In the early 1950s, at age 15, Dina was sent thousands of miles from her family to stay with relatives on the other side of Australia, because she was ‘difficult’ and ill. This is Dina’s story:
At the time my illness struck, I was in my early teens, living in Newcastle, New South Wales (NSW), then a small and unsophisticated Australian mining town. The words ‘anorexia nervosa’ were hardly known in my community, even by the medical profession, and my illness remained undiagnosed.
My symptoms included extreme loss of weight, obsessive exercising, and refusal to eat. The causes of my strange behaviour were unknown. My loss of weight was not associated with the wish to be slim or attractive. I was already thin, and always had been.
Desperate, my parents consented to electroconvulsive therapy (ECT), which in those days was primitive. At the age of 14, in 1954, I was hospitalised in a mental institution, in Sydney, more than 100km from home.
Traumatising treatment has left scars
The institution was like a prison. I was incarcerated there for several weeks and underwent cruelly painful sessions of electro-convulsive therapy without anaesthetic. I witnessed other patients convulsing while having their treatment. I was still a child and at the end of this treatment weighed very little. I cannot remember how many times I was treated with ECT, only that I dreaded each traumatic procedure. Only now, in my later years, have I been able to talk about this scary time to those closest to me.
The ‘shock treatment’, as it was called then, did not work. It left me with headaches, and an increased inner compulsion to starve myself. To this day I have poor spatial skills such as direction-finding and have lost chunks of my childhood memories.
My parents did not know how to help me when my eating disorder developed, as without a diagnosis they did not know what was wrong. As a next step, they consulted a psychologist. This psychologist recommended that I be sent away from the family to live with an uncle, who was a GP living in Western Australia. These days the treatment approach for anorexia nervosa is the opposite: the whole family is encouraged to participate in treatment, and the sufferer is given strong family and social support.
The psychologist in NSW had heard of a psychoanalyst living in Perth, who specialised in treating children. She suggested that while in Perth I consult the analyst, although this was unknown territory and there was no guarantee analysis would work.
During the following two years in Perth, I further deteriorated, and was too ill to attend school. My face, arms and legs were covered with long fine hairs, and I had no periods. No matter what I did, it was impossible to quell the voice inside me forbidding me to eat.
Journaling was my only solace
Feeling lonely and isolated, and being a long way from home, my only solace was my journal, into which I poured my frustration, anger, and sorrow. I wrote frequent letters to my parents and sisters back home. One sister remembers me writing the words: No-one can ever understand. I myself didn’t understand what was wrong with me.
My journals and letters were destroyed because my family were ashamed of me, to the point of almost denying my existence. My sisters were told not to mention my name when they visited relatives. They had no explanation for my absence other than that I was crazy and had driven my parents crazy, and thus had to be removed from the family ‘for my own good’.
One day, when I was 16 and sheer skin and bone, my uncle the doctor called me into his surgery. He told me two things: the first was that, according to his medical journals, I was a textbook case of anorexia nervosa. The second was that, unless I began to eat, I would be dead within two months.
Amazingly, I didn’t die. When told that I had only two months to live, I made a supreme effort to force food down, which I immediately vomited up. Gradually I managed to keep down smaller portions, and my weight began to slowly increase.
I credit my survival to two factors
The first factor was the diagnosis and naming of the disease, which somehow gave it a legitimate status in the eyes of my family.
The second factor was my treatment by the child psychoanalyst. She saved my life, not only by her skilful exploration of my psyche, but also because of her kindness, and her belief in me.
The effect of naming the disease was electrifying (excuse the pun). My uncle sent a telegram to my father, telling him that at last there was a diagnosis. It meant I was no longer judged as a malingerer by my family, but as a genuinely ill person. The partial removal of blame was like a magic tonic. It changed the way I thought about myself, and externalised my illness, so that, with my psychoanalyst’s help, I was able to look at it objectively.
I still fear the stigmatisation, which was entrenched especially in Western culture, right through to the nineties, and to some extent still is. However, the recent discovery of the genetic and metabolic causes of anorexia nervosa has helped me to see that I was powerless to control the disease and therefore was wrongly blamed by my family and society. This has made a huge difference to my tendency towards depression and the residual guilt which has stayed with me.
Like survivors of the Holocaust and other traumas, I have kept the horrors of my past secret for most of my life. Like them, I now feel an obligation to share my story, in the hope it might help others grappling with anorexia nervosa, as well as their family members. This is where the writing process is helping me to come to terms with my early mistreatment, and to express myself in a way accessible to others.
The urge to write has stayed with me. Over the years I have filled many journals with stories, poems, thoughts and ideas. I’m now working on a semi-autobiographical work of fiction, which draws on my horrific experiences as a person with undiagnosed anorexia nervosa. I have made my story fiction to protect those family members still living, and to give me the freedom to use such techniques as dialogue, metaphor and descriptive processes not always found in non-fiction. Its working title is A Difficult Daughter, which of course is ironic, and publication is anticipated in 2020.
My key messages to sufferers and their families are woven in my story. In brief, I advise anyone with an eating disorder to recognise that you are not responsible for your illness, and to avoid people who blame or judge you. To your families, I recommend extreme patience, understanding, and support. Rather than allowing your child or other family member to be identified by their illness, reassure them that they are still your child/family member. Above all, let your son/daughter/family member know that you love them. Rather than being critical, assure them that you will help them to fight their illness.