My daughter's journey to freedom - Bella

My name is Bella. I am a nurse of 25 years.

But I am also a mum of four children, aged 14 to 21.

Nearly three and a half years ago, my then 15 year old daughter and I had a plan to get fit and to go to the gym and exercise classes with each other. We wanted to spend more time doing things together.

Initially it went well. We concentrated on eating healthily and getting stronger and running further. We worked well together and encouraged each other along the way. We were having fun and feeling good about ourselves and our strengthening relationship. We were surprising each other and ourselves with our improving strength and agility and fitness.

Unfortunately though, for my daughter, things spiraled and she lost control. She quickly became very unwell. She started losing weight and became obsessed with exercising. She started to have extremely disordered thoughts about herself, her eating, her behaviour and exercise. She had a voice in her head that was telling her all sorts of awful things, about her life, family and existence.  Unbeknown to me, she was doing all she could to consume as little as possible and to burn as many calories as she could.

Despite being a nurse and having past experiences with people who had eating disorders, I didn’t see what was happening. She hid it so very well by wearing baggy clothes and making plausible excuses as to why she was not joining us for dinner.

It wasn’t until I found her drinking pure lime juice out of the bottle from the fridge and making an extreme weight loss drink that things finally clicked for me. Suddenly lots of bizarre behaviours that she had been exhibiting sprang to mind. I confronted her. She admitted to abnormal eating and over-exercising but she said that I was exaggerating things and she did not believe that she had an eating disorder. Unfortunately though, she was obviously suffering and becoming smaller and smaller and further and further away from me.

So I took her to the GP, a GP who I deeply respect and trust.

I was very concerned about my disappearing daughter and probably appeared to be an overanxious mother. I could not stress strongly enough to him how unwell she was becoming whilst my daughter on the other hand looked quite bored and reassured him that she was great and only wanted to eat healthily and that she felt I was overreacting and being dramatic. After physical examination and a one to one interview, that I wasn’t involved in, he said that he felt that my daughter had “anorexic type behaviours” and “that she was in the lower but healthy region of BMI/weight” but that at this stage she was “still okay”. My daughter appeared complacent about his questioning and denied blatantly that she had any symptoms of an eating disorder and that she was “just fine”.  Fact: Patients with anorexia nervosa are often suffering with anosognosia which is a condition when they truly do not feel ill and they experience their own behaviours and thoughts as normal. This is not a choice or conscious denial, but rather a feature of brain dysfunction.

I was advised that there was no one in our area to help us and that if I wanted my daughter to be seen by an eating disorder specialist I would have to take her to a private clinic in Auckland, but that this wasn’t yet necessary. I was also advised not to force food, not to do anything that increased her anxiety and to allow her to exercise as she got relief from this. Whilst this may seem like reasonable advice, it didn’t ring true to me. As I learnt later on, Fact: in the case of anorexia nervosa, increasing anxiety is unavoidable as food is the medicine but also the thing that terrifies sufferers the most. As with my daughter, her anxiety levels went off the chart when offered food. But food was the medicine that she required, in the same way that insulin is the medicine required for a patient with diabetes or chemotherapy the medication for someone with cancer. All this is clear in hindsight.

I was told to watch and wait for four weeks in the hope that things would improve, I would be less anxious and the GP would see her again.

So for about a further three weeks, I watched my daughter eat her miniscule meals trying to follow the GP’s advice and waiting for the next appointment date to come around. And in the meantime my daughter was becoming smaller and smaller, her bones protruding further and further.

I remember when we went shopping after Christmas for a bikini for her and I saw her nearly naked for the first time in about six months. I couldn’t believe what I saw. My once busty and beautiful daughter had turned into what looked like a pre-pubescent skinny, waif-like scrap of a thing. I could have just cried in the changing room but I waited until I got home. How was I expected just to watch and wait for any longer? It was much later after this day that my eldest daughter told me that her sister had nearly collapsed whilst we were in town that day, that she had had chest pains and had to sit down because she thought she was going to pass out. Fact: malnutrition is a medical emergency and can result in cardiac arrest.

I was at my wits end and trying to stay calm. I was desperate to help my daughter but didn’t know what to do. I was following my GP’s advice but things weren’t getting better, in fact just the opposite and we still had a week until the GP appointment. It felt wrong, just watching and waiting. It wasn’t until I was speaking to a friend of mine and saying “what the hell I should do?” when she said, “There is an eating disorder specialist at the local child and adolescent mental health service (CAMHS) and although she is leaving, she would probably be able to give you advice.” So I phoned CAMHS. It took a while to convince the receptionist that if I couldn’t speak to the eating disorder specialist, then I would turn up on their doorstep with my daughter or call then from the Emergency Department.

When I eventually spoke to the eating disorder specialist, she asked me specific questions about my daughter, her eating and exercising habits and other behaviours. After a brief telephone consultation, she confirmed my worst nightmare, that in her opinion my daughter was suffering from acute Anorexia Nervosa and needed to be referred “officially” by our GP, to the CAMHS unit for urgent assessment, diagnosis and treatment. Fact: It has been proven that early detection, diagnosis and treatment improves the chances of the patient’s recovery and for anorexia that weight restoration is the first step in treatment.

