after reading this piece, “karen” wrote to me:
“I read it and posted it on the forum. Thanks so much for that you did me some justice and the world justice. I hope everyone reads this and thinks twice about ‘getting’ an eating disorder.”
i’m posting it here so we can reach more people. since that’s what she has taught me to do.
Rejecting the “Enigma of Anorexia Nervosa”: Justice and the Pain of the Anorexic Woman
Anorexia confuses people who have never been anorexic. As someone who has witnessed her twin sister resist recovery from anorexia with all her willpower, I know it confuses me. I spent an hour and a half interviewing the webmistress of a popular website for people with eating disorders, whom I will call Karen, and she told me that recovering from anorexia would be like “losing [her] best friend.” At twenty-three years old, this woman suffers from every kind of pain imaginable—partial deafness, bi-polarity, depression and low self-esteem, Fibromyalgia, Post-Traumatic Stress Disorder, anxiety, chronic head pain, insomnia, extreme poverty, Dysfunctional Uterine Bleeding, Peptic ulcer disease, and other illnesses. Why would she hang on to her anorexia, the one pain that’s within her control to end? How could someone cling so to self-starvation? How can self-starvation in fact be precious? Psychiatrist and researcher Hilde Bruch articulated this as the “enigma of anorexia nervosa” in the subtitle of her 1978 classic The Golden Cage. While listening to Karen I came to understand that amongst the many pains her life, her anorexia was precious to her precisely because it was in her control. It represented her ability to be effective, to be an agent in her own life and to have power over her own body and destiny. Moreover, she spoke with me for so long and so intimately because she wanted me, and others who shared in my confusion about anorexia, to really grasp the overwhelming forces (like institutionalized sexism) that have led her to rely on anorexia as a means of managing emotional pain, as well as the pain of her entrenchment in and reliance on anorexia itself. I will share her story here in order to do justice to her and other people living with eating disorders, because I have come to see the injustice in this idea of “the enigma of anorexia.” The way to lessen Karen’s pain is not to mystify it, and paint her as irrational in the process, but to tell her story. Though individual anorexic persons will imagine the significance of their eating disorders differently, it must be made clear that anorexia is an understandable and human way of dealing with pain, destructive though it may be. To be one more person who does not see this only adds to Karen’s burdens.
She has been made acutely aware of others’ confusion with anorexia through the online eating disorder community. In her eyes, the people who need most to learn about the reality, complexity and pain behind anorexia are not laypersons or researchers, but people she calls “wannarexics” —young women who have hopes of “learning how” to be anorexic and other members of the “pro-ana” movement. Wannas believe that anorexia is cool, a lifestyle, a choice rather than a means of managing pain, and to Karen, this denies her lived experience.
Since 2001 , pro-ana or “pro-anorexia” websites have hit the web en masse. Pro-ana sites are created by and for women living with eating disorders, and diverge widely in their stated purposes and understandings of anorexia. The most radical portray anorexia as a lifestyle choice rather than a mental disorder or illness, sites Karen would label “wannarexic.” As the webmistress of Twisted Girl of Ana puts it: “This site is for Pro-Ana girls who are happy being anorexic. If you are anti-ana please leave, now. Thank you.” Such websites reprise a characteristic content and format, consisting in a “thinspiration” page featuring photos of emaciated models and actresses, definitions of eating disorder related terms, anorexia-related song lyrics and poetry, low-calorie recipes , tips for restricting, bingeing and purging and losing weight, a forum for discussion, and the Ana Psalm and Creed and Letter to Ana—seemingly authorless texts that position Ana (the personification of anorexia) as an object of religious worship. All of these websites contain an initial disclaimer clarifying the site’s purpose and warning non-anorexic people and people in recovery to stay out. Webmistresses sometimes include an “About Me” page, perhaps featuring their vital statistics, personal photographs or stories.
It was through her website that I found Karen. I made the mistake of thinking that her site was pro-ana as its domain name suggested; pro-ana sites were the original focus of my research. It was perhaps for the reason that I seemed confused that she consented to be interviewed. She lives to set the confused straight, and that is why she has kept her domain name. So many others had made my mistake that for a time Karen switched the domain name to one that did not include the word “pro-ana.” However she switched it back because her old domain name allowed her to reach more wannas, and thus change more minds in need of changing:
Erin: …you keep the Pro Ana because it’s so highly trafficked.
Karen: Yeah in Google. That way, if people do think it’s pro-anorexic and they get on there they’re gonna realize real quickly “all right.” And then maybe they’ll change their minds…That’s like, my big thing…You know it’s kinda sneaky [laughs].
