anorexia - a father's perspective

Simon Williams

Life for me right now is just so sad, desperately sad, all the time, every day. I must watch my daughter fade away, become thinner, more incapable, more twisted and illogical, more depressed, unable to work, or enjoy life, more withdrawn from friends, and life in general. Every day her optimism, her hope slips further away. She doesn’t want to continue living. Well why would she? Anorexia is a disease that tells you it has all the answers, and you believe that, but really what it does is kill you. You either starve to death, your organs give up, or you choose suicide as the way to stop the pain.

For Juliet though there is still one thing to cling on to: Monte Nido. And she will go there, no matter what. I refuse to let such a foul, revolting illness beat us, to take our daughter away, to deprive the World of a such a talent, such a lovely vivacious person, who is loved by everyone she meets.

Juliet doesn’t know what a normal life is. Her mind was first infected by anorexia when she was about 11, so she can’t remember the time when she could eat what she wanted and didn’t feel guilty about everything. Anorexia suggests to people that it is a food problem, but it is much bigger. It is a mental illness, it’s about perfectionism, about lack of self belief. It’s about the destruction of normal reasoning, normal logic.

Anorexia is a being, a force, a virus (as in a computer virus) that takes over your mind, infesting it and slowly wrecking normal thoughts, ambitions, feelings.

Juliet talks about it manipulating, morphing. It’s hard for me to understand what this means. It says it’s her best friend, yet it’s her worse enemy at the same time. One NZ expert said to me once that it’s like having a Nazi Gestapo officer on your shoulder relentlessly shrieking into your ear, “You’re a useless, worthless bitch, you have nothing to offer, you don’t deserve to live, let me be your friend, I can help you.”

Juliet says anorexia doesn’t want her to do anything pleasurable. It doesn’t want her to read books. Books are pleasure, relaxation, distraction, teaching, informing, humour. Those things do not feed anorexia, so the disease tries to stop Juliet from reading a book. It tells her she is not smart enough, and won’t be able to concentrate.

It does however let her read magazines, steering, manipulating her towards the scurrilous magazines that feature so called celebrities and their diets, and their so called battles with anorexia. These magazines feed the disease, so they’re OK to read.

The gutter journalism in these magazines tell of celebs who supposedly have anorexia, and are going into treatment, yet they are making loads of money, going to parties, travelling, having a ball, and might even be pregnant. Anorexia’s not a problem folks, just a bit of fun along the way!

A real anorexia sufferer could not do that. They are so “down” that they can’t work, they have so little self image they hate themselves, they can’t go out, they can’t go to parties, they don’t get their period, so they can’t be pregnant.

The proprietors of these magazines should be kneecapped, or worse. I struggle with the idea that someone as intelligent and creative as Juliet can even think of opening one of these magazines. That’s anorexia.

These magazines seduce young girls by showing them that anorexia is glamorous, and offers possibilities, excitement, a celebrity life.

Juliet says she does like reading quality fashion magazines, tricking anorexia by buying a magazine that might show thin models, but reading the quality articles and not looking at the pictures.

As Juliet says it’s like yoga, something for her. Yoga? Yes, exercise. That’s what anorexia tells her she must have loads of, so she can burn off that calorie she put into her mouth. That’s why anorexics spend days at gyms, running, walking fast, and looking very unhappy, as they exercise to death. Yoga, for Juliet does give pleasure, so anorexia tells her it’s not for her.

Anorexia latches on to weaknesses, taking anything you have that you might imagine you enjoy, and using it against you.

Have you seen those TV documentaries that show you a sufferer or two, looking like skeletons, parents wringing their hands, all bewildered, and a psychiatrist or two?
A viewer might think this is fine. Not at all according to Juliet.

The skeletal sufferer simply says to an anorexic who doesn’t look as bad, “you see you don’t deserve help, you’re not bad enough.” So of course they try to get worse. It’s called triggering. Juliet points out that anorexics simply want the way they feel to be validated, and they don’t have to look like death to feel absolutely dreadful every second of the day.

The same when a person says to a sufferer “Gosh, you look better!” The sufferer is still feeling the same inside, they’ve just put on a little weight, so the rest of us think she’s getting better. Not so. All we’re doing is devaluing how the anorexic is feeling. As Juliet says “Ask me in five years, and I might be able to say I’m feeling better.”

The TV documentaries often show a “recovered” sufferer, who may have just pulled out of the nose dive. She is asked the old “How to you feel” question. The person says “Oh much better”. That’s the superficial way the media deals with the subject. We all assume it’s that easy.

Putting it another way, when the anorexic goes to a doctor, has all the bloods tests, heart monitoring etc, and the doctor says “Hey’ you’re not bad, everything’s fine, you’re stable.” The anorexic knows it is not all right, the doctor stuff might be, but the hell the sufferer is going through, remains unaddressed.

The sufferer wants validation, so will try to get worse so someone will take notice. The doctor has reinforced the eating disorder by suggesting that the sufferer should be able to go out and do normal things, but the anorexic knows that’s impossible.

Juliet chillingly points out that an eating disorder wants you dead, that’s it’s goal. So it tries to make you invincible, so you over exercise.

The doctor has said you’re stable, so you assume you must be OK, even if the doctor has said not to exercise, which is contradictory. If you’re stable, you assume it means you’re not sick, so why can’t you exercise? Juliet says the doctor should validate her own feelings, and say “you are very sick, you have worrying heart and blood results, so you must not exercise. The result can be tragic, with the person having a heart attack or dropping dead, or ending up in hospital, where again medical matters are addressed but not the problem.

Juliet has been rushed to hospital four times, then quickly discharged as being “stable”.

Anorexia is such a complex illness. It lacks logic to the rest of us, and we only get an idea what it is really like when we talk to sufferers or those who have recovered. I still struggle to understand.

Most of us know nothing about it, and offer silly trite suggestions as to how to solve the anorexic’s “little problem” as one person put it to me recently. People reckon they know enough to be an expert and they all know someone who went to this clinic or that and was cured. “You should try that one,” they say, failing to see that this is the worst of all illnesses, and will kill if it gets the chance.

The New Zealand approach is so negative, medical and otherwise. It is so different in the United States.

Monte Nido, where Juliet will to go, is the place that will save her. It is run by recovered anorexics, who really know the condition. They have doctors who also know (and that’s rare), and they are very, very careful of all the details. They are marvelous people.

So why do we know Monte Nido will suit Juliet? Because she’s been there before. She was there for three months in 2005 before we panicked at the costs and had to pull her out, a terrible tragedy. She had just started making real progress and we could see a golden future for her. She needed to have been there for, at least, another six months. We made the best of it, but Juliet relapsed at the end of 2005, so we managed another month.
If only we had thought a bit bigger, we might not be writing this today. Instead we start again, knowing that Juliet needs at least 6 to 8 months to be fairly assured of rebuilding her body and mind.

Then perhaps we will see her back acting again, producing shows and inspiring young people, being the woman she is destined to be.

A final word: Cooking. Juliet is the best cook I know, leaving chefs for dead. She is intuitive and clever, and loves to create exciting meals. She could run a café. So where does this square with anorexia? See I said it was complex.

My daughter is going to die, unless she gets the treatment she needs and deserves. I will never give up, I will do anything to help her and to help other sufferers. Right now New Zealand health authorities have turned eating disorder facilities into a scandal, a mass of bureaucratic detail and negativity, born from a poorly funded state heath system. Change seems to be proposed, but I find it hard to imagine that patients will suddenly find themselves being looked after by a system that sees their cure as a priority.