If you have a loved one who is behaving in what you imagine is a dangerous way , it is just the most horrible thing to live with. Food is life and love, it is something to share and enjoy, it is the glue of many human interactions. When all that shrinks into the crazy world of an eating disorder, all of these things are stripped away from family life.
A person suffering with anorexia, bulimia, binge eating disorder or has mixed symptoms is not just naughty vain or stubborn. They are in the grip of a severe and often an enduring mental illness that can cause a lot of physical and emotional damage.
Why people get anorexia
Anorexia and the other eating disorders emerge in people who have “gaps” in the ability to cope with life, with feelings and with relationships. The most usual risk factors for an eating disorder is sensitivity and anxiety. An eating disorder is not a sign that someone has suffered from trauma although 8 out of 10 people with bulimia have had some traumatic experiences and may still be suffering from the effects. Sometimes the problem is simply an overactive nervous system. There is a link – not in all people, between anorexia and autism. Autism is a wiring problem that makes it hard to cope with day to day life and relationships with other people.
Hidden sensitivities have small effects in children, but as someone grows up and has to cope in a stressful world, they can give rise to all sorts of problems like substance abuse or other forms of self-abuse like eating distress.
Denial is a feature of anorexia, and understandable
We are also up against misunderstandings and stereotypes about what an eating disorder is, and how to approach someone who has one. The problem is that denial is a feature of anorexia and is not a deliberate wish to be difficult. Someone might say, well since I am not as thin as a well known influencer, I cant be all that ill. The sufferer may run marathons to convince themselves that they are well. They feel fat so they MUST be fat. They have notions of what anorexia is and they don’t tick all the boxes. Or they might have problems but they are so terrified of letting go of their behaviours that they convince themselves that they can survive just as they are.
Perhaps they think that their behaviour is normal. These days, many celebrities have stepped forward with their own stories about eating distress so it is quite common to know someone who has or had one themselves.
There are many stereotypes about eating disorders that still need to be shattered. Eating disorders are not just about food. Eating Disorders are a sign that something else is seriously wrong. An eating disorder is not a sign that your loved one is mad or bad, vain or wilful. What goes alongside eating distress is anxiety, depression and sleeplessness and the sufferer may think that these things are the real problem. I have known one seirously ill celebrity tell me “I don’t have anorexia, I am just depressed. Its partly true since chaotic eating and under-eating play havoc with our moods.
Eating disorder symptoms like dieting, starving, purging, adopting strict food rules and obsessive weighing mask what is really going on beneath. Lying underneath any eating disorder is fear, difficulty coping with feelings, faulty thinking that might have come from anywhere, even the unwitting comment of someone at home such as “Fat is bad for you and makes you fat”. An eating disorder is a sign that something in life is not in control.
Focus on Symptoms?
We focus on the eating symptoms because this is what gives us distress. If we don’t attend to the symptoms, our loved one might become very ill. the symptoms ARE the problem making them miserable and scared. The behaviour of the loved one IS a problem affecting the whole family. It’s understandable to want the problem to disappear fast. Eating more and gaining weight is not a sign that your loved one is doing well. We view eating distress as the solution which helps them to cope with the turmoil underneath and it is our job as therapists to find out what their difficulties really are and help them to express their conflicts about getting “well”. The person with eating distress is mentally unwell -this may be temporary with the right kind of psychological support. It is very hard for any carer to come to terms with this especially if everything has been fine until now.
I often discover seeds of eating distress well before the eating disorder shows its face. And personally too, I’ve been there, wanting a loved one to just eat, just for today, to take some of my worries away. But telling someone that a piece of bread won’t hurt them or expecting them to “use some willpower and go on a diet” is unhelpful. So, we are caught in an unbearable conflict wanting a therapist to fix our loved one fast.
We understand. We know that you would give your right arm to have some action taken straight away. You hope that some bullying, some tears, or some persuasion will have some effect. You fear that if we are patient and understanding, our loved one will die or live a half life. Many people can live normal lives with mild chronic problems with food. Sometimes they get better on their own. And sometimes recovery takes a very long time and may leave a serious scar. Your loved one may have interruptions to their academic life and fail to go through the normal process of forming adult relationships. We must try to help everyone with regret. Regret can affect self worth and impair recovery. We can do no more than to say it is what it is and help you all move forwards in the best way possible.
