In a generation that has accepted technology and specifically the internet as a central aspect of their lives, the way we connect with others has inevitably changed along with it. A decade ago, I recall many people in my life were wary about making purchases online, making friends, online dating, and the like. Of course, such things are still met with varying degrees of apprehension, but one major thing has changed: almost everyone is online in some capacity. While online communities have existed for decades in the form of chat rooms and forums, one no longer has to seek them out to engage with other users online. The rise and centralizing of social media has positioned the internet not just as a space to do business, spread news, or chat in forums designated for conversations with like-minded individuals, but for the exchange of information and ideas quickly. This has sweeping implications for various forms of activism. After all, the Egyptian Revolution of 2011, which saw the overthrow of Hosni Mubarak, may not have even happened if it wasn’t for social media and Twitter in particular.

Not all activism facilitated by the internet will result in sweeping political revolutions, though. If we understand activism to be simply strong advocacy or support of a particular issue, then it can take many forms and arguably be apolitical even as it challenges the status quo. Similar to the way that mechanical printing presses revolutionized communication on a mass scale during the Renaissance and beyond, the ease by which someone can create a website, blog, engage others in social media, or even self-publish books has broken down further barriers to spreading ideas and sharing stories quickly – often at very little or zero monetary cost to the individual.

Perhaps more importantly, the rise of social media coupled with unprecedented connectedness to the internet via smartphones has by and large attached identity to content. The personal is political, and the personal is now online.

Damage Control

There are, of course, a plethora of topics and issues that are worth discussing in this context. However, the focus of this article will be on one which I have the most personal experience with: eating disorders. Activism surrounding eating disorders is arguably in a unique position with regard to the personal being online due to the fact that it is both a burgeoning field and a topic of ever-increasing importance with regard to public health. The greater conversation about eating disorders as a public health issue is contained within what I refer to as recovery culture and includes blogs, memoirs, books written by professionals for public consumption, outreach events, public service announcements, and the like. Not all of this content is necessarily online, but the internet has become a central point of discussion and organizing.

Recovery culture is also a unique and interesting space due to its capacity for (and desperate need of) intersectionality, which is undeniably bolstered by the internet. Already a subject which is grossly misunderstood in most levels of society, from popular culture to the insurance industry to medical professions, it’s difficult enough for individuals who fit the stereotype(s) for the ‘type of person’ one might expect to have (or, at least, not be surprised to learn suffers from) an eating disorder. This profile is generally that of a middle class, white, cisgender female. Indeed, recovery culture reflects these norms, as most publications only use diverse pronouns when making a conscious effort to do so while common dialogues are full of gendered language.

This is a phenomenon that existed prior to the existence of a widespread online recovery culture, so it’s no surprise that as writers and activists moved into digital spaces, these problems in representation of the eating disorder population were brought with them. The problem is further exacerbated by the fact that much of the time and energy of those involved with creating recovery culture content is often spent pushing back against and resisting popular narratives about bodies put forth by the multi-billion dollar beauty and diet industries which profit quite directly off the insecurities of consumers. As that narrative shifts further into an anti-fat bias coupled with anti-obesity campaigns which rarely acknowledge the existence of mental and behavioral health components or the realities and existence of Binge Eating Disorder (BED), we find ourselves in a position of running damage control first and attempting to advocate for eating disorders directly at a close second. Thankfully, the two can often be done simultaneously.

Strangers or acquaintances who may have otherwise never met or never discussed personal matters such as mental health find conversations facilitated and topics broached through social media outreach.

As previously stated, in a Web 2.0 world dominated by social media (but also generally speaking), activism can take many forms. A point of discussion must be the perception of said activism by the people engaging in it. While the internet does a great job of connecting people with mutual interests and spreading ideas quickly, there is arguably a complacency that accompanies activism when it begins and ends online. The irony of such a statement being made in a digital journal is not lost on me.

Conversely, The National Eating Disorders Association (NEDA) has had great success in contributing to recovery culture the widespread recognition of Eating Disorder Awareness Week during the last week of February, with much of the outreach effort occurring in digital spaces. There is always an annual theme for each week; two of which have particularly resonated with me were “Everybody Knows Somebody” and, more recently, 2014’s “I Had No Idea!”.

