Peer mental health support worker in an acute inpatient ward, Emily, 22, Brisbane, began struggling with bulimia nervosa (BN) at age 14. Two years later, in 2019, she was also diagnosed with binge eating disorder (BED).
BED involves episodes of consuming unusually large amounts of food (in a relatively short space of time), and a loss of control.1,2 BN involves recurrent binge-eating episodes followed by compensatory behaviours.1 BED may include sporadic fasting and repetitive diets (compensatory behaviours), as well as weight gain.3 Feelings of guilt, disgust, and depression often follow a binge-eating episode.1,2,4
At 14 years of age, Emily developed disordered thoughts and behaviours. Following her father’s departure from the family home, she started restricting her food intake and dieting, which gradually developed into compensatory behaviours that led to bulimia.
Two years later, Emily was hospitalised following a suicide attempt, which marked the point when her disordered eating became apparent to her mother. She was diagnosed with BN by a clinical psychologist, and two years later, with BED. Her mother has also struggled with undiagnosed BED, suggesting a possible genetic link to the mental illness.
On her journey toward recovery, Emily was also diagnosed with attention-deficit/hyperactivity disorder (ADHD), and more recently, with borderline personality disorder (BPD) – conditions that often co-occur with eating disorders.5,6
Today, Emily lives with BED, which can resurface at times. She works to actively manage her mental health through regular therapy, including dialectical behaviour therapy (DBT) – a form of cognitive-behavioural therapy (CBT).
Emily 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 genes 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, which is the aim of EDGI2.
This is Emily’s story.
Emily traces the origins of her eating disorder back to early childhood, when rigid food rules at home began shaping her relationship with eating.
“Growing up, there were always strict rules about when I could and couldn’t eat. It made me hyper-aware of food and control from a really young age.
“When I was 14, I started struggling with dieting and trying to control what I ate, which eventually led to bulimia,” said Emily.
After two years of worsening symptoms, Emily was hospitalised following a suicide attempt. It was during this time she received a diagnosis of bulimia nervosa.
“I felt full and sick all the time, and I convinced my mum to go on a diet and offered to do it with her.
“When I was 16, I attempted to take my own life, which led to my hospitalisation. That was when my mum first learned about my eating disorder, and I was diagnosed with bulimia nervosa by a clinical psychologist,” Emily said.
Two years later, Emily was diagnosed with BED.
“When I was 18, I also received a diagnosis of BED, and in 2020, my diagnosis formally changed from BN to BED,” said Emily.
Emily reflects on how her eating disorder has affected her quality of life, and its enduring impact.
“When I gained weight, I lost the desire to dance. I couldn’t bear looking at myself in the mirror or in the studio, and that was incredibly hard to deal with.
“Socially, it was isolating and confronting. There was so much shame, and I always felt like if people knew, it would be all they thought about,” Emily said.
“My digestion still hasn’t fully recovered, and I experience persistent fatigue.”
Emily describes how it feels to live with an eating disorder.
“The loneliest thing about having an eating disorder is that it feels like something only you experience, even though so many others struggle with it too.”
As part of her recovery, Emily has gained a deeper understanding of her mental health through new diagnoses and continues to navigate life with self-awareness and compassion.
“Being diagnosed with borderline personality disorder and ADHD helped me better understand my thoughts, emotions, and behaviours.
“I still sometimes struggle with BED, but I’m learning how to manage the illness, and be kinder to myself through the process,” said Emily.
Emily has an important message for other Australians living with an eating disorder.
“Talk to your GP about it. And if their response feels dismissive or not right, don’t stop there. Get a second opinion. Trust your instincts, and know it’s okay not to be okay.
“Recovery isn’t linear. Everyone experiences ups and downs, but the key is to keep going and trust that progress is possible, even in the hardest moments,” Emily said.
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 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
