GUELPH – Eating disorders impact different people in different ways, and this year’s Faces of Recovery panel highlighted some of the lesser-known disorders.
There was a focus on avoidant restrictive food intake disorder (ARFID), how eating disorders can impact neurodivergent people differently, and eating disorders from parents’ perspectives.
The annual panel, organized by the Waterloo-Wellington Eating Disorders Coalition, is in its 20th year and took place virtually on Feb. 8, with about 70 people in attendance.
This year’s panelists were Charlotte and Beatrice, who spoke about their own experiences with eating disorders, and Lara and Heidi, who spoke about supporting their daughters.
(Due to sensitive content, panelists are referred to by first names and pseudonyms to protect their privacy).
ARFID
Charlotte shared how ARFID affects her life, and the tools and techniques she uses to manage it.
Unlike other eating disorders, ARFID is not caused by body image, but by various sensory issues and a general lack of interest in eating, Charlotte explained. It’s most common with autistic people, she added.
Lara and Heidi talked about their experience supporting teenage daughters, Emma and Olivia with ARFID.
Both Charlotte and Emma were called “picky eaters” when they were young.
Charlotte described how certain foods have a palatable texture, colour, smell and taste: these are her “safe” foods.
Safe foods are often processed because processed foods are more consistent, Charlotte explained, while there’s more variance in fruit and vegetables. This variance “can be very upsetting for someone with ARFID,” Charlotte said.
Lara said her daughter never wanted to eat fresh fruit, vegetables, soups, stews or salads.
“The foods that I like to eat … are not considered the healthiest,” Charlotte said. “And that always made me feel like there was something wrong with me.”
ARFID is also characterized by a general lack of interest in eating – something Charlotte said has been particularly tough for her.
Her parents were told if they only gave her one option she would eventually eat, but that didn’t work for Charlotte. They were also encouraged to force her to eat, which only makes matters worse.
Professional support
Charlotte first sought professional support during university, because she was struggling with nighttime binge eating.
During the day Charlotte felt no appetite and no desire for food. But at night, she felt so hungry she’d eat whatever safe foods she could find.
“Binging made me feel bad about myself, and I knew longterm it wasn’t a healthy way for me to be eating,” she said.
Learning their eating issues were caused by ARFID marked turning points for Charlotte and Emma.
A pediatrician explained why Emma found many foods unappealing, Lara said, and connected them with two “wonderful” professionals – an occupational therapist and a dietician – who established a connection with Emma and continues to meet with her regularly to provide support.
This has increased Emma’s coping mechanisms and confidence, Lara said, and led Emma to consider pursuing a career related to her experience with ARFID.
When Heidi noticed her 15-year-old daughter Olivia was skipping meals, feeling frequently cold and experiencing a change in mood, Heidi brought her to see a pediatrician at the hospital.
The day of the appointment is forever ingrained in Heidi’s memory, she said. Olivia was admitted to hospital immediately after the examination, and stayed for eight days. Once she returned home, Heidi said it took most of a year for Olivia to “grow into the idea that she was unwell” and gradually start to commit to recovery.
“She just wanted to be left alone, and things to go back to how they were before,” Heidi said.
Finding the right fit
Panelists emphasized the importance of a strong patient-therapist relationship.
“Finding someone affirming is essential,” Charlotte said, and “it’s worth meeting with a couple folks until something clicks.”
Heidi described bringing her daughter to professionals who “seemed like a perfect fit” on paper, but Olivia did not feel a connection with them, so they weren’t able to help.
Beatrice said for her, the right fit for professional support included therapists and an intuitive eating specialist.
This support helped Beatrice give herself “permission to feel free and comfortable around food.”
Autonomy
Lara said she takes Emma’s lead on what she does and does not want to eat.
“At the end of the day it’s about her body and what she can accept and what she cannot accept,” she said.
Sometimes Emma will decide to try something new, Lara said, but once the food is in front of her “she just cannot eat it. And that is okay.
“It’s more important she feels safe in exploring her limits than succeeding in one particular instance.”
Family support
“Supporting a loved one through recovery has been the hardest thing I have ever done,” Heidi said.
And she has learned valuable lessons along the way, including the importance of seeking help for herself.
During the early days of Olivia’s recovery, Heidi was “ultra focused on numbers and getting her to her target weight,” but over time she learned that it was more beneficial to focus on creating “moments of connection” with her daughter.
Heidi struggled with blaming herself for her daughter’s eating disorder, until a wise friend reminded her to offer herself “a good helping of grace.
“Beating myself up over what I didn’t or couldn’t see did no one any good at all,” she said.
“This was something I discussed at the friends and family support group I attended, and it really normalized my fears and inadequacies.”
Shame
Beatrice described how her sense of self and body image became distorted when she was a child and adults in her life criticized her for her weight. This impacted her relationship with herself, with food, and with the world, Beatrice said.
“The critical voices of adults in my life became the loudest voices in my mind,” she said, while her inner voice was reduced to a whisper.
“I had to replace judgement with kindness.”
For Charlotte, it was significant to understand that a medical condition, not a moral failure, was causing her to eat a certain way.
“It’s because my brain works differently … not because I’m a terrible person,” Charlotte said.
This understanding empowered her to stop forcing herself to eat certain foods, and allowed her to boost her nutritional intake with supplements and meal replacement drinks without shame.
“There are a lot of people from all ages and backgrounds who may not be able to get nutrition from eating alone – and there’s nothing wrong with that,” Charlotte said. “It’s not a moral failing to use a meal replacement drink.”
For Charlotte, “finding ways to combat shame has been really helpful, and really hard to do.”
Heidi said her daughter struggled with shame about the cost of her treatments, even though Heidi assured her “she was more loved, wanted and important than any amount of money.”
Community resources
The panel concluded with attendees asking the panelists and professionals for advice regarding finding support.
The resources recommended include the National Eating Disorder Information Centre, Body Brave, the Canadian Mental Health Association and McMaster Children’s Hospital.