What to do for my loved one
Learn about eating disorders. We are all still learning and looking for new pathways for recovery. We know a lot and we can do a lot. You need to find a consistent informed helper to guide your family through this journey. Treatment for an eating disorder is invariably lengthy and seeks not just to remove the dangerous behaviour, but also to strengthen people mentally and make them happier. They need to know that we wish to make them happier and more effective in their lives.
Make sure that any help you access is eating disorder specialised, and build a team around you, such as a doctor, nutritionist/dietitian, support group, outpatient groups, or inpatient/residential care. Parents must be taught how to save themselves as well as be a resource in the team. And sometimes we won’t need to help your loved one all the time, with the right kind of input, a person may get better on their own.
Some useful facts
- No blame. An eating disorder is not caused by any single person or situation, acerbic divorces or separations. Yes, there might be many obvious stresses but the problem is more about their intrinsic sensitivity and high levels of perfectionism. This sensitivity may be coded in their genes or may be part of their history, we will never know which.
- If there is or has been stress in the family, get some help. Recovery is much more likely if carers pull together, take external advice if they disagree and don’t be aggressive to each other. Carers who use the eating disorder to score points against family members are likely to have a very sick sufferer.
- Parents who get help for how they feel about the eating disorder are more likely to be a good resource. They have a better chance that the loved one will turn round. You can get this help from a good professional, from a self-help group or online forum. We offer some details below.
- Carers usually take comfort from having an advocate who will guide them through times of stress and despair. They need to know several important things:
- Anorexia has a natural course that may or may not be affected by therapy and the average span is 7 years, maybe more and maybe less. 1 in 5 anorexics die early often due to suicide rather than starvation but 4 in 5 recover eventually – have hope!
- Untreated bulimia rarely gets better on its own; can last for many years and some people learn to get on with life by “hiding it away” while other people can be severely harmed by it. If untreated, there is also a risk of long term fatality due to suicide or other forms of self harm.
- Anorexics can continue losing weight even after someone gets help, due to resistance and rebellion. But early cases of anorexia are rarely fatal. If someone collapses it is not a tragedy. It can help persuade the sick person that they are not as fine as they think they are.
- Inpatient help is useful for medical risk but is not a cure in itself. Some people get well on their own when the eating disorder burns itself out or they simply get sick and tired of suffering. But even if there is a turning point in the illness, it can be a struggle to get well.
- A carer will need help to grieve for the person who “could have been” who has surrendered their potential, or who has been “stolen” by the eating disorder. This grief needs to be fully understood and held by someone. A therapist can hold your hope. Anorexia is very serious but the majority go on to recover from the worst of their symptoms.
- People with serious eating problems have very poor self-regard for no good reason at all. Perfectionism is one reason for poor self acceptance and anorexia may be the only way in which they get to feel successful (and special). Low self worth requires special treatment from a psychotherapist and does not respond to encouraging people to be kinder to themselves. Recovery happens when an eating disorder sufferer begins to like themselves better.
- People who deny that they have a problem usually know that they are very sick but they don’t want to agree with to our concerns in case they are giving in to us. They are usually very scared to stop what they are doing for reasons which we understands. Sufferers often convince themselves that they can get by just as they are. To help a sufferer to express their ambivalence toward change is an important part of treatment.
Conversations that are useful
Supporting someone you care about who has an eating disorder is usually mystifying at first. The answers seem so easy: ‘stop making yourself throw up’ or ‘stop eating too much’ or ‘stop starving yourself’. But these conversations do not address the deep emotions and damage occurring beneath the surface; damage that is often built up over years or decades of time. When approaching a loved one with an eating disorder, remember that guilt-trips or bribery doesn’t cure their eating disorder.
They need love, sympathy and support. Patience and time, and its terribly difficult to be patient in the midst of all the eating drama. It is hard to cope when your loved one complains about being watched, controlled and forced when all you are trying to do is keep them safe. There are books and resources about how to deal with this. You will need to learn how and when to watch and when to back off and leave your love one alone.