First step was to start refeeding my daughter and stop all exercise and the second step was to re-attend the GP centre for a physical exam and blood test and to ask for an official referral to CAMHS.

This I did, and so began my daughter’s journey of recovering from anorexia. I had to relearn the parenting role. I had to learn to manage my daughter’s anxiety and the anxiety of other family members, and my own extreme distress. Contrary to normal parenting where soothing your child is instinctive and expected, I had to make my daughter face her nightmare by making her eat.

Food was what she needed - no negotiation. There was no choice.

We had to learn to externalise the illness from my daughter. It felt as if my daughter was possessed - she was in there but she was so quiet and small and scared - but the illness was in her too and was loud and angry and irrational and tried to push everyone who loved her away. My daughter wanted help but the voice was telling her not to be weak and not to listen to me. It was good to externalise the illness as it meant that we could talk about the behaviours of the eating disorder and how the eating disorder was being difficult or mean and making sure that my daughter and everyone else around us knew that we were not in any way holding her responsible, that she was not in control and that we were angry with the eating disorder and not her.

I loved her so much and we’d always had a super-close relationship, but this voice in her head was telling her I hated her, telling her that I wanted to make her fat and who would love her then? It was telling her she would be better off dead than to give in and eat. This voice of the eating disorder, or Parasite as my daughter came to call it, was saying, “You don’t need them - your family or friends, all you need is me. I will help you be thin and beautiful. Just lose a bit more weight and you’ll be happy”.

But Parasite kept moving the goalposts, my daughter could never lose enough weight to make Parasite happy and as she lost more weight the voice inside her head became louder and louder and my daughter’s own thoughts became quieter and weaker. She wanted to do what Parasite told her so it would be quieter in her head so she fought me and would not give in to eating or sitting down without a fight. I lost count of the number of times I started to pack her bag to go to the hospital or picked up the phone to let the nurses in the Emergency Department know that I was on my way in with my daughter, before she would reluctantly sit at the table to eat or unlock the bathroom door.

The only goal Parasite had was for my daughter to die…but I wanted her to live so much more and no way was I going to let this bully win and take my daughter’s right to life and happiness away. I was not letting my daughter be controlled by this bully. Quiet persistence and not losing control at meal times were my war tactics. The angrier Parasite got, the more I knew I was winning. The more Parasite fought, the more I knew my daughter was eating what Parasite considered she shouldn’t be.  I know now, that whilst she was telling me to go away and leave her alone” (in no uncertain words I can assure you) inside she was saying, “Please Mummy, don’t stop fighting for me!”

My gosh, eating the meals was a long process. Flying food and hurls of abuse were nasty surprises from the parasite. The language and aggression that came from my once gentle and polite and non-swearing daughter was unreal. It really was as if she had been taken over by another being and was not in control of herself, her behaviour or words. I learnt, through endless hours of poring over books and browsing eating disorder websites (of which there are so many) and advice forums, that my daughter was suffering from a biological illness and that this illness was not her choice nor something (though sadly still many believe) that she was in control of. Anorexia chose her, not the other way around. This helped me maintain my stance on helping her recover. Anorexia is a sneaky, lying, deceitful, threatening, conniving and evil mental illness that thrives on the myths and stigma around it. Fact: anorexia has the highest death rate of all metal illnesses and the probability of death increases with the length of the duration of the illness.

Those months at home of refeeding, twice weekly trips to the medical centre for vital signs recordings, weight and blood tests were the most challenging time of my life and the hardest thing that we as a family has ever faced but, of course, it  was most difficult for my daughter. I can’t imagine how awful it must have been for her - such a battle within her frail little body - but she is well now. No words can explain what we went through as a family. Thankfully, Parasite has now left my daughter alone.

My daughter never fails to amaze me.

The journey, of course, has not been smooth and was made more difficult by the lack of resources for people with eating disorders and their families where we happen to live. I believe that this is a world-wide problem.

I won’t go into detail as I believe on focusing forward. However, if we had waited for professional help (which didn’t occur until six months after our initial GP presentation), or if we had not demanded advice from the eating disorder specialist, or not contacted the Eating Disorder Association of New Zealand (EDANZ) and not spent hours reading other eating disorder books, websites and forums, I have no doubt that my daughter would have been admitted to hospital with a medical emergency through starvation or even collapse or perhaps a cardiac arrest. If we had not started the refeeding and family-based treatment at home by ourselves, unsupported by the local CAHMS and medical centre (no one knew how to help us), if we hadn’t taken that leap of faith into the unknown by ourselves which relied solely on research based books and advice from parents of recovered sufferers (via EDANZ), ALL without professional guidance, I fear what could have been. Sufferers and families should not have to go through this alone.

I love you my baby bird XX