School and studying

Being in education, at school, college or university, could be difficult as well as rewarding. For many people we spoke with, doing well in school was really important and often a big part of who they are. People talked about the risk of becoming too obsessive about school work when they were unwell; their behaviour and thoughts could spiral out of control. The social side of being in education could be challenging. Fitting in with other students could be hard, and some had been bullied in school. Being at university meant being independent and having more flexibility. Freedom could be a shock, but a starting a new chapter in life could provide positive motivation to get better and to stay well. We also spoke to people who had attended school at hospital during their inpatient treatment (for more see ‘Staying in hospital’).

School work & exams

Many young people described themselves as having “perfectionist” tendencies, being “driven” and “hard-working”. Some said that their self-confidence mainly came from doing well at school. Being able to do some school work or sit exams even during hospital stays could be hugely important.
For many, the pressure and competitive environment of school had contributed to becoming ill or relapsing. Often the pressure came from the person themselves: it wasn’t about wanting to be better than others but the best they possibly could. Exam times could get especially stressful and people described working “obsessively”, especially when unwell. Zoe described how school work took over everything else: social life, relationships and hobbies. Eva had to learn to find the right balance between school work and social life because she could easily become totally absorbed in work.

Zoe became obsessive with her schoolwork. During postgraduate studies she started doing more fun…

Age at interview 23

Gender Female

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I mean undergraduate level, I worked very, very hard. Especially, I mean of course everyone works hard and especially in the final year, but in the final year, again, the work really got too much to the point where I was not sleeping. You know, I would be up the crack of dawn, go into the library, stay there till evening. You know, come back at sort of ten o’clock, try and go to bed, not be able to sleep and it got too much. And in the end, I was almost it was it was there was a lot of concern and it was almost to the point where I wasn’t allowed to sit my final exams.

Just cos I was just totally overwhelmed by the work and then when you’re not sleeping I was, you know, my mood was all over the place and it just got ridiculous. Apart from that, I think though, I was always I worked harder than the average, average student. I was always, if I did go out, I would always, you know, get up. I would never lay in bed like so I, yeah, and all my friends knew very quickly, I sort of got this reputation for being this very conscientious, hard working person, which is not necessarily a bad thing, but just at points it did get, take over.

And, actually, now I’m here doing a post graduate degree things, they’re still, they’re not great in terms, well, no, they’re fine but I do still have this reputation for working very hard. Not giving myself