In a recent article on CNN, author Claire Mysko (who oversees NEDA’s youth outreach program) discussed the impact of social media on eating disorder behavior, citing several studies where use of social media increased body dissatisfaction and the problematic ways in which certain hashtags are used across the internet to connect users to media which perpetuates certain body ideals or promote disordered eating behavior. Mysko rightly notes, though, that social media does not cause these attitudes or behaviors – as they are complex problems stemming from a combination of environmental, genetic, and psychological factors – but merely amplifies that which is already there and spreads that information faster and more efficiently. Significantly, though, the hashtag used by NEDA for the 2014 awareness week campaign was used 23 million times, contributing to increased phone calls to NEDA’s help lines and far higher than average web site traffic.

Like most tools, the internet’s impact on others depends largely on how it is wielded. In our state of constant connectedness, community engagement expands in the broadest sense to include whoever happens to be online. Strangers or acquaintances who may have otherwise never met or never discussed personal matters such as mental health find conversations facilitated and topics broached through social media outreach. Two of the individuals who provided the most significant social support to me in my recovery from anorexia are people I initially became acquainted with through the internet. One of them has remained a close friend for years and we have visited in person many times over the past decade; the other, I never had the pleasure of meeting face to face.

The fact that such social support is so often dependent on technology is very telling. If you have never personally struggled with an eating disorder, it can be difficult to provide adequate social support to someone in recovery. As stated in the introduction, the internet has already functioned for decades to connect individuals with similar interests or struggles who may have otherwise been isolated from one another. However, NEDA’s past campaign slogans are also very telling. We thus find ourselves in the odd position of having widespread and successful outreach campaigns from multiple organizations (as well as individuals) but still constantly returning to the baseline issues of reiterating the most basic messages: that eating disorders are serious, that they affect diverse populations, that people do recover from them but also that people are dying from eating disorders in record numbers, and that denial of benefits from insurance companies play a direct role in those deaths.

Secrecy and Shame in a Digital Age

In my experience as an eating disorder activist working on policy reform, community engagement, and as a writer both in blogging and other formats with varying degrees of academia, I have come to see all as equally important. While working on policy changes to better fund research on eating disorders, access to treatment, and public education has the capacity to benefit millions of people, community engagement is also vital due to the amount of misinformation, stigma, and ignorance surrounding the subject.

Looking back at the role that online interactions played in my recovery, it’s hard to imagine where I would be without the internet or if I would be fully recovered at this point in time.

Since eating disorders are on the rise in essentially all demographics, it is more important than ever to be having conversations that position them as the dangerous and often life-threatening problems that they are. This is where the internet and social media have truly enhanced the greater conversation, as evidenced in part by NEDA’s successful online campaigns (of course, there are plenty of other organizations doing successful outreach online, but NEDA’s has been reported on). There is no doubt that chat rooms and other forms of anonymous online communication have facilitated the connecting of like-minded individuals from all walks of life for decades now. Whether it’s fandom over an obscure comic book or TV show with an underground following, individuals struggling with sexual or gender identity, or eating disorders, the internet connects people who may otherwise be isolated from each other and, when it comes to personal matters, provides a relatively risk-free environment for speaking one’s mind to others without fear of that information becoming known in their personal life. In this context, ‘community engagement’ isn’t limited to the communities in which one physically resides or travels, but with online communities as well. I would consider individuals who help facilitate or actively participate in this engagement for the benefit of others to be engaging in a form of activism, as they are lending their time and personal experience for the benefit of others.

Whether it’s depression, self-harm, substance abuse, or an eating disorder, reaching out to others for help and admitting that there is a problem is often one of the most difficult (and most important) first steps to receiving that help. While actively struggling, it can be difficult to speak to others and to find the right words to explain what exactly is wrong. One of the things I learned in my recovery from anorexia is that a central part of it is learning to advocate for oneself; specifically, learning what you need to manage your recovery and how to ask for it. I often say, poorly articulated needs are usually poorly met needs. Looking back at the role that online interactions played in my recovery, it’s hard to imagine where I would be without the internet or if I would be fully recovered at this point in time. Additionally, it’s worth mentioning that the initial contact I had for my first invitation to ever speak at a conference was over Twitter (with Eating Disorder Recover Support, Inc., a non-profit treatment scholarship fund based in California).

