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.
This is not a phase. What else might be amiss
A person suffering with anorexia, bulimia, binge eating disorder or has mixed symptoms is not just naughty, vain or stubborn. She or he is in the grip of a severe and often an enduring mental illness that can cause physical and emotional damage. Eating disorders arise because there are some DEFICITS in someone’s ability to mature and cope with life in a healthy or adaptive way. Deficits does not mean deficiencies. I mean that, something in their personality is not sufficiently well developed to help them cope with life in general. Or cope with relationships. It may be just a delay in their emotional development. It could happen to any of us One deficit which is common among people with eating problems is a difficulty dealing with powerful feelings. Another could be emotional freezing arising from memories of abuse or neglect. Sometimes the “deficit” is physical. We know that people with difficult early experiences can grow up with a nervous system which has no ability to manage stress – even small stresses. Some people have difficulty knowing what to do think or feel when the going gets rough as it so often does in life. These hidden deficits will have small effects in children, but as someone grows up and has to cope in a stressful world, coping problems can give rise to all sorts of behaviours like substance abuse or other forms of self-abuse. Turning to food, drugs or sex is a way of coping with life and also a way of saying “HELP!” The trouble is that people with restrictive eating patterns are often in denial about the dangers they are in, and find it difficult to come to terms with the reality of their situation. Even people with overeating disorders fail to ask for help. This is often because they are so ashamed of what they are doing and think that it is all their fault. They do not know that they have an illness which can be treated if they find the right person to help them We are also up against misunderstandings and stereotypes about what an eating disorder is, and how to approach someone who has one. A sufferer can be convinced that they are not as thin as someone like Victoria Beckham, who is doing very well thank you. They run marathons so they can convince themselves that they are fine. They feel fat so they MUST be fat. They have notions of what anorexia is and they certainly don’t tick all the boxes. Or they be desperate to change but at the same time, they are so terrified of letting go of their behaviours that they convince themselves that they can survive just as they are. Some people with EDs think that their behaviour is normal. These days, many celebrities have stepped forward with their own stories about having dealt with an eating disorder, 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, although crazy food behaviour will affect someone’s moods in a serious way and increases the sick preoccupation with weight and dieting. Dieting is so normal that people think that they are just doing what everyone else is doing. Perhaps they are but over sensitive people can slowly get into a vicious cycle of trouble just by making their dieting life fill up too much time and space in their lives. The dieting and starving, stuffing or purging that is part of an eating disorder is just a symptom of what is really going on underneath. What IS going on is fear, anxiety and stress for all the reasons explained above. Of course, to the carer 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 feel that it would be enough if the symptoms would just go away. Sadly, for the sufferer, what they are doing – the compulsion you see on the surface, is just the solution which helps them to cope with the turmoil underneath. I have to tell the truth here. Your loved one is mentally unwell -perhaps deeply and perhaps temporarily, through no-one’s fault. It is very hard to take this on board when you were thinking that before all this happened life was ticking along reasonably fine. Speaking as a seasoned therapist, I often discover that the eating disorder started long before you think it did. I can see the seeds of emotional instability setting in well before the eating disorder shows its face, but not in every case.
What it is like for carers
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, hating professionals to tell us to just “understand”. It is very hard for loving and panicking parents to properly understand when all they want is a solution. I 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. It is possible that this might happen to your loved one. There is no known treatment for anorexia that is guaranteed to work. There is no pill that will make it go away. Yes, there are many people who live normal lives with mild and chronic problems with food. Sometimes they get better on their own. Sometimes they do not ever recover or recovery happens many years down the line. Even among people who have recovered, the eating disorder will leave a scar. For people who take a long time to recover, life has moved on for their friends and loved ones, while they have been frozen in time. When people recover from an eating disorder, the mental difficulties that were hidden by their symptoms often show up. We have people who find it hard to function, who may be hypersensitive, people who substitute their symptoms with compulsions to exercise or to eat a quirky diet. Treatment for an eating disorder is thus invariably lengthy. It seeks not just to remove the dangerous behaviour but also to strengthen the patient mentally and make them happier. There is the need for a wise, understanding therapist who knows all the evidence base treatments favoured for eating disorders. They need other sources of help, such as a doctor, nutritionist/dietician, 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 be on high alert all the time, with the right kind of input, a person may get better on their own.
