Author, speaker, award-winning writer and counsellor, mother-to-two, and nanny-to-one, Jenni-Lee, 66, Adelaide, first experienced symptoms of anorexia nervosa – a type of eating disorder – at 15 years of age.
At the peak of her health, Jenni-Lee was an avid track athlete and netball player with a passion for singing. She unexpectedly experienced a progressive decline in her health while attending boarding school during her final two years of school. Struggling with disordered eating, Jenni-Lee was left fatigued and completely lacking in energy, unable to enjoy any of her life pursuits.
An eating disorder is a complex mental illness that for some can lead to severe and permanent physical complications, and even death.1
Jenni-Lee battled an eating disorder for the next nine years. During that time, she trained as a teacher, married and relocated from Adelaide to Melbourne. She managed to conceal her irrational fear of putting on weight and being out of shape.
With her health declining, doctors assumed her severely impaired health was due to the stress of marriage, moving interstate and searching for a new job.
Eventually a teaching colleague suggested she see a psychologist where a diagnosis of anorexia nervosa was made. It took two years for Jenni-Lee’s body and weight to stabilise. While the doctor encouraged Jenni-Lee to put on weight, they did not ask her about the root cause of her disordered eating.
Anorexia nervosa is a serious and complex mental disease with psychiatric and physical symptoms.2, 3 It is characterised by the severe restriction of food intake, and generally results in significant (and dangerous) weight loss.4
While Jenni-Lee had managed to overcome the battle with disordered eating, she continued to grapple with a range of associated mental health issues, including obsessive compulsive disorder (OCD), suicidal thoughts, depersonalisation, as well as migraines and chronic fatigue. Jenni-Lee spent many years searching for answers as to why she still suffered.
Year later, at the age of 36, through extensive work with a psychologist who carefully dissected the root cause of her complex mental health struggles, Jenni-Lee learned that her religious upbringing in a perfectionist household, with a controlling and sexually abusive family member had caused her significant trauma. This manifested for Jenni-Lee as an eating disorder followed by additional mental health struggles.
With another family member also sharing a similar experience, Jenni-Lee notes that genetics may have a role in the onset of eating disorders.
Jenni-Lee has chosen to participate in the Eating Disorders Genetics Initiative 2 (EDGI2) – 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.
Today, Jenni-Lee has decided to share her story to raise community awareness and understanding of living with an eating disorder, and to urge those who are currently afflicted to seek help and support.
This is Jenni-Lee’s story.
At the age of 15, Jenni-Lee began to show signs of anorexia nervosa. Once a top record holding athlete, her struggles with disordered eating eventually forced her to give up her athletic pursuits due to the physical toll it took on her body.
“My battle with anorexia nervosa meant I slowly ‘closed the door’ on being a top athlete and vocalist.
“My life was ruled by extreme fatigue, a lack of energy and obsessive thoughts and behaviours,” said Jenni-Lee.
“I couldn’t understand how the other girls could achieve so much in a day.
“Because of my restrictive food habits, I only had the energy to do about a quarter of what the other girls my age could handle,” Jenni-Lee said.
“At the time though, I honestly thought my eating habits were normal.”
When Jenni-Lee stopped menstruating, her concerned mother took her to the doctor.
“The doctor asked me what I was eating but did not ask about the quantity. He didn’t consider that I may have had an eating disorder,” said Jenni-Lee.
The unhealthy habits continued for nine years. At age 22, Jenni-Lee married and moved interstate. At this point her health declined even further and her weight was dangerously low.
“When I moved, life went downhill. I was very sick; and I didn’t know what was happening.
“My doctor thought I was unwell from the stress of moving from Adelaide to Melbourne and not having a job,” Jenni-Lee said.
Unbeknown to those around her, Jenni-Lee was hiding her battle with depression, excessive exercise habits, strict control over her diet and occasional binge-eating.
Within the first year of living in Melbourne, a colleague recommended she visit a psychologist. It was then that Jenni-Lee was diagnosed with anorexia nervosa.
“When I was diagnosed, it was very confronting. I had always been so fearful of putting on weight and being out of shape. I thought if my body and aesthetic changes, I might lose my husband and friends,” said Jenni-Lee.
It took around two years for her weight to stabilise. While the doctor encouraged Jenni-Lee to put on weight by improving her food consumption, they didn’t ask about the root cause of her disordered eating.
Despite overcoming the eating disorder, Jenni-Lee went on to develop a range of associated health challenges, including OCD. suicidal thoughts, depersonalisation, chronic fatigue and migraines.
Thirteen years later, with the support of a psychologist, Jenni-Lee was guided to explore her life and the events that had contributed to her downfall. It was during this time she discovered and unpacked the trauma she had endured throughout her childhood.
The combination of living in a religious, perfectionist household, as well as being subjected to sexual abuse by a family member, had impacted her character and wellbeing.
“It was the first time someone asked me about my childhood and where they thought my eating disorder may have originated from.
“It wasn’t easy to confront my childhood trauma, but I needed to change in order to heal and to look after my children,” Jenni-Lee said.
After undergoing treatment with her psychologist, Jenni-Lee was able to understand how her past experiences contributed to the development of her eating disorder and mental health issues.
With another family member also sharing a similar experience, Jenni-Lee is mindful that genetics may play a part in the onset of eating disorders.
“Understanding if people with eating disorders have specific gene mutations could be useful for those in the recovery process.
“EDGI 2 is an important study to help broaden understanding of the cause of eating disorders for the purpose of adding to and/or improving the treatment options available,” said Jenni-Lee.
Jenni-Lee has important advice for all Australians who are living with an eating disorder.
“It is imperative to get help as soon as possible when an eating disorder is identified. The damage an eating disorder can inflict on the physical body, emotional development and one’s life choices can be catastrophic, which can be difficult to comprehend when in the grips of the disorder.”
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