Here, then, is a perfect example of how advocating for others online through one’s own experience with an issue can lead to real change. While in recovery I kept a journal online, and a young woman who moderated a recovery community online followed my writing. We both lived in Virginia, but had never met. It was her who encouraged me to volunteer on Capitol Hill with the Eating Disorders Coalition (EDC), as they were looking for people who had direct, personal experience with eating disorders who could speak to their seriousness and the need for additional policy reforms. The first time we met in person, after being connected online for years, was in a church near the U.S. Senate buildings at a welcome meeting for new volunteers. I was terrified.

That was in 2007, and seven years later (as of this writing) the people I met there and the connections I made have had an indelible impact on my life. I began thinking far more critically about the way eating disorders are regarded in popular culture, the difficulty in obtaining treatment, and the layers of stigma that accompany an eating disorder for an individual who doesn’t fit the mold of the common narrative. Central to this fight is the constructivist nature of normality, the expectations that build up around notions of what is “normal,” and the consequences of certain identities and behaviors being labeled as abnormal simply for being less statistically common.

On the Inside Looking In

Looking at the history of mental health and eating disorders, it’s easy to see how unprecedented levels of connectivity have allowed information to flow further and faster than ever. For example, the overwhelming change in public opinion on issues of gay rights and particularly marriage in a mere decade probably never would have happened so quickly without the internet as an organizing and outreach tool.

While the internet provides the connectivity necessary for non-stereotypical members of the eating disorder population to speak up and join the conversation easily, it will take a conscious effort on the part of those producing and reproducing content and ideas to make sure that there is space made available for those individuals.

In addition to being a pertinent example, the issue of gay rights is also an interesting correlation to diversity in the eating disorder population. Patrick Anderson’s essay, “Anorexia and the ‘Problem’ of Men” explores the history of diagnoses and how the field has typically regarded males as outliers (Anderson 2008). Anderson demonstrates that researchers have historically been unsuccessful at finding large enough samples to study eating disorders in males and have, over the decades, been more inclined to engage in case studies. He found that in these case studies, many of the “risk factors” associated with eating disorders in males were almost identical to the criteria used until the early 1970s to diagnose homosexuality as a mental health disorder (which was removed from the Diagnostic and Statistical Manual of Mental Disorders [DSM] in the fourth edition). I explore this topic and its implications in far greater detail in my own research presentation, The Feminization of Eating Disorders (Wetsel 2014). It’s no wonder, then, that it’s typically and wrongly assumed that eating disorder patients who are male are also homosexuals. Again, we find statistical majorities being used to make sweeping generalizations.

Here, the internet becomes an invaluable tool for outreach, as males find themselves faced with dual layers of stigma: first, that they suffer from an oft-misunderstood mental health problem; and second, that coming forward may raise questions about their sexuality. The ability to find community and resources anonymously and to learn that there are plenty of outspoken boys and men who have suffered (and recovered) from eating disorders is a monumental step forward for recovery culture, as that essentially was not the case roughly a decade ago.

As Claire Mysko said in her article, though, the internet merely amplifies what is already there in terms of cultural awareness, understanding, and baggage. The same is true for those promoting healthy messages within recovery culture, in that the majority of people doing that work are women and those who work professionally with eating disorders treat a female-majority population. While the internet provides the connectivity necessary for non-stereotypical members of the eating disorder population to speak up and join the conversation easily, it will take a conscious effort on the part of those producing and reproducing content and ideas to make sure that there is space made available for those individuals. Far from outliers on a chart, those who find themselves existing outside of the common narrative have nonetheless never been on the outside looking in in terms of their suffering.

Bumper Sticker Activism

In the early days of Facebook, the site was competing with MySpace as both networking sites copied features from one another in an effort to secure the largest user base. Although it’s only been a few years, I wouldn’t be surprised if some people have already forgotten that logging into used to take users to a home page which included their profile (much like MySpace did). The introduction of the ‘News Feed’ (which, to be clear, quite blatantly ripped off the main functionality of Tumblr’s dashboard and, to a lesser extent, Twitter) turned Facebook into a nonstop flow of information about what other users are doing. Whether it’s a link share, a status update, or the fact that some guy you went to high school with ‘liked’ a photograph belonging to someone you don’t even know, the implementation of the News Feed permanently changed the way most people use Facebook and, by extension, the internet.

