By JUNE ALEXANDER
I felt good, rolling up my sleeve in the local community health centre, to donate blood. This was no regular blood sample. This was for gene research and discovery. My blood was being collected as part of Australia’s contribution to the Anorexia Nervosa Genetics Initiative, a global effort to identify genes that contribute to eating disorders.
Within hours the blood sample was traveling 1700 km from my small hometown in Victoria by courier to the QIMR Berghofer Medical Research Institute(QIMR) in Brisbane. 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’.
I cried tears in my soul that day. 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 affects, in some way, every member of the family. Its mantra seems to be ‘isolate and conquer’.
When I walked down the aisle at age 20 to marry George, my childhood sweetheart, anorexia went with me. I could not shake it off. It was worse than a monkey on my back. It was a black octopus, a 24/7 bully, in my brain. Eventually it destroyed my marriage.
My love of writing and love for my children had helped me survive, and eventually, in my 30s, I began to meet health professionals who understood the illness sufficiently to set me on the long road to recovery. I had felt on the periphery of life, like being lost in a dark forest and not knowing where to turn, for decades; now I was receiving help to find a way out – and regain me. At age 55, I gained my freedom from anorexia and began writing books to help others who, through no fault of their own, were suffering this illness. Helping others has been the best way to give purpose to my life experience. In giving blood, besides tears in my soul, I felt joy and happiness thinking of my children and grand children, and children yet to come. Like sufferers of anorexia everywhere, I don’t want others to develop this illness but if they do, I want them to have access to prompt diagnosis and effective treatment.
I was excited and honoured to be invited 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. Response to news about the research has been amazing with more than 600 Australians offering to roll up their sleeves and donate blood for research in the first 12 months. Now, we need another 600 participants.
Make your experience count
If, like me, you have suffered from anorexia nervosa, make your experience count in finding a cure and register today! Logon to angi.qimr.edu.au or call 1800 257 179 to find out how to help in this great international effort to find a cure for anorexia. Reaching out takes a lot of courage because anorexia thrives on fear and anxiety, but I hope you will go ahead and reach out anyway – you will be so glad you did. Perhaps you know someone who has had anorexia – please let them know, too.