NEDA 2009 Presentation: Social Media for Social Change

I had such a wonderful time speaking at the National Eating Disorder Association Conference last weekend in Minneapolis! Thank you to the NEDA staff, volunteers and fellow attendees. I met so many fantastic allies, I’m very excited to help them in their endeavors and collaborate on new projects.

Online eating disorder activists Jill Sharpe, Kendra Sebellius, Shannon Cutts, Brie Widaman, Rachael Stern and Julie Neumann at NEDA 2009.

Online eating disorder activists Jill Sharpe, Kendra Sebellius, Shannon Cutts, Brie Widaman, Rachael Stern and Julie Neumann at NEDA 2009.

Below is the PowerPoint from my session, Social Media for Social Change: Connecting Activists and Raising Awareness Online. Hopefully everyone walked away with new ideas and practical tools, ready to put social media to work for eating disorder advocacy and awareness. If you have any questions, feel free to leave a comment or send me an email, and don’t forget to connect with me on Facebook and Twitter.


Archives – The Deadly Reality of Eating Disorders

Anorexia has the highest mortality rate of any mental illness. The associated death rate in 15 to 24-year-olds women is 12 times higher than all other causes for that demographic. It is estimated that up to 20 percent of anorexics will prematurely die from complications related to their eating disorder. Though researchers are still studying the data, it appears the mortality rate for chronic bulimia is equally frightening.

Despite meeting hundreds of people on my road to recovery, I had never faced the death of a friend until this year. In the past two months, three fellow sufferers have passed away.

I knew these young women from an online eating disorder support forum. And with thousands of members coming and going, the odds were against our group. I have been part of that community since 2003, and without their honest and unwavering support, I wouldn’t have made it to treatment in 2005. Even when I wasn’t actively posting, I tried to keep an eye on all my beautiful friends struggling with this ugly disease. Some are healthy and no longer need an Internet message board to stay sane. Many are still there, six years later, fighting for recovery. Others have gone silent without an explanation. Though we hope for the best, that they got better or bored, we know the thing that brings us together could also end our lives.

Sadly we know exactly what happened to Jenn, Katrien and Jen. One of these young women was undergoing treatment for leukemia when her kidneys and liver failed. Weakened by years of bulimia, her organs could not take the stress of a blood marrow transplant. The other two took their own life.

Suicide is the leading cause of death for anorexics. For many years, doctors blamed this on frail bodies being unable to withstand even the most halfhearted attempts. But a recent study attributes the high death rate to the use of extremely lethal techniques with a low rescue potential. Hanging, taking a drug overdose and jumping in front of a train were the most popular methods. Whether you weigh 90 pounds or 290 pounds, it’s unlikely you’ll survive getting hit by a train.

Why is suicide the answer for so many? The toll that a chronic eating disorder takes on your body, and more importantly your mind, is devastating. More than a diet gone awry, eating disorders are a deadly disease with no proven cure. People struggle for years to develop a healthy relationship with their body and food, but only a third fully recover. When you see no end to the pain, the logical solution is to end it yourself. If you’ve been slowly killing yourself for years, it is much easier to take that last step on to the railroad tracks.

Farewell Jenn, Katrien and Jen. I hope you have finally found peace.

List: Eating Disorder Activists on Twitter

To  encourage community and spread awareness, I’m building a starter list of people who actively post about eating disorders on Twitter. This is an ongoing project. Though I would like it to be comprehensive, I know it isn’t yet, and it probably never will be. If you aren’t on the list but want to be, leave a comment here or send a direct message to @julie_anna on Twitter. Likewise, if you are on the list but don’t want to be, or you object to your categorization, just let me know.

Writers Raising Awareness

Awareness & Support Organizations

Professional Treatment

Up & Coming TwEDers

Twitter Guide for Eating Disorder Activists


I’m thrilled that so many eating disorder activists are joining Twitter. I’ve been following EDs across the Internet since 1996, experiencing the glory days of pro-ana websites, and this is the first time I’ve seen awareness keep up with the illness online. Help keep the momentum going and make a difference!

To understand the power and utility of Twitter, you just need to jump in and participate. It’s really that simple. But I understand microblogging 140 characters at a time is a strange concept, and Twitter isn’t your typical social network, so I’ve collected the basics to help you get you started.

