MY JOURNEY

You might wonder why a grandmother has written a book about family-based treatment for children who develop Anorexia Nervosa.

The answer is found in my childhood.

I developed anorexia nervosa shortly after my 11th birthday, in 1962. The illness was unheard of in the rural region where I was growing up – a dairy farming district in the southeast corner of Australia.

My mindset then was the same as that experienced by children with the illness today. I was struck by this revelation while interviewing the children who share their stories in My Kid is Back. Many of their thoughts and feelings were the same as mine, in another place, another time, another century. If I needed proof that anorexia nervosa is a pervasive and insidious illness of the mind, this was it.

The creepy thing about anorexia nervosa is that, initially at least, the sufferer is not aware the thoughts and feelings belong to the illness and not them. This is why early intervention is crucial. Generally, the longer the illness goes unimpeded, the more its behaviours and thoughts become entrenched.
Anorexia nervosa can happen to any child, anywhere in the world – whether in a rural district, a small town, or the middle of a big city. It can happen to any child from any social status – wealthy or poor – or any culture.

At age 11, my family home was not connected to electricity – we had a wood stove and used kerosene lamps for lighting; I carried a candle to bed. My primary education took place at a one-room school of 24 children, and our family farm was12 km from the nearest small town. My world revolved around riding my bike, horse riding, swimming, reading books and happily helping my parents to look after the cows, calves and chickens. There were no glossy magazines or suggestive television shows to influence my thinking.

I developed anorexia nervosa more than 45 years ago, but memories of this time, when most of my thoughts suddenly became no longer my own, remain crystal clear. My parents and my sister, who was several years older than me, seemed unable to comprehend that I had an illness. My parents took me to one doctor, when I was 12, who advised them that I did ‘not want to grow up’ but that was the limit of any explanation. At this time there was a lack of awareness not only about anorexia but also about mental illness. The reason I did not want to grow up was because I wanted to be a boy. (This story is told in my memoir.)

I changed from being a sunny, bubbly-natured child to being increasingly selfish, self-centred, stubborn, withdrawn, moody and inflexible. My mother was embarrassed by my emaciation and equally by my insistence of running everywhere. When pressured to visit neighbours or friends, I refused to eat and couldn’t sit still.  In the countryside, there was no place to hide and therefore my behaviour was embarrassing – my mother was constantly saying: “what will the neighbours think?”

My parents could not understand that my anxiety or depression was part of an illness or that my self-centredness was due to fighting a battle within.  My exasperated mother pleaded: “Why can’t you be like other girls in our district?”  I wanted to be like them but didn’t know how; I didn’t know that I was suffering an illness. If I tried to explain I was told I had too much time to think, that I should ‘pull up’ my socks – in other words, get on with life. My sister, exasperated with my behaviour one day, said: “You have Satan within you.”

As Kelly, who shares her story in My Kid is Back, points out, the distinction between mental illness and not having mental illness is like a spectrum; those who don’t understand don’t relate. Sometimes family members find it easier to ignore or deny one of their loved ones has a mental illness, because to acknowledge it would compel them to address issues within themselves.
On entering my teenage years, my untreated anorexia evolved into bulimia. In many ways, my life became one big torment. I looked ‘normal’ but within my mind I was living two lives: one internally with my eating disorder and the other with the outside world.

Literature and writing were my ‘escapes’. At 18 I began a career in newspaper journalism, and when I married a farmer at 20, three of us walked down the aisle – my husband, my eating disorder and myself. I tried to be “normal” but my torment grew. My illness continued to gnaw holes in my mind and my soul.

By my mid-twenties, although working full-time, studying by correspondence and being a Sunday School teacher, I feared I was going crazy and would be locked up and separated from my husband and four beautiful little children. I strove to keep myself busy to try and escape the constant emptiness within. It didn’t work. Death seemed the only way out but my love for my children gave me strength to confide in a family doctor. By now my illness had been untreated for 17 years. For the next five years, I was misdiagnosed; I was 33 when referred to a Melbourne psychiatrist who understood my illness and my struggle. This was Professor Graham Burrows and he remains a rock for me today.

My undiagnosed anorexia and bulimia had set me on a roller-coaster path of chronic depression and anxiety, self-harm and broken relationships. The loss of my immediate family – my parents and sister – had been a ‘win’ for my illness.

So too was the breakdown of my first marriage – in my desperation to escape the torment, my illness convinced me that my loving husband was holding me back from recovery. Of course the opposite was true – without his support, my illness worsened - and for years I verged on the brink of insanity.  I’d lost my family and had almost lost myself.

My long journey of recovery was about to begin. However, unlike the stories in My Kid Is Back, my journey was undertaken without the support of my parents and sister. They could not understand that if I were sick, why did I take so long to get better? “Your doctor must be no good,” they would say, or “You’re not still seeing him, are you?” Such comments were borne from ignorance and lack of awareness but at the time they cut deep and hindered my recovery by feeding my illness and making me feel inadequate and unworthy. My self-confidence would zoom to sub-zero. I learnt not to mention anything about my ongoing therapy and medical treatment to my parents or sister. Sadly the effects of the illness forged a rift that grew bigger and bigger between them and myself.

My journey was long and treacherous, my road filled with crevices and potholes. For years, I seemed to fall into each and every one - I’d slip into a depression and take months to haul myself out. Without my family’s acknowledgment that I was really an ‘okay’ person, worthy of their love and approval, I floundered about, unable to find a firm foothold on which to rebuild my sense of self. The little girl of 11 remained in my troubled mind and body but needed help to escape from the prison of my illness.

