Aspiring primary school teacher, Sophie, 27, Perth struggled with atypical anorexia – a type of diagnosis that can be made within other specified feeding or eating disorder (OSFED) – from 15 years of age.
OSFED is a serious, complex, and potentially life-threating mental illness that occurs in adults, adolescents and children.1,2 The medical complications and eating disorder thoughts and behaviours related to OSFED are as severe as other eating disorders.1
Sophie was diagnosed with atypical anorexia in 2017 by a psychologist who specialised in eating disorders. By then, she had been wrestling with symptoms of OSFED for four-and-a-half years.
Sophie first showed symptoms of an eating disorder around 15 years of age. Regular fitness testing at school, including weight and height checks, made her increasingly self-conscious about her changing body.
With a background in elite dance, Sophie struggled when weight-related comments from her teacher left a lasting impact. Combined with academic pressure and perfectionism, these experiences fuelled her eating disorder.
After being diagnosed with OSFED, Sophie felt surprised and confused, admitting she never thought an eating disorder could affect someone like her.
Although there is no known history of eating disorders in her family, other mental health conditions are present, including her brother’s bipolar disorder diagnosis.
Since mounting a recovery from OSFED, Sophie has also been diagnosed with Obsessive-Compulsive Disorder (OCD) – a disorder marked by uncontrollable and recurring thoughts (obsessions), repetitive and excessive behaviours (compulsions)3 – and autism – both of which commonly co-occur with eating disorders.
Sophie has been in recovery from her eating disorder for five years. With support from her family, positive role models, and ongoing professional help, she remains mindful of her mental health, and avoids using disordered eating as a coping mechanism. She now finds joy in activities that support her wellbeing, like tap dancing, yoga, Pilates, hiking with her partner, and spending time with family.
Sophie has chosen to participate in the Eating Disorders Genetics Initiative 2 (EDGI2) study – the world’s largest genetic investigation of eating disorders ever performed, that aims to identify the hundreds of genes that influence a person’s risk of developing the complex, devastating illnesses of anorexia nervosa, bulimia nervosa, binge-eating disorder and Avoidant Restrictive Food Intake Disorder (ARFID), to improve treatment, and ultimately, save lives.
EDGI2 follows the ground-breaking advances made in the initial EDGI investigation and collaborative Anorexia Nervosa Genetics Initiative (ANGI), in which researchers, including the EDGI team, identified the first eight regions of the genome for anorexia nervosa that implicate both psychiatric and metabolic causes for the condition.
This was a total surprise and a finding that urgently needs replication and expansion to fully understand the pathways that lead to this debilitating condition – hence the need for a much larger sample size and participants who have experienced ALL eating disorders, which is the aim of the EDGI2.
This is Sophie’s story.
“Living with an eating disorder is an experience that was filled with stress and anxiety, and a lot of self-criticism.
“It’s like having a strong, internal critic you can’t escape from because it’s inside your head,” said Sophie.
Sophie’s mental health struggles were deeply isolating, hidden from those around her.
“An eating disorder feels very secretive and hidden from the people around you, because it is mostly psychological.
“It can manifest in ways that make you a miserable and moody person to be around, which is difficult,” Sophie said.
“You often feel like you’re being inauthentic and not yourself. You feel pushed and forced into certain behaviours. It isn’t you, you don’t want to be doing those things, but you feel like you have to.”
For Sophie, her eating disorder cast a shadow on otherwise joyful experiences.
“During my eating disorder, even family holidays were difficult. I was constantly thinking, ‘I can’t eat certain things,’ or ‘how will I fit in my exercise?’ instead of enjoying the moment.”
Sophie’s eating disorder compromised her ability to fully engage with everyday moments and life milestones.
“My eating disorder prevented me from being fully present and enjoying things that should’ve been simple.
“It caused so much stress in addition to the standard academic pressure of the final year of high school.
I felt I had to meet my own academic standards and all the requirements I imposed on myself,” said Sophie.
“It almost prevented me from going to Australian National University (ANU), even though I was so excited to get in.
“It became a huge barrier I had to push through,” Sophie said.
Apart from the heavy psychological toll, Sophie’s eating disorder led to serious physical consequences – some of which she continues to live with today.
“My hair got thinner, my nails became brittle, I was often iron deficient, and winters were really hard because I was constantly cold.
“I developed an autoimmune condition from my eating disorder and chronic stress, that I continue to live with. It’s hard not to feel guilty, like I did this to myself,” said Sophie.
Today, Sophie has a powerful message for other Australians living with an eating disorder.
“Trust your intuition. If something feels off, or out of alignment with who you are, it’s worth exploring.
“Reach out and talk to someone. It doesn’t hurt to check in and get assurance that you’re okay, instead of struggling without knowing what’s really going on,” Sophie said.
“We’re living in a time where disordered eating is normalised in wellness culture, from weight loss medication to clean eating trends.
“It’s important to trust professionals, listen to your own needs, and know that you don’t have to have a picture-perfect routine to be okay. You’re not alone in this struggle,” said Sophie.
To volunteer for, or learn more about EDGI2, head to edgi2.org.au or email edgi2@qimrb.edu.au. Should you suspect you, or a loved one may be living with an eating disorder, speak to your local healthcare practitioner without delay, or head to insideoutinstitute.org.au to complete their online screener and assessment and to access more information and links to professional support.
Australian patient support services offering 24/7 helpline services include:
- Butterfly National Helpline: 1800 334 673
- Beyond Blue: 1300 224 636
- LifeLine: 13 11 14
- Men’s Line Australia: 1300 78 99 78
- Kid’s Help Line: 1800 55 1800
