"We don't know what are the effects of participating in this community on health," said Daphna Yeshua-Katz, a doctoral student in telecommunications in the IU College of Arts and Sciences. "But we do know that the current therapy for eating disorders is not effective."
"These communities are providing support, albeit supporting an illness that may result in someone's death," added Nicole Martins, an assistant professor of telecommunications at IU. "But until they're ready to go and seek recovery on their own terms, this might actually be a way of prolonging their life, so that they are mentally ready to tackle their recovery process.
"From the outside looking in, this looks like a really disturbing community, but I think that the fact that these women are able to find support from one another and find a place where someone understands what they're going through is a really good thing," Martins added.
They acknowledged that the study findings are different from media coverage and other research about the pro-ana community.
The National Association of Anorexia Nervosa and Associated Disorders in 2010 reported that eating disorders affect more than 11 million people in the United States alone. Anorexics lose between 15 and 60 percent of their body weight and are susceptible to osteoporosis and heart ailments that can lead to death. It is viewed as a mental illness.
Little is known about the "pro-ana" online community because of the closeted and secretive nature of its members. The IU study is believed to be the first one to focus on interviews with the bloggers. Previous research in this area has centered on content analysis of what these people, mostly women with the disorders, are writing.
The researchers reached out to 300 bloggers and received a 10 percent response -- a statistically significant response. Both men and women with eating disorders were approached, but only women participated. Participants ranged in age from 15 to 33. Most were attending high school or college, and all lived in countries where anorexia is most common. About two-thirds lived in the United States.
Yeshua-Katz said many bloggers express themselves through song lyrics, music and photos that they call "thinspiration," which are very controversial. Complaints from eating disorder support groups have led Internet service providers to shut down pro-anorexia websites, but the site administrators and bloggers have remained resilient.
"They use the blogs to look for support and understanding, but at the same time, the content they display is something that for us -- people who are not sick -- is very disturbing," she said. "Studies show that people with eating disorders are stigmatized. Therefore these bloggers are looking for a place to vent out and express themselves without judgment of others."
Yeshua-Katz, the lead author on the paper, frequently researches how marginalized people are mediating their stigma through social media.
"The results revealed that the answers to why individuals are attracted to pro-ana sites have little to do with the need to share a broad philosophy or outlook and may stem from the desire simply to belong to a safe community of individuals with similar experiences," the researchers wrote in the study.
Their primary motivation for blogging was to seek social support. Most bloggers started publishing because they did not want to feel alone and were interested in finding others like themselves. They described interactions with family and friends as stressful "because they lack the understanding of their situation, while online they receive support constituted with sympathy, understanding and encouragement."
About half of the bloggers also said self-expression and the need to cope with social stigmas were other motives. When asked to give an example of how blogging might help them cope with stigma, six respondents answered that blogging offers them a different reality.
The majority of the sample reported that blogging about their illness improves their mood, and they found relief through their writing. The support they found was seen as unconditional.
"They receive encouragement when they post about their weight loss success and comfort in bloggers' comments when they fail in such efforts. Moreover, when a user wants to stop self-harm behavior or go into recovery, the community supports her choice too," the researchers explained.
"Our participants perceived the support within their ED community to be stronger than the support they received for their so-called strong ties to their offline life," they said, adding that eight bloggers reported meeting other community members in person.
In medical literature, a patient's decision to find support is seen as a good predictor of compliance and treatment leading to a cure.
Nearly 20 percent of the women interviewed for the study indicated that they were in the process of going through recovery from the illness. One respondent, who was in recovery, said that her blogging activities "gave her the skills to talk about her illness in the recovery process."
Of the 33 women interviewed, 27 defined their eating disorder as a mental illness and six said it was a coping mechanism. Contrary to previous research based on content analysis of the blogs, only three of those interviewed called anorexia a "lifestyle."
"In other words, people living with eating disorders are not purposely making unhealthy or health-compromising decisions. They are trying to find the best way they can to live with this disorder," the researchers wrote.
"I think that's encouraging that a majority don't look at it as a lifestyle," Martins said. "The silver lining is there that if they realize that it's a disease, then maybe they'll eventually seek help for it. But right now this is how they're coping."
While most studies make the claim that pro-ana websites promote and maintain anorexia by sharing tips for weight loss and concealing the disorder, only five bloggers mentioned this as a reason to start their blogs.
"Participants in this research, except for shutting down their blogs, did actively engage in ways to warn their audience about the content and ignored or blocked requests for tips and tricks from what they nicknamed 'wannarexics' -- young teenagers who want to become anorexic," the paper said.
Yeshua-Katz and Martins hope their research provides the medical community with greater understanding of the people they are treating. One of the bloggers they spoke to expressed difficulty finding "recovery" blogs and still follows the pro-ana blogs because "it's hard to totally abandon them."
"For example, they were missing a 24-hour support place," Yeshua-Katz said. "We need to see what about (the pro-ana blogs) is drawing people into the community and design blogs for recovery that offer the same kind of useful information so the recovery will work.
"By knowing what they're doing in those blogs, we might be able to find better ways to provide online support," she added.
The paper also highlights a major paradox for the pro-ana community. "They go online to vent out and to relieve stress. But then by having their blog, by having their secret life, it adds another level of stress to their life," Yeshua-Katz said. "There is an information game going on, and it's very intense and stressful because your stigma is unknown."
Ten of the pro-ana bloggers actually produce two blogs -- a "healthy" one for family members and friends and another about their eating disorders.
"The fact that disordered eating is such a solitary and isolating experience makes the Internet an ideal place for offering support and advice," the researchers wrote. "The pro-ana community is worth studying in its own right as a social space that affords a style of interaction that would be highly unlikely to be visible in the offline or pre-Internet environment."
This news isn't shocking to those of us who have Lived this Truth since the First Wave began in the mid-late 1990's. What's new -- and so very positive for us -- is that this is a formal study MORE than just content analysis from an outside perspective. This is the first study in the US to look at the positive side of Pro-Ana. France preceded us with the ANAMIA Study, a comprehensive European study looking at Pro-Ana sites from the perspective of the participants' experiences. This news is a Dream Realized for me, and I cannot be more blessed to see this information come to society at large. My fervent hope is that this study will be the gateway to more funding and research in order to protect and understand (or at the very least, tolerate) the presence of the Pro-Ana Movement on the Internet.
I've been campaigning for this Truth for over a decade, and it is so beautiful to see it coming to light ahead of the grotesque sensationalist media which has long-demonized the Pro-Ana Movement as a whole. Myself and the Project Shapeshift Community, as well as a consortium of other Pro-Ana bloggers and Administrators, are celebrating this triumph!
I am infinitely grateful to the IU Researchers for investigating this issue, and I look forward with great anticipation to see a more broad societal realization that ED Sufferers NEED AND DESERVE to pursue ANY path, free of judgment, which helps them cope and survive best.
It's a good day for us, Precious Ones! <3
Much love and BE WELL!
~A.G.E.
I've been campaigning for this Truth for over a decade, and it is so beautiful to see it coming to light ahead of the grotesque sensationalist media which has long-demonized the Pro-Ana Movement as a whole. Myself and the Project Shapeshift Community, as well as a consortium of other Pro-Ana bloggers and Administrators, are celebrating this triumph!
I am infinitely grateful to the IU Researchers for investigating this issue, and I look forward with great anticipation to see a more broad societal realization that ED Sufferers NEED AND DESERVE to pursue ANY path, free of judgment, which helps them cope and survive best.
It's a good day for us, Precious Ones! <3
Much love and BE WELL!
~A.G.E.