Joy Nollenberg, founder of the Joy Project in Minneapolis, can vouch for the lack of awareness surrounding eating disorders. In February 2006, Nollenberg founded the nonprofit program following her own struggles with anorexia.
No matter where she went, no one would offer her help. Kicked out by her roommates and no longer attending work or classes, Nollenberg decided to take things into her own hands.
A star student in school, as well as a ballet dancer, cheerleader and figure skater, Nollenberg outwardly seemed successful and satisfied with her teenage life. Yet behind her cheerful image was a teenage girl with a mother Nollenberg referred to as “the personification of Dr. Jekyll (and) Dr. Hyde.”
“Personally, I think the single biggest factor in the development of my eating disorder was how my mother’s extremely erratic behavior influenced my sense of self,” Nollenberg said. “I didn’t know this as a child, but as an adult I’ve come to realize that her behavior (was) typical of people with Borderline Personality Disorder.”
Nollenberg’s mother rapidly fluctuated between the “good mom” who loved and bonded with her daughter, and the “bad mom” who hit and ridiculed Nollenberg when she was not behaving “properly.” Nollenberg learned to fret over every flaw, physical or otherwise, hoping to keep her mother happy.
“I learned that acceptance is fleeting,” Nollenberg said. “Acceptance only resulted in you letting your guard down and showing your vulnerabilities, which would only be used against you later when the other person was upset with you. So yes, I absolutely learned that survival required elimination of every potential visible flaw. And, by God, if the size of my thighs was a visible flaw that had been pointed out, I was going to eliminate it.”
Nollenberg’s anorexia developed to the point that she was only consuming between 100 and 400 calories per day, until the doctors on her college cheer team informed her that she would die if she did not receive treatment.
“I literally had no choice,” she said. “I just couldn’t survive and be eating-disordered anymore.”
Unfortunately for Nollenberg, her insurance company did not cover treatment for eating disorders. No matter where she went, no one would offer her help. Kicked out by her roommates and no longer attending work or classes, Nollenberg decided to take things into her own hands.
“I guess I felt like, at that point in my life, everyone had abandoned me. I was alone,” Nollenberg said.
“And then, the ‘me’ in me got good and pissed. I mean really, really, really pissed. I thought of all the other people in the world who just went about their daily lives without a care in the world, doing whatever the hell they wanted like it was no big deal. And I thought, ‘Well, nobody ever bothered to ask me if they were ‘allowed’ to exist. Nobody ever asked me if they were allowed to make mistakes, to take up space, to step on my toes, or to just be. And then I figured, well, if they don’t need permission, then neither do I.”
Nollenberg found a job at a day care center and started to increase her caloric intake. She moved into her own apartment in downtown Minneapolis. Yet her struggles with anorexia were long from over.
“The best analogy here would be to the process of drug or alcohol addiction,” she said. “The first step is to go through physical withdrawals from the drug—that’s similar to restoring regular eating behaviors (or) restoring weight. But it is only after a person has endured the withdrawal process that they can truly start to do the hard work of recovery. After detox from drugs, a person might then begin an intensive rehab program where their mental health is the focus. But that’s when an eating-disordered person is often dropped to a lower level of care. That’s also where they are most likely to relapse.”
In Nollenberg’s case, relapses of her restrictive behavior alternated with vicious cycles of binge eating and guilt as she convinced herself that she needed to eat more in order to recover. Some days, she would eat peanut butter by the jar, and others she would furiously exercise to compensate for her binges.
“My moods were insane. The mood swings made me feel like I was losing my mind,” Nollenberg said. “Sometimes when I started eating, I’d get … high. Like literally, ecstatically high. But after eating, I’d flip to the other end of the spectrum. One particular night, I remember feeling such tremendous anxiety that I found myself turning all my lights off, huddling in a corner with my arms around my knees, rocking myself in an attempt to comfort myself.”
Desperate to end the cycles, Nollenberg joined a research study on binge eating in which she was given a self-help book, which helped her to regularize meal times and sizes. As her body learned how to readjust to larger amounts of food, Nollenberg found herself feeling ravenous and gaining weight rapidly.
With the aid of months of recovery and the support of her boyfriend, Nollenberg learned to enjoy all aspects of life, including food. Her weight gain slowed and gradually reversed as her metabolism recovered.
However, while recovery had worked out well for Nollenberg, she knew that this was not the case for many other people with eating disorders whose insurance companies did not cover treatment. In response, she founded the Joy Project.
“The goal of the Joy Project is to fill in the gaps caused by inadequate access to eating disorder treatment, and create a dialogue between researchers, treatment professionals and those affected by eating disorders in order to foster a better understanding of how to help people not only recover, but remain recovered,” she said.
Through the Joy Project, Nollenberg set up weekly support groups, shared her history with anorexia and binge-eating disorder in a compilation of stories about recovery called “You Are Not Alone, Volume 2,” and talked to members of Congress to increase eating disorder and mental health awareness, especially regarding misconceptions about victims.
“Until recently, the field has viewed eating disordered individuals as being ‘crazy’ or (as having) ‘flawed brains,’” Nollenberg said. “My hope is that the conversation about eating disorders will change and expand to cover the full spectrum of eating disorders.”