What Carers need to know
Eating disorder specialists know that when carers understand eating disorders, and what is and is not helpful, it is more likely that their loved one will recover – in time. Or, the eating disorder symptoms may become less severe. Here are some of the things you need to know:
- An eating disorder is not caused by any single person or situation, acerbic divorces or separations. Parents do not cause eating disorders. Yes, there might be many sources of stress in the life of a sufferer but the problem is more their intrinsic sensitivity than what has happened to them. 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, dealing with the stress is helpful. Recovery is much more likely if carers pull together, take external advice if they disagree and don’t aggress against each other. Carers who use the eating disorder to score points against family members are likely to make the problem worse.
- 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 eating disorder professional, from a self-help group, or online forum.
- Carers who feel that it is not enough to understand the eating disorder will benefit 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.
- Keeping an anorexic person safe by putting them in hospital, if necessary, can be useful until they are insightful enough or tired enough of their disorder to wish to change. But even if there is a turning point, 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 managed by someone who can also hold out hope. There is a high death rate among people with eating disorders; however, by far 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. It is probably that they are irrationally perfectionist and very hard on themselves. They may appear as special, proud and different, which is important to them. This is a grandiose symptom of very low self-worth. It is useless to tell people who hate themselves (even unconsciously) that they are really nice people after all. Low self-worth may persist for a lifetime but it takes the job of a psychotherapist to help someone to grow a new more helpful set of self-beliefs.
- People who deny that they have a problem usually know that they are very sick but they don’t want to surrender to our concerns in case they are giving in to us. They are usually very scared to stop what they are doing for irrational reasons. They may convince themselves that they can get by as they are. A good therapist can help them to express their ambivalence to change, safely and without judgement.
Useful conversations to have
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 are surface level directions, and 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 attempting to guilt or bribe them into giving up behaviours will not work. They need love, sympathy and support. It is going to call upon a great deal of patience and time. You need to be educated on the options for offering help specific to their needs, including offering to assist them in finding the help which they generally refuse even if they know they need it. They will be terrified of losing control or getting fat. There are support groups, organisations, helpful books and other resources to help the parent, child, other family member, partner, or friend offer assistance to the person they care about. These resources can also help the family member or friend cope with their own fears and questions related to caring about and being scared for someone who is dealing with an eating disorder. One of the biggest complaints someone with an eating disorder has about the way others treat them is that they hate feeling as if they are being watched by “the food police”. The instinct to monitor what someone is or is not eating is natural, but it’s not always helpful. Sometimes it’s necessary, depending on what is best for the sufferer (this often depends on their age and level of care needed), but sometimes it only worsens the situation. Take steps to understand what is best for the situation, and make adjustments as needed, such as if you used to have to monitor food intake a lot but now the person has made progress and earned a higher level of trust, you might be able to back off some. It is helpful for parents to be compassionate but firm and consistent. Learning the language of eating disorders is helpful. 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. Say, what kind of help from us might be helpful for you? If they say just leave me alone, ask if they want you to check in with them regularly or just from time to time. Ask them when they feel the need to vent, to let you know if they want you to offer suggestions or just listen and validate their feelings. Ask them 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 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 or hold onto potentially triggering items, such as a bathroom scale or workout DVDs. Let the person 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 when you can. Be alert about the damaging influence of social media. A lot of triggering content is out there on Instagram, Facebook pro eating disorder pages, and other media. Many of the pictures that inspire weight loss normalise unrealistic body shapes and are likely to be doctored. Many bloggers are not confessing the harmful things they do to themselves to look good. Do you know what your loved one is doing online and is there any way you can begin a conversation about this?
