Cushla McKinney

Script for Sunday Supplement, Broadcast on National Radio, 5th September 2004

The issue of eating disorders has recently surfaced in the media, as a result of the review of funding for treatment services.  To give the discussion context, the usual roll-call of statistics and causes have been trotted out-for example, that eating disorders have the highest mortality rate of any mental illness, and that the increased prevalence of anorexia and bulimia is fuelled by cultural obsession with thinness. Although true, these facts are a small part of a far larger and more complex equation. I would like to tell you my own story, as a way of explaining the human cost of these illnesses, and the critical role that treatment can play in determining the course of recovery.

I have been anorexic for 15 years, and over that time I have seen and experienced a paradigm shift in the way eating disorders are perceived and handled by the medical profession.  I never set out to deliberately lose weight.  Sure, at 16 I had the occasional twinge of guilt about my size, but it wasn't a big issue.  What started it was a school tramp.  I'd learnt ballet for much of my childhood, but during my teens had lapsed into rather more slothful habits.  That week in the bush reawakened in me the joy I felt in being fit, in having a body that was strong and tough and capable. So, I decided that I would start to look after it. I'd feed it properly-cut back on the junk food-and exercise it regularly.  I'd flicked through enough books on nutrition and diet to have a fair idea of how to maintain a healthy weight.  Or so I thought. Instead, that summer turned into the longest of my life.  Slowly, inexorably, the wheel began to turn. Every day I would have to do a little bit more exercise, eat a little less than the day before, and what began as a pleasure became a hell.  The only solace came at the end of the day, when, (provided I had not rested, nor eaten more than was “allowed”) I could collapse gratefully into the oblivion of sleep. But it is hard to rest when your bones stick into the mattress no matter how you lie, when you cannot get warm, when your hunger is tearing holes in your consciousness.  And even when it does come, you still have to wake up to the nightmare the next morning, drag your aching body from the bed and face the tortuous hours that lie between you and the welcome night. By the end of the summer I was down to about 32 kg, and my parents sent me to Ashburn Hall, a private hospital with a specialised eating disorder program.

At that time, anorexia was considered a purely psychiatric illness, and the standard treatment was an “incentive” based system designed to encourage weight gain.  I was shut in a room with only my pyjamas and a bed-no books, music, drawing, writing materials or visitors-and slowly “earned” these privileges back as I put on weight.   This was very effective in one sense; I spent a couple of months lying on my bed to minimise energy expenditure and eating anything I could get my hands on, just to escape.  Unfortunately, it also served to entrench the disordered thinking that had landed me there in the first place.  Part of me had really enjoyed having the permission to eat, particularly “bad” foods, so I couldn't really be anorexic, could I?  In fact I'd proved how greedy and lazy I really was. Food and rest became automatically associated with getting fat, and I had even less idea of what normal eating and exercise patterns were than I did when I was admitted. The next 14 years followed a cyclic pattern of hospital admissions when my weight became medically dangerous, a blissful period of being allowed food and rest as my weight stabilised, and discharge back into the nightmare again to restart the slow and painful decline.  Over that time I saw great changes in the availability of treatment at Dunedin Public Hospital, slashed from full inpatient programmes to 6 week “stop-gap” measures which were not, strictly speaking, officially authorised.

It was suggested that I go on the waiting list for the Eating Disorders Unit in Christchurch, but the only way I was able to accept help was when I was completely desperate.  The time waiting for a bed to become available would have been spent ensuring I was sick enough to justify admission when it eventually came.  Although periodic intervention allowed me to complete my university studies, and eventually gain a PhD, they didn't give me any way out of the illness, and after 15 years of it, I thought I would never be able to recover.  I had no memory of what life had been like when I was well.  My illness gave me an identity and status as one of the anorexic elite, a sense of pride in my self-discipline, a convenient excuse for failing, and a source of attention and concern from others. I couldn't imagine things being any different.

I was working in the United States on my first postdoctoral fellowship when the crisis came.  My weight plunged to half the healthy minimum for somebody my size, and I was admitted to the Eating Disorders unit at Johns Hopkins Hospital — where I found the type of help I'd been seeking for what felt like eternity.  It combined weight restoration with intense group therapy, medication to alleviate the depression and obsessive/compulsive components of the illness, and, most importantly, re-learning how to live normally.  We practiced eating out at restaurants, supermarket shopping, preparing and eating balanced meals with other people, buying clothes, how to balance work and leisure time and much more.  In-patient treatment was followed by gradual transition to full discharge, then extensive out-patient follow up and support.  And by addressing the physical, psychological, emotional, social and biochemical aspects of the illness simultaneously, it made all the difference.  I have been in recovery for 18 months now, and although there are daily struggles, I no longer awake every morning to a nightmare.

I still have to live with the consequences, including osteoporosis and infertility, but I am one of the lucky ones — unlike many of my anorexic sisters I managed to continue studying despite my illness, and I did eventually find the support I needed to recover.  But I can't help wishing it had been there when I first became sick. Thankfully, treatment programs have improved considerably, with eating disorders are now recognised as being a combination of both psychiatric and neurological factors, and recent research into the into the genetic and biochemical basis for eating disorders has resulted in a combination of medication and therapy that is more effective than a purely psychiatric approach.   Even with these advances, however, treatment remains a lengthy and expensive process.  Savings will come in the prevention of relapse rather than the upfront costs of primary intervention, and it is worth every penny.  For society which is losing more and more of its daughters and sons to these illnesses, to the families torn apart as they watch their children self-destruct, and most of all for those of us who cycle endlessly through the nightmare, day after day after day.