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.

Information

For Parents

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 18-25 01458 83790
• SWEDA helpline on 01458 448600
• National EDA 0870 7703256

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

SWEDA runs a carer’s group.

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)
D o 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 of 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.