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

Students'
Experiences
Shared

When your eating disorder seems to be ruling your life what can you do?

Within this leaflet you will read about decisions students have made in order to carry on with their life and recovery.

As a student with an eating disorder you may find yourself faced with some huge decisions to make.

What should I do?

• Manage as it is
• Struggle on
• Defer
• Put on a mask
• Get help to stay well
• Find recovery and enjoy university

It is true that most of us with eating disorders have learnt ways to hide our inside struggles, and may feel that we can do this throughout our university life. We may not realise what we are missing out on and all our energy and concentration goes into trying to reach the impossible place of perfection the higher than first degrees.

We may not realise that there is also a life out there to live, there are friends to make, there are new opportunities and challenges ahead.

We can end up missing out on these because of our relationship with our eating disorder.

"My eating disorder took away my life and my opportunity to go to University. I had so wanted to go but there was no way I could, I had missed out on many years at school and was never able to concentrate enough to catch up those lost years."

"I went to various adolescent treatment places for my Eating Disorder. I was sent work from school, I did not do the number of exams I was supposed to but I got my GCSE’s and then did A levels in the unit I was in. After I finished these, three years after everyone else of my age, I applied for University and had outreach support from an Eating Disorders team and I really enjoyed my time at Uni. This did not mean that there were not struggles, there were many of those but I had help and support and I did not let it get in the way of my life."

"I went to College many miles from my home town. I thought things would be ok as I had my own control in my life. Very soon after arriving at college I realised that I was not coping. I went to my college G.P. who said I was not low enough weight to get help. I went away feeling really upset I had actually asked for help. I made another appointment and told the doctor that I knew I needed help or I would not be able to stay here. This time she listened and 10 days later I got a referral letter for an assessment with an Eating Disorders Team. It was really hard work trying to study and make changes in my life style but I was not going to be beaten. Some days I did not manage well, but I kept going and the old patterns I knew so well did not run riot in my body."

"I had help at home and I wanted to go to University. I knew if I moved away form my support area that it would be too hard. I couldn’t imagine doing this, so I chose to go to a local University to do my degree, this meant I could keep my same support systems and practice living away from home but I was near enough if I needed to get home or to have my family with me. I don’t think I would have managed to do my degree if I had lost my support network."

"I went to Uni and things fell apart quickly and I came home. I felt so bad and like I had let everyone down. I was offered support quickly through a referral from my doctor. It took me a while to begin to see how my eating disorder had taken the opportunity to rule my life. I then applied to refer my course to a nearer one where things would be more familiar."

"I came away to Uni, and hoped it would go away. It didn’t. I managed to get help for my eating disorder and took a year out to sort it out. It was extremely hard work. But what surprised me was how hard it was when people began to see me again when I had put on weight and I was eating. I asked the landlord to put locks on everyone’s food cupboards because it was hard with all the available trigger foods around and when people borrowed my food so I could not stick to my meal plan. This made things safer. It was hard to eat with people after them being used to me eating alone, I needed a lot of support to do this part of my recovery, maybe even more than I had needed to get there because I had all the inside thoughts and was not wanting to respond to them. I love it in my house, I have lots of friends and am staying in this area to find work."

"I was living in a big shared house. I found that I could not eat with people so I found some accommodation near others but on my own and this helped me to work with my support team to get well. It was hard being on my own but it meant I knew I could do what I wanted when I wanted to."

“I talked to my Uni, they gave me a postgraduate flat for my 4 year course and this meant I had safe space to do my food, without this I don’t think I would have managed.”

“I applied to stay in halls for my whole course; I managed to do this by talking to the Uni disability team and having a note form my G.P. to say that would be helpful. It was good for me because it meant that there were always people around. This was important to me as I find it hard to socialise and would not have got out meeting others.”

In hind sight, if I knew then what I knew now I would have though about taking time out for me, not worrying about letting others down because it was me that I have let down.

I think I would have looked at other options and given my self a bit of kindness to find appropriate support and help.

So do take time to consider your options."

This student’s memories and reflections are given to us from her recovered place. She is able to give an outside perspective on her old inside world. She looks at things from a different view. She was not able to ask for help while she was at University and now says she wishes she had been able to so that she could have enjoyed some of her university life.

It can feel like people will be ashamed of you if you ask for help, defer, or stop Uni. There is nothing to be ashamed of, or guilty of, there is no one more important than you for you to take good care of and keep safe. She went on to say:

"I know I had no friends then, I know I spent hours alone, unable to leave my room except to exercise swim, ride, cycle, pentathlon, tennis, squash, badminton, and row, walk and later to steal food that I was unable to buy for myself….

• I wish there had been someone to listen to me, but would I have spoken?
• Could I have told some one how things really were?
• Would it have made a difference?
• I do not know?
• I hope that there can be support systems made to support other people with Eating Disorders in Universities to make their life at University better than mine was."

