SWEDA Somerset & Wessex Eating Disorders Association 18-25 Student Support
"serving those affected by eating disorders"

	Please bear in mind that SWEDA's 18-25 Project has now ended. Much of the work of the project has been taken on by SWEDA and its Schools Project and student support work. These leaflets are not current or made available for download and are provided for reference only.

Young Carers and Eating Disorders

What is a young carer?

A young carer helps or supports someone in their family or where they live who is unwell. You may feel different to other people and not able to talk about it. 

"My brother was a young carer to me when I was at University the same university as him, though I was living in a land of denial and maybe he was blinkered to the pressure I must have put on him, he was a young carer.

I was anorexic, and then bulimic, I hurt myself in many ways infact I do not know how he managed to cope or not seem to notice  the chaos and madness around him. Perhaps he found ways to cope by working long hours

I stole his food, I ate form the bin, I stored rotten vegetables under the stairs, I vomited lots and he remained calm and unconditional.

I do not know if he spoke to others about how it was but we lived with a silence about this and talked if we met about other surface things.

He helped me with work, he lent me his car but we both colluded to the unpleasant silence and paralysis of the voice that my eating disorder brought to out house through my thinness and my fatness he was just how he always was.

I cannot imagine how he managed to be successfully and share his house with a sister who was clearly unwell and in complete denial of her illness."

How are you?

It is nice when someone asks how you are for a change not just about the person with an eating difficulty or your parents.

Questions that may not have answers and thoughts of young carers

 Why won’t my mum eat?

"Why do I take her breakfast every morning and she says thank you in such a cross way that I think she is angry with me and doesn’t love me, I worry about her I don't think she eats and then when she is out I go in her room and find the toast I made for her lying under her bed. Why?"

• What will happen when I leave home or go out?
• Why do I get picked on and teased by others?
• Why is there no food at home? Why are the cupboards empty?
• Why do I have to do all the cooking?
• Why can I not choose a meal?
• Why can’t I have friends around?
• Why does it always depend on what he wants to eat, why can’t I choose?
• Why am I not noticed? Why do I feel unloved?

"My parents are worried about my sister she has lost lots of weight. I feel ashamed I wonder what I have done wrong. They notice her I don’t think they care about me. I have said to her to go to the doctor she says it is ok, I watched her at school, I tried to make her eat, I stayed with her at break times, I didn't have my own friends well maybe my friend and what keeps us together is her anorexia. I am worried how she will survive now I am off to University. What will happen?"

As a young carer with a parent who has an eating disorder may find yourself

• Cooking and trying to feed them
• Ringing home to check they are ok
• Going home when you don’t have lectures to check up on them
• Trying to make them happy
• Worrying about being away from home and wondering how they are all day,
• Wondering if they will be home or in hospital when you get back from school work , college or University,
• You may not go out with friends because you worry and feel guilty that they are not ok and phone them lots every day
• You may feel ashamed and me embarrassed to tell anyone how it is at home or to let any friends come home incase they see how things really are
• At home you may have to eat the same thing everyday
• You may not understand why they never eat or ate with you or disappear /ed after meals
• You may begin to adapt their pattern and relationship towards food and yourself.
• You may look towards some other way of coping with the feelings you bury

You may wish to live with someone else and to be looked after but you continue to look after feed and care for your relative.

As a young carer with a sibling with an eating disorder you may find yourself

• Not getting as much time or attention at home
• You may feel jealous of the time they get
• You may feel guilty for not having and eating disorder
• You may feel very conscious about what you eat and how you look or you may not care at all
• You may look for other ways top cope with you sad, angry along and other feelings
• You may worry about them dying or going to hospital
• You may wish for you parents to love you as much as they seem to love your sibling
• You may wish to leave home and be afraid to incase anything goes wrong and feel continually anxious
• You may find yourself watching your sibling  to see if they eat
• You may protect them from exposure to others and keep them under your wing
• You may get teased and bullied
• You may not understand why they can’t just eat and be "normal
• You may wish you had someone to talk to about how it is for you.
• You may find your studies suffer because you think about them and wonder if they are ok.
• You may choose to stay away from home as much as possible
• You may feel responsible for them and helpless to do anything about their situation.

So much to carry on your shoulders

Young carers have problems and worries like other growing and developing young people.

You may need to find someone at home or at University  who you can talk to about how you feel and your own personal things as well as caring things like being away from home while they are so unwell at home.

You may want to check that they are offering you a confidential space and not gong to go behind your back to do or say anything

When I feel rejected?

Sometimes people have tried to be very kind. They have asked their mate, how did you sleep, how was your day? How are you feeling? All in an attempt to let their friend know that they are there

to offer support and that they care. 

For someone with an Eating Disorder  this may seem like  you are intruding in their life, and they may become angry and shut you out more. Yet if you ask no questions it may seem

like you don’t care?

Why won’t they just eat?

It is important to know that eating disorders are not just about food. They are a psychological condition that affects the whole inside person. What you see is their way with food and their bodies, this is an indicator of something being difficult inside, things that may have no words.

They look better so why aren’t they?

