Sterling Renzoni found a silver lining in the COVID-19 pandemic: “Being able to receive virtual services accelerated how fast I was able to get ready to go to university,” says the mental-health warrior and eating-disorder treatment advocate from Peterborough, Ont.
To accommodate physical distancing, eating-disorder treatment and supports have had to adapt to society’s new virtual reality. While hospital-based in-patient eating-disorder services remained open, nearly all other wrap-around services, such as community-based, out-patient, day treatment, and group therapy options, were forced to move online. Service providers and participants such as Renzoni say they have been surprised by how successful virtual supports have been during the pandemic.
Eating disorders have the highest overall mortality rate of any mental illness, and approximately 1 million Canadians meet the criteria for a clinical diagnosis. Research shows that many individuals affected by eating disorders do not seek eating-disorder specific treatment, and when they do, they are faced with long waitlists. Unlike other mental-health conditions, behaviours related to eating disorders can be normalized and even glamourized in Canadian culture – for example dieting and over-exercising – making it difficult to recognize that one might benefit from support.
The pandemic did not only force services to adapt, but people too. The National Eating Disorder Information Centre (NEDIC), which runs a Canada-wide eating-disorder helpline, reported a 45 per cent increase in the number of people reaching out in 2020, compared with 2019. A recent survey about the impact of the pandemic on people who experience eating disorders found many detrimental factors, including decreased feelings of control, decreased access to clinical and social supports, and increased feelings of social isolation.
The increase in the number of people reaching out reflects these struggles, says Ary Maharaj, outreach and education co-ordinator at the NEDIC, but some people are using their time in isolation to engage in introspection and realize, “I need to do something about this.” Maharaj’s observation is confirmed by a study published in July 2020 in which half of participants found that time in lockdown prompted them to take on more self-management skills in relation to their eating disorders.
Indeed, in a typical year, the NEDIC helpline fields a fairly even three-way split among requests for support, resources and referrals. During the pandemic, approximately 70 per cent of the conversations initiated were for “in-the-moment support.” The positives of virtual options begin early when seeking support, as the NEDIC also reports doubling its time spent supporting people through the online chat function in 2020.
A lack of privacy is one of the few downsides of virtual support, according to Kaitlyn Axelrod, program and outreach co-ordinator at Sheena’s Place, an eating disorder support organization. Because Sheena’s Place primarily delivers support through groups, a private space is necessary to ensure everyone’s confidentiality is kept.
“There are many reasons why phone calls might not be the safest thing for a lot of people right now,” Maharaj agrees. With many working or attending school from home, it can be difficult to find space for a private call.
Other negatives include access to technology, which is not an option for all, and that being on camera can be difficult for those who struggle with their body image due to their eating disorder.
Despite the downsides, “We found that going online has made our services a lot more accessible,” says Axelrod. Sheena’s Place is physically located in Toronto, in an old house that is not wheelchair-accessible. Now, Sheena’s Place can offer support virtually to people all over Ontario and can accommodate those with mobility difficulties, transportation challenges or anxiety related to leaving their homes.
Renzoni, who shares his personal journey with eating-disorder support groups, says he would have had to drive more than two hours one way to receive in-person, out-patient services if COVID-19 hadn’t interrupted his recovery. Though he experienced a relapse during the “abrupt transition” from in-hospital to virtual services, Renzoni echoed others who have said that being able to recover at home with virtual support allowed them to learn to “make recovery-oriented decisions” away from the constant supervision of in-person support.
“The goal of being in hospital is that you’re prepared to live in the community again,” says Renzoni, “but no matter how hard they try, in-patient is not like a home setting.”
Another surprising benefit, says Axelrod, is the cohesion of online groups, particularly in demographic-specific groups that were designed to “give more space for people who tend to be underserved in this field,” such as racialized people, the LGBTQ community, and people with binge-eating disorders, whose larger bodies tend not to fit the usual stereotypes associated with eating disorders.
“Despite the stereotype that (eating disorders) are only for young, white, thin women and teens,” says Axelrod, there is growing recognition that eating disorders can affect anyone, regardless of age, race, body size, gender identity, or sexual orientation, and that particular communities are at higher risk of developing eating disorders. For example, transgender college students report experiencing disordered eating behaviours four times higher than their cisgender classmates while Black teenagers are 50 per cent more likely than white teenagers to exhibit disordered eating behaviours.
Maharaj says that when considering these high-risk and underserved communities, it is important to remember that the cause of the increased risk is not the fault of the individual: “It’s the experiences of homophobia and transphobia that put queer and trans people at risk. It’s the experiences of racism that put racialized people at risk.”
While online support options provide a new platform for underserved communities to connect and find support, the issue of inclusion in the eating-disorder field has deeper roots. Though a Canadian Eating Disorder Strategy exists, it is compiled entirely by non-governmental agencies, with little political power to implement recommendations, highlighted by the paucity of specialized, publicly funded, eating-disorder treatment centres in Canada; those that do exist are concentrated in urban areas. The lack of available options for treatment leads many Canadians to fall through the cracks; the fragmentation of services further marginalizes already underserved populations.
The success of virtual services during the pandemic has meant that they are now in danger of being overwhelmed with new referrals, indicating the need to integrate them into a larger, stronger framework of supports for those with eating disorders in Canada.