Women create support group

by Elena Rozwadowski

>Editor’s Note: This article is the first in a weeklong series that examines eating disorders at the University. Tuesday’s article focuses on anorexia athletica.

It’s 6:31 Monday night. Four women are sitting on the steps in front of the University Lutheran Church of Hope, one of them smoking. A fifth shows up a few minutes later to let them in, carrying a paper bag with a coffee maker, Styrofoam cups, cinnamon and vanilla syrup.

The women walk through the musty church to a large chair-filled room in the basement. One plugs in the coffee machine and, as it sputters on, the remaining four make a small circle of chairs in the middle of the room.

While the coffee drips, the women talk about their goals for the past week. The first had promised not to eat in front of the television, a promise not kept. The second tried to stay positive and keep doing “what worked.”

The third promised to make a doctor’s appointment, something she admits she didn’t do while she picks at the tattoo on her foot that reads “Hope” in Hindi. The fourth just wanted to get through the week without throwing up.

“I play the ‘tomorrow I’ll do things differently’ game,” she said.

The fifth girl, one of the more recovered members of the group, just promised to take a break from her ever-growing schedule.

Now that her nonprofit organization is taking off, University alumna Joy Nollenberg has a reason to want a break.

About five months ago, Joy and University student Jessica Barker started the Joy Project, an eating disorder support network that brought these five women and several others together.

Although the Monday night support group is an important part of the project, it is just one of many resources Joy and Jessica put together for people struggling with eating disorders.

“There’s a point where people do want help,” Joy said. “We are support for people who don’t get it anywhere else.”

A personal touch

Both Joy and Jessica struggled and are still struggling with their own eating disorders.

“We don’t want people to go through what we went through,” Jessica said. “All I really wanted was for someone to sit down with me and tell me what to do.”

Joy, a 2004 child psychology graduate, and Jessica, a psychology senior, are not therapists, but said they can offer support and help those who need it find the proper treatment program.

“Making yourself throw up is never normal,” Jessica said.

Ultimately, they want to take the focus off the “thin-spiration” stories that people usually see every day.

“We want to focus on what it’s like to get better,” Joy said. “And, believe me, it gets worse before it gets better. But it does get better.”

Joy’s story

During her undergraduate career at the University, Joy spent her time on the ice as a hockey cheerleader. Before every game, she had to go through a checkup with the team doctors to make sure she was stable enough to perform.

Joy had been struggling with anorexia for more than 10 years.

Shortly after her graduation from the University, things started to go downhill. Her roommates no longer could handle living with her and kicked her out of their apartment.

Shortly thereafter she moved into a house of crack addicts because she thought she had nowhere to go, she said. All the while, her food restriction was getting worse.

“It’s hard to be at a point where there’s no one on your side,” she said. “I always thought basic humanity would dictate for someone to step in. But I really didn’t think people would take the extra steps to make it more difficult.

“After that, something snapped. I felt like anything I did would be better than what I was doing.”

Joy found a small apartment in downtown Minneapolis and got a job at a preschool. She tried to force herself to eat regular meals, just so she could keep up with the energetic children at work.

“I had lost all concepts of what was normal,” she said. “I tried to judge my food intake by what others were doing.”

Her mood would change drastically with her calorie intake, she said.

“When I started eating, I would rage,” she said. She went through periods of extreme manic-depression and drinking.

“I think everyone experiences a little bit of everything, a little bit of drinking, a little bit of cutting,” she said.

While she was dealing with her recovery, Joy was still cheerleading through spring 2005. The team doctors tried to find places for her to get help and they finally got her into a research study at the University, a self-help treatment program.

“The self-help program was exactly what I needed,” she said. It was a challenge at first, she said, but eating on a schedule eventually got easier and her energy levels started to increase.

Joy started looking for jobs and doing volunteer work. “I tried filling up my life with good things to distract me,” she said.

In her recovery story on the Joy Project Web site, Joy attributes her initial recovery to the children she was working with at the preschool because they were happy to see her every day, no matter what she looked like.

“It was really a powerful thing to realize that through the unbiased eye of a toddler, my body was irrelevant,” she said. “My soul was what mattered.”

Although she calls herself “recovered,” Joy admits she still faces day-to-day challenges with her eating disorder.

“It’s amazing how much being hungry can trigger the eating disorder again,” she said. “I feel like I’m finally at a point where, if I feel ‘fat,’ I’m able to tell myself that it’s OK.

“The ultimate goal is to not be afraid of anything.”

Jessica’s story

Since her recovery started two years ago, Jessica tried to approach her eating disorder with a sense of humor.