Comments about weight and eating
Be aware that comments about weight aren’t helpful. While the average person considers “You’ve lost weight!” to be a compliment, it can come across quite differently to someone with an eating disorder. Even someone who needs to lose weight for health reasons (i.e. being overweight or obese due to an eating disorder) is learning to separate weight loss from being a “good” person. Too often a person who has constantly dieted sees both certain foods and themselves as either “good” or “bad”, and learning to take the labels off everything is an essential skill. It’s important that a loved one understands that acknowledging weight loss should be about being happy the person is making progress taking care of themselves, rather than how great they look or are now that they’re thinner. Conversely, it is important to be mindful of comments said to someone who is anorexic and regaining weight. It’s easy to say, “You look so much better now that you don’t look like a skeleton” or “The weight you gained makes you look healthier” and mean it in the best way possible, but often healthy=fat in the mind of someone with anorexia. Try using more neutral phrases, such as, “I’m happy that you’re taking better care of yourself.” Be mindful of the reactions you get to any acknowledgement of physical changes in a sufferer’s weight, as it’s normal for them to be sensitive about it. In addition, be aware of how you talk about weight and size yourself. Many people with an eating disorder grew up in homes or around people for whom weight was a huge topic and judgements about a person’s size were common. Let’s not lay blame on any one person’s shoulders, but anyone who is trying to help someone who suffers from an eating disorder should be aware of their own dialogue about things like body shape, weight gained or lost, and views on people based on any of that. See the essay about media influences on the NCFED website for more thoughts on this.
Responsibility for Treatment & Progress
In addition to considering how to be gentle when dealing with your loved one, it’s important to realize that eventually everyone with an eating disorder must learn to be willing to be accountable to themselves and those around them and translate the desire to recover into changing their thought patterns and actions. 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. While there are many times when a person, particularly a parent or partner, may need to be quite patient and assist when able to help with progress, there are also times when the sufferer may have to step up and take more responsibility for their progress in recovery. There are times when carers must set strict boundaries such as medical monitoring with no exceptions or excuses. There are times a person with an eating disorder will feel anger at their loved ones for not accommodating their illness – such as preparing a separate meal with a ‘safe food’ or planning a day trip around their particular fears – but there are also situations in which it’s not fair to ask the loved ones to rearrange things or tiptoe around situations. There is nothing wrong with accommodations initially made and used over time, but in some situations it can go on past the point of being helpful and all the way to simply being enabling. Learning the difference between the two is not necessarily an easy art form to learn, but it can become necessary when the person is particularly scared to move forward and may be playing the “But I’m sick” card as an excuse to stay stuck, rather than a legitimate request to help them. If you are the parent of an underage child, or related/married to someone who is clearly a danger to themselves and not capable of making sound decisions, it may be necessary to do your utmost to push the person into intensive help that they may not want, such as inpatient or residential treatment. Talk to a doctor, therapist, or other medical professional about your options and what the laws are in your area or about how to do this properly. You may elicit wild and aggressive feelings and you will need help with it. You will need to let go of being liked or even loved if you want the person you care for to recover. Parents who get help for themselves are the ones who seem to achieve the most.
For carers workshops Veronica Kamerling 01256 704117 / 07733 260475 www.eatingdisordersandcarers.co.uk www.londoncarers.group.org.uk
Suggested books & Blogs
Skills based learning in caring for a loved one with an eating disorder. The New Maudsley Method – Janet Treasure. This will teach you the “animal model” for how to act with someone who has an eating disorder. Some communication styles just aren’t helpful such as being an ostrich (keeping your head in the sand) or a kangaroo (treating the person like a baby who needs to be comforted all the time).
Eva Musby has a range of inspirational videos to help YOU to help your loved one. Visit her You-Tube playlist here
NCFED is selling an e- book online written by Dr Rosie Helyar who has helped carers for many years. Call 0845 838 2040 for a £5 copy
Help your teenager beat an eating disorder. James Lock & Daniel Le Grange, Guildford Press
Fight for Freedom, Rose Anne Evans. Available on Amazon
I can Beat Anorexia, Dr Nichola Davies.
JKP Press Useful Websites www.thenewmaudsleyapproach.co.uk
Our colleague, Sarah Dosanjh, has done some hard work discovering online resources for people trying to recover from anorexia and care for themselves. Here are some Inspiring Instagram links to share with the person you love.
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