The typical eating disorder narrative follows a predictable arc: A person's restrictive eating or bingeing—with or without purging—gets out of control, they struggle, and then they seek help. But then what? That's not the end of the story. Eating disorders aren't simple fixes; it's not like you take a course of antibiotics and then the problem ceases to exist.
Eating disorders are complex amalgams of causes and symptoms, expressed uniquely in every person who has one. Couple that with a society that fetishizes eating "clean" and stunting on Instagram, and you have to wonder if anyone is ever really free of their disorders. One camp says they can be totally transcended, while another takes more of a monitoring approach, considering the disorders as an issue to be minded and tended to for life.
"There's definitely a range of ways people talk about recovery from eating disorders," says Claire Mysko, chief executive officer of the National Eating Disorders Association. "There are some people who talk about recovery as something that they're managing—the thoughts are there, they feel that they'll always be there. It's a daily management. There are other people who feel that true recovery is possible, that it's possible to live a life free of these obsessions."
Mysko counts herself in the camp who finds that total recovery is possible. She received treatment early for her own eating disorder and considers it a thing of the past. Treatment outcomes are better when they happen earlier, she says, but "recovery is possible at any point." Eating disorders, she says, affect brain chemistry, so the longer a person has been active in their disorder, the harder treatment may be.
It's also hard to quantify recovery. A person may no longer be dangerously underweight, or may no longer be purging, but they may have a relationship with food that interrupts their ability to live normally. Or they may still meet diagnostic criteria for illness but may have changed their mindset and be moving toward improved health. "If they've made that shift to get help," Mysko says, "I wouldn't want to put parameters around their experience."
Jim Gerber is the clinical director of St. Louis-based Castlewood Treatment Center. He says the average length of treatment for eating disorders requiring a higher level of treatment—like residential treatment or being in a day program—is seven years. That doesn't mean seven years in intensive daily programming, but rather seven years of working with a psychiatrist, a therapist, and a nutritionist while living life normally. It's a lasting commitment to health and recovery.
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"Some people subscribe to more of an AA model, that 'I am always in recovery and I have to always be somewhat mindful,'" Gerber says. "'I may not be going to therapy but I know that I can't miss meals consistently, or I have to notice if I am using food for emotional soothing.'"
To some extent, a 12-step model of addiction recovery, which holds that people with addictions can have a daily reprieve contingent upon their continued attention to the problem, seems like an apt comparison. But 12-step recovery for drugs and alcohol specifies abstinence. It's perfectly feasible to live a life without ever consuming bourbon or cocaine again.
"With an eating disorder, you have to figure out a relationship with food and eating," Mysko says. "It's not a question of abstinence in that way." There's also a powerful symbolic aspect to food and eating that's not true for other addictions, Gerber adds. "Food is connected to socializing, to providing for myself, to pleasure," he says.
Seamus Kirst is intimately acquainted with how the two models intersect. He's in recovery for an eating disorder as well as for substance abuse. "Being in recovery for an eating disorder has been more challenging," he says. "It's easy to say, 'I'm not going to drink or take Xanax.' But you still have to eat and you still have to exercise. If you stop paying attention, you might start slipping back a little bit."
Kirst says that he's always cognizant of his recovery. "Just being conscious of it all the time is really important," he says. "It sounds exhausting but it's less exhausting than falling back into a full-fledged eating disorder." Kirst takes his management further than Gerber's seven years.
"Any time you have any type of addiction or mental illness, it's important to plan on being in therapy for the rest of your life, which is a good thing," he says. He sees a therapist once a week and a prescribing psychiatrist monthly. "There are a lot of people who would see that as punitive, or an indication that you're not able to handle your own life," he says. "I see that differently."
Jason Deng takes a different view. He's been in recovery from disordered eating that arose around age 11 or 12 since his senior year of high school. "Generally, my mindset is that I feel liberated from a lot of the rituals that I used to have when I was really struggling with it," he says. "It's not something I think about 24 hours a day. That was definitely the case when I was anorexic."
He takes an antidepressant and pays attention to what he eats, and going to the gym is non-negotiable if he wants to feel peaceful. He described a recent family vacation on a cruise ship with a subpar gym. "That bothered me a bit, not to the point where it was debilitating, but not where I wanted to be," he says. "If I don't go to the gym for a while, I kind of find myself relapsing into some of those behaviors."
Even among people who feel that their eating disorder is something they've fully beaten, traumas like divorce or job loss can trigger a return to the disordered behavior, Gerber says, adding that he's wary of saying that either viewpoint is perfectly correct. "I'm for whatever works. I do think that what is important is for each person to learn to respond to their own needs, rather than outside obligations."
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