Jess’ 17 year battle with anorexia

Jess (l) has battled with anorexia for 17 years. Source: Supplied

JESS Mortlock is an articulate, gentle 30-year-old woman who lives on the Gold Coast and works as a cafe manager. Jess has also been battling with anorexia nervosa for seventeen years — that's more than half of her life.

There have been times Jess has been hospitalised for months on end. She has been told more than once that she will die if she does not eat. If only it were as simple as that.

"It's incredibly hard to articulate, anorexia ... it's not a mental illness like any other," Jess explains to news.com.au. "There's undoubtedly a part of me that's not quite right, but it's really hard to be tarnished with that 'mental illness' brush. I'm aware of my irrationalities, I know sometimes that what I think or say or feel is crazy, but it doesn't make it any less real. It's something that's inside me. It has never been about looking thin, it's just a way of feeling.

"I've been through every kind of therapy there is to try and find out a moment that triggered this for me, but there wasn't any. Looking back all I can remember feeling is sad. A way to deal with that feeling for me was by not eating. I don't know why, but it was a fantastic way of not feeling. But it turned out that as much as I thought I had control, I didn't.

"It's such a hard illness to treat. I've been in medical units, psychiatric units ... they treat the physical, or they treat the mental, but not both. The first time I was admitted to an inpatient specialist unit, it was the worst possible thing to happen. I was young, and being in a place like that it was almost reinforcing that I had to be better than the people around me. When you're in a hot box with other people, there's a competitive element. Anorexia nervosa is an illness that drives perfection, and putting a whole lot of people who feel like that in together is really dangerous. But then in the psychiatric unit, I was with a guy with severe psychological problems, it was absolutely terrifying being in there with people with schizophrenia.

'I know that I don't want to die when I'm 40.' Source: Supplied

"I've been at a place where my doctor has said, you're going to be dead in two days if you don't eat. They put a tube down me and I pulled it out. I did not want to die, I never wanted to die, but I was too scared to be anything different.

"At the moment I know who I am and what I want. It doesn't make it any easier getting to that place, but I know that I don't want to die when I'm 40. There's no rational reason why I have anorexia, and it's something I believe was born inside me."

Jess is not alone in the belief that anorexia nervosa may be linked to a person's genes. In fact, that notion is at the heart of a new research project from The Anorexia Nervosa Genetics Initiative (ANGI).

The ANGI have undertaken a massive research project endeavouring to identify and better understand the causes of anorexia nervosa. The study has centres in Australia and New Zealand, Denmark, Sweden and the United States, and aims to detect genetic variations that may play a role in the potentially life-threatening illness — and hopefully find a cure.

"There's a lot of evidence in the current literature to suggest there is a genetic link, that genes play a role in anorexia nervosa cases," explains Dr. Sarah Maguire, Director at the Centre for Eating and Dieting Disorders and part of the expert team behind the ANGI research study.

"We know that from things like twin studies, where we look at incidence rates of anorexia nervosa in identical twins who have been raised in the same environment, and non-identical twins who have been raised in the same environment. There are more cases of anorexia nervosa in identical twins than non identical twins — so even though the environment is the same, if the genetics are identical there is a higher risk.

"We also know that a first or second degree relative having anorexia nervosa is more likely. That shows that in some cases you don't have to have grown up in the same environment, just be part of the same family," she explains.

Jess is one of many who believe genes play a big part in anorexia nervosa sufferers. Source: Supplied

"All of us who work in this field pretty much believe there are many causes, and a bunch have to do with environment, but it does look like there's a genetic vulnerability," adds Dr Maguire. "This study will look at the whole genome in a group of people who have had anorexia nervosa, compared to a whole group of people who don't have it. We are looking for multiple points that are similar on the genome, and so we need huge numbers — we need 13,000 blood sample from people who have a lived experience with anorexia nervosa in the first instance, and we'll just keep going and collecting more and more.

"In other illnesses where researchers were able to identify the genetic profile, they were able to target drugs for treatment. The genes give you clues. We hope to develop of a new suite of drugs to treat anorexia nervosa — we use antidepressants currently which do help a bit but there is certainly no drug that exists that eliminates the symptoms.

"Even more importantly, if we were able to identify the genes involved in anorexia nervosa it would lead to multiple research initiatives around prevention. They work better than generalised interventions, and if we know it does run in families we can identify psychological vulnerabilities and target prevention."

Early intervention and prevention are two forms of treatment Jess wholeheartedly agrees with, and she is one of thousands of people who have already signed up to assist with the ANGI research.

"In hindsight, I feel like intervention is the key," she says. "Stopping something before it becomes ingrained.

"For me it's not so much something that I actively do anymore. It's almost like a habit, like smoking. I know that my life would be better without it but it's so much a part of my identity, I don't know about any other way of living.

"If you can somehow find that gene before the person gets completely taken up by anorexia, it would be amazing. It's such a long road and I'm so wanting to be that person that I am underneath, but to unlearn the behaviours and thoughts and beliefs that are now ingrained in me takes so long.

"If they can uncover that there is a reason behind anorexia nervosa, that's going to pave the way for finding possible ways of dealing with it. It can give us an understanding. If they can create a medication that targets it too, that would be my dream. I don't know if that's a realists dream, but that would be my dream."

To register for the study or for more information, please visit angi.qimr.edu.au or freecall 1800 257 179.

Over 2,000 Australians are expected to take part in a global anorexia study to help understand the disease.

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