A Severe and Enduring Eating Disorder

A Severe and Enduring Eating Disorder.

All eating disorders are serious, but some people have a very malignant form of eating disorder which we describe as “severe and enduring”. If your loved one is starving themselves to such an extent that they are fed by tube, or they are under a mental health section, then they have a serious form of eating disorder which places them at risk of death or of a chronic long term illness.

One mother describes a situation where her child is refusing all food and drink, runs away whenever the feeding tube is removed, and has been sectioned twice. After 2 years of this illness with some progress and once again a serious decline , the parent herself is breaking down with worry and stress.

Trouble at home

This is a situation where all the good advice given to carers breaks down. You have learned all about the animal models of parenting anorexics, but nothing seems to work. You simply run backwards and forwards to hospital; You may be trying to keep a job, run a home and look after the rest of the family; sometimes all on your own. The stress is unbearable. You are angry at the staff who you feel don't always know what they are doing, you wonder if your loved one is getting the right treatment. Your loved one is turning their back on you or begging you to take them home. You feel absolutely helpless and despairing.

Trouble with treatment services

Sometimes clinics and treatment services don't help, They put the parenting methods of the mum and dad under scrutiny. They seem to suggest that there is something wrong with the mum, the dad or the family itself. This isn't fair since all kinds of shenanigans go on with families without the curse of anorexia. They say that parents aren't to blame but they seem to suggest they are. They ricochet from one diagnosis to another as if it is going to make any difference to what is going on.

Trouble with the sufferer

Children with anorexia are very difficult to live with. They often attack the most caring of the parents, the one who shoulders the main burden of trying to help. Many a time they say they wish to live somewhere else or with someone else so you feel blamed for saying NO. It's very hard not to take it personally when you are in such fear. This is almost certainly what is going on inside the mind of the child.

“My eating disorder is like an addiction, I can’t stop, when I eat I am not myself. I have this voice in my head that talks to me. It tells me what to do. It tells me I am fat and worthless and that I am not allowed to eat because I don't deserve food.

…..inside I am broken and fragile. I’m slowly crumbly. I’m slowly fading away and becoming invisible and soon I will be forgotten. I'm dead inside and gone but outside there is still a body you see. I really hope I will die because the world will be a better place without me and there will be no pain. I’ve tried to smile but behind my smile is a world of pain

I don't like looking in mirrors because if I look inside them I feel that my ugliness is going to break the mirror. I cry every time I look in the mirror.

Deanne Jade 2015 My eating disorder has become my world and I really don't care about anything else. I spend every minute thinking about calories and ignoring the hunger and the dizziness and the heartbeats that quicken to a scary rate. I can’t change even if I tried and even if I wanted to. I will always have this and it’s my identity".

How awful it is to have this tape playing on an endless loop inside our head. Even a therapist cannot reach down to convince the anorexic to think differently, because starvation affects the way the brain works. In extreme cases of starvation the brain cannot think and has lost the neuronal ability to adapt. It seems to be a place from which there is simply no escape.

Reaching Out for Help

I have often wondered what words of wisdom and solace I can offer to people who find themselves unwittingly in this desperate situation.. This is what I have come up with so far. I use the word "she" but it also applies to "he".

Your poor child is on his/her own journey. I know that as time goes on she will have to make a choice whether to live or not. This sounds bleak but it is the truth. With this illness, we don’t know what wiring in her mind and her brain has to shift for her to come out of her cocoon and live; even then she will find life hard, since everyone else will have moved on, gained experiences and grown up.

This illness is about a pain you personally cannot reach. Sometimes this illness IS about bad experiences. Sometimes this illness IS what it feels like to be a child in your particular family because they feel they need to take care of a parent who isn't coping with their own life.

Sometimes a child becomes ill to protect a parent from their own black hole. Sometimes this illness is an unconscious anger toward a parent who also has emotional problems, like fear of change, fear of abandonment or over sensitivity. The pain which is inside anorexia can arise from any sort of things. Therapy often cannot dig it out because it is too deep. Sometimes it is just something in the genes.

When a parent is at the end of their tether, we have to support that parent. Because a weak and sick parent will just reinforce the desire of the child to remain a patient. This is what we know. You, the parent are caught in a terrible paradox. IF this illness crushes you, your child will continue to stay sick. So we must help you to turn away from the anorexia while continuing to love your child, while forging a life for yourself and caring for others in the family. You will need to learn how to be tough.

Even when a child is in total thrall to her illness, and even when she lies passive and silent in a hospital bed, there is, deep underneath, a ferocious battle going on. We cannot see it because it is inaccessible to us and also to her. This silent battle is between the voices in her head and the part of her that wants to break free. With seriously ill people, we never know whether she will prevail over her illness and we must resign ourselves to the helplessness we feel as we try to expedite the process. This resignation is the hardest thing to accept; but perhaps when we do accept our need to wait, we can find some sort of peace and a direction for our future. There may be a turning point, but we never know when it will happen and we must make a life while we wait.

My experience for what it is worth is this; when a desperate flailing parent stops trying to change the anorexic person, and looks inside themselves to live a better life by changing something inside themselves, it impacts on the sufferer. Exactly what kind of change is needed differs from one person to the other. This is not about what to DO it is about what to

Deanne Jade 2015 BE. You may need to learn how to become independent, to become flexible, to become less susceptible to criticism, to become more assertive.

So don't sit there saying you are not the patient. Nor blame the therapists for not making progress with your child. This illness does not get better because of good psychotherapy. While your child confronts her own existential struggle- which may take a very long time - get some very wise help from someone who can help you to engage in some personal growth, and wait with hope but without desperation or expectation for some change.

Deanne Jade 2015