The Silent Struggle

Author: Daphne Saloomey and Christopher Parker

Kiera Russo called her first few months as a freshman at Holy Cross “blindly euphoric,” believing that she had finally overcome a fear and shame that had wracked her for years.

But in just a few days, all her progress collapsed under the weight of a few words from friends and family.

 “I came home for Thanksgiving break my first semester freshman year,” she said, “and nearly every single person that I encountered while I was home commented on my unintentional weight loss. They just said that I looked smaller, looked thinner. And then all of a sudden it was like, here we go again.”

Russo is one of hundreds of students on this college campus alone facing the same struggle — eating disorders. According to The National Eating Disorders Association, approximately 24 million Americans suffer from eating disorders, 95% of which are between the ages of 12 and 25.

As the school year draws to a close, the unique challenges — and in some cases benefits — of recovering in the era of COVID-19 are coming to light. Therapy through video calls, dining hall anxiety and restrictions on exercise — for those with eating disorders, routine moments of college life can bring people like Russo face to face with their illness.

 

A Growing Problem

Eating disorders are on the rise on college campuses across the country. One longitudinal study conducted over 13 years at the University of California, Santa Barbara, found that the rate of eating disorders had risen from 7.9% to 25% among college aged men and from 23.4% to 32.6% among college aged women, raising the question of whether there is something specific about college or college culture that contributes to developing an eating disorder.

“Eating disorders often kind of take hold at times of transition,” said Val Staples, an eating disorder specialist who has been working at the University Counseling Center (UCC) for 20 years. “Like in adolescence when the body starts changing or, you know, the transition from home to college where everything is different, everything is new.”

According to Christine Conway, director of the UCC, over the last three years, the center has seen between 1,800 and 1,900 students annually, 12 to 13% of which were identified by their counselor as having eating issues or body image concerns.

“You’ve got a lot of Type A personalities, overachievers, perfectionistic type individuals on this campus and so that kind of lends itself to having a fair number of students that struggle with eating disorders,” said Jocie Antonelli, who has served as a registered dietitian for Campus Dining for 26 years.

For 15 years, the university has had an integrative team in place — consisting of dietitians, counselors and physicians working in University Health Services — to support students struggling with eating disorders.

“The fact that we do have a nutritionist here and a physician, that we have an eating disorders treatment team that’s multidisciplinary, speaks to the need that we see on campus,” Staples said.

Increased attention to food and eating habits can begin early in students’ college careers, according to Antonelli.

“I meet with so many students, especially at the beginning of their freshman year, because they hear about the 'freshman 15' and then there’s this fear that there’s something automatic about becoming a freshman on a college campus that you’ll automatically gain 15 pounds,” Antonelli said.

And while people do tend to gain weight when they get to college, it’s not because there’s “something automatic or magical about being a college student — it’s a combination of things,” she explained. Lack of portion control at self-serve dining hall stations, alcohol consumption and late night snacking while studying can add up, Antonelli said.

Fluctuations in weight as a result of beginning one’s college career do not necessarily mean an individual will inevitably develop an eating disorder, said Antonelli, but there are other facets of the college experience that contribute to making it a vulnerable period.

“One of the challenges at a university setting is that you’re just with people all the time,” Staples said. Notre Dame specifically “is an environment where students compare a lot, whether it’s how much sleep they got, their grades, they talk a lot about how much they exercise,” and while “that doesn’t cause an eating disorder, it can certainly exacerbate it.”

 

What is an Eating Disorder?

While eating disorders might be more ubiquitous than most people perceive, there are still a host of misconceptions that shroud them, according to Antonelli.

“I think a lot of times people think about eating disorders based on what someone looks like, you know, either extremely underweight, or overweight, but it really is a disorder that affects so many aspects of their life,” Staples said, “It can certainly complicate or impact your physical health, but most of the time, people come into treatment because they are just consumed with thinking about food.”

Eating disorders are mental illnesses, and because the physical impact they have on each individual varies, researchers have found that some people do not see them as serious diseases. A January 2018 study conducted by Ipsos Public Affairs found that approximately 40% of Americans believe that eating disorders are just a cry for attention and 13% believe that they are not serious, but rather a lifestyle choice or about vanity.