Be a follower. Start by following me @julie_anna, because you have to start somewhere, right? Go through the list of people I follow, find the ones related to eating disorders that you like  and add them as well. Twitter appears completely useless until you build a community. You can’t effectively have conversations, learn new things and share information when you only follow a dozen people.

This is by no means a comprehensive list, that will be in another post, but here are some more ED and body image tweeps to get you going: @edbites, @edrecovery, @EDNMaryland, @frozenoranges, @illusionists, @lola_snow, @RevoltRealWomen, @thefwordblog and many more.

When you follow someone, it doesn’t mean they have to follow you back, but adding them does act as an introduction. If you share relevant interests and actively participate, it’s likely they’ll add you as a friend. Get to know these people. Read and respond to their tweets. You’ll be surprised at what happens.

What should you be posting? It depends on what sort of ED activist you are. Some people post recovery tips and musings. Others promote events, programs and professional services.  And many pass around links to new stories and breaking research. Just make your Twitter presence personal and interactive. Try to post often enough to be relevant but not so much that you overwhelm your followers. There is no right or wrong way to tweet, so do what feels right and change things up if it isn’t working for you.

Understanding the Twitter vocabulary will help you engage your readers and get the most out of the site, so here’s what all those strange abbreviations and characters mean:

  • @ – When you reply to someone, the tweet will start with @ plus their name. But you can insert this anywhere in a post and it will create a direct link to that user. Then they’ll get an alert letting them know you’ve included them in a post.
  • DM – Direct Message. These are private messages that don’t show up in your public stream. It’s the best way to share sensitive and personal information since anyone can read your regular tweets.
  • RT – Retweet. which means you’ve copied the post or link from another person. It’s common courtesy to reply to the original poster as well, so it looks like RT @julie_anna Being bulimic really sucked.
  • # – Hashtags seem to be the most confusing part of Twitter for new users. Like tags on a blog post, they allow people to designate the main subject of their tweet so other people can find it more easily. They also act as convenient shorthand. They are especially popular for events (#sxsw), news (#teaparty) and Twitter trends (#followfriday).
  • Funky looking URLs – I’ll go over this in the next installment of the ED Twitter guide, but basically people use URL shorteners like and tinyurl so they can insert useful links without wasting characters.

It’s sort of ironic that it takes multiple blog post to explain a site that only lets you post 140 characters at a time, but this should be enough to get you started.

Archives – The Link Between Eating Disorders and Vegetarianism

A new study published in the Journal of the American Dietetic Association indicates adolescent vegetarians are more likely to have an eating disorder than their peers.

The study was designed to investigate the relationships between vegetarianism, weight and dieting behaviors in teenagers and young adults. Researchers found that 15 to 23-year-old vegetarians had healthier dietary intakes and were less likely to be overweight. The active vegetarians also displayed a higher incidence of disordered eating behaviors, including restriction, binging and purging. The highest risk group was young adults who’d formerly been vegetarians, with 27 percent displaying symptoms of an eating disorder.

The popular interpretation of this study has been an attack on adolescent vegetarianism. Admittedly any diet that allows you to reject an entire food group can be manipulated to benefit an eating disorder. Vegetarianism can also be a convenient excuse for someone looking to minimize or skip meals. In these instances, refusing meat is used as a method of restriction, which is distinctly different from vegetarianism motivated by morality or health concerns.

So I feel compelled to state the obvious – just because an eating disordered person is a vegetarian, it doesn’t mean they follow a vegetarian diet because of their eating disorder. Yes, I am a vegetarian, and yes, I am a recovering bulimic and anorexic. I began cutting meat out of my diet when I was 11 years old, before I had an eating disorder. My vegetarianism continues to be an ethical choice and has nothing to do with weight loss.

However I do think my vegetarianism and eating disorder share a common trait – thinking beyond the plate. In a society that encourages inhaling mass-produced junk food on a daily basis, conscious eating is a rarity. Very few people actually contemplate what they put in their mouth or how it will affect their body. Such blind consumption contributes to a slew of health issues, including obesity, heart disease and diabetes. To be aware of where your food came from, to consider the impact it will have on your body, is exceptional. At its best, this attitude leads people to adopt a vegetarian diet. At its worst, this awareness contributes to a destructive mental illness.