Much in the way that people slap political slogans, feel-good phrases, or the like onto the bumpers of their cars, the ability to both create images primarily consisting of words or phrases and then share them quickly means that most people’s News Feeds are full of images with phrases and slogans that others have shared.

That’s because if we’re to discuss activism on the internet and the role of social media, we must acknowledge the way Facebook is slowly being integrated into every other website. For example, if you’re logged into Facebook during a web browsing session and access CNN, the CNN home page wants to show you articles on their site that your Facebook friends have read, ‘liked’, or commented on. Huffington Post now requires a Facebook account to register an account with their site, which in turn requires you give your phone number to Facebook to ‘verify’ that you are who you say you are.

Returning to the News Feed, Facebook very clearly wants information and posts to spread and be visible to multiple users, as well as easily shareable. A look at George Takei’s Facebook page, for example, demonstrates this phenomenon and just how many people use these features; all that’s needed for something to be viral is for a well-known user to post it.

This is where we enter what I usually refer to as ‘bumper sticker activism.’ Much in the way that people slap political slogans, feel-good phrases, or the like onto the bumpers of their cars, the ability to both create images primarily consisting of words or phrases and then share them quickly means that most people’s News Feeds are full of images with phrases and slogans that others have shared. While certainly not a trend that’s limited to Facebook, in my experience across various social networking sites, it does seem to be most prevalent there. With this trend comes a new form of internet activism which is arguably far more limited than it probably feels to most users, since it often begins and ends online.

To be clear, I don’t think there’s anything wrong with this trend exactly. The quick, viral nature of image shares can enhance campaigns that are trying to engage users, particularly if they direct users to resources, websites, or articles to further educate about a given subject. However, I’m not convinced that bumper stickers on the back of cars have ever persuaded someone to vote for Mitt Romney or recycle more unless they were already inclined to do so. What I mean is that, both on cars and online, they do a great job of preaching to the choir, but I’m uncertain that they are very effective at engaging others for critical thinking or discussion. It’s here that online activism can focus so much on online networks that people run the risk of forgetting about the world and communities outside of the internet.

What it comes down to is that many of us wear our convictions on our sleeve. Or in this case, the back of our cars or our Facebook profiles. The difference is that offline, we often lack an audience for these things, whereas online a graphic with an activist- or political-type slogan my garner positive feedback from likeminded individuals and dissent (in varying degrees of civility, no doubt) from dissimilarly minded individuals. We feel validated by those who agree and charged to defend our positions by those who disagree, but in my experience there isn’t often any follow-through in a way that might lead to advancing any one issue that is being championed over social media. We are certainly all guilty of this at one point or another, and truthfully, the internet enables exposure to far more causes and issues than any one person has time to invest in.

To truly see this in action, just go to the Facebook page of any well-known politician, or even better, The White House. During the 2012 election season especially, the Facebook pages for Barack Obama and Mitt Romney couldn’t post anything without instantly receiving thousands of comments, mostly of users defending or berating candidates or bringing up issues completely unrelated to the post in question. Similarly, many people have learned to avoid the comments section altogether for news articles on well-trafficked websites due to the argumentative and often poorly articulated responses left by many users. Do the people who take the time to espouse dissenting opinions or accusatory remarks on the White House’s Facebook page believe themselves to be engaging in activism? Are they? Maybe, maybe not.

The flip side to this is that, these images are so easy to generate and distribute that they sometimes feel like propaganda, even from well-meaning organizations. To truly do this topic justice is probably beyond the scope of this essay, but it is still worth mentioning. Think-tanks, political foundations, non-profits, blogs, and most recently super-PACs have become a whole new source of news and sometimes dominate social media discourse. This is neither a necessarily good or bad thing, exactly, but it’s more important than ever to question and fact-check information being distributed in addition to its source(s).

Successful outreach campaigns can result in people making real changes offline and create community dialogues surrounding stigmatized and sensitive subjects.