But Antonelli emphasized that “having an eating disorder is no different than having type 1 diabetes, or having a heart condition or having kidney disease.”

Much in the same way as other health conditions, eating disorders can take a physical toll. In fact, eating disorders are technically the most lethal of mental health conditions; the Eating Disorders Coalition reports that at least one person loses their life as a direct result of an eating disorder every 62 minutes.

Aggie Laboe, a senior who struggled with an eating disorder predominantly during her sophomore year, said that while receiving treatment at a residential facility was one of the most difficult things she had ever done, it saved her life.

“I honestly am not sure if I’d be alive today if I hadn’t gone,” she said.

Staples said another common misconception about eating disorders is that they only impact women.

While “certainly the majority of those who present with eating disorders are female,” she said, “eating disorders can affect anybody, and certainly both genders.”

Antonelli said that while the majority of students with eating disorders she works with are women, she has worked with men, too. She said men often can present in different ways than women.

“I see an obsession with muscle mass, six pack abs, decreased body fat, that’s kind of what I see the men just obsessed with,” she said.

Antonelli added that it can be difficult to identify men who are focused on these outcomes to an unhealthy extent because it has become societally normalized for men to prioritize extreme fitness.

Staples said that many people feel that they can spot an individual suffering from an eating disorder simply based on appearance, but it’s not as simple as that.

“Some people who have really serious eating disorders, to other people, might look like they’re healthy,” said Staples. “And sometimes even the way they eat, in terms of making their food choices, and their exercising, to the outside person might look healthy, but you have no idea what’s going on in that person’s head and how they feel about that, and how it impacts how they see themselves.”

Eating disorders may manifest themselves in different ways among individuals, but three disorders are the most common: binge eating, bulimia and anorexia.

Binge eating disorder, which is the most common eating disorder in the U.S. according to the National Eating Disorders Association, is characterized by eating large amounts of food, often quickly and to the point of discomfort.

Those who suffer from bulimia tend to engage in a cycle of bingeing and then employing behaviors to compensate for the binge, such as self-induced vomiting or purging, fasting between binges and excessive exercise, according to the association.

Anorexia has to do with the restriction of eating. The association said the disorder is characterized by an abnormally low body weight — although not all who suffer from anorexia are underweight — as well as an intense fear of gaining weight and a distorted body perception.

Antonelli explained that although eating disorders can affect all individuals, research has found that some people are genetically predisposed to developing them — but not all who are predisposed necessarily develop one, as environment is a factor, too.

“There can be people that have the genetic tendencies, but they never develop an eating disorder, but you can have people that are genetically susceptible, and then the environment is ripe and everything kind of lines up, and then they’ll develop it.”

Dr. Cynthia Bulik, who graduated from Notre Dame in 1982, is now the founding director of the Center of Excellence for Eating Disorders at the University of North Carolina medical school. She also spends half her time working at the Karolinska Institutet in Sweden. Her research focuses on understanding the biological circumstances of eating disorders instead of the purely social factors.

“It is really important to acknowledge that it is not genes OR environment, or nature OR nurture,” Bulik said in an email. “It is clearly both. Developmental challenges associated with college and environmental factors can just trigger/activate underlying genetic predispositions,” she said.

Living With an Eating Disorder

When junior Grace Scheidler began her freshman year at Notre Dame, she felt like she had hit the ground running. But not too long into the semester, around fall break, some familial issues arose, marking the onset of some difficulties for Scheidler.

“I had a lot of family stuff going on that was very much outside of my control and, at the same time, was dealing with a first, more serious relationship and classes getting harder, so a lot of things were building to the sense of ‘this is not in control,’” she said. “And that kind of just spiraled as first semester ended.”

Scheidler described that while everything in her life seemed to be outside of her control, “food and exercise were an easy area of life to control to compensate for the lack of it otherwise.”

Russo, meanwhile, developed her eating disorder in high school and first confronted it during her senior year. She said that she spent many years keeping her body anxiety a secret, ignoring that she had a problem.

“It was very much a silent struggle, partly because of internalized shame, partly because of the stigma externally surrounding eating disorders,” she said.

Laboe, who struggled with an eating disorder during her sophomore and junior years, echoed the idea that desiring some measure of control over her life contributed to the development of her eating disorder.

