When isolation leads to illness on Long Island

Eating disorders on Long Island

Eating disorders rise in pandemic

By Madeline Armstrong

Part four in a series featuring stories that appeared in the 2022 edition of Pulse, the Lawrence Herbert School of Communication’s annual student-created magazine, titled this year as Pass the Plate. Pick up your copy at the Herbert School.

“I remember the first time I made myself purge,” said Abby Elyssa, a 26-year-old journalist from Dix Hills. Elyssa started engaging in bulimic behaviors such as this when she was 9 years old to cope with negative emotions and did not receive help until after graduating from college. “I heard my parents fighting and I felt like I couldn’t control it. It made me feel better, in control,” she said of purging.

Bulimia is an eating disorder in which individuals consume large amounts of food and then either purge (force themselves to vomit), take laxatives, engage in extreme exercise or fast.

At 21, Elyssa  received outpatient therapy and saw a nutritionist, both on Long Island. She went on to co-create EDLI (Eating Disorders Long Island), which advocates for eating disorder recovery on Long Island, allows people to share their stories and provides support during recovery. 

There are six types of eating disorders: anorexia nervosa, bulimia nervosa, binge eating disorder, diabulimia, orthorexia nervosa, drunkorexia and Other Specified Feeding or Eating Disorder (OSFED). They affect people across all races, genders, body sizes, sexuality and socioeconomic status. 

Although Elyssa does not believe in full recovery from an eating disorder, after years of hard work, she no longer engages in bulimic behaviors. She currently works with Danielle Sharon, EDLI co-creator and a speech language pathologist who watched her sister work through eating disorder recovery. Together, they seek to support those on Long Island suffering from eating disorders, which are on the rise, according to a number of eating disorder specialists on the Island.

“Our therapists are full, our nutritionists are full, most of our experienced clinicians are booked and have waiting lists,” said Sondra Kronberg, executive director of the Eating Disorder Treatment Collaborative, a founder of the National Eating Disorders Association (NEDA) and president of the Eating Disorder Council of Long Island. “The pandemic has only made it worse.” 

According to the National Association of Anorexia Nervosa and Associated Disorders (ANAD), 28.8 million Americans will suffer from eating disorders in their lifetimes. Additionally, eating disorders are the second deadliest mental illness, resulting in 10,200 deaths each year. Resources for treating eating disorders continue to be sparse, and the pandemic only worsened the issue. 

“There’s a lot of research that shows that the pandemic has increased and exacerbated the eating disorder crisis in the United States,” said Rebecca Eyre, CEO of Project Heal, a national eating disorder foundation that focuses on equitable access to care. “We noticed that people who had been in recovery from an eating disorder for some time had relapsed and attributed that to the stresses and the losses of the pandemic.”

According to the World Health Organization, 72% of mental health services for adolescents were halted in 2020. Additionally, Taquet and colleagues conducted a study that analyzed 5.2 million health records of people under age 30 and found that the diagnosis of eating disorders was 15.3% higher in 2020 than in previous years. 

Long Island, in particular, has seen an overwhelming number of people with eating disorders over the past two years. “There’s been a pretty big increase [in patients] since the start of the pandemic,” said Jeffrey DeSarbo, medical director of the ED-180 eating disorder treatment programs on Long Island. DeSarbo worked at Monte Nido Glen Cove, a residential hospital that treats eating disorders, and said the facility has had to place patients on month-long waitlists. 

Since Monte Nido is a residential hospital, it is among the highest levels of care that a patient can receive and is reserved for those with extreme, life-threatening cases. “We had patients who we felt were needing treatment, and by August [2020], it was difficult to get patients into the proper level of care, with six, eight, 12-week waiting periods, which can be difficult with an eating disorder,” he said.

Abby Elyssa and Danni Sharon co-founded Easting Disorders Long Island.

Elyssa and Sharon said they believe it makes sense that the pandemic would increase the risk of an eating disorder. “This has changed the world, and people with eating disorders don’t like change,” Elyssa said. 

DeSarbo shared this observation. “A lot of behaviors are based around control and trying to establish a sense of control,” he said, “so when the pandemic hit, that completely undermined individuals having a sense of control.”

Another aspect of the pandemic that contributed to the increase in eating disorders was food scarcity, according to Eyre. “We were all panicking that our food system was going to be interrupted,” she said, “so everyone was going to the grocery store and hoarding all this food, and [there were] empty shelves… which is a literal nightmare for someone with an eating disorder.”

Additionally, isolation can lead to eating disorders. This is one thing many people faced during the pandemic when there were lockdowns and social distancing was enforced. “Isolation is the friend of the eating disorder because it keeps you from getting what you need and feeling anything other than the eating disorder,” Kronberg said.

The pandemic increased the risk of relapse for those in recovery, as well as the chances of the onset of an eating disorder for those genetically predisposed. At the same time, in addition to access issues, there are also numerous healthcare barriers keeping people from receiving treatment.

“It’s one of the most inequitable spaces in all of healthcare,” Eyre said. “Less than 20 percent of people [with an eating disorder] ever receive care.” 

According to Eyre, most people, including medical professionals, have had a very narrow idea of what an eating disorder is. She said she believes that bias affects insurance coverage, with 80 percent of patients facing insurance barriers.

“Most eating disorder treatment is only authorized by insurance if a person needs ‘medical necessity,’ and unfortunately, that’s often defined as being underweight, having abnormal labs or having an abnormal EKG,” she said. “Less than 6 percent of people with eating disorders are medically underweight. If you’re waiting for early signs of organ failure to treat a mental illness, you’re not doing things correctly. I think we have a cultural misconception that’s really costing people their lives.”

Elyssa and Sharon have found this barrier to treatment evident on Long Island. “Resources are scarce for eating disorders, especially where we live,” Elyssa said. When Sharon’s sister sought treatment for her eating disorder, she had to leave her family and home to find care off the Island. “She would have loved to be able to stay local,” she said, “but the level of care that was needed was not able to be found here.”

Project Heal has a number of initiatives to help those struggling with eating disorders. Anyone who is suffering can contact the organization and it will do what it can to provide support and find care for that individual. Last year, Project Heal offered help to more than 2,700 people, and the group aims to assist over 5,000 people this year. It  will also launch a clinical assessment program through which individuals will be able to receive free assessments with clinicians. 

Kronberg said she believes a number of preventive measures can be taken to reduce or stop eating disorders. “In this culture, particularly here in Long Island, it’s almost like weight, eating and ‘gyming’ have become the new religion,” she said. “Every day walking out of your house, being told your body is not OK, is traumatizing. The eating disorder is sort of their solution, except because of their genetics, they get trapped in it.”

Kronberg said education in schools, the home and the media about people’s worth not being their weight or what they look like can help prevent the onset of eating disorders. During the pandemic, Kronberg started a free support group that has been a “lifeline” to people around the world, with between 150 and 500 people attending each week.

“I think treating this like a chronic mental illness instead of an acute medical condition would be very helpful,” Eyre said. “The more we can expand our sense of what an eating disorder is and what it looks like, the more we’ll be able to identify it and care for it in our society.”

Elyssa agreed that more work needs to be done, but is optimistic about the future. “I think the good thing that came out of Covid is that people have an increased attention to mental health,” she said, “so I think we are headed in the right direction.”