Family and Friends 

What it feels like when your child has an eating disorder?

Having a daughter or son develop an eating disorder can leave parents and families in a difficult and painful place. Often it seems as if there is no one to tell or to turn to and you end up carrying all your thoughts and feelings alone.

You or your friends may wonder why can’t they just eat and keep the food down. An eating disorder is about food but much more, if a person could just eat they would but underneath the food issues lies a whole host of thoughts and feelings that make the issue very complex These things can leave parents feeling very frustrated angry upset and sad.

Some descriptions have been:,

• It is like a huge bereavement where you watch your child slowly commit suicide in front of you and feel like there is nothing you can do. Whatever you do doesn’t seem to help or to reach them or make things better.

• You watch the sparkle drain from your child, draining you, draining everyone, you want to be the perfect parent, to help your child but what can you do?

• It feels very lonely and isolating; you may be ashamed or embarrassed to tell your friends, or relatives, what will they think of you?

• Sometimes people look at me as if I have done this to my child, they make assumptions like I had an eating disorder and gave it to my child or that my child has been abused and stigmas build for us as a family and we feel that this has to become a secret.

• I feel guilty, I wonder why it has happened to my child, to my family why me what did I do wrong and I bottle these feelings up because I am afraid of what people will think of me.

• I sometimes keep my thoughts and feelings and what I know is happening to my daughter away from my partner, because it is too much for him to bear.

• I so wish someone knew how it feels to be me.

• I desperately want to give them anything so they can be happy.

• I worry that whatever I say may trigger more self anger and make things more difficult

Where do you turn for help?

• I turned to the G.P. they didn’t know what to do, they do not have the time or specialized experience and expertise to help.

• It may be that you go to a G.P. or specialist team and they talk to you or about your son/daughter’s treatment in medical jargon that you do not understand. It is fine to say “I do not understand” and get them to explain in English. Some parents find that the use of medical language is another barrier and feel that it excludes them from the help their child is getting and that it is missing the point of how things actually are.

• I endlessly search through the phone book to find some help, it all seems so far away and become an anonymous space where I wish there was something close to home a personalised local service.

• I want support, for myself, my family.

• I would like to have had the chance to talk to other parents and share experiences in a safe and understanding environment.

How do you support your child?

What can you do?

If you and your child decide to go to your G.P. you need to ask for a referral to the local Community Mental Health Team, refer your G.P. to the NICE guidelines January 2004.

“Eating Disorders:anorexia nervosa, bulimia nervosa and related eating disorders”

www.nice.org.uk/cg009niceguideline

Telephone:- 08701555455

Then you should get an assessment and hopefully they will be able to support your child and offer them a referral to a specialist Eating Disorders team.

You may then be left with lots feelings and may want to talk these through with people who understand.

You can call

• SWEDA helpline on 01458 448600
•    National EDA 0870 7703256

You may find a local carers group or parent line that is helpful.(0207 4908818)

We are looking at possibilities of online support for parents and families to help manage these feelings and thoughts.

Some students wrote the following and these may be helpful to you

Supporting people with eating disorders

• Do stay around when things are tough
• Do not abandon us
• Do drop us an email or text to say hi
• Don’t assume we want to be left alone
• Do be there
• Don’t run when we say go
• Do be there to show you genuinely care
• Don’t ask loads of questions…(Who What When Where Why)
• Do be ok with silence, ours and your own
• Don’t feel you have to make conversation
• Do allow us time and we will speak when we want to
• Don’t have expectations
• Do be assertive
• Don’t invade our space
• Do use your initiative
• Don’t see us as an eating disorder
• Do see us as a person
• Don’t be afraid
• Do take time to build a relationship with us
• Don’t be patronising
• Do respect us
• Don’t make such a big deal of it all
• Do treat us normally
• Don’t become obsessed with food, weight and eating
• Do realise if it was all about that we would be doing it
• Don’t think you know the answers
• Do please, just be a friend.

What is it like when your child leaves home to go for treatment / or to University?

This can be a really difficult time, it maybe that your child has never been away from home, maybe they have not slept over at friends and had sleepovers for many years or at all , or that they have only been away under the professional care system and now they are proposing to go to University.

