'I now realise that I probably inherited my mother's eating disorder.'

Researchers are hoping to find out more about the link between eating disorder and genetics.

My parents heard the ‘bang’ when I fainted due to lack of nourishment and fell in the bathroom of their home. It was the morning of my wedding day. When I walked down the aisle, at age 20, to marry George, my childhood sweetheart, anorexia went too.

By appearance you would not know that my body was under-nourished. I looked of normal weight, the illness having transitioned into bulimia, accompanied by anxiety and depression. By mid-twenties, I continued to look ‘normal’ but my mind resembled a prison camp dominated by a binge/starve cycle riddled with self-punishing and self-harming demands. The eating disorder thrived on secrets and isolation.

Eventually it destroyed my marriage and almost me.

The anorexia, which had developed at age 11 as a friend to cope with a very stressful time, had extended its hold through adolescence and into young adulthood. Its 24/7 bossy demands became relentless, increasingly impossible to meet. Every day was ruled by diet and exercise regimes created in an endeavor to ease fear, anxiety and feelings of guilt. The bar was forever raised. Nothing was ever enough.

Outwardly I presented as a wife, mother, journalist, sister and daughter but my diary revealed a different story: with daily lists and pledges reflecting a desperate bid to escape the constant torment in my mind.

The few times I had tried to discuss how I felt with my mother, she had indicated I thought about myself too much, and that I should put the needs of others before those of my self. Therefore I thought I was weak, that I should be able to cope. The illness encourages this thinking, also, for it wants you all to itself. Isolate and conquer is its underlying mantra.

Getting through the day required:

• weighing this number of kgs
• running this number of kms
• eating no more than this number of calories
• … and doing this, this and this.

Then came an awakening moment.

At age 26, I was suicidal. I could see no way out. My husband felt helpless and distraught. It was after one night when our children had scrambled under their beds in fear that my love for them managed to override the magnetic hold of the eating disorder and, fearing a diagnosis of madness, of being labelled an unfit mother, allowed me to disclose my secret inner struggle to a doctor for the first time.

Six years of misdiagnosis passed before a health professional, a psychiatrist, saw me beyond the entrenched layers of illness and offered something more than a quick fix of  pills: he listened and encouraged written communication.

Shortly after, at age 36, in a critical moment, deep within a dark well of despair and disembodiment, I discovered and clung to a tiny thread of true self. This was the turning point. Slowly, a U-turn was achieved. A desire to recover took hold. Working with a supportive treatment team, threads of true thoughts and feelings were reconstructed and regained, a shattered identity reformed.

At age 55, a wondrous reconnection with authentic self was achieved; I became more ‘me’ than eating disorder, with inner peace replacing torment and self-harm giving way to self-love. 

Throughout the long journey to be free of the eating disorder, my children gave me the strength to not settle for a part-life. Also, I yearned to show my parents and sister that the daughter and sibling described as ‘the problem in the family’ and assumed ‘lost’, was still ‘here’, just buried under the illness.

Sadly, by the time I ‘regained me’, my family of origin had established a way of life that did not include me. My marriage had been another victim of the illness; however George has remained a dear friend and support; and our four children, as they entered young adulthood, and understood more about my illness, became my carers and guides. As for our five grand children, they are the best tonic ever.

Related: “I survived anorexia.”

Having ‘got my self back’, I wanted to understand what had happened to me and why. Did others feel the same way? Departing a long time career in journalism, my focus turned to the field of research in eating disorders. In 2006, I began writing books to raise awareness of eating disorders and to help others who were suffering this illness. Helping others has been the best way to give purpose to my life experience.

The answer could be in our genes

I know now that at age 11, I developed an illness that could be treated. I did not choose to have anorexia, and my parents did not cause it. Today we know that early intervention with appropriate treatment is the best hope for prompt return to normal lifestyle; we know that recovery, as in my instance, can occur at any age. But understanding why the illness develops in the first place remains a mystery.

Excitingly, latest research shows that genetics may hold the answer to the cause of anorexia. Eating disorders, or related mental health challenges, such as anxiety, depression or obsessive compulsive disorder, may appear in other family members through the generations. Upon reflection I see that my mother suffered anxiety and most likely an eating disorder. Sometimes an individual may be genetically and psychologically vulnerable, and whether the illness develops or not may depend on whether an environmental trigger goes off. There are many factors and this is why research is very important.

This is why I jumped at the chance to roll up my sleeve in the local community health centre, to donate blood as part of Australia’s contribution to the Anorexia Nervosa Genetics Initiative, a global effort to identify genes that contribute to eating disorders.

To know that I was contributing in a small way to helping researchers find a cure for anorexia nervosa was emotionally overwhelming.

Here I was, 50 years after developing anorexia nervosa, having a chance to contribute to science and help understand and find a cure for the eating disorder illness that tormented and almost took my life. It was like someone saying ‘we acknowledge you have had a real illness, and you can help us help find out why’.

Read more: The incredibly common eating disorder that nobody has heard of.

I cried tears in my soul that day I gave my blood. Tears for myself, for the decades when I felt like a weak-minded misfit; tears for my parents who were not alive to know about this research. Tears especially for my mother, because she did not understand what happened to her younger daughter, me, at age 11.

She did not understand that I had an illness in my brain. She certainly did not know that part of the reason was genetic. She did not know how to help me. She did not know the real me was suppressed by this illness; years later she did not know that the little girl she knew remained, imprisoned deep inside the woman I had become. Without intending to, my family often made comments that strengthened the illness instead of me. And as the years rolled by, small misunderstandings became mountains that could not be crossed. Anorexia nervosa affects the sufferer most but also affects, in some way, every member of the family. Its mantra seems to be ‘isolate and conquer’ both life and relationships.

Make your experience count and roll up your sleeve for science

I was excited and honoured to help chief investigator Professor Cynthia Bulik, together with Professor Tracey Wade and Professor Nick Martin, launch the ANGI research program for Australia in Brisbane in May 2013.

If, like me, you have suffered from anorexia nervosa, you can help Australia meet our target of 1200 blood samples. We are almost there! There is a great feeling of excitement and accomplishment in knowing that every test tube filled contributes in a small but vitally important way to understanding and treating anorexia.

As well as in Australia, researchers in the United States, Sweden, Denmark, the UK  and also New Zealand are collecting clinical information and blood samples from thousands of people with and without an eating disorder. If you have suffered from anorexia at any point in your life, you can help the ANGI researchers achieve this goal. Your contribution includes a brief 30-minute interview and a blood sample. It’s easy, I promise.

Researchers learn from sufferers and by taking part in their projects, we are not only helping ourselves, we are helping others.

For more information in Australia visit https://angi.qimr.edu.au/. Neighbors in NZ visit angi.nz

June is studying her PhD at CQUniversity, working on how diary writing can be utilized in the treatment of eating disorders. You can find her at www.junealexander.com