Karen originally chose a pro-ana domain name because when she created the site in 2005, she identified with the label. She was amongst the “first wavers” of the pro-ana movement, a movement she feels wannas have since co-opted. According to Karen, pro-ana was “not for pro-anorexia and…not for pro-recovery. It [was] for people stuck in the middle,” people who were not yet ready to recover. The media changed the popular understanding of “pro-ana”, ushering in the second wave, as a webmistress of several pro-ana sites describes:
Pro-ana was the term used to describe sites that catered to eating disorders (usually anorexia). The first wave movement started back in 2001 as a means for other anorexics to connect with each other so as not to suffer in silence. …Over time the media has blown this term way out of proportion and making it out to be such rediculous ideals as “cults” and that the owners were “recruiting” others into an anorexic lifestyle. The very notion that the internet will give you an eating disorder is lewd to begin with. It’s not a computer virus that will infect you too. However, through all of these blatent lies about the movement, some were lead to believe in what the media preached about it and began believing in it themselves … including anorexics. Several sites started popping up as “hard core” and were the very thing pro-ana was not. Not all hardcore sites are bad however, but the majority are not real ones. Many first wave sites never lasted long, and there are very few left that are done in the true first wave style. And of the ones out there today, they are all mere copycats of the first wave sites (in content and material).
Second-wave sites were forced to reckon with the effects of the media, the “copy-catters” who jumped on the fad of pro-ana, and those who believed in the “myths” of pro-ana recruitment. Websites participating in the “Ring of Hope”—Ana Does Not Love You, House of Thin, Rebecca in Wonderland, Goodbye ED and Pro Ana [Dot] US—represent this new brand of neutral site. They do not offer “thinspiration” or “tips and tricks,” and vehemently reject the notion of an eating disorder as a lifestyle choice. Karen’s site falls in line ideologically with these neutral sites. In the opening words of her site, Karen writes: “Please read. An eating disorder is not something you can catch. Would you want to wish for cancer? Alcoholism? A patient in chemotherapy would not ask another on how to achieve more cancer cells in their body correct? Likewise, an alcoholic does not wake up one day and ask a fellow alcoholic on the best beer to buy, to get smashed.” Webmistresses of neutral sites tend to be those who resent what pro-ana has “come to be,” as the webmistress of Ana Angels puts it. She hates how “normal pro ana” sites “read like a ‘how-to’ of hot how to ‘get thin.” and how their members look on pro-ana as a “secret diet club,” while following “evil and dangerous” “bullshit like the Creed, the commandments and all of that.” Similarly, Karen sees the pro-ana movement as having been appropriated by the wannas—“people who sit there and just glorify it and think it’s a fad.” To Karen and other first wavers, “They’re just a bunch of idiots.”
How is it that wannas—whom outsiders might view as little more than silly—can offend Karen and members of the first wave so profoundly? How do wannas hurt them so much? I do not know the stories of the women who share in Karen’s sentiments, but I know from Karen the preciousness of anorexia to the anorexic—anorexic behaviors take on deeply important personal meaning, though what those behaviors represent will certainly vary from person to person. In what follows I will attempt to explain how Karen’s anorexia came to be precious to her, and how what she perceives as the ignorance of wannas and others continues to harm anorexic individuals.
Karen was diagnosed with anorexia two years ago, in 2005, but until her diagnosis, she was unaware that she had an eating disorder. She had begun dieting and exercising vigorously after giving birth to two girls within eleven months and twenty days of each other. As a child she had considered herself fat, and found that she could lose weight rapidly by eating only a bowl of soup in a day. She “thought [she] was dieting.” She looked with disgust on her post-partem body:
…I just hated myself because they ruined my body. I mean, not that I hate them but children do ruin your body in some way, shape, or form and that really made me sad. Of course I didn’t get no reassurance from my ex either. He’s now my ex.
So she started exercising rigorously, and dieting and eating smaller portions as she had done as a child, and began to lose weight. Her body shape was only one thing out of many that caused her pain, but it seemed to be something she could control if she tried hard enough. She was depressed all the time, yet anxious and unable to sleep at night. She “hated [herself] so much she would do anything to get rid of [herself].” So controlling her weight emerged as a way to deal with her self-hate, her pain, and in some measure, to make life bearable.