Someone may have put on weight and this can often leave the person in a more difficult place. They are trying  to manage their difficult inside feelings and to study and try life without reverting back to their old food ways. In a place of finding their life solutions, your mate may need and be able to accept more support.

So how do I support them?

 If you are able to be there when it’s ok  for you that will be a great help.

If you can sit and watch the TV together without having to talk

or ask questions that too can help.

Offering to go together out to town/ shopping, and accept if they say no being quiet with someone can be the best gift and the hardest to offer.

It can be very difficult and exhausting for both you and your mate when one of you has an eating disorder. It is important to look after yourself. Living with someone who has an eating disorder can have a huge impact on your life style. It is important that you are able to feel comfortable and at home in your home. It is important that you can put in clear boundaries about what is ok for you. 

This may be hard especially knowing someone is having a tough time at home. If you don’t put in clear limits you may find that you get angry and resent them and that will make it difficult for both of you as the eating disorder will encroach on both of your  lives.

 Their eating difficulties are not yours, you are not there to fix them if you think you can do this you will definitely feel inadequate. No one can make someone better from an Eating Disorder, you can support them on their journey, you can listen and be there and support them to get to the G.P.

Remember having an eating disorder is not like having a small cut that heals outside and is gone.

The outside person may seem healed and the inside person may still hurt but there is no plaster to say I am hurting inside. The pain may be  invisible to us on the outside.

 Caring—The unpaid job

Caring is a tough relentless job. It takes enormous strength and dedication to be a carer and even more to create your own life.

It is tough being a Young Carer. It is a difficult and unpaid job, often with people with eating disorders you will see little changes and feel that it is all too much to manage.

It is important to look after yourself, build up a life for yourself, find out how to help and who else can help you are not responsible for the person who has an eating disorder you are responsible for looking after you.

You cannot make them well , you can support them by helping yourself Sometimes it is really important to have a counsellor of friends you can talk to and talk about how you feel and things that are happening in your own life.

It may feel as if you lose out big time on things that other young people have and do like friends, parties, social occasions, youth clubs, school trips and residentials which makes doing these things when you are away at University or college very hard to do and scary.

You may want to check the NICE guidelines at www.nice.org  to see if your relative is getting the support from the NHS they need and if you could get some support and family therapy to help you.

Also look in your area for voluntary and self help groups.

The national EDA has a contact list.

 Think about the caring you do

If you were going to write and tell someone about the real life of a young carer what would they need to know? 

• Imagine your friend or someone you knew and you did a house swap write about;
• What would their daily routine be?
• What would their worries and fears be?
• What is the worst thing about being a young carer?
• What is the best thing about being a young carer?
• What is the best thing about being you?
• How do you feel about you?
• What things do your friends do that you would like to be able to do?
• What do you wish you could say to the person you are caring for?
• What breaks do you get?
• What help would you like?
• Write a job description for all you do.
• Draw a cartoon story that shows how you live your days , what you do in the holidays.
• What are the situations you dread?
• How would you advice this friend to deal with them?
• Draw a picture of you and how it feels to be you

Talk to a tutor, teacher or counsellor, doctor or social worker about how you feel.

Possible Strategies for you

If you are at school, perhaps you can ask to have a mobile to phone home at lunchtime and speak to your parent or sibling.

Before you leave home you may want to talk to your family GP about your worries and let him/her be responsible to make sure your parent/ sibling is well.

You don’t have to hold secrets that people may ask you to do, suggest they go with you to the doctor and talk about things if they wont tell them you are worried and it is too painful for you to watch and you are going to the doctor for advice of what to do for yourself.

Maybe you can find a quiet space to eat lunch with your sibling.

You may speak to student welfare to help you adjust to college and uni life.

Maybe you and your sibling can be on different sittings at lunch and be in different tutor groups or courses. If your parent ask you to go to the same Uni to look after you sibling you can say NO.

Maybe the teachers and lectures can understand  the pressures you are under if you tell them and help you with homework deadlines and with exam situations

Perhaps you can speak to your tutor , doctor or a counsellor each week or if you are very worried or anxious

Perhaps there is a quiet room where you can go on campus if it gets too much.

Create a list of places you can get help , so that could be your emergency numbers, and contacts as well as places for you to go and be safe and understood. It is better to know these things and have prepared strategies to manage situations.

Where can you be heard and get support

National carers association,
20/25 Glasshouse Yard,
London
EC1A 4JS
Telephone 01714908818

or Carers Line 01714908898

National carers line 0345 537369

Samaritans 0345 90 90 90

Sane line 0345 678000

Anti bullying campaign 01713781446

SWEDA helpline 01458 448611

Co-dependents Anonymous may have groups in your area too

Eating Disorders Association have some contact lists and carer’s groups as well as support groups for people with Eating disorders

Get support for yourself.

Remember in life

It is often the people we trust the most who we hurt the most.

This does not make  it ok to be hurt though

You have the right to say NO

Email us for support at support@sweda18-25.org.uk

Somerset & Wessex
Eating Disorders Association
Strode House
10 Leigh Road
STREET
Somerset
BA16 0HA


Telephone 01458 448611
www.swedauk.org

SWEDA is a registered charity (No.1056441) and a company limited by guarantee (No.3208772)