It is very natural that you will feel highly anxious about this, that you panic about how they will cope, how they will manage to eat, cook, keep up their weight, manage to make friends and socialise and stay safe and you may find this all too much and that when they go you will have a gap at home with all the things you used to do to support them and then you don’t know how to reach them

You may celebrate that they have reached a stage to leave home and try independence you may hope that this will be their turning point, that their pride of being a student, of belonging and making a place for themselves in the world will help them recover and for some people it does. For other people it is a very traumatic event of leaving home which leaves the students very vulnerable and you may get lots of phone calls and hear all the pain and worries and want to drop everything and get to your child, then debate if this is the right thing to do or whether it is better to listen on the phone or what. You may feel in a much paralysed position and feel unsupported. 18-25 is here to support parents and students with this transition.

Here there is no right or wrong but keeping yourself with support is really important so that you can decide rationally how to support your child.

It may be that:

• They decide to defer for a year and come home and work on their eating disorder. This may feel to them like a huge failure, but if they can see that by deferring they will be able to go back to university later and find University to be “the best time in their life” rather than hold painful memories of the hours and years of agony it may be helpful

• They decide to go to the college G.P. and ask for specialist help at University

• They decide to find an Eating Disorders aware counsellor or therapist

• They look for support from 18-25

• It may be that they speak to college welfare and to disability team to see what practical support is available in the university for example halls, flats with personal cooking space, extra tutorials and extensions to ease the pressure. Universities and colleges do not want students to fail and will generally do what they can to help students achieve.

• They may decide they leave university and do something completely different and maybe at a later time go back as a mature student. This may feel disappointing for you as the parent, but their inner drive for perfection achievement and inner pressure to do and get a first class degree at this time in their life may not be assisting  wellness and a path to recovery.

Meal support

Meal supporting can be a difficult thing to do and to receive. Some 18-25 people have made some suggestions about what may be useful for meal supporters to know.

It is important to remember that each person you meal support is individual and a meal is a very personal and intimate thing to support someone with an eating disorder in.

Therefore it will be important to ask the person what they find useful and also what they find not helpful so that you have a baseline to work together and move forward from.

Things that help

The Environment

It is important to achieve a balance between “normalising” the environment to minimize stress and to be aware of the specific eating difficulties and needs the person you are supporting have. Generally if the meal supporter is providing support in a relaxed way and behaving naturally it helps to demonstrate that mealtimes are a healthy part of everyday life.

The serving

This needs to be agreed before the meal as on the spot decisions can be very stressful and upset the meal. It is easier for meals to be served away from the table as this saves the agonising time of wondering how much a portion from a shared dish is. It also can make you self conscious with other people around and watching which may make you stressed and not wanting to eat the right amount. But if everyone else is serving themselves being given a ready prepared plate is patronising.     In these cases it can be helpful to have someone who can take their portion that you can copy and know it is safe and allowed. So the meal supporter needs to be eating a similar meal to your own so you can see they suffer no ill effects from eating the meal so why should you?

If there is doubt about what size a portion should be talk to a dietician or nutritionist before you plan your meals so that you are all clear about portions sizes.

Distraction

Having background noise whether this is music or having the radio on can help relieve the tension in the room. Carrying on with general conversation unrelated to food can also help however the person providing the support needs to know that struggles with food can become very preoccupying and intense so do not try to launch into a demanding conversation requiring continual responses.

So, keeping a light conversation going away from food and eating disorders and where they do not expect you to keep talking back and are not talking about weight, food diets, calories or exercise

During the meal :The actual process of eating the meal can make you feel extremely self conscious, so it is important not to draw too much attention to the person needing support. There is nothing worse than feeling watched which is why being distracted is helpful with music and the radio

After the meal

Be cautious of praising someone for completing a meal. This can provoke different reactions in people and is a very sensitive area.

It is important that people feel that their efforts are acknowledged and that others appreciate what an achievement it is for them, for some people this can enhance shame guilt and self disgust.

The way in which feedback is given is important so it doesn’t feel patronising. It can be helpful to have an activity planned for after a meal to enable digestion to be a natural process and the focus goes away from reflecting on what you have eaten.

