In light of World Eating Disorders Action Day yesterday, two UNC researchers have released new information from a study regarding how the pandemic is affecting people with eating disorders.
The hope is, this early data will help clinicians better treat their patients as the pandemic continues.
When the COVID-19 pandemic led to mandatory stay-at-home orders and physical distancing efforts, Dr. Cynthia Bulik and Dr. Christine Peat were worried about the condition of those struggling with an eating disorder.
Bulik is the founding director of the UNC Center of Excellence for Eating Disorders (CEED) and Peat is the director of the National Center of Excellence for Eating Disorders (NCEED). Both are professors and researchers at UNC.
Bulik said both she and Peat noticed early on that people began to struggle in wake of the pandemic. She said the NCEED, located right here in Chapel Hill, saw a 30 percent increase in referrals to their programs.
“We’re hearing people who are in lockdown or sheltering at home who are suddenly dealing with urges to binge or they’re turning to comfort food,” Bulik said. “Let’s face it the news we’re getting on a daily basis is not positive right now and that is a persistent and constant stressor.”
To understand how people with eating disorders were being impacted by the pandemic, Bulik and Peat received approval to survey people with eating disorders in the U.S. and the Netherlands. They completed their survey with 1,000 participants all in the matter of two weeks.
Survey results found that study participants in the U.S. with anorexia nervosa are reporting increased dietary restriction and fears about being able to find foods consistent with their meal plan. People with bulimia or binge-eating disorder reported increases in binge-eating episodes and urges to binge.
Additionally, Bulik said three things stood out when it came to what was currently concerning people with eating disorders the most: lack of structure, living in a triggering environment and lack of social support.
“Eating disorders thrive in secrecy and, for people who are living along during lockdown, they just didn’t have the support that they needed for recovery,” Bulik said.
In the survey, respondents also noted an increase in anxiety and fears that their eating disorder will worsen. Bulik said this isn’t altogether surprising, as everyday tasks that might already be difficult for someone with an eating disorder, like going to the grocery store, are made even more stressful by the pandemic.
“So someone with an eating disorder often – especially early in recovery – has a limited number and types of food that they’re comfortable with,” Bulik said. “If they can’t even go to the grocery store or if they’re on Instacart and their comfortable brand isn’t available and all of a sudden they have to make substitutions, that can be incredibly anxiety-provoking,” Bulik said. “So it’s almost as if some of the measures that we took in order to flatten the curve were tailor-made to make it more difficult for people with eating disorders.”
Bulik said it’s important to get this information out there so we can educate the public and healthcare system moving forward.
“What we were really trying to get is information from people with lived experience to help us inform clinicians and family members and caregivers about what they can do to make these people’s lives better,” Bulik said.
Survey results showed that of those already in eating disorder treatment pre-COVID, over 80 percent reported having transitioned to telehealth services – but satisfaction was mixed, with almost half of respondents saying their treatment wasn’t as effective as usual.
“So what we’re really suggesting, for both providers and patients, is to have an open conversation,” Bulik said. “Talk to each other about what’s working and what isn’t working so that you can really make the platform work for you.”
Bulik said, the more troubling data was that almost half of the respondents who currently had symptoms were not receiving treatment at all. She said they see this all the time – where people struggling with eating disorders never end up receiving care or even understand that what they are struggling with has a name. Bulik said this lack of treatment can stem from lack of education and long-standing stigma.
“I think people are accepting now that depression is biological, that anxiety is biological, but there is still this misconception that someone chooses to have anorexia or chooses to have bulimia,” Bulik said. “Much of our research is actually about genetics and we have shown unequivocally that genes play a role in these illnesses in much the same way they do in depression, schizophrenia or OCD. So we almost have to erase all those prior misconceptions and replace it with accurate knowledge so that people no longer think that someone who has one of these illnesses is somehow at fault.”
Over the next year, the 1,000 people involved in the study will continue to be surveyed monthly to see how their needs change and what new concerns arise as the effects of the pandemic continue.
For treatment options and support, Bulik said to consider visiting the National Center of Excellence for Eating Disorders’ website here. ‘
Read more about how the pandemic is causing increased body image and eating disorder concerns here.