Toronto, Ont. — Alicia Pinelli was standing in line at the York University cafeteria during lunch when the reality of an eating disorder sunk in.
The province of Ontario had just implemented the Healthy Menu Choices Act, which requires regulated food services to publicly display the number of calories in their products.
Pinelli sunk to the ground, overcome with anxiety upon realizing the meal was 100 calories more than they thought.
For the social work student, who prefers to be referred to using the gender-neutral pronoun “they,” accepting the illness was only the first step toward recovery.
For Pinelli, who identifies as genderqueer — meaning a person whose gender identity or expression may not correspond with social and cultural expectations — finding appropriate treatment was more challenging than expected.
“It’s really disheartening to walk through this world feeling like something’s wrong with you because you can’t even be the right type of sick. It makes you feel like there’s only one way to be sick and one way to be validated,” Pinelli said.
Eating disorder rates are rising among transgender individuals, according to a 2015 study by the Children’s Hospital of Eastern Ontario (CHEO) Research Institute.
This research suggests they are more likely to develop an eating disorder if they experience gender dysphoria, the feeling of conflict when one’s biological makeup does not match their internal gender identity.
A review was conducted during the study on a clinical group presenting signs of gender dysphoria.
Five of the 97 patients presented what would be considered an eating disorder, and an additional 10 showed related symptoms.
Pinelli’s search for help was not easy. In researching recovery programs Pinelli found most of what was available assumed the user was heterosexual and cisgender — meaning non-transgender — and at times used incorrect pronouns and non-binary exclusive language.
Non-binary is an umbrella term that encompasses many gender identities that don’t match the traditional male and female genders.
Not all transgender and genderqueer individuals identify as non-binary, though.
“Most places that I looked at, they were either specifically female programming or specifically male programming, and there was really no integration looking at gender or looking at sexuality or anything of that nature,” Pinelli said.
Generalized services may not address the struggles that a non-binary person experiences, unlike someone who is cisgender and whose gender may not impact their disorder or the way they view their body in the same way, Pinelli said.
“Being someone who is part of the LGBT+ community I wanted services to reflect that because it is a large part of my disorder and a large part of my identity,” Pinelli said.
Eating disorders are often portrayed as a mental health issue that only affects young cisgender females. This misconception can yield stigmatizing results for individuals who don’t fit that profile, said Jody Brian, the executive director at Hopewell Eating Disorder Support Centre in Ottawa.
“The stigma around these diseases is heavy and it really limits an individual’s capacity to feel like they have a safe space to go if they want to seek recovery,” Brian said.
“Eating disorders are still seen as a phenomenon that just affects well-to-do white girls, and that’s not the case. It can affect anybody.”
Although there is no specific cause of an eating disorder, there are many contributing factors such as athletic pressures, genetics, and other psychological conditions, according to Statistics Canada.
Social media also has an enormous impact, said Dr. Josée Jarry from the University of Windsor.
“A lot of people are relying on feedback that they get on their postings. That is what triggers their level of body satisfaction. So if they get a lot of ‘likes’ or comments … then they feel better about their appearance,” Jarry said.
“But if they get not enough ‘likes,’ or not the right comments, or not enough comments, then they feel worse about the way they look.”
Some treatment in Canada is publicly funded, but these services typically have longer wait times compared to privatized care because there is less space available, although it can take several weeks to years to access either.
Waiting this length of time for treatment can sometimes result in a harmful or fatal outcome.
Additionally, most programs require a doctor’s referral. This would prove to be another obstacle for Pinelli.
When Pinelli disclosed to a family doctor within Toronto that they identify as genderqueer, the doctor informed Pinelli that he could no longer be their physician because he didn’t have the knowledge that was required to serve someone who is non-binary.
“It kind of left me at a crossroads of having to figure out how to access something that felt like it wasn’t made for me,” Pinelli said.
One in 200 youth develop feelings of gender nonconformity. Ten years ago that number was estimated to be one in 30,000, according to a report by the Mental Health Information Committee of CHEO.
This is one of the reasons why Dr. Stephen Feder, a co-director at CHEO’s Gender Diversity Clinic, believes the need for specialized services is more urgent than ever. “If you look at medical school and specialty training, currently there is very, very little directed toward addressing (non-binary individuals), so number one on the agenda would be to integrate this into school as a fundamental part of their curriculum,” Feder said.
He believes that frequently updating research, designing programs tailored for different populations, and increasing access to LGBT-friendly health-care providers can help accomplish this.
Pinelli, now 24 and recovered from bulimia, said that eating disorders are not a lifestyle or fad but a mental illness, and it’s crucial to treat them as such, which includes providing the appropriate type of health care.
Pinelli, who is entering a master’s program to study critical social work, hopes to research the correlation between gender dysphoria and the prevalence of eating disorders further.
About this piece: This article was originally written for a class. It was published in the Toronto Star on June 28.