"My first year was so hard, living in halls and at weekends when there were no lectures. People did not get up and it was very empty and lonely. This was so hard. I often wanted to go home. I was homesick. I found a support group and talked about this and we managed to begin to do things together to make weekend more manageable. I also found community groups and activities to do to fill the time."

" I decided I would go to Uni, I knew my Eating Disorder was not ok, I decided I did not want any help, I had had enough of it, I was going to just get by, I could not face any more. I did my degree, it was hard but I did it."

Sixth form nightmare

The worse period for me was when I was in sixth form. I wished I taken a year out then to sort myself out, but my parents and teachers said not to, as it would leave a "gap" I would have to explain or it would hard for me to go back to studying. There was still the stigma of mental illness and sense of shame about what I was going through. I didn’t want to think about anything and having to make decisions about my future made me really depressed.

Looking back I think I based a lot of my decisions on what was the easiest thing to do not necessarily what was best. I choose London because they offered me the lowest grades, I choose courses depending on their times e.g. not on a Monday morning or Friday afternoon.

To begin with being at university really helped; I was in hall the first year so I didn’t have to cook for myself apart from at week-ends and I didn’t have time to binge and there were always people around. But gradually the bulimia increased again and I became increasingly desperate. There was a student counsellor, but one could only see him every 4 weeks or so. I went to the GP in the medical centre who referred me to the psychiatrist there who was horrendous. While I was waiting for him I could hear him joking with a colleague about a patient who had committed suicide the night before, then when I saw him he was obviously bored by anorexics and bulimics and little girls who won’t grow up, he said it was just a behavioural problem, said I lacked commitment because I wanted to change courses, and asked me if I masturbated! Needless to say I proved him right about the lack of commitment and didn’t go back.

In my final year I found a self help group in central London run by the EDA. It was a start, for the first time I believed I could actually get better and became determined I didn’t want to be this person anymore.

Some possible options

There may be several options open to you, some of these may be even too painful to consider.

Keep going pretend things are ok and count down the days until you finish your degree

Stay at Uni tell your friends how things are for you and seek non statutory support e.g. 18-25, Uni self help groups, self help books, support from MIND, Off the Record, Sane line, SWEDA, EDA, Samaritans. From September 2004 you may want to think about the supported self help telephone helpline , the on line discussion group, email support, pen pals, support by letter, that SWEDA 18-25 is offering. You may want to ask SWEDA to help you work with your university to set up a support system in your Uni.

Ask for support from University Welfare, Tutors, Student support centre -disability team, Counsellors, G.P., Mental Health Liaison nurse.

Ask for a referral to the local secondary Mental Health Team and ask for specialised service to support you while you study.

Ask to defer for a year and sort out things so you can go back and find out what fun Uni Life can be and why some people say that Uni should be the best years of your life

Decide the course is not the right course for you right now and leave

Transfer to a Uni nearer home / where you have had a good support system

Ask your home G.P or support team to refer you to your local Uni team. Sometimes people think it will be ok when I go away, but then they find it hard when they get there. If you have a referral made before you go incase things get hard they will know you are there, if you go with out a referral it may take longer to get help and may get harder to ask.

There is no shame in being prepared and knowing what the options may be!

Sometimes it is better to prepare before you go off and find out what services are in place in the city you are going to and sort out an adequate support network before you leave home, visit www.sweda18-25.org.uk and you may find some helpful links, you can call us and we will help signpost you in the right direction to find support.

It can be a huge step and many people will reassure friends and family at home "Oh I promise I will eat and things will be fine," but once you get away it is not that easy.

Eating disorders are very good at letting us think that they are our best and only friend and that they will be there in the most difficult times of our lives, they are very good at denying reality and let you make promises that they will not let you will not keep.

How do you want your time at Uni. to be?

Do you want to have a good time?

Or to be living on a knife edge?

An experience ~ Living on the knife edge.

"I left home and said to my family "It will be fine, I promise to eat. It will be OK"

They knew and I knew that it would not be We all knew that when I got to University I would not eat.We all knew none of us would say anything. They would watch me go I would sit inside my body as it wilted away.

So as you may guess I spent my whole degree bathed in my eating disorder. It ruled, it took over and I lived by its rules. I worked like a Trojan but could not achieve what I should. I was one out of 2 people in the whole year who got a third class degree. I really failed.

I had been afraid to ask for help, I hadn’t wanted it, I had wanted to be thin, I had wanted to go away and find a place to die. I had never had any help or treatment I did not know what it was I was afraid to fail and let down my family so I plodded on suffocating in my illness. Nobody got me out, nobody could, not until I was ready. I did not know there were options, people on the outside of my world seemed only to want to make me fat at that stage in my life that was all this was about

• Fat and Thin,
• Success and Failure.
• Life and Death

I did not see myself to be good enough I could never reach good, I always felt fat even at 4.5 stone and 5ft9, I was living to die, and dying to live.

I do not know and never will how I EVEN GOT MY DEGREE

I spent 4 very lonely years wrapped in my eating disorder, I did not even realise that I was lonely, well maybe I did but my faithful friend was by my side, my Anorexia then my love hate relationship with bulimia and self harm began.