It makes sense that people with eating disorders would also have moral opinions about where their food comes from. When you spend hours and days and years obsessing about the effect food has on your body, you are going to think about the food itself. You consider the ingredients, the processing and ultimately the origin. Spend enough time pondering these answers and vegetarianism is practically inevitable. But that does not mean the vegetarianism is disordered, it merely means the disorder helped bring you to vegetarianism.

Even when they coexist, a vegetarian diet and an eating disorder do not need to be codependent. You can recover from an eating disorder without consuming meat. My treatment team was very respectful of my beliefs. They helped me setup a meal plan that incorporated alternative sources of protein. One staff member even made special trips to the natural food store and brought me black bean burgers every week. They proved it was possible to refrain from meat while learning to eat again.

If you are a concerned parent, please realize that adolescent vegetarianism is not an eating disorder. It can be a very healthy and responsible diet. If your child decides to become a vegetarian, try to actively support that choice. Engage them in a conversation. Discuss their motivations and highlight the beneficial impact this can have on society and their long-term health. Then help your child eat a balanced diet. That may mean cooking special meals, or better yet teaching them to cook meatless dishes themselves. But don’t make them feel guilty about their choice. Mixing food with shame is a guaranteed recipe for an eating disorder. Support their decision now and you’ll build the foundation for a lifetime of healthy eating.

Archives – Verses of Forgiveness

This post was published in my masters’ thesis for the University of Texas School of Journalism.

Beneath the salt of everyday life, there was a bitter taste to my skin. I could feel it on my tongue, intensifying after days of not eating, when the fat burned away and my essence rose to the surface. I was a sour girl. I was an angry girl. I was a girl who lived the opening lines of “Stay Golden” by Au Revoir Simone. “I saw it coming/ I just thought that you should know.”

What I saw coming this time was the inevitable break up of yet another unhealthy relationship. My boyfriend told me he was moving to LA in the middle of a rock concert. He handed me a drink, leaned close so I could hear him through the whining electric guitar and sharp popping of drums, and said he was leaving. The June night pressed into my skull, hot and pulsing, cauterizing the senses. By the time he said he didn’t want anything to change, he wanted to make it work, even over such a long distance, I had cut him away. He was already another ex-boyfriend.

“Stay Golden” is my anthem of forgiveness, fittingly off an album titled Verses of Comfort, Assurance and Salvation. Of all the things that weighed on me, that made my body feel fat and bloated, my latent resentments were the heaviest. I had never learned to forgive, probably because I can never forget. I remember every word, the clothes we were wearing, the books on the bed stand. The picture may fade with time, yet the negative is always there, smudged faces and ghost eyes burned into my brain.

Or perhaps it was just men. I could not forgive men. A man’s rough hands grabbed me and broke my trust long ago, and other men followed, snapping my instincts of worth and preservation, leaving only dry kindling behind. I tried to make my body perfect so a perfect man would love me. I merely succeeded at making my body sick so only sick men could love me.

So it is no surprise that my deepest grudges were with ex-boyfriends and former flings. “A careless word is complicated,” Au Revoir Simone sighs. “An emptiness still leaves a space.”

When I met Au Revoir Simone at SXSW, I had the uneasy feeling of looking in a mirror. They had the same dark hair and bangs, loose tops over skin-tight pants, an air of sweet sorrow even after a successful show. When I asked them about their fans, the singing keyboardists immediately acknowledged the dedicated young girls who grabbed onto their music with such force.

I smiled in recognition. Of course the lovesick band geeks and dark artists embraced Au Revoir Simone. These young women know what it is like to be a sour girl. I can hear the acid lingering in their lyrics. “So don’t feel bad,” they reassure the clumsy man who held a delicate heart. “Realize all your emotion/ And may you find all your relations/ Will keep you free.”

But in “Stay Golden,” Au Revoir Simone shows there is an aftermath to anger. The music is a fall day in Brooklyn, sitting alone at a coffee shop, the terrible memories buffered in a Prozac dream. It is a muted script, a close-up of a girl staring out the window, pale sunshine and poplars reflected on her cheeks, thinking, but not too deep, not so deep that it hurts. The sharp edges and chords of dissonance are removed.