So where do eating disorders and body image fit into all of this? For starters, research shows that increased Facebook use is linked to increased body dissatisfaction (but to be fair, I wouldn’t be surprised if this applied to social media in general and not just Facebook). Returning once more to social media amplifying that which is already in the culture, we must consider the weightism and anti-obesity rhetoric which is so unfortunately complimented by a rise in “fitness culture.” Here the bumper sticker activism becomes personal as “fitspiration,” as it’s called, attempts to promote healthy lifestyles but does so through a very narrow body ideal and often incorporates messages which seek to shame individuals for their body size or food choices – a tactic which also completely overlooks any behavioral or mental health aspect of why someone might be of a larger body size. This social media phenomenon treats fitness as a body type rather than a state of being (as there is already ample, rigorous research demonstrating that you can be fat and fit [link no longer accessible].) while employing phrases such as “nothing tastes as good as skinny feels.” A simple Google Image search for the term yields results of young, thin, white women in workout clothes, proving the point.

Given the feel-good nature in which many people engage in, share, and use these images, particularly those individuals who create them, I wouldn’t be surprised if they felt as though they were engaging in activism by “promoting health,” a notion which is likely furthered by the fact that thousands of people then share and distribute them. But I don’t think that’s what they’re actually doing. If this were truly activism as health promotion, lesser discussed ideas such as focusing on health, not weight, would be more prevalent. Or maybe Sarah Robles, Olympic athlete and determined in 2012 to be the strongest person in the country (yes, she beat out male bodybuilders, too). I wrote at length about “fitpsiration” trends and Sarah Robles on my blog (in pieces titled “Uninspired” and “Fit, or Fitting In?”, respectively), where I argued that if the fitness culture was about health and actual fitness, someone like Robles should be a prime candidate for said inspiration. Her story got attention when it came to light that the strongest woman in America, Olympics-bound, could barely pay her rent. Whereas many Olympic athletes secure sponsorship deals, she had none, while her training regimen and diet to support it were so demanding that there wasn’t time left over for a traditional job. If her accomplishments as an athlete weren’t enough, her commitment to her sport also embodied the drive that so many who promote fitness culture would typically celebrate. However, since Robles’ appearance at 275lbs didn’t reflect that which is stereotypically expected of “fit” individuals, you never saw the Olympian on any motivational social media images.

Activism in the Digital Age

Eating disorder activism and recovery culture provide a unique look at how the internet and social media can be harnessed for positive change as well as misused, often to the detriment of others. Successful outreach campaigns can result in people making real changes offline and create community dialogues surrounding stigmatized and sensitive subjects. Sometimes this outreach can take place in small spaces, such as chat rooms, if it enables people who would otherwise be isolated from others who share their struggles with a given issue.

However, the audience the internet provides can often lead to a sense of accomplishing far more than one actually does due to the reciprocal feedback and validation from like-minded individuals. Well-intentioned actions, such as the promotion of fitness culture, can even sometimes be detrimental to users as they take a complex issue such as health and attempt to simplify it through shame, weightism, and narrow body image ideals.

As more and more people become continuously connected to the internet and social media, online outreach and campaigns will only increase in their potential to create positive change. With that newfound ability to reach millions of people instantaneously comes a newfound responsibility and level of consideration for how causes are promoted and how we invest our energy and time to advance them.

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After suffering from anorexia as an undergraduate in college, Matt Wetsel got involved with the Eating Disorders Coalition (EDC) in 2007 doing volunteer grassroots lobby work. Inspired by the people he met there, he became active in his local community organizing occasional guest speakers and giving talks to help educate others about eating disorders. He joined the EDC Junior Board in Spring 2011, focusing on volunteer recruitment and state-level organizing year-round.

He started his blog, …Until Eating Disorders Are No More, in early 2011. The name was inspired by the legislative efforts of the Eating Disorders Coalition to help end eating disorders through effective policy reform, public education, and properly funded research. More recently, his attention has shifted to examining gender constructs and how they negatively impact mental health and eating disorders in particular.

When not working on eating disorder advocacy, Matt has a background in research, having worked as the primary data collector for a large, federally funded research grant, the Traumatic Brain Injury Model Systems (TBIMS) Project since 2008.

Matt has degrees in Psychology and Religious Studies, and holds a Graduate Studies Post-Baccalaureate Certificate in Gender, Sexuality, & Women’s Studies from Virginia Commonwealth University.