Students, community advocates seek stronger support network for eating disorder recovery

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Editor’s note: If you are struggling with disordered eating contact the National Eating Disorder Awareness hotline by calling 800-931-2237 or by going to https://www.nationaleatingdisorders.org/.

During the fall semester, a neutral, off-white flier made its way across the Syracuse University campus. Sage green leaves on either corner were paired with a simple, direct headline — “Disordered Eating Support.”

When Tracy Mergler, the founder of the Safe Space Organization, hung these fliers, she didn’t think much of it, hoping students would respond to the QR code and express interest to help promote her new non-profit organization, Safe Space. Mergler said what she didn’t expect was that she needed a permit to hang the flier.

To Mergler, she didn’t understand why seeking to support students required a permit, because Syracuse University was missing the bigger picture.

“We actually got a large number of people to respond, which showed me very clearly the need,” Mergler said. “People would accept the help if it was there, but it’s not. At least not enough.”

Every year, the National Eating Disorder Association recognizes National Eating Disorder Awareness Week (NEDAW) from Feb. 27 to March 5, a week designated toward destigmatizing and empowering individuals with eating disorders and promoting recovery.

The theme of NEDAW 2023 is C.A.R.E, which stands for “continue the conversation, act early, strengthen recovery and end the cycle.” As students, experts and providers alike examine SU’s approach to eating disorder recovery and the treatment landscape of central New York, they argued that these pillars are not reflected and that SU can, and must, do more.

Using her own recovery experience as a catalyst, Mergler founded the Safe Space Organization, a nonprofit mental health community center located in Syracuse. She explained that when her bulimia reached its tipping point, her loved ones held an intervention and it made her realize it would be easy for someone to slip through the cracks if no one recognized the signs of an eating disorder, especially on a campus the size of SU.

“What happens when you’re already struggling with an eating disorder, your body is already weak,” Mergler said. “So then you add college things — drugs, alcohol, sex — and it skyrockets you to the next level.”

Carolyn Hodges Chaffee, founder and CEO of the Upstate New York Eating Disorder Service, said Mergler was “in crisis.” Chaffee said the largest patient demographic the Upstate New York Eating Disorder Service sees is college-aged individuals. She explained that patients in crisis typically receive greater support and their eating disorders are deemed more severe.

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But in her 30 years of experience as a certified eating disorder specialist and registered dietitian, Chaffee explained she’s constantly seen these metrics as arbitrary and skewed.

“If I have a patient that’s a ‘normal body weight’ that tells a doctor that they have an eating disorder, the common response is, ‘just eat a little bit less or more, but you look fine,’” Chaffee said.

At SU, students have experienced similar interactions with counselors at the Barnes Center at The Arch who work in Eating Disorder Support, with many saying that their demand for support is met with limited resources and hesitancy, given their weight or the frequency of episodes.

Shannon Feeney-Andre, SU’s executive director of communications, said in an email that the Barnes Center refers students to treatment resources in order to help them access greater care as part of its treatment program. Though Chaffee explained this is positive, when counseling centers like the Barnes Center are overwhelmed by patient load they won’t be able to serve all students in need, she said.

MJ Gray, a senior studying geography, policy studies and environmental sustainability policy, explained that though the resources she was given in eating disorder support were helpful, they only sought to treat her in a surface-level way, she said.

“I still wasn’t calling (my eating disorder) what it was, and neither did they. They were perfectly fine to not help me really,” Gray said. “They kind of just passed me off to the nutritionist.”

Another student, who is earning her master’s degree in advertising at SU and preferred to remain anonymous, called eating disorder support when she was a freshman. On the phone, the student answered intake questions and was told there was a long waitlist to get an appointment with the center. However, because she was in crisis, the student got an appointment.

“It took me a few years to realize that they took me in right away because they deemed I was in crisis,” the student said. “But I didn’t get a dietitian until the following semester, even though they said I was in crisis.”

The student committed to the recovery program and went to the school-provided therapist but, after a few sessions, the message she was receiving began to change. Instead of helping her with an eating disorder, the student’s therapist told her she was just in a “phase” and after a few more months, the eating disorder support center graduated the student from the program.

Naturally, the student said, she relapsed. So, she went back to eating disorder support at the Barnes Center.

“I was so angry and resentful to be back there, I wasn’t engaged at all and I remember her saying to me ‘you know, your heart could stop,’” the student said. “I was like ‘yeah, you sure about that? Because you told me this was just a phase.’”

The counselor who worked with the student has since left the university and the student said she doesn’t believe all students who utilize eating disorder support have negative experiences. But the student said SU’s treatment model is lacking a multidisciplinary approach to eating disorders that accounts for the complex mental and physical relationship that an eating disorder inherently presents.

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In her email, Feeney-Andre explained the Barnes Center employs a multidisciplinary approach designed to recognize and treat eating disorders and work on the specific needs of each student.

But in Gray’s treatment experience, she said she felt her mental and physical recovery were treated separately, only being recommended to a nutritionist instead of a therapist to help get to the root cause of her eating disorder and not being offered alternative forms of support.

That support can come from other places besides clinical providers, said Holly Lowery, chief operating officer of Ophelia’s Place. Located in Liverpool, Ophelia’s Place is another non-profit like Safe Space that incorporates a multidisciplinary approach by providing support services, connection to treatment, harm reduction resources and support groups to anybody impacted by eating disorders and body oppression. Lowery said patients are urged to have compassion for themselves across all of their programming.

Lowery explained that, for many people, eating disorders function as a protective shield. Recovery can feel vulnerable for someone who is stepping out of their armor for the first time, especially a young person, she said.

“We know restricting or binging and purging isn’t what we want for ourselves long term. No matter what, you are worth more than that,” Lowery said. “But it’s okay to still be in the messy middle of it.”

Since Mergler found comfort in alternative modes of therapy during her time in residential treatment, she prioritized them as she developed Safe Space, she said.

Both women emphasized that recovery is a personal journey, and different modes of therapy and treatment will resonate better with different people solely based on their unique qualities. They support an interdisciplinary approach instead of a one-size-fits-all one, and believe that fewer students at SU would be struggling if more of these resources were readily accessible.

But it’s not a conversation for SU to have during NEDAW and then put away until the following year, Gray said. Instead, she believes it should be a constant conversation, and awareness weeks like NEDAW shouldn’t just be performative measures.

“This is an issue that a lot of college students are dealing with, especially young women, and it’s really hard to ask for help,” Gray said. “Even if they just had a little more training, maybe I wouldn’t feel so alone.”

The anonymous student said it isn’t the responsibility of students in recovery to be the voice of eating disorders on campus.

“I don’t need to be a champion of my own cause. You’re a champion of your own cause just by existing,” the student said. “The school doesn’t need to have an event or make some bullsh*t post like, ‘it’s Eating Disorder Awareness Week’… If I was deemed to be in crisis, I shouldn’t have had to wait three months to see a dietitian.”

Mergler said that as daunting as recovery may seem, the first step begins with just three little words — “I need help.”

From there, she said it becomes one day, one hour, one minute at a time — the fight to reclaim worth and power — but a fight that does not happen in solitude. With a multi-disciplined, clinical support team and personal alternative modes of therapy, recovery is real, possible and happening every single day, she said.

“Human connection fights eating disorders. So that is the first step toward recovery,” Mergler said. “You are enough. You shouldn’t ever have to face your fight alone.”