My university life was an endurance, I hated it but would not give in, Yes I was stubborn , too unwell to see how unwell I was to paralysed to ask for help.

It is only now that I look back at this time in my life that I feel an overwhelming sadness.

I was visiting a friend at University a while ago. I stayed overnight. This was the most amazing experience that I can say I have ever witnessed. I saw why people say University is the "best years if your life".

I saw her in her house, with 4 house mates, all chatting, sharing time and space, watching TV having a laugh, sharing food and eating together , going to the pub, people popping by, and a warm and cosy home they all shared with me that evening.

I went to bed so tearful and so happy. I had feelings of envy and jealousy and feelings of awe and amazement.

• My happy feelings were that now I knew what friendships were, and had seen how they work.
• My sad feelings were that I had missed out and now14 years on from that I feel that I would really like the chance to go to University and experience the life the friendships the company and fun that I have never experienced before.

My envy and jealousy that these people had what I had always dreamed of , a group of friends, a time and space to share and be together or alone but to feel cared for."

Things which helped me adjust to uni life,

1. Take anyone’s mobile number, everyone is willing to exchange, so try to do it, sometimes its great just to be able to text someone to ask where they are and even arrange to meet up
2. Although your bedroom is your private space, its a good idea to leave your room door open (when you are in,) this allows people to pop their head around the corner to say hi!-it helps prevent isolation, sometimes it is to easy to shut your door, but if you show you are open more people are likely to say "Hiya!"
3. Pop your head around other people’s door
4. Take a few photos, posters cushions teddies, personal objects. The best way to settle in is to make your room home. Therefore you want lights radios cd racks, what ever you need to make your room a comfortable safe place to be. I even brought a comfy bed throw, so i knew that I could cuddle up when I needed my comfort base! - its really silly but if your are not comfortable in your own room, then your not  going to settle in easily!- saying that you don’t want thousands of photos just a select few otherwise its to easy to dwell-pretty much everyone I know have photos of friends/family occasions
5. Remind yourself of what you achieved.  I was really ill in my first term, but i reminded myself of what I had achieved and it made me so determined
6. When I went for counseling the lady told me that she found people who visited home once in the 1st term settled in better than those who visited on a frequent basis or a weekendly basis. I think that’s down to individual preference, plus ask parents to visit once or twice, giving both you and them piece of mind. I tried to shut my parents out even when in hospital, but to be honest created to much stress, therefore I guess the moral is not to be scared to ask for help and make some safe bases you can ring
7. Most Uni’s send you freshers week info, plan everything so you know that you have to register with dentists and docs, chose extra modules and stuff-work out where you are going on the maps they provide! And be prepared to cue chat to people in the queues
8. Plan money and stuff but don’t worry if it goes pear shaped, its a learning curve, plus try and buy tickets for all freshers events, sometimes you can buy them b4 uni starts, this means that you have less excuse not to go, and opens doors to you
9. Learn about washing and ironing

• These things have made a difference to me
• Create a list of the things you need to take with you to help you feel at home
• Make a list of what you need to do to prepare for your transition to University or college

Support Systems at University

Some students have experienced worries that they meet someone they know if they go to a group or ask for help.

What if I meet someone I know at a meeting

• Coming to a self help support meeting takes a lot of courage. There can be lots of barriers in the way.
• Many people who come to a group may worry about meeting others, and wonder
• What will they think of me?
• Will they judge my size?
• Will they judge me or talk about me?
• Will I know them form lectures?
• What if I meet someone from my house/ year/ club?
• Will things get worse if people know how I feel?
• Nothing has helped before so why should this?
• Meetings always seem to be for people with anorexia or bulimia what if I have another eating disorder will I be included?

The thought of coming to a meeting can be overwhelmingly scary and many things prevent people coming to get self help and support.

Generally if someone comes to a group they are coming for themselves and we work with a policy of confidentiality, and this helps to make things safe so you would not talk about other people outside the group to anyone. People come to the group for support not for judging, this can give a sense of relief and mutual support.

Generally when people are able to come to a group they find that they see they are not alone and people identify with how they feel, and the feeling of isolation, loneliness and not being understood change.

They realise other students feel alone and can begin to make links with other people who may understand them and look for peer support in between groups. Students have given people their mobile numbers, email addresses and have arranged to meet up and chat and do things during the week.

Within Your University you should be able to get support from student counsellors, Student welfare personal tutors and Nightline.

Some useful contacts

Somerset & Wessex Eating Disorders
01458 448600

Student counselling.org
http://www.studentcounselling.org/

Student Health.co.uk
http://www.studenthealth.co.uk/

Ahead 4 Health
http://www.leeds.ac.uk/ahead4health/

@ease
http://www.rethink.org/at-ease/

National Union of Students Online
http://www.nusonline.co.uk/

SWEDA's UK Support Finder
http://www.swedauk.org/locate.htm

Student Welfare look in your University hand book

Student Counselling at your university look in your University handbook or ask in Student Welfare