“Food, and exercise, and controlling those two things — or feeling like I was controlling those two things — became a way for me to cope with all the other feelings I was experiencing, just like, of the new environment, and not knowing what I was going to do with my life and navigating new social relationships,” said Laboe.

Scheidler said that exerting this sort of control was “comforting in a superficial sense.”

“Knowing the exact caloric content on your plate, it does, surface level, kind of quiet the noise of the anxiety. It takes one unknown aspect away, and that is comforting,” she said.

For both Laboe and Scheidler, many activities that other students don’t think twice about became unbearably hard.

“It really impaired my ability to relate to people and just go about my day to day life, like in school and in my extracurriculars,” Laboe said, “I just didn’t have extra energy to give and every single thing was so draining — my walk to DeBart for class was so draining, but then I would force myself to work out.”

Scheidler struggled a lot at mealtimes. “I just remember going to the dining hall would literally bring on a panic attack, just because I’d go in and feel like I had to pick the absolute healthiest thing with crazy rules guiding what I was able to eat.”

Antonelli acknowledged how stressful mealtimes could be for students struggling with eating issues. She said it is the reason why she decided to leave caloric information off of the cards labeling the meal being served at each dining hall station.

“I don’t want you to be forced to look at that information,” she said. “Because for people with eating disorders, there’s enough anxiety with coming in to eat your meals to begin with, and if you were forced to look at those numbers, I’m afraid these students would never come in, period.”

Even during a normal year, eating in the dining hall can cause stress and panic for a student with an eating disorder. However, Staples said that COVID-19 restrictions only heightened that negativity for some of her patients.

“They’re not able to serve themselves, so there’s a different element of trust: ‘How much is this portion size?’” she said.

“The situation at the dining halls this semester — I would not have been able to navigate that in the midst of my eating disorder,” Laboe said. “Because, I mean, you just really have no control over what you’re eating or the portions you’re getting.”

Pandemic restrictions have also created new anxieties around exercise. As gyms closed or limited their occupancy, working out took on a new visibility all over campus.

“I don’t care what time of day I leave, or how early I get to campus, even on a Sunday morning, there will be somebody running,” Staples said. “And, again, on most levels that’s a really great thing, and yet there’s that tendency to compare here.”

While restricting caloric intake and abiding by self-imposed rules became commonplace for Scheidler, Russo and Laboe, they also emphasized an even darker element of life with an eating disorder: a stark sense of isolation.

“If I think about the worst days of freshman year, primarily, just, it’s lonely,” Scheidler said. “It would be waking up super early to get to Duncan to work out before class and then eating as little as possible before lunch, and then just being hungry and cold. And then the class before I went to the dining hall, obsessively checking multiple times what I was going to eat.”

When Russo first developed her eating disorder in high school, she suddenly had a secret to keep from her friends and family. She said that throughout her struggle with an eating disorder, loneliness has been her biggest enemy.

“It was very isolating, probably the most isolating aspect of my life and most isolating time of my life,” she said. “I didn’t tell anybody about struggling with, you know, eating issues or with exercise issues.”

Laboe said she “felt so, so alone during that time. All I could think about was food and exercise. I had no sense of direction in my life, no other passions outside of food and exercise, it’s just always in your head.”

Staples said that students she has worked with “will talk about just wanting to concentrate in class and feeling like all they’re thinking about is, ‘What am I going to eat?’ or ‘How am I going to exercise to burn off calories?’ and it can really impact their lives in terms of relationships, because oftentimes, they’re wanting to avoid situations where food might be involved.”

“In many ways, the world gets really small, because that’s what they’re thinking about,” she added.

Scheidler said that the way her eating disorder was impacting her relationships was ultimately one of the biggest motivators in catalyzing her recovery process.

“In prioritizing food and exercise above everything else, it made me into a terrible person who was just cold, and angry, and stressed out all the time, and who wasn’t fun to be around,” she explained. “And I didn’t want my friends in college or my siblings to remember me as the girl who wouldn’t touch the bread on the table at dinner.”

For Scheidler, the recovery process also involved meeting with a therapist during the summer between her freshman and sophomore years.

