Bye bye to bully ‘ED’

Bye bye to bully ‘ED’

I’m excited. A dream is coming true. On May 24 and 25, in Brisbane, Queensland, Australia, eating disorders will be put on our map for all to see. Eating disorders will be put on notice. Yep, ‘ED’, your time is up. No more hiding, pretending, manipulating or bullying your prey. We are on to you. We are exposing you. Every day I talk with people who are registering for At Home with Eating Disorders, our  first national eating disorder conference for families, carers and sufferers.

The need for this conference is immense. I struggled in the dark forest of my eating disorder during the 1960s, 1970s, 1980s and 1990s. For the first 20 years I had no help at all. ‘ED’ thoughts and behaviours were entrenched  and recovery, which began with diagnosis in my 30s, was a long, long road. By some miracle, I survived. I want to think that young women and men who develop an eating disorder today, do not need to suffer alone or for anywhere near as long as I did, but while we have more awareness, we have a mighty long way to go in educating not only  families and communities but also many people in our medical profession. We have a long way to go in recognising that eating disorders, which can cause severe physical health problems, have the highest death rate of all psychiatric illnesses, and above all are an illness in the mind.

Every day I hear from parents and sufferers who are barely ‘treading water’ in their efforts to stay afloat in the face of the bully eating disorder that has imprisoned a beautiful mind. And believe me, it is always a beautiful mind. Every sufferer I meet has a beautiful nature, a beautiful soul. Sweet, creative, talented, intelligent, conscientious. These are words that spring to my mind when thinking of people I know with an eating disorder. We hear that nurses and doctors love to avoid caring for eating disorder patients – basically because they like to see people ‘getting well’ and people with eating disorders generally don’t understand that they are sick, and therefore don’t understand the fuss, and have no desire to ‘get well’. They are likely to appear ungrateful. This attitude is not due to the patient being rude or horrid, but due to the illness playing tricks in their mind. This seemingly stubborn attitude is due to the symptoms of the illness. The beautiful true personality and identity of the patient is imprisoned and suppressed by their illness. Help in the form of constant vigilance and love, and medicine in the form of three meals and three snacks daily, is needed to set them free.

While the sufferer is consumed within their illness, the parents, partners, and other carers, often cop the brunt of the illness thoughts and behaviours. A sense of humour and a thick skin are essential tools for survival. Home life becomes akin to walking on egg shells, in a bid to avoid saying something, however mundane or innocent, that sets off an ED trigger. Given half a chance, half a second even, the deceptive and cunning illness can entrap loved ones as well as the sufferer.

This certainly happened in my family of origin. My family did not understand what behaviours belonged to my illness, or to the real me. For too many decades, I did not understand, either.  I was considered the one with ‘problems in the family’ and therefore unreliable, and not worthy of inclusion. Alienation, rejection, estrangement ensued and became the norm. Ouch, these things hurt.

Today, I reflect and feel I have lived several lives. Four decades of behaviours belonged to my illness; but, thanks to wonderful therapists and eating disorder researchers like Daniel Le Grange, Janet Treasure and Cynthia Bulik, who will be keynote speakers at our  first national eating disorder conference, today I am free of my eating disorders. I am the true, real me. Sadly, I achieved this freedom too late for my parents to understand and acknowledge that I was still the bright little girl, still the daughter, that existed before anorexia developed at age 11. Too late for them to understand that my true self was imprisoned and shackled by ‘ED’ for 40 years.

But life goes on. There is definitely hope at every age. Today my family comprises a wonderful partner, beautiful children and grand children. I count blessings daily, focusing on what I have, rather than what I have lost.

I know what it is like to feel alone, to feel scared, to feel powerless, to feel tormented, to think ‘I don’t know if I can try one more time’. For me, such feelings and thoughts belong in my ‘other life’, the life dominated by ‘ED’.

Today I know that there is no need for you to be alone. Today I know you can be free, too. Come to Brisbane. Help me celebrate a dream-come-true. See you there, May 24-25.