For those who have experienced an eating disorder, the stories section may be triggering for you. If you feel you have the potential to be upset, please do not read. If you are upset, please reach out to your support network or contact Lifeline – available 24/7 – on 13 11 14. Look after yourself. Be safe.
The story behind the start of the campaign.
My name is Ella Graham.
I’m 23 years old. I’ve had an eating disorder for a long time. 11 years. At times I’ve thought I was going to die from this disorder. At times I nearly have. I am not underweight. My diagnosis is Eating Disorder Not Otherwise Specified; one of the more common, but lesser known disorders.
I was properly diagnosed when I was 16, although my behaviours started at age 12. At age 17 I received five hours of treatment at the ACT Eating Disorders Service. From there, at age 18, my family sent me to outpatient treatment in Melbourne at the Bronte Centre (which no longer exists) – flying between Sydney and Canberra. I did not complete the treatment as the financial burden became too much for my family and the burden of guilt too much for me.
At age 19 I moved to Sydney and within six months of moving here I relapsed and was quickly admitted to the Eating Disorder Program at Royal Prince Alfred Hospital’s Missenden Unit. Initially I thought I would only be a patient for a week or two, but weeks stretched into months and almost four months later I was discharged. The care was substandard at best, but it saved my life at this time. The program was located in the locked acute care psychiatric unit. I was the youngest by a long way for the majority of my admission and groups were regularly cancelled. Often the staff who supervised the program were poorly educated about eating disorders. This is not the fault of the staff working on the ward – it was very clear from my admission that the lack of funding and the fact there is not an eating disorders unit to treat eating disorders patients in NSW is the reason it was so difficult to provide comprehensive care. Despite no step-down program being available, I managed to stay reasonably well for nearly two years. During that time I studied and graduated from my Nursing Diploma as an Endorsed Enrolled Nurse. I worked for a non-government organisation and volunteered with multiple charities.
Mid-2011 I relapsed. Words do not justify the unbearable depression I experienced at that time, enhanced by limited access to treatment. I spent much of 2011 recovering from my eating disorder relapse and depression. By August I’d picked myself up and began working part time as a nurse in a major Sydney hospital, was studying my Bachelor of Nursing and was volunteering regularly.
March of 2012 I again relapsed and was forced to take extended leave from my nursing position and leave from my studies. I was meeting with my psychiatrist, GP and psychologist weekly; being escorted to emergency departments for medical instability directly from my eating disorder regularly and not coping emotionally with the exhausting and frustrating illness that is an eating disorder. Slowly things turned around and I thought I was nearly well, until I relapsed. Again.
After going to the media I was offered a bed on RPA’s eating disorder unit. From there I received care at Northside Clinic, which I found over populated, under resourced and treatment that was not personalised to my needs. I left the clinic and travelled interstate to the Geelong Clinic where I received comprehensive treatment over four months, which ultimately has helped me claim my life back.
Recovery is a long journey. Some days are difficult. Other days are not. I still have a lot of areas of my life and my illness to challenge in order to become fully well.
I should NOT have needed to become medically unwell to receive care for my mental illness.
I started the Fed Up Campaign because, while my story was important to tell, eating disorders are an issue that neither the medical nor psychiatric community want to own. They are still often seen as a lifestyle choice instead of a serious psychiatric illness. They have been left off the political agenda, the mental health debate and without adequate funding for far too long.
I have met so many people who have been left to fall through the cracks for far too long and it is not good enough. I’m one of the lucky ones. Other people who haven’t had the support I’ve had are left to spend what precious energy they should be directing to fight their illness into fighting the system and we can’t do it alone anymore.
In short, I am Fed Up, NSW Health.