As she stood on the scale, her pre-adolescent classmates eyeing the slight number it registered, 11-year-old Andrea Olson got an unexpected bit of praise. It cemented itself into her psyche so firmly, she hears it to this day:
"Wow, you're so lucky!" the physical education teacher said with a tone of glowing affirmation. "You're so much skinnier than everyone else."
That statement would help qualify Olson not only for the Presidential Fitness Award, but for a more dubious distinction down the road that few could have predicted then.
Being extraordinarily thin became a badge of honor for Olson. Her elementary school friends registered about 100 to 110 pounds. But Olson weighed less. In fact, decades later, she still remembers how much less she weighed.
It wasn't a little. It was a lot.
And that's what came to matter most — even more than life itself.
That's what always matters most when you have anorexia.
Widely regarded as the deadliest form of mental illness, anorexia subtly captures both the hearts and minds of those who experience it as a mechanism to develop self-control and foster perfection. So pervasive is its grip that a relatively new network of online pro-anorexia, or "pro-ana" Web sites have sprung up in recent years, which serve as virtual "support groups" for a disorder that is at once both derided and fostered by the media and popular culture.
Some of those sites even tout anorexia as a "lifestyle choice" to embrace and take pride in. (See accompanying story on this page.)
Olson's own illness was nurtured by those Web sites. Now 31 and working two part-time jobs, she is recovering from more than two decades of ingrained behavior that garnered praise from some and deep concern from most. Having moved through the phase in her life where she simply didn't care if she died — though she never believed it could really happen — she is hoping to earn a master's degree in social work in order to work with disadvantaged teens.
This week, Olson will share her story at the University of Utah as part of a weeklong series of events that coincides with National Eating Disorder Week, which begins Monday. Olson hopes her story will touch someone battling body image issues, but she has no desire to deal with anorexia as a professional. "I've spent too much of my life doing that on the other side."
In fact, she's dealt with it much longer than most. She stopped eating any kind of a regular diet at age 9. "There were lots of family issues I couldn't deal with," she remembers, brushing her hair away from her face in a gesture that says she's not hiding anymore.
"So I stopped eating, not really knowing what I was doing. It was a way to numb out to what was happening." The details are so painful, she declines the invitation to verbalize them. "Back then, eating disorders weren't really talked about. I heard one presentation in high school, but that's it. Now it's glamorized and all over the place. But I didn't even know what I was doing."
Hearing the elementary school PE teacher's amazement was the first time she remembers thinking, "this is kind of cool." But she didn't really grasp the seriousness of what she was doing for several more years. She began purging — making herself vomit — at age 12.
By the time she was 17, "I didn't go to (school) lunch anymore. I stayed in my math class and helped the teacher grade papers," without ever being questioned why she didn't eat.
She tried to avoid school, so she would pretend she was sick. That wasn't difficult; she was purging "every day, and sometimes 12 times a day."
Olson does remember other teachers through junior high and high school asking whether everything was OK at home, how her family was, where the dark circles under her eyes came from, whether she was eating or sleeping enough.
She would physically and mentally shrug her shoulders. "What are you talking about?" was the usual reply. Avoidance accomplished.
"I honestly don't think I was in denial. I just didn't get what was going on. … I didn't connect the dots."
Apparently, neither did those who were in a position to help her. At least not soon enough.
"I know they could have done things to make a difference. Had someone really stepped in," she says, her voice trailing off.
"If they had just forced me into the hospital, it would have freaked me out." Had treatment come earlier, "I could have changed (my thinking) quicker."
From her own observation of younger girls who had early intervention, "it was much easier to get them on the right path more quickly. After six months, they would be fine, and I would still struggle." She was hospitalized at least 21 times, each a fight to restructure her thinking and change the emotional comfort zone that slowly kills those who struggle to stay within it.
"I was in one place for 14 months, and when I got out, I lost nine pounds within a week."
The personality and psychological makeup of those at risk for anorexia includes at least two common factors: wanting to be in control and being achievement oriented, according to Justine Reel, founder and faculty adviser of SPEAK (Students Promoting Eating disorder Awareness and Knowledge) at the University of Utah. The organization was formed within the past few years to provide support for students who suffer.
Reel says patients with the disorder see it as "a way for me to have control in my life, even if everything else feels out of control. I can decide how much I put into my mouth or what I can do with the food that goes down. That's how I can stay in control."
As the disorder is nurtured and perpetuated by the maze of blogs and "pro-ana" Web sites, it can become "almost a self-fulfilling prophecy," says Reel, who has been conducting research on eating disorders for more than 15 years. "Recovery is such a long process and requires so much patience and focus, after a while it becomes a sense that 'this is part of who I am and how I operate. It's the only coping skill I've used — no matter how dysfunctional — that works."
The grip of that dysfunction is so tight that Shelly Guillory remembers preferring to die rather than comply with those who tried in vain to treat her. Now a local psychiatric nurse, she is married and working not only for a paycheck, but more importantly, for a future in which the temptation to refrain from eating is no longer a regular occurrence.
A few years ago, when she was a patient at The Renfrew Center in Florida, one of the nation's most experienced treatment centers, "I just tuned out and did exactly the opposite of what people said."