“Doing the meetings with my therapist, I think I ended up crying every session, just because food and exercise were such an anxiety-inducing ordeal,” she said, “So unpacking all of that, I just had my hackles raised the whole time.”

Staples added that a lot of the work of therapy for an individual is recognizing that their eating disorder is a coping mechanism — albeit an unhealthy one. “So in addition to eating differently, we also need to help students or individuals figure out, ‘Okay, if I’m not going to use food to cope with my emotions, or disappointment or relationships, how else do you express those things?’”

At Notre Dame, the treatment process varies based on each student’s individual needs, according to Staples.

“If they’re really early on in kind of recognizing this as a problem, a lot of it is psychoeducation, you know, in terms of helping them to recognize this as an illness, that it’s not something that they cause,” said Staples.

She added that working with a dietitian like Antonelli can help add structure to the recovery process, as developing some sort of eating plan can help students feel a measure of the control they often feel they’re lacking.

Antonelli said that any plans she makes with students are always green-lighted by the psychologist they’re working with, and can include anything from simply creating a plan to eat a certain amount of food from each food group every day, to plating food for them in advance so they don’t have to choose their meals themselves, to storing certain, specific foods that students can help themselves to in the dining hall.

For some students, this level of treatment is adequate to begin the recovery process, but others, like Laboe, need more intensive care.

The summer after her sophomore year, Laboe was admitted to a residential treatment facility where she received 24/7 care.

While today she recognizes just how crucial a step this was in her recovery process, at the time she was in denial that she needed treatment at all.

“I didn’t realize why everyone was making such a big deal about it. I thought: 'why was I in residential care?' That’s a very high level of care, you know, for people who are medically unstable, and I was like, ‘I’m not medically unstable,’” Laboe said. “But obviously that was my eating disorder talking.”

While Laboe completed her treatment, it was not without its complications. She threatened to quit the program multiple times and felt as if she “really white-knuckled [her] way through the summer.”

It wasn’t until the following year that she made the decision herself to commit to recovery.

“I honestly feel like I was just so exhausted. And I was like, I literally cannot live like this any longer — this cannot be my life. I deserve a freer and more meaningful life than the life I’m living right now.”

 

Recovery is Active

Recovery has no formula, and for Russo, the challenges of the pandemic provided an opportunity for healing.

“I’m very privileged to say that the pandemic and the isolation and the quarantine was actually really conducive to my healing, because I was able to be sheltered away in my home, where I felt safe,” she said.

Scheidler, Russo and Laboe each emphasized that recovering from their disorder has not been about the pursuit of a solution. Instead, they had to learn new ways of thinking about themselves and new strategies for approaching food in a healthy way, especially when the pressures of college life start mounting.

“It’s not the close of a book or anything like that,” Laboe said regarding the concept that recovery means one has completely eradicated their eating disorder. “There are times when I’m feeling really sad, or really anxious about school or something, or just lonely in general and my eating disorder does pop up and is like, ‘oh, hey, do this.’”

Both Laboe and Scheidler said that much of recovery has revolved around learning not to listen to the so-called eating disorder voice in their heads.

“Some days the eating disorder voice is a lot louder, and really more tempting and I just have to be aware of that and realize that listening to that voice is not going to serve me in any way,” Laboe said.

“Recovery, for me, was a lot of time figuring out what triggered the obsessive food habits, which to this day is kind of the active recovery process because it’s not like the desire to use food as a crutch when you have anxiety — that doesn’t go away,” Scheidler explained. “It’s just learning that instead of giving in to those urges to suddenly go and analyze everything you just ate or to go work it off, to be like, ‘okay, where’s this coming from?’”

Scheidler has also used social media to augment her recovery process. She manages an Instagram account with over 3,000 followers under the handle @GraceLivesWell.

“I wanted it to reflect that there’s more to life than food,” Scheidler said, explaining that while her feed primarily features recipes and the food she eats, that she wants to communicate that “even if food is involved, it’s about who you’re eating it with or the context that you’re eating it in.”

Scheidler added that her Instagram account helps her remain transparent about her recovery process. She makes sure to post on days when she feels like she’s struggling or that she overate to let others know that they’re not the only ones who have bad days with regard to recovery.