“We all know how serious it is,” she said. “Part of recovery is being able to look at (the eating disorder) and say, ‘This is ridiculous; can I laugh at the things that I’ve done?’ “

She can laugh now, but things were not always funny. Jessica started to have body-image problems when she was in fourth grade. As she got older, she struggled with anorexia and bulimia. She carried her problems with her to the University.

“I first told someone I had an eating disorder when I was 19, but my doctor told me I wasn’t thin enough (to be diagnosed),” she said. “It got out of control after that.”

It was not until a few years later that her recovery started. One of her psychology professors pulled her aside and told her he noticed something was wrong.

“I thought no one knew, but apparently he had been picking up on it all along,” she said.

He approached her because he noticed she was having trouble doing her work in the research lab.

“My brain was starving,” she said. “I had been starving for so long at that point, I couldn’t even think. I couldn’t read a book, I couldn’t do anything.”

For the next two years, she was in and out of the hospital, but she was never treated for her eating disorder. One time, she said, she was suicidal just so she could get into a hospital because doctors treated only the symptoms of the disorder.

“Finally, I just decided I didn’t want to live like that anymore,” she said.

Jessica said she wanted to make a change before things got worse.

“Rock bottom in eating disorders is (death),” she said.

Living alone was difficult, so Jessica moved in with her aunt, uncle and two younger cousins before entering a formal treatment program.

“I started living with a family again,” she said. “They would just make me do things with them.”

After going through six inpatient programs and several outpatient programs, Jessica decided she needed to do something different.

“I’m at a point where I know about all this stuff,” she said. “I just have to go do it.”

Jessica said she is getting better, but every day is still a battle.

“It’s a lot of starting over,” she said.

Although she sees a therapist every week and a nutritionist a few times a month, making a regular doctor’s appointment still is difficult.

“I don’t think anyone goes out there and says ‘I really want to be done with the eating disorder’ until the point where they’ve started doing it,” she said. “I just have to make myself do it some days.”

Coming together

When Joy and Jessica met, they became friends instantly. They were both working on their own eating disorder projects at the time, and decided to combine forces and create the Joy Project.

In the past five months, the project has grown. They have gained affiliations with national eating disorder associations and the Career and Community Learning Center at the University. They also are registering to become an official student group.

After a fundraiser at Pizza Nea in Uptown, the group had enough money to file for nonprofit status, which will allow it to apply for national grants to help the project expand.

Since the project was established in January, many people have come forward to volunteer, many of whom have struggled with an eating disorder themselves.

Volunteer coordinator Lisa Stegman struggled with a binge-eating disorder through most of her adolescence and part of her adult life.

“For me, food is alcohol, it’s heroin and I’m an addict,” she said. “I just can’t understand not eating.”

For her, the project was a way to help others and herself.

“Treatment didn’t help me, people did,” she said. “We all have a lot to help each other.”

Marketing coordinator and University alumna Andrea Medcalf said she signed up to help because she liked the idea of a “grassroots student organization that can get things done.”

“We’re just there to listen,” she said.

She said she hopes the discussion about eating disorders eventually will open on a national level.

“There needs to be more groups like the Joy Project to promote this idea,” she said.

What happens next

Joy and Jessica said they have big hopes for the group, but both know it won’t be easy.

“People are going to doubt us before they believe us,” Joy said. “We just want to get people talking about it.”

One area they said they would like to start the conversation in is the medical community.

“General practitioners are uneducated and the diagnostic criteria (for eating disorders) is doing harm,” Jessica said.

Jessica said she would like to see a change eventually, which is why the group is working to promote policy and legislative changes.

“We want to see people become active participants in (eliminating) eating disorders,” she said.

One long-term goal is a “sober house” for eating disorders, a place where people can go for some extra support, whether they’re in treatment or not.

“When you go into treatment, you’re taken out of your current life, away from all of the things that trigger the eating disorder,” Jessica said. “Then they kick you out into a healthy world at the most critical point.”

Although medical professionals agree different types of treatment work for different people, Carol Tappen, the Eating Disorder Institute director of operations, said she is concerned about the group because some of the volunteers are still recovering.

“It concerns me if somebody’s still actively into their eating disorder,” she said. “What I’m afraid they’re unintentionally doing is taking the focus off themselves by reaching out and putting all their time and energy into caring for others.”

Tappen said she also is worried the support group might be making the eating disorders worse with the group discussions.

“I think it’s great that people can get support any way they can get it,” she said. “You want to make sure it doesn’t backfire in any way.”

Joy and Jessica said they make it a point to tell people they are not professionals and are there as a resource.

“Support groups can be a problem,” Joy said. “We just want people to be honest about where they are and focus on what they need to do to get better.”