When admitted for treatment, she had suffered with anorexia for six years, had been hospitalized 10 times, was heavily dependent on mood stabilizers and tranquilizers, and had a feeding tube that had been surgically implanted in her stomach — the latter a mark of distinction among her "pro-ana" peers.
With a multi-disciplinary team, including doctors, nutritionists and therapists, she had what many believe is the best treatment money could buy. "I didn't even pay attention. It's so weird to look back now and think how scared I was that I would be 'normal' or 'average.'
"I couldn't do anything else, and this (not eating) was the only thing I was good at." No one was going to take that away, she says.
During her treatment there, she and three other patients were filmed as the basis for the documentary, "Thin," which premiered at the Sundance Film Festival in 2005 and aired on HBO a year later. At the time the film was shot, Guillory was a 25-year-old psychiatric nurse who had managed to finish college "on time" despite the feeding tube.
One professor concerned about her weight told her the faculty "would rather go to your graduation than your funeral," and fellow students in the hospital constantly expressed their concern. "I was like, 'I'm fine.' "
Her determination to resist help endangered her life several times, maybe no more markedly than when she left Renfrew and promptly lost 17 pounds.
"Perfectionism is one of the keys to this. ... If I wrote the best paper, graduated on time, lost this amount of weight — somehow I thought if I could get all that together, everything would be OK. I did all that, but it just got worse. ... To get to perfection, I would have to keep losing weight until I died."
She was slowly working toward recovery when the film debuted, but the attention it brought led to a major relapse. She had Facebook contacts from all over the world sending messages about the film. The pressure of meeting their expectations felt like too much.
"People would write me and say, 'You're such an inspiration,' at the same time I was sitting in my house, addicted to tranquilizers and saying, 'How am I an inspiration?' "
A friend she met at Renfrew, who also got treatment there, had come to Utah to watch the film debut at Sundance. They met and caught up on each other's lives. Shortly afterward, the friend killed herself after a losing battle with anorexia.
"I remember thinking 'That's what I'm going to do if I don't get better.' " The shock sent Guillory to rehab, where she was weaned off the same tranquilizers her friend had overdosed on.
Now in recovery and looking back, "I realize now that I am the only person who determines what is perfection is for me."
Those with anorexia, and their loved ones, "absolutely need to understand the full complexity of this: everything from the mental part, to the physical implications, to the emotional and psychological pieces that ties into their thoughts," Reel said.
Having treated patients in both residential and outpatient settings, she knows one of the first things clinicians must learn is "what benefit the disorder provides. Once you understand what the motivation is, you can better understand why it is so hard to move away from that behavior."
"If it becomes part of someone's identity, they can't imagine life without it," she said. "So much of their time has been dedicated to control of every calorie, or exercise in some cases. ... It's filled their time. So who are they without it?"
While the majority of those who actually seek treatment are white, upper-class teenage females, the disorder "does affect every possible corner of the human population," Reel said. Though some treatment regimens have been focused mainly on young white females, that's changing as "more treatment facilities are recognizing that people just don't 'age out' of eating disorders."
With treatment, "recovery is possible for everyone," she says, noting there's a growing flexibility by care providers in how families pay for treatment. "They're recognizing that not everyone can do five months of inpatient treatment at $1,500 per day," so intensive outpatient therapy is becoming more common.
Parents often feel like the enemy when a child resists help, but they "should play a supportive, listening role." As part of National Eating Disorder Week, SPEAK is hosting panel discussions and other events at the U. (see accompanying box to the left), including a panel designed to help family learn how to approach the subject. "In one word, I would say "delicately" and "directly." It's better to say something than not to say anything at all, but the way you say it does mean the world."
Today, Olson and Guillory lean on each other — rather than on the continued temptation to resist food — as one way of coping.
Both are amazed and "so embarrassed" at the investment of time, money and energy it took to begin the road to recovery. "It took being threatened many times with (being committed) to the state (mental) hospital," Olson says. "Even in the middle of it, it's embarrassing. It took me 10½ years to graduate from college."
They regret what has become near financial ruin for their families, along with the time and energy they plowed into denying, hiding and perpetuating a disorder, of which long-term consequences have yet to be manifest.
For more than two years, they have pushed the other along in a kind of emotional tango, each threatening to withdraw support if the disorder began to escalate. "I would be dead had she not said that stuff" and been so hard on her, Olson says.
Guillory nods in agreement. "This is the hardest thing I've ever done. I'm now off tranquilizers, and I don't have an eating disorder. It's the worst anxiety ever. I don't have anything else to hang onto but healthy coping behaviors. I know that works, but it doesn't give me the same satisfaction as not eating."
Olson has been through hospitalization and treatment so many times, the illness came to define her identity.
"I knew how to be sick. ... But once I start gaining weight, what if people expect stuff from me? I will have to be responsible, and that scares the hell out of me. I couldn't deal with that."
So they step cautiously into the future, determined to work on it, one day, one hour, sometimes one minute at a time.
Together, they say, for as long as it takes.
e-mail: carrie@desnews.com