It is helpful for parents to be compassionate, but firm and consistent. Learn the language of eating disorders.. If someone won’t eat, perhaps say “The eating disorder must be shouting at you today“. If they say I can’t eat this amount of food, ask “This is what the Voice tells you, what do YOU think?” When all the people involved are in a calm place, start a conversation about what kind of help might be useful. Ask if they want you to check in with them regularly, or just from time to time. Ask your loved one to let you know if they want solutions to their anguish or just a listening ear.
Ask your loved one if it would be helpful to offer to do things like shop for food or prepare meals for them or would they prefer to take the responsibility for that. Ask if there is a special relative who they can open up to about their private feelings Find out if there is someone in their lives they need to change or limit their contact with, such as a verbally abusive family member or a friend who might trigger their low self-esteem or behaviours.
Offer to get rid of potentially triggering items, such as a bathroom scale or workout DVDs. Let them know you love and care about them, and your door is open whenever they want to talk. Acknowledge that you don’t have experience with what they are going through, but you do understand that it must sometimes make them feel scared and alone, and you want to help ease those feelings if you can.
Comments that are not useful
Comments about weight are not useful, even comments that tell someone that they are looking better.
Comments about weight loss is called “expressed emotion” and is known not to be helpful “You’ve lost weight!” can come across to someone with anorexia as a sign that they are doing well. Comments about weight loss can even be unhelpful to someone who is overweight. It shows that you are noticing their weight and can make them anxious.
When you tell someone with anorexia that they are looking much better, they re-frame it as meaning they are fat. Please avoid such comments as much as possible. Try using more neutral phrases, such as, “I‘m happy that you’re taking better care of yourself.” Be very aware of how you talk about weight and size in the home. Many people with an eating disorder grew up in homes or around people for whom weight was a huge issue and judgements about a person’s size were common. Carers should be aware of their own dialogue about like body shape, weight gained or lost, and views on people based on any of these things. The environment is very triggering for anyone trying to recover from an eating disorder and safety begins at home.
Recovery is not a straight line
Recovery is in the hands of the sufferer who must wish to get well for themselves. That statement feels patronising and is much easier said than done.
Wanting to want to get well comes before putting into wishes into action; that is the hardest thing of all. People often have to fight a great deal of intrusive thoughts about being weak, greedy and fat. They will need a great deal of help to turn the wish to change into actions.
For those looking on, it can be difficult to know when to push and when to pull back, especially if the sick person is not particularly open about what they are thinking or feeling. Sometimes the effects of poor nutrition are so profound that the sick person does not know how they feel, or what they are thinking. They are on auto pilot and their illness is pulling their strings. During these times carers may need to set strict boundaries about medical monitoring such as medical monitoring with no exceptions or excuses.
Carers will need to learn how to set boundaries such as preparing a separate meal with a ‘safe food’, refusing to let their loved one exercise, or driving 20 miles to buy a specific yogurt. There is a fine line between being flexible and being an enabler. Anger and aggression is a feature of eating distress, especially for anorexia. If your loved one is acting like a wild animal it is not directed against you and it is the illness doing the shouting. You will need a great deal of help to cope with it effectively and not take it personally. Carers and therapists need to let go of being liked or even loved if we are on the side of recovery.
There are times when inpatient treatment is necessary and it’s helpful to have an advocate on your side.
Useful contacts and resources
For carers workshops and support
Our resident therapist Gill is trained to help people using the Maudsley Approach. Please contact her if you would like an hour of her time on 0845 838 2040
Veronica Kamerling 01256 704117 / 07733 260475 www.londoncarers.group.org.uk
Blogs and videos provided by the Maudsley www.eatingdisordersandcarers.co.uk
Suggested books for Carers
Life without ED Jenni Schafer (shows you how to fight the anorexic voice) and please see all the other books mentioned on our website
Skills based learning in caring for a loved one with an eating disorder. The New Maudsley Method – Janet Treasure and her team
Help your teenager beat an eating disorder. James Lock & Daniel Le Grange, Guildford Press
Useful Websites and contacts
evamusby.co.uk Eva Musby is the mother of a sufferer who wrote a good book on how to implement Family Behaviour Therapy at home. On her website she has videos that help parents coach their children
Call us for help 0845 838 2040