My babysitter’s face loomed over me. ‘Be good or no dinner for you,’ she snarled. Julie*, 20, was extremely abusive to me when my parents went out and we were left alone. But she acted like butter wouldn’t melt in her mouth when they were around. ‘Don’t say anything to your Mum,’ she ordered as I shuffled off to bed, sobbing in the dark.
I never said anything – I was too scared – but food reminded me of her. Just looking at it would make my stomach churn and my temples throb, and by the age of six I had developed a full-blown eating disorder.
Me with Dad just before I fell into a coma. Right, at age six, when my eating disorder was triggered due to an abusive babysitter.
Food gave me severe stress and anxiety. I would break out in a sweat at the mention of it and experience a sinking feeling when forced to sit down at the table. I’d refuse to eat in front of other people, scared that I may be threatened not to be served food or worse, forced to finish what’s on my plate. My parents – father Roman and mum Linda – thought I was just going through a phase, and I also tried hard to hide my fears from them.
I would physically shake at the thought of Julie coming to look after me whenever my parents had to go out for work or to visit friends, and yet there was nothing I could do. I was an only child. Dad, now 68, was an army officer, and I didn’t think they would believe me if I explained how abusive Julie was. So I kept my fear hidden, gnawing inside my empty stomach.
Thankfully, just before I turned seven, my babysitter left and I enrolled full time in school. But even after the abuse stopped, my eating habits never returned to normal. I was disgusted with food.
At school I would hide behind a tree at lunchtime and eat my sandwich while the rest of the kids were sitting at picnic tables together. I had a few good friends, but because I was always so thin and scrawny I got picked on a lot at school. I was a good student and enjoyed going to class, but I was a social outcast. I always felt alone, like I was in my own little world.
Even at home I’d barely eat in front of my family and instead I’d sneak food up to my bedroom, turn off the lights and eat inside my closet.
I kept my habits a secret as Dad had strict rules about eating in the bedroom. Occasionally Mum, a business analyst, would notice I was simply playing with my food and ask me to eat, and I would reluctantly take a few mouthfuls to get the spotlight off me. Dad dismissed my behaviour as part of growing up, or a fad. ‘Are you looking for attention?’ he asked, and I shook my head. I tried to act normally around them, but it was hard.
Then, when I turned 12, my fears for some reason increased. My maths teacher noticed I didn’t eat lunch at school and suggested to my parents that I seek help.
I began to worry that I might be putting on weight and would leave in the middle of class to go pace the halls or walk up and down the stairs for exercise. I’d gone from 42kg to 35kg in just two months and fainted twice in school because I was never eating. I met a therapist, and was diagnosed with anorexia as well as post-traumatic stress disorder due to the abuse I’d suffered as a young child. My therapist encouraged me to talk to my parents about what I was feeling. But my dad thought that you could only suffer PTSD if you’d served in the war.
My parents were incredibly naive when it came to understanding my eating disorder. They were in denial that their only child could ever have a mental condition.
‘Eat, Danielle,’ my father would say. ‘Your mum made all of this food for you.’
‘I’m not hungry,’ I’d tell them, trying to keep from raising my voice or starting a fight.
‘You haven’t eaten all day,’ my dad would say. And I would feel my anger rise.
When I was 14 I began following a strict schedule, where I would wake up every morning at exactly 5.47am and go for a 11km run before school. The time didn’t have any real significance, it was just part of my compulsive tendencies to control everything. And even though I had no energy, because I was barely eating anything, I ran everyday on pure adrenaline and willpower.
For breakfast I would eat half an orange and for lunch I would avoid the cafeteria and just eat an apple inside the girl’s bathroom.
Dinner was usually canned tuna and rice cakes and as a treat I would have half a cup of fat-free sugar-free frozen yogurt everyday.
I never allowed myself to go over 500 calories a day and some days I’d only eat lettuce. I also became obsessed with my body weight and would do body checks every day by measuring my waist and my thighs with my hands. I was physically pushing myself to the point where I would nearly collapse from exhaustion. Still, I was so determined to exercise that I wouldn’t return home until I’d completed the full 11km, no matter how tired I was.
To burn extra calories I’d constantly shake and move my legs underneath my desk at school and do 150 sit-ups every night before bed.
With every moment and every thought consumed by my eating disorder I would schedule every day around my rigid routine. At the time my parents thought I was just going through a teenage phase of working out and dieting.
Within a few months of non-stop self-monitoring I dropped from 41kg to 34kg and had to be hospitalised for the first time after I’d collapsed again at school and was rushed to a doctor.
The doctor diagnosed me with anorexia and it is then my parents finally realised what I was going through was not just a phase that I was going to grow out of. They slowly began to accept that my eating disorder was a condition, not a choice.
During my first hospitalisation I started working regularly with a therapist and gained enough weight to return home after only a few weeks. I began to eat a bit better.
But even though I put on weight, it didn’t mean I was starting to heal. Far from it. In fact, over the next few years I was in and out of inpatient care so much that it became a revolving cycle. I’d missed so much school that my teachers brought my assignments to the hospital where I did most of my studying.
