You have sent your child or loved one to see a therapist. You have probably been concerned for a long time and you wonder how bad they really are. Perhaps your loved one is not all that thin and you are hoping that this is just a phase. Perhaps they have told you that it is just a phase or that they feel really well. They have come for an assessment and you have hoped (desperately) that they have been persuaded to change.
An eating disorder therapist understands the phases of restrictive eating problems and whether weight is low or not, they will have some idea of how serious this condition could become. So you need to understand that the question is not:
“Does my child really have an eating disorder or not”.
The questions really are:
“What stages of illness do they have; might it get worse or better, what do I have to prepare myself for? What help am I going to need?”
Stage 1 of an Eating Disorder: I'm not so bad, I'm certainly not ill - leave me alone.
Stage 1 is where someone has lost some weight and it doesn’t seem to be stopping. You have probably told them how much better they look but now it’s time to stop. The loved one isn’t “too thin” but you are alarmed about their eating habits. They are eating on their own much more, and they have probably become vegetarian which is an excuse to eat less fat and to feel more pure. This desire for “purity” is one of the early signs of anorexia. Yes, many people go on diets, and Yes, many people become vegetarian for all sorts of reasons. But most dieters cannot wait to stop their diet and they do not become afraid to eat. Normal dieters do not get enraged when someone tries to persuade them to eat some food.
In stage 1 when someone isn’t absolutely underweight quite yet, they are hearing a voice in their head which convinces them that they will feel much better if they lose just a little more weight. The problem is that this voice doesn’t go away. No matter how much weight they lose, its always just a little more.
In stage 1 of an eating disorder your loved one knows there is something wrong but shuts this knowing away. They convince you and themselves that they are fine, they feel much better, they can run 100 miles. Of course they do not have anorexia because anorexics are thinner and anorexics aren’t hungry – are they? Some people call this “denial” but they are actually terrified to change.
Stage 1 is anorexia on the cusp of being something bad. Because it isn’t too bad yet, everyone hopes that it will just go away. 9 times out of 10, its going to get much worse. It’s going to last a while and it may – for an indefinite while – become a serious mental affliction.
Solution for stage 1
Can anyone do anything to stop the decline? Sadly I believe the answer is “no”. The eating disorder has captured the person because they already have deficiencies in their capacity to cope with life. These “deficiencies” have not been previously obvious and their ability to lose weight feels like the first thing they can be proud of. The patient will be unwilling and unable to give restriction up and learn how to “be stronger”. Carers must know that threats and warnings increase resistance and denial. It won’t happen to me and I don’t care.
If I see a patient in stage 1 of their problem I can do my best to persuade them that treatment will make them happier and stronger-not just put on weight. I may help to change the way the Voice speaks to them. I can listen to their underlying pain which needs to be expressed. This will absolutely have a good effect and it may stop the illness from getting worse, but there is no quick fix and I have to work with carers so that they are fully prepared for what they may have to do. We will need to get schools and colleges into the treatment loop no matter how much the loved one says “no”.
Stage 2 of an Eating Disorder: I think I have a problem but I can manage it on my own. It's not so bad, it'll go away.
Stages 1 and 2 are not distinct, one melts into the other quite fast. This is where you become really worried about your loved one and the more worried you are the more your loved one pushes you away. You stand outside the locked bedroom door; please come out, join us and eat something. Can’t you see how awful you are looking! Do you have to go running at 6am every day? Talk to us, talk to us. Come and see the GP. No, get lost! F- Off!
In stage 2 weight is being lost slowly or quickly and no one can deny it is just a phase. He/she will eat no fat and no carbs; everything is on their forbidden list. The loved one is only listening to the Voice inside their head, lose more weight, you’re doing well, but you’re still fat, you’re ugly and no one understands. By now they are sinking into their own world where no one else belongs, they probably aren’t seeing their friends and they’re spending time alone. They are attached to their eating disorder as if it were a marriage, while insisting nothing’s wrong, they are just a little tired and stressed.
You as a carer cannot underestimate how many benefits they are getting from having their eating disorder. Yes, they feel tired and cold and painfully hungry and miserable. But he/she is getting a lot of pluses from their eating disorder even thought they aren’t aware of it yet. This has become a way of helping them to feel special, to feel different from others, to feel superior in the only way they know how. The eating disorder is useful in helping them to avoid things in life they cannot cope with, like managing painful feelings or doing their exams. The eating disorder is useful because it can bring warring parents together and it is useful because it says to others “I’m in pain” (although I’m not sure why).
So don’t expect your loved one to be a willing participant in therapy. They will explain that they are terrified of putting on weight. They believe with absolute conviction that any departure from their diet systems will make them gain weight and it will never stop. They are terrified of having to get on with life with all the horrible feelings that existed before they started losing weight. You say it’s easy just eat something please. The Voice in their head says, if you do eat, you are weak and greedy. They are in a hopeless trap and restriction can increase.
If I see someone in stage 2, the ED is very well entrenched. To know how serious it is, I have to look at other things like how fast weight is being lost, how little are they eating, are they young or older, and what their childhood experiences have been. Are there other mental issues present like depression and anxiety in early life. We are able to predict how serious this illness could become and we must arm carers with some of the weapons they need to cope with and manage the entity which has captured the consciousness of their loved one. Workshops and guidance for carers will be crucial, and they must know what to expect. Safety strategies must be put in place in case there is a risk to life.