• Eating a similar meal to your own so you can see they suffer no ill effects from eating the meal so why should you?
• Having people eating around you is reassuring because you don’t feel the centre of attention.
• Keeping a light conversation going away from food and eating disorders and that they do not expect you to keep talking back
• not talking about weight, food diets, calories or exercise
• being able to directly challenge anorexic thoughts when you are struggling, possibly using techniques from CBT (Cognitive Behavioural Therapy)
• Firm in that they don’t let you get away with not eating what you are supposed to and who knows to keep a non intrusive eye on food being hidden.
• being non judgmental
• Confident about portion sizes and can eat the same and reassure you it is not too much.
• Having an agreed time scale before the meal can be helpful with gentle or casual reminders can avoid the endless agonising over eating and prevent meals from dragging on indefinitely
• helping you to take responsibility for yourself and your meals.

Things which are not  helpful

When the supporter is…

• Not eating or eating salad when you have to eat a full meal of protein potatoes and Veg and a pudding.
• Saying “just eat it” is not helpful because it is not that simple! Or we’d be doing it
• Making food the main focus of the meal time.
• Saying “Don’t you like it,” as it seems then that they don’t understand since when was it about if food tasted nice!
• Being singled out from a group and commenting on portion sizes , eating habits even if done casually can be extremely embarrassing.
• Having to respond to conversations in a group situation at any length can feel very awkward as you can feel people are watching and judging what you are eating even if this is not the case.
• Watching you and every mouthful of food you eat.
• Drawing attention to you.
• Rushing you to eat quicker or finish as this adds stress.
• Making it obvious that you are taking longer than other people or  that you are finishing last

Reflecting on how it is going

If you are supporting someone maybe check out how regularly you want to talk about how the meal support is and review what is helpful and what is not helpful and talk about the difficulties that you both have and make a plan to help you work together more.

Being able to be open and honest is important and will help you build trust with each other. If it is hard to do this you may choose to do some writing to each other and then write about what you would like and need and how it feels to be in your role. You may choose to share this with your supervisor to help you work more effectively with the person you are supporting. If you are being supported you may choose to share your writing with your therapist and or with your meal supporter.

Behaviours can be challenged. It is hard to do therapeutic work at the table because of all the emotions facing food can evoke.

Sometimes it can be helpful though painful to have issues addressed around portion sizes and tacking really bizarre eating habits at the time is helpful in the long run, although it feels horrible

It can be necessary to ensure adequate amounts are eaten and to prevent really antisocial habits from becoming established and therefore seem acceptable. This needs to be done in a non confrontational or patronising way as an instruction, it simply makes you feel ashamed and defensive, which reinforces negative self perception. Introducing these casually and in a non judgmental manner by phrasing them as suggestions e.g. “Don’t you think it would be a good idea if…?” can reduce a sense of being controlled and encourage self-respect, because you are being prompted to take responsibility for yourself.

What if I have no meal  supporter?

Work with your dietician to create a meal plan that can work for you.

If you do not have a dietician find a friend you trust about food and ask them to help you plan what to eat and shop if needed.

Work out when and where you are going to eat each day, so if you are at Uni or college you may need to take a packed lunch or choose to do the canteen with a safe friend or learning support tutor. So make a meal plan to suit your life, check portion sizes if you worry about this with a State registered dietician or reliable book.

Some people find writing how they feel before their meal , how they feel during and after their meal as helpful and find their health care professional or friend or family to share this with or keep a private journal for yourself

Sometimes it is important to have a plan of what you are going to do after your meal, whether that is writing, going for a walk, make a phone call, text a friend, drawing , going to a lecture, listening to music going on the website doing an assignment.

You may find you can only buy food for one meal at a time and do not feel safe to do a bigger than this shop. Sometimes you can ask a friend to shop with you.

If you find yourself reluctant to eat try writing letters to yourself

“If I carry on not eating / bingeing/ __________ for the next year I think my life will be ……….”

“If I decide to eat and take care of myself I see that in a year my life will be………….”

Then you can write back to yourself from the rational well part and the food difficulties bit and see what you notice. You may want someone to witness this like a counsellor or other health care professional.

It can be hard to be honest but the only person you trick is yourself.