“I’m feeling better every day.” When they sing this line in their soft bird voices, I think of mercy. I think of moving on, of recognizing and making amends. I think of a beautiful view. It is always fresh, always pure, always on the horizon. There is a reason to drift forward. There is something beautiful over the next hill.

“I’m feeling better every day.” The most beautiful lyrics, repeated twice, more melodic than the rest, remind me where I am today. They remind me to turn these patterns of golden light into a new memory. They remind me to forgive.

I do not have to make myself anything. I let myself be happy, I let myself be kind, I let myself be at peace. And I am feeling better. Every single day.

Archives – This is the Simple Life?

This post was published in my masters’ thesis for the University of Texas School of Journalism.

“Write yourself: your body must make itself heard.” – Helene Cixous

The thin body is made for consumption. Reduced to its essence, potent and pure, distilled on sleek magazine covers, we swallow it like a smooth pill. We stare hungrily at tabloids in the supermarket checkout line, rows of artistically angular women staring coldly back. The thin body itself does not consume. It transcends want and need. And Nicole Richie, a girl who is clearly needy, who so desperately wants to be wanted and has redesigned her body to attend those needs, rises above the rest.

In November 2005, the reality TV star graced the cover of cheeky Jane magazine. On The Simple Life, which debuted in 2003, Richie was the court jester to Paris Hilton’s princess routine. She had the foul mouth and dirty mind to pull it off, but she also looked the part. Hilton’s svelte body and carefully coifed appearance was the ultimate foil to Richie’s round, ratty, ridiculous look. So when she appeared in Jane, resplendent amongst a hazy field of summer flowers, she was barely recognizable. The rough-hewn recovering heroin addict suddenly possessed classic Audrey Hepburn grace. Richie had new clothes, new hair, new makeup, a new dog. But the most dramatic difference was her new body. The teaser on the cover read, “Nicole Richie on her drastic weight loss and that Paris catfight.” By dropping the pounds Richie shed her old image.

This is the slim-down dream: Leave your excess baggage behind, become light as a bird, and the sky is the limit. It is no surprise that her continuing weight loss was applauded as part of a stunning makeover. In Style dedicated their summer 2006 “Beauty Transformation” to Richie, displaying an initially unflattering timeline of pictures starting in November 2001 that culminated in her triumphant rebirth as “a modern Twiggy.”

Then the narrative became more sensational. On Nov.13, 2006, Richie was once again a cover girl. This time she was the lead story for celebrity magazines OK! and In Touch, and was prominently featured on the front of People, Life & Style and Us Weekly. She even got The National Enquirer. The headlines declared “Scary-Thin Nicole Seek Treatment” and “85 lb. Nicole’s Fight for Her Life.”

When her body continued to shrink, going from stunning to scary, Richie defined a new breed of skinny star. The tabloids anointed them the “pin-thins.” Teen idols like Lindsey Lohan, Mischa Barton and Richie passed their nights in the same clubs with the same men wearing the same designer clothes. Yet the common link in their narratives became self-destruction in all forms, especially those vices that could support their poignantly waifish appearance.

Eating disorders are conventionally interpreted as a way to take control, to reestablish personal power by seizing your own body. But control took on a different connotation with the pin-thins. These young women were referred to as “out of control.” Their alleged eating disorders looked more like a rebellious outburst or angry addiction than the passive submission of starvation. Each pound lost symbolized another screw falling from their unhinging lives. Ultimately, these freefalling party girls overindulged, even when it came to restrictive nature of extreme weight loss.

In a perverse inversion that confirms every little girl’s body image nightmares, the dangerously tiny stars become increasingly popular. Life & Style featured Richie in a September cover story called “Body Obsession: Extreme diets! Plastic surgery! Why gorgeous young stars are risking their lives for the perfect body.” The perfect body meaning extreme thinness, an aesthetic that physically and mentally weakens women. Losing significant amounts weight requires a caloric deficit through restriction or purging that leaves the body constantly lacking fuel. So the body begins to eat itself in an attempt to survive, burning both fat as well as muscle tissue, which includes vital organs like the heart. Maintaining an unnatural weight requires a similar physiological struggle. As the body attempts to reset its metabolism, everything slows to a sluggish pace, the brain fuzzy and the body weak, still consuming itself in an attempt to find enough energy for daily functions.