Is there an thing a therapist can do at this stage? Yes and no. Starvation stops your loved one from hearing because the brain doesn’t work as it should. The priority is to set in motion what will happen if someone does collapse. We therapists can do motivational work, to help the captive describe all the ways in which the Eating Problem is their friend. We can help the captive see how the ED will get in the way of what other things are important in their life. We can help the captive understand that they are more than what they weigh, but this kind of understanding will take time to sink in.
Stage 3 of an Eating Disorder: I know I'm ill but I don't care, I can't eat and you can't make me. I cant make myself either.
This is what is going on inside the head of your loved one like a vicious running tape recorder.
“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.
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”.
Your loved one is very low weight and it goes up and down, they are depressed and obsessive, angry and sometimes violent toward loved ones. They say they are going to get better but it just doesn’t happen. They know they have a serious mental condition but they have eroded into to a sense of helplessness. They just have to see someone thinner or iller than themselves to be convinced that they are not so bad and they are provoked into a need to compete to be the illest and the thinnest in the room. The illness makes them lie, hide food and deceive. They try to fake their weights. You have lost the person you once knew and you are grieving the life that could and should have been. At times you think you’re going mad. You are suffering, and they don’t really care – although they say they do.
The Voice is now the only thing that they can hear. The Voice is telling them that if they try to get away it will punish them. The Voice is stronger than you and stronger than anyone else. No matter how much the illness hurts them, they are getting so much from it. They really do feel superior to people who have to eat – like you and like their therapist. They do not wish to be fat like you – and their therapist. Their feelings are blunted. They are getting attention, although at the same time they don’t want it; yet they do the very things that guarantee they are going to get it.
Thinking in all stages of anorexia but particularly this stage is dominated by rules. The rules are seen as the solution to the person’s problems whereas we see the rules as the problem because they are severe, irrational and inflexible. However it is only by following the rules completely that the person experiences control and relief.
” I live my life by them. I must weigh under a certain number. I must eat less than a certain number of calories. I must be smaller than a certain dress size. I must eat my food in a certain order. I must leave a certain amount of time between meals. I must not eat after a certain time… (just listing these is exhausting!)… I must lose at least this amount. I must run for a certain amount of minutes (at least).
That’s the thing with the rules. They always demand at least, you’re never allowed to do less than the rules specify, only more. I know that these rules shrink the limits in which you allow yourself to exist, as they steal more and more of your freedom. And the more I starve myself the more the rules grow.”
If I see someone in this phase of the illness, I will not be trusted. Anorexia puts up a barrier so that I will not be able to find the person under the protection of their captor. I have to find a way inside to help them find and understand the pain that brought the illness in, in the first place. I will speak directly to the Voice which I will separate from the person it speaks to. I will reassure them that recovery is holistic, it is physical, emotional and spiritual. I will insist that that eating more or less is not altogether my concern but …… no ifs and no buts without eating more we will wait forever for things to change. In this way, the anorexia has nothing against me to fight. Safety strategies must always be in place in case of risk to life and some may die but most do not.
Stage 4 of the Eating Disorder: A Turning Point
In this stage the restricting person has – for any number of reasons – decided that they do not wish to live like this any more. You may not know that they have changed because their behaviour has not changed. It may take a very long time before it does. It can take 7 years or even more to reach the turning point.
They want to change but deeply afraid of change. They want to change to feel better, to be able to move around without fatigue, to get on with life and to stop the suffering of their families. They realise dimly that they are more than what they weigh. It is as if they have seen the light but the light may still be dim. It may be a mistake to assume that they are ready and willing to eat.. The Voice is still there and opposing the voice is the hardest thing for them to do. In some respects it is far easier to stay ill. We have to show that we can help them to fight the Voice and not just be eating bullies.
If I see someone in this phase of the illness, the person is taking some action to try and be well, but they are still deeply ambivalent. The sufferer needs the informed help of a sensitive dietician, together with a lot of useful information for them to digest. They need help with their emotions to be able to tolerate bad and dangerous feelings which ordinary life must bring. Only with some nourishment will they be able to do the therapy which will help them feel that life is worth living and that they are not the bad awful people they irrationally believe they are. They need to learn to feel connection with loved ones, with other people and also in a spiritual sense. They may need to make amends to feel whole and worthy again. This phase of the illness is very delicate and many people relapse before they are finally able to say goodbye to their illness. For some people the job is just too hard and they make a bargain with their anorexia. They may say I am better now but I will only eat food which is really healthy for me, or I will take up running marathons.
Stage 5 of the Eating Disorder: living afterwards, maintaining change
Well but scarred. Does anorexia ever really go? Your loved one might be well but still has the sensitivity and the emotional vulnerability that led to the illness in the first place. We have to hope that good caring therapy is dealing with this so that the person no longer needs to restrict food to be able to cope with life. They may miss their “friend” and wish at times that it was there to hide behind when life gets tough. There will be times when some of the old behaviour creeps back, under the radar. “I think I must start going to the gym. I think I’m allergic to wheat and need to go without it for a while.”
Part of therapy is to help the loved one be alert for times when the Voice comes back. Then we must reach down to the stress and the feelings which are not being managed well. We must help the person see that the only friends welcome in their life are those who are good for them and care for them properly. The Voice is the abusive friend, who should be shunned.
Carers need to know that most people do recover from a restrictive ED and move on.
They have to learn to stop living on eggshells, but at the same time must be careful about what they say. Words like “You look so much better”, or You looked awful back then”, are interpreted as “You look fat, You were doing well before”. The therapist must coach the patient to be able to hear such statements without making these emotional interpretations. Therapists need to learn to let go and teach the person to do it on their own.