In her mind, this is the way anorexia starts for “actual sufferers” (as opposed to wannas):
People who are actual sufferers at first don’t know that they’re sick. They don’t know until someone says “You better get to a doctor,” or whatever. Or they can’t take the way they’re thinking anymore. That’s the way I started; I couldn’t take my life anymore. You know everything was hitting me so hard and I just couldn’t take it no more. And everyone commented on my weight loss and I felt good. I felt good about myself. And I just kept going, kept going and I just couldn’t take it anymore.
So she went to a psychiatrist, not because she had reached a weight of 79 lbs at 5’ tall, but because she sought help for her emotional issues; she did not see the eating behaviors as the issue. Her psychiatrist told her she was bi-polar, but tacked on the diagnosis of anorexia, pointing out her dangerously low weight. The next year she was diagnosed with bulimia as well.
Karen developed anorexic behaviors in order to cope. Her emotional pain and low self-esteem preceded her eating disorder. She did not plan or seek to become anorexic. Yet she feels that others—perhaps society at large—view anorexic people as “conceited” and silly. “They assume it’s feigned,” she says. “They think, ‘Oh, just eat the sandwich.’ And it’s not that easy.” Karen sees wannas as fulfilling society’s expectations. They do seek consciously to become anorexic. They don anorexia because it is stylish. They “usually think [anorexia is] cool, it’s the thing, it’s a fad diet but it’s not.” And this dangerously undermines her status as a legitimate, blameless and entrenched sufferer—someone worthy of sympathy, not scorn…someone who did not choose anorexia, but stumbled upon it, and found that it met her needs. Her attitude toward wannas is, she feels, society’s attitude towards her and other people in the online, eating disorder community. She thinks wannas are “probably sicker than the people who have a real eating disorder,” and that all pro-anorexia sites should be banned. Many have similarly scrutinized her site and others like it. Therefore part of Karen’s project is not necessarily to set right existing societal attitudes, but to divert them towards wannas and away from true sufferers. In so doing, she aims to reclaim anorexia from the wannas.
Which leads me to the preciousness I hope to make clear to you. Karen briefly mentioned an unsupportive lover, her then husband and the father of her children, in her discussion of the beginnings of her anorexia. As the interview progressed, she kept returning to this man’s treatment of her and her children, offering more and increasingly horrifying examples of the pain to which he subjected to her, until her story reached a culminating moment, and both of us cried. Karen cried because she had done everything she could, always, to protect herself and her children, but she seemed to have no real power to be effective. I cried because her strength, sense of justice, and yet total disenfranchisement were harshly apparent to me. Through it all, her relationship to her anorexia was the only thing she could rely on, the only relationship that was clear, and reciprocal—her “best friend.”
She had told her husband about her website and “he got obsessed with it…and decided to meet a girl on there.” She learned that he “told a sixteen year-old on [her] site that her eyes were amazing.” So she took his computer monitor away. Tossed it. And that was “the last time [she] ever lived with the asshole.” She tried to protect herself, her site and her site’s members from his violation. As a result he retaliated…assaulting her…in front of her two young girls.
[Edited for content]
As a result of this attack, Karen is deaf in one ear and needs the assistance of a hearing dog. Her husband destroyed her hearing in that ear when he hit her upside the head. She and her girls had to live in a shelter for a time. She believes the attack caused them to regress. “Before the assault my kids were normal,” she says. “I swear to god. They were happy…They were…talking. They were doing everything they were supposed to do.” Now her three year-old “babbles like a baby,” has Asperger’s Syndrome, isn’t “doing anything in her age group,” and has the mind “of a one and a half year old.” Her four year-old pees her pants, “wakes up with nightmares,” and “thinks people are gonna get her.”
And even though Karen kicked her husband out, divorced him and took him to court, she has not been able to prevent him from harming her and her children, nor has she received the justice and affirmation she deserves. When her ex visits the children, as the court has mandated he must, he hurts them. On one occasion he sent them back “with no fuckin underwear on…just a jacket and jeans.” And though he makes over $500 weekly, while Karen receives only $77 twice monthly from the state, he still owes over $500 in child support. Yet she does everything she is supposed to. She “[sees her] psychiatrist, [her] therapist, [her] doctor, [her] other doctor, the ear doctor and [she does] everything by the book, when [she’s] supposed to do it.” It seems to her “like [she’s] doing more than the actual freakin’ attacker.” Yes she went to court. Yes she does more than any mother should ever have to, yet the courts scrutinized her for being anorexic. They required her to see doctors. They pathologized her and not her husband. In her experience, the courts are “for the men.” She is fighting for justice in a sexist system. She says: “…as a victim, you’re being scrutinized all over again, and I hate it.”