Richie adamantly denies her weight loss is due to an eating disorder, but do the semantics matter when her body so clearly plays the part of an anorexic? The drastic weight loss has stripped away her multi-dimensional personality and turned her into a commodity, something to buy and consume. And commodities do not get to speak. In lieu of quotes, the tabloids prefer to highlight photographic timelines of her figure. In Touch estimated Richie is 5’2″ and lost 35 pounds in 3 years, equal to 28 percent of bodyweight. Life & Style guessed 40 pounds, showing three pictures of Richie labeled with their assessment. “First she was plump” at 125 pounds in 2003. After dropping to 108, “she was just right” at the end of 2004. “But then she went too far” when she hit 85 pounds.

Richie’s thinness, initially praised, now suspicious, has become the only voice we listen to. In the startling pictures, beneath the layers of designer clothes and huge sunglasses, her bones are razor sharp, her joints luminous in the fluorescent lights. We see an empty body; we see an empty soul. An empty soul is a blank canvas; a blank canvas is endless with possibilities. This lost girl, searching for love, found it the dead space that now surrounds her. So we watch, stealthy as vultures, always wanting, ravenous for more.

Archives – Whine On, Amy, Whine On

This post was published in my masters’ thesis for the University of Texas School of Journalism.

Amy Winehouse won’t go to rehab. No no no. But we know she should.

“Rehab” is an undeniably contagious track. The defiant anthem of denial is the jazzy songbird’s personal motto and claim to fame, blurring the lines between creative expression and scandalous exploits, saturating both popular and alternative media. And in Winehouse’s personal life, each new debauchery exceeds the last. It is tragically inevitable she will abuse herself into some sort of treatment program, voluntary or not, and onto the cover of Rolling Stone. Or perhaps Wenner and crew will wait until she releases her third album, a painful yet mature reflection on her troubles and triumphs, glorious with emotional rebirth. As long as the main character survives, the story can write itself. If she falls, switch to the alternative ending that references Janis Joplin.

“I don’t need drugs or alcohol,”€ Winehouse told the British press in October. “It’s something to do when I’m bored.”

Apparently the 23-year-old is nearly bored to death. Winehouse is firmly enmeshed with the gossip columns, which means a very public record is kept of her various binges and outbursts, as well as her fluctuating weight and tumultuous relationships. During interviews she loudly declares she faces nearly every mental demon in the DSM-IV, from unmedicated manic depression to addiction to bulimia, while simultaneously insisting she does not need help.

I can certainly relate to the situation. Before I entered residential treatment for an eating disorder that was supported by a regime of pharmaceuticals, I did not plan on going to rehab either. As Winehouse said, “I don’t need help because if I can’t help myself I can’t be helped.”€ I could admit that I was sick, but it took two weeks of detox and stabilization to admit checking myself in was a good idea. After ten years of bad decisions it was hard to believe I finally made a good one.

That is one of the most difficult aspects of accepting help: giving up your old identity. Problems like alcoholism and depression become so pervasive that they predetermine your entire life. Every thought and every choice, it all falls back to that place of suffering, maintaining the sick circle. At least you know what is coming.

Who would Amy Winehouse be if she wasn’t a boozer and brawler? What would she do everyday? And what on earth would she sing about?

“I only write about stuff that’s happened to me, stuff I can’t get past personally,”€ she said in this month’s Blender. “Luckily, I’m quite self-destructive.”

And when there is nothing left to destroy, no fat left to burn, the ultimate decision arrives. All the excess self, the bad feelings and recurring nightmares, are gone. You are down to bones, the vital organs, pale skin that barely keeps the world out. Do you preserve what is left or push ahead, oblivious, disappearing?

If you have already worn yourself down to the heart, cannibalized the muscles that bind your soul, it is too late. The stories cannot be untold and the pictures cannot be erased. There is nothing to salvage, just tiny pieces of paper, floating aimlessly, bleeding in the rain, forgotten. The once persuasive record becomes a rallying cry of demise, a pathetic plea, a suicide note. The DJ won’t spin such sad songs on Saturday night.