Dealing with Stigma

by Teresa Lynch

It started off, as many graduate student research projects do, as a class proposal.  The paper (“Communicating Stigma: The Pro-Ana Paradox”) that would ultimately go on to be published in the journal Health Communication and featured on Time, Jezebel, USA Today, and IU’s online research forum  grew from an idea that Ph.D. student Daphna Yeshua-Katz had during Nicole Martins’ Media and the Body course in Fall 2010.  It was during that course that Daphna became aware of a group called “pro-ana” bloggers.  The spectrum of opinion within this online community for people with eating disorders ranges from those who claim that anorexia is a lifestyle choice and not a disorder to those who seek to provide a non-judgmental environment, including support for those who seek medical treatment.  What was so fascinating to Daphna was that this community, despite its controversial nature, was shrouded largely in mystery.  “This community was creating an outrage in the public sphere, but we really know almost nothing about the motivations of [pro-ana bloggers] to become a part of it.”  Despite the widely shared negative view of pro-ana blogs, there seemed to be some provocative element in their existence.

Nicole Martins (left) and Daphna Yeshua-Katz. Photo courtesy of Nic Matthews

So, Daphna, with support and guidance from Nicole, set out to develop her study.  She conducted a series of in-depth interviews with pro-ana bloggers that contribute not only to the growing literature on how people communicate with others regarding their eating disorders, but also more broadly to the research on stigmatized illnesses.  But, the flurry of press reports on her work came at a potential cost.  As a former journalist, Daphna understands the editorial process well.  She shared with me that during her days as a journalist, her stomach would ache at the worry over how her words would be skewed after she submitted them to the editor.  Outside of the academic realm, writers often see their words changed without any opportunity for final approval, a fact that Daphna knows all too well.  Even so, being misrepresented or misquoted is a difficult thing to swallow, especially since she now finds herself in a discipline where 94% confidence just isn’t good enough and an academic culture where fine points in scholarly research hold much import. That made the interview she had with a writer from Time magazine all the better.  Not only was she well versed in the literature about stigmatization of drug-addicts, but she also knew about Erving Goffman’s work on social stigma.  Needless to say, the interview went very well.

But in today’s Internet age, the most destructive commentary often comes in the way of … well, comments.  We all have seen such comments, especially the readers’ comments at the bottom of the article you just can’t ignore no matter how hard you try.  Now consider a situation where your research is the basis of the article and you are unable to hold your resolve that you will not read readers’ comments.  For Daphna, that dissolution of resolve yielded a happy experience.  What she found there, made her feel good about the attention her research had received in the popular press.  Many of the comments were from pro-ana bloggers or former members of pro-ana online communities reaffirming the positive place pro-ana blogs hold for them.  In fact, after the study was published in the journal, a blogger who had participated in the study contacted Daphna by email to thank her for doing the research.  She went on to say that participating in Daphna’s study had made her consider her condition and she is now moving toward recovery.

Daphna and Nicole’s journey in conceptualizing, performing, and ultimately publishing the collaborative study was in some ways a roller coaster.  Daphna says that she feels more confident now in her research and in her overall desire to study stigmatized health issues and social media.  She says that there is much more work remains to be done with the pro-ana community with the next step possibly being a quantitative study.  But, for a community so sensitive to stigmatization, gaining the necessary access to perform that research will be difficult.  After this experience, Daphna feels deeply connected to the research on the pro-ana community, as she has met some of its members and had glimpses into their struggles to cope with a stigmatized mental disorder.

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