After speaking these words to me, she broke down, and she said, “I’m ready to cry.” She told me:
…it’s like I’m not doing enough.
Erin: Nooo…
Karen: I hate it. I still have to do more.
Erin: No, no, no, no.
Karen: And that asshole’s just sitting there doing nothing but laughing. And if he’s laughing at our situation then he better be laughing…right in his kids’ face.
Erin: That’s horrible.
Karen: Because he’s putting us through hell, by his actions.
Erin: …no you’re doing…ten thousand times what any mother should ever be asked to do. You’re doing so much more than any mother has ever done.
Anyone who has heard Karen’s story would find it impossible to believe she did not do enough for her children. She has fought for them in every way within her power. Even during our conversation, she stopped herself mid-sentence on several occasions to take care of her kids—get one daughter a drink, pick up another when she fell, etc. Yet Karen would rather believe that she has some power…that there must be some thing she has not yet tried. Or else she must accept that she has no power to keep her kids safe, and no power to bring justice and balance into her and her children’s lives.
This is why her anorexia means so much to Karen and why she has not yet been able to recover. “When everything else is in chaos,” she says, “the only thing that I know for sure is anorexia.” Anorexia “has an end result…You’re either going to lose weight or you’re going to fuckin die.” She says she is recovering from the bulimia, but to recover from the anorexia would be like “losing [her] best friend.” Unlike her relationship with her ex, or her relationship with the courts, Karen’s relationship with her anorexia is reciprocal. She does a little work, the anorexia does a little work. She decides to fast for the day, she loses weight. Anorexia always delivers what it promises: weight loss or death. Nothing and no one else in Karen’s life seems to operate this way. When she acts, there never seems to be an equal and opposite reaction—justice, effectiveness. And this is what she believes should be: “Why should a man that hurts children be able to see them, when every time he does it affects them?” This is what she seeks: “My justice is when he gets the fuck out of here and never comes back into my life.” And if he tries to see her or her kids again she will take her floor lamp and “use it right upside on his fuckin head.” She will “make him deaf on that side. See how he likes it.” When and if Karen recovers from her anorexia, she says it will not be for her own sake, but for the sake of her daughters. And for them, she hopes to recover in the next couple years. Her anorexia has been better to her than her ex husband, the courts, or the media have. Her stated wish to recover is just another astonishing testament to her selflessness and willingness to protect her kids.
It should be clear now why the idea of “the enigma” is so harmful—why the ignorance and naïveté Karen sees in the wannas does her a great disservice. If a person suffered as much as Karen, and came to rely on anorexia as a way to deal with that suffering, that person would be deeply hurt if the world looked only at her behavior, decontextualized, called it irrational and exclaimed “How curious!” There is nothing curious about it. When there is anorexia, there is pain behind it.
What is worse, anorexia and pro-ana in particular have popularly come to be understood as fad movements made up of bored, selfish, spoiled teenage girls—epitomized by the newly emergent “anorexic star.” PEOPLE magazine dedicated their September 29th, 2006 cover story to the Hollywood trend towards super-thinness, and invited readers to post on their blog “Off the Rack.” As a result, over three hundred people posted online, more often than not displaying ignorance about eating disorders, and hatred and condescension towards super-thin celebrities as well as anorexic individuals more broadly. Hundreds left comments like “kat’s”:
kat | Oct 1, 2006 8:22:37 PM
you know what? anyone who is stupid enough to give in to the pressure of looking like a disgusting skeleton deserves it!
or “wanda’s:”
wanda | Oct 1, 2006 5:47:09 PM
[Nicole] Richie is the saddest of the walking cadavers because she has no talent whatsoever…only by slowy starving herself to death has she ever managed to be on the cover of a magazine…sad…but honestly, a lot of girls would be willing to do the same
And such cruelty is not relegated to the PEOPLE website. Karen and other webmistresses are frequently subjected to comments like the one this anonymous poster left in the pro-ana site House of ED guestbook:
You are fucking killing young girls! For that you should be thrown in jail and let [prisoners] rape you! Because thats what you fucking deserve! No wonder so many girls struggling with anorexia refuse [treatment]!
People who are anorexic are in pain. People who are in pain deserve a sympathetic ear, and compassion. They deserve respect as human beings with inherent dignity. What does it mean to extend this respect? It means believing in, and accepting as given, the weightiness and realness of the pain that has compelled them to turn to eating disorder behaviors. It means understanding the anorexic as in pain. It means rejecting the enigma altogether.
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