I married and divorced another two times and moved house more than 20 times, always seeking a ‘new start’ to escape my torment. Of course, the torment went everywhere with me. When it raged, I allowed men into my life who were attracted to my illness rather than me. With my sense of self-shattered, all my morals went out the window.

My illness led me to behave in ways that the real me would never approve of or consider, making me appear unreliable and extremely unstable. One divorce was bad enough – three were unheard of! The pain of being misunderstood pierced my soul; my sense of isolation and rejection was extreme.

Months turned into years, and years into decades. I lived for the day when I could shout to the world: “I have recovered my soul! I have peace in my heart and my mind!”

At 55, I was free to do this. I’d got myself back!

I’ve shown the battle can be won without one’s family but I wouldn’t wish this long journey on anyone. Recovery from anorexia nervosa, as with other chronic illnesses, requires a team effort. Without family support, the rebuilding of one’s identity is more arduous; the reclaiming of a sense of self-worth and acceptance more difficult. If you don’t have immediate family support, be open to accepting help from extended family or friends you know you can trust. If you don’t have a family, create one.

Was my battle worthwhile? Yes! It enhanced and increased my capacity to appreciate life, its beauty and its depth. Consider anorexia nervosa as the worst type of aggressive weed you can find in your garden or in the park or woods. The longer this weed goes untended, the stronger its roots take hold and the harder it is to ‘weed out’. Natural growth is smothered and stunted. So it is in the garden of the mind. Anorexia nervosa can spread rapidly if not ‘culled’ quickly and efficiently. Parents, working with family-based treatment therapists, are the most powerful ‘tool’ to take on this task until the child is capable of nurturing and resuming care of their own beautiful ‘mind garden’.

I know a ‘cure’ is not possible for me, but I am ‘recovered’. Twenty-three years of ongoing therapy have helped me re-discover myself, improved my quality of life, and set me free. To be at peace within my mind, after more than 40 years, is a continuing joy I cannot sufficiently describe.

To other long term sufferers of eating disorders, I say: DON’T GIVE UP!

While my illness will always be with me, now it has no more than 10 per cent say in my life, which means I outvote it every time! I no longer bruise myself mentally, emotionally or physically. I am my own best friend.
For years my illness did not allow me to do enjoyable things, like dining out with friends, or being with people I loved, especially my children. I looked after them but rarely allowed myself to play with them or be involved in their school or sporting activities. They didn’t like to invite friends home because they didn’t know if I would be having a good day or a bad day – if I would be happy or if I would be depressed and crying. I tried to explain my illness and my struggle to them as they were growing up. Today, as adults, they remain a source of strength and inspiration. In many ways, they provide the emotional support and understanding that my parents and sister were unable to give.

Two other very important people are my psychiatrist and therapist who believed in me, when I was unable to believe in my self, and persisted in their guidance.

My recovery took a big step forward when dietician Belinda Dalton suggested that I try to separate my illness from my sense of self. By now I was 47 years old. Heeding Belinda’s advice, I was able to start recognising what belonged to the real me and what belonged to my illness. This helped enormously in gradually piecing together my sense of self. Sometimes I slipped and regressed but gradually I rebuilt my identity, which had been marred by my illness for more than 45 years.

My recovery shows it is possible to get better via therapy alone, but I truly believe the recovery period will be shortened immensely with family participation. There is one simple but powerful get-well tool that therapists, for all their care, cannot offer, and this is LOVE. Families can offer this in loads. Love is the most powerful tonic of all.

In place of my family, psychiatrist and my therapist helped me feel I was ‘okay’. Their guidance, together with the understanding and love of my four adult children, and the life-long friendship of their father, is a huge reason why I have recovered sufficiently to help raise awareness of eating disorders.

Three years ago I resigned from my position as a newspaper editor to climb what I called my ‘literary Everest’. At 55, after decades in ‘training’, I was ready: strong enough and resilient enough, to expose my anorexic-bulimic tormentor, in the only way I knew how: with words.  I would share my story, with the wish that other children would not suffer so long. While researching for my memoir I learnt about the Maudsley Approach and thought: “this is the answer! This is what I have dreamed of, and yearned for, through my struggle!”

My memoir went on hold while I wrote My Kid Is Back. I didn’t want children to suffer as I did, into their adulthood.  I wanted their personalities restored, quickly, surrounded by their family’s love and understanding. I didn’t want their illness to tag along, as mine did, when they left home, entered relationships and embarked on careers.

Estrangement from my sister and a ‘surface talk only’ relationship with my parents and sister is a legacy of my illness. Right until my mother’s death in 2009, the little girl inside me craved to hear her say: ‘I love you’. I’m sure she did love me, but not in the way I needed. This is why the Maudsley Approach is important in fighting Anorexia Nervosa. It not only helps the child recover; it bonds and helps families stay together. Nothing is more important than this.

Postscript: Today my eating disorder does not stand a chance with my children and three beautiful grand children – Lachlan, age three, and babies Ashton and Olivia Rose – all helping me to live in the present and celebrate each moment.

My memoir is now with literary agent Margaret Gee and I am co-authoring an international eating disorder textbook with Professor Janet Treasure, of King’s College, London, to be published by Routledge in 2011.