Transparency has become one of the major setbacks of the pandemic and virtual therapy. Staples said that she had a hard time verifying a patient’s honesty about their weight when she could only view them from the neck up. She said that in several cases, she would be shocked to hear a student’s actual weight from a physician.

“They were overreporting their weight to me,” she said. “It’s just difficult because I don’t have my eyes to sort of check in.”

Staples said for others, though, virtual therapy allowed a gentler entry to recovery than traditional in-person visits would.

“Maybe they don’t feel quite so vulnerable, and so it’s a little bit easier of a start for them,” she said.

The oscillating, highly personalized nature of an effective recovery can be difficult for those seeking a clear-cut solution, according to Staples, who said that she sees many Notre Dame students who “want to do recovery perfectly.”

“I think particularly this population here, when they set a goal and they don’t meet it, that’s really devastating so we do a lot of work early on in treatment in terms of anticipating this is not going to be a linear thing — there will be ups and downs,” she said.

Laboe has embraced this mentality.

“I really do not want people to consider me fully recovered in any way,” she said. “I definitely have come a very long way in my recovery, but I think to idealize me as this recovered person, that’s very unhealthy.”

Similar to Scheidler, Laboe found doing outreach to be helpful to her recovery. During the first COVID-19 lockdown in March 2020, Laboe discovered The Body Positive, a nonprofit organization devoted to ending the harms of a negative body image, including eating disorders. Laboe underwent training to be a facilitator of The Body Positive’s curriculum and currently leads six body positivity groups in conjunction with the UCC.

“I just never want anyone to feel how I felt throughout my eating disorder, and so preventing anyone from feeling that or ensuring that people know they’re not alone, if they’re struggling with that, is so important to me,” said Laboe.

Russo also found outreach helpful to her recovery. This past fall, when Notre Dame went into lockdown, she started recording voice memos on her phone about her struggle with eating disorders. It inspired her to start a podcast on the student radio station, WVFI.

“The podcast was more or less born out of one of the darkest times in my life. I was just really sad and felt lonely and isolated,” she said. “For me, it’s blossomed into something with so much light and a lot of beauty. It’s kind of given me back my voice.”

Since then, she said she has received an outpouring of support from friends, and even students she did not know, who said the podcast has helped them recognize and confront unhealthy behaviors.

“It was initially an adventure in figuring out why, trying to figure out what happened to me, but became a defining feature of who I am, what I value and what I appreciate,” Russo said.

 

If You’re Struggling

Staples said that many who struggle with eating disorders get caught up with the idea of normalcy and the idea that there is a normal way to eat, when in reality healthy eating looks different for everybody.

“It’s so comforting and tempting to lean into the persona of being the healthy, skinny friend with the cleanest plate,” Scheidler said, and one piece of advice that helped her was to try and treat herself in the same way that she would her best friend.

“For whatever reason, when you’re in the depths of an eating disorder, the way you find value in yourself is through eating the cleanest, or weighing X amount, or getting so many steps, or burning so many calories,” Scheidler said. “But then when you take a step back and look at the people who you value in your life, it’s like, I don’t care whether my best friend worked out today or not, or what she’s having for dinner. If she was hungry, I’d be like, go get a snack.”

Scheidler also noted that adjusting how we engage in conversations about food with friends can be beneficial in the long run.

“More people need to get comfortable calling out their friends for skipping meals during finals week and not taking care of themselves,” she said. But at the same time, she also emphasized that putting the onus on friends alone could be harmful, as they’re not necessarily prepared to carry out a discussion on mental health in the same way a trained therapist would be.

Both she and Laboe acknowledged that while reaching out for professional help can be intimidating, it’s usually an essential step to take to equip an individual with the tools they need to pursue a healthy recovery.

“One of the hardest things for me throughout the course of my eating disorder was believing that I was not ‘sick enough’ to receive treatment, that I could figure out my problems on my own,” Laboe said. “It was only once I let go of this belief and opened myself up to getting professional help that I was able to get to the root of my eating disorder and pursue recovery in a meaningful way.”

Scheidler spoke about the difference treatment made for her while ruminating on her past:

“When I think about those days, it just was so lonely and cold and alone I just feel very protective of that girl because I’m like ‘You were dealing with a lot and you didn’t have the tools yet to deal with that in a healthy way, or productive way. And now you do.’”