Creative art therapist and disability support worker Kaylee, 26, Wollongong, was diagnosed with anorexia nervosa in 2012, following a complex series of medical events.
Showing signs of anxiety and depression – conditions that often co-occur with eating disorders1,2 – Kaylee’s mother grew concerned after discovering her daughter was self-harming, and subsequently rallied for a diagnosis.
Routine tests revealed Kaylee was living with high iron levels which led to a hemochromatosis diagnosis, a blood disorder that is uncommon for a child. Told to avoid iron-rich foods, Kaylee’s dietary restrictions, combined with her mental health struggles, triggered obsessive behaviours around food.
A year later, after frequent fainting spells, Kaylee’s GP referred her to a childhood paediatrician.
At 13, while hospitalised, she was diagnosed with anorexia nervosa.
Characterised by psychiatric and physical symptoms,3,4 anorexia nervosa is a serious and complex illness marked by extreme food restriction and significant, and often dangerous, weight loss.5
The diagnosis brought deep shame for Kaylee, not only for herself, but for the pain it caused her mother, who wished she had identified the signs earlier.
Kaylee reflects on how her eating disorder disrupted her childhood, especially after hospitalisation, when meals were closely monitored and her well-intentioned mother hovered constantly to ensure she was eating. Attempts to return to normal life were overshadowed by anxiety and food-related scrutiny.
Kaylee notes a genetic link to her eating disorder, citing a maternal grandmother who silently struggled with an unhealthy relationship with food and exercise.
Today, Kaylee works as an art therapist, helping children with disabilities and mental health challenges, drawing on her own experience to connect and support them.
Kaylee 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 complex, devastating eating disorders – including 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 Kaylee’s story.
Kaylee began experiencing depression and anxiety in her early teens, and was later diagnosed with a rare blood disorder. The dietary changes required to manage the condition increased her preoccupation with food, which contributed to the development of anorexia nervosa.
“It started with anxiety and depression, then my mum discovered I’d been self-harming. She pushed for a diagnosis so I could get the help I needed.
“Tests showed I had high iron levels for my age, which led to a haemochromatosis diagnosis. I had to cut out iron-rich foods, and with the anxiety and depression, I became obsessive about my diet,” said Kaylee.
As her condition worsened, Kaylee developed a range of physical symptoms that signalled the seriousness of her eating disorder.
“Fainting, a low heart rate, and losing my period were my main symptoms.
“I never really stopped eating. I just stuck to very low-calorie meals,” Kaylee said.
“I also exercised excessively, either in private or through long walks.
“Looking back, my eating changes weren’t missed, but they weren’t recognised early enough to prevent things from getting worse,” said Kaylee.
Kaylee reflects on the emotional toll of her diagnosis, particularly on her mother.
“I felt quite ashamed, but what upset me most was seeing how hurt my mum was. In hospital, it hit me –
this had gone too far, and she wished she’d noticed the signs sooner,” Kaylee said.
Kaylee shares how recovery challenged her sense of what felt normal, making everyday social situations feel unfamiliar and overwhelming.
“It robbed me of my childhood. After hospital, it was all about ensuring I ate every meal. A year later, going out with friends was stressful – worrying about what I’d eat made it feel more like a chore than fun.”
Kaylee acknowledges a family history of disordered eating, suggesting a genetic link.
“I suspect my maternal grandmother had an undiagnosed eating disorder. She’d often eat only one meal a day and obsessively exercised,” said Kaylee.
Now in recovery, Kaylee has an important message for Australians living with an eating disorder.
“Seek help from family, friends, or someone you trust. Don’t hide it or let it worsen.
“If you’re in recovery, don’t give up. You’re fighting for your body and your life,” Kaylee said.
To volunteer for, or learn more about the Eating Disorders Genetics Initiative 2, 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 professional patient support services offering 24/7 helpline services include:
- Butterfly National Helpline: 1800 334 673
- Beyond Blue: 1300 22 4636
- LifeLine: 13 11 14
- Men’s Line Australia: 1300 78 99 78
- Kids Help Line: 1800 55 1800