Somehow I managed to graduate on time and at the top of my class. But because of my condition I’d lost the few friends I had.
It was a vicious cycle – I would lose weight and be hospitalised at 31kg, gain weight until I reached 40kg and then drop back down to 31kg again as soon as I got home.
I lost joy in everything I did. My every thought was consumed by food and exercise and nothing could make me snap out of it.
When I turned 18, the day I legally became an adult, my parents petitioned the courts for legal guardianship and won knowing full well I wasn’t able to take care of myself.
They forbade me from running my 11km every morning.
But I retaliated by eating less than my normal 500 calories. And if they made me eat more I would force myself to throw up.
My dad would stand outside my bedroom door for hours talking to me and encouraging me not to purge. My mum would come check on me when I was sleeping to make sure I was still breathing.
But instead of understanding the fact my parents loved me and were worried for me, I would be angry with them.
I just wanted to be on my own. I was so sick that I couldn’t understand how much I was truly hurting my parents or even myself.
There were times when my mum would cry and beg me to snap out of it.
Since the age of 14 I’ve been hospitalised 90 times and have lived in six different nursing homes after my parents found it increasingly difficult to take care of me. It was hard being transported from one facility to the next and after a while I began to feel like my life wasn’t mine anymore. But by far my lowest point happened three years ago, at age 34, when my eating disorder nearly cost me my life.
At the time I was living in hospice care as my disorder became so aggressive I was unable to take care of myself. I had nurses looking after me 24-hours a day just trying to keep me alive.
I had to stop running as my bones were so fragile it hurt to even walk and I refused to eat so I had to be intubated with feeding tubes.
I just laid in bed all day wasting away, pulling out my feeding tubes and fighting with the nurses when they tried to make me eat.
Eventually I dropped down to my lowest weight, 25kg, and was so weak that I couldn’t bathe, dress or even go to the toilet by myself. I was so frail that I broke my hip just trying to get out of bed.
My blood sugar was incredibly low, just 10; the normal is 140. And at 25kg my weight was so low that I started having seizures. I was so dehydrated that doctors didn’t understand how I was still alive.
In fact, my doctor told my parents that at the rate I was going I only had six months to live. That’s when my organs began to shut down, and I slipped into a coma.
Since I was still breathing on my own I didn’t have to go on life support and I was getting nutrients from the feeding tube.
My parents were constantly praying and wishing I would get better as my body began to waste away.
Doctors went into overdrive trying to get me out of the coma and almost miraculously, two weeks later, I woke up and found a new will to live.
I’ve decided anorexia will no longer rule my life. Now I’m not only leading a healthy life but trying to create awareness about the condition as well.
I know it sounds crazy, but after I woke up I realised I had a purpose to fulfil – to cure others and myself from this terrible condition. It was like I woke up with an epiphany, and ever since then I’ve been working hard to turn my life around.
I slowly started eating again on my own – fish and veggie burgers and my favourite treat, vanilla yogurt mixed with cereal and nut butter. I started participating in group therapy and counselling and listening to other success stories, hoping to find inspiration for my own.
I actually wanted to live.
I wanted to have a job, move out of my parents’ house, get married and become a mum.
But my dream came up short after my doctor told me since I’d never produced enough hormones or body fat during puberty to start my menstrual cycle, having kids wasn’t a possibility. It was a real setback for me as I’d always dreamed of having kids.
In fact, for the first time in my life, I finally came to understand the extent of the irreversible damage I’d done to my body including osteoporosis, permanent bone loss and even losing some of my teeth from malnutrition.
I had liver, kidney and respiratory failure and had to be fitted with a permanent pacemaker to help regulate my heartbeat.
Still, despite all the failures, I was determined to prove my doctors wrong and finally beat this disease once and for all.
After gaining nearly 11kg in the hospital I returned home and the first thing I did was throw away my treadmill and my scale.
Instead of using exercise as a way to burn calories and monitor my weight, I started doing things that I was passionate about, like yoga and dance. Today, I’m proud to say I weigh 44kg, the most I’ve ever weighed, and I’m finally living independently after being taken off my parents’ care.
My mum and dad still worry about me a lot and even though they live 40 minutes away they come to check on me every other weekend.
I’m happy to say our relationship is stronger than it’s ever been.
Even though I’m not in a relationship, I have started dating a bit.
And there are days when I walk outside and feel the sun on my face and remind myself how lucky I am to just be alive.
After 30 years of fighting this battle I’m finally allowing myself to enjoy the life I’ve been given and follow my dream to help others who are fighting this disease.
Right now I’m working as a motivational speaker and sharing my story with kids, teens and their parents and encouraging them to live a life they are proud of.
It’s taken me nearly 30 years to finally find a purpose in my life, but I know if I’m able to help just one person by sharing my story it’s all been worth it.
Danielle Buettner, 36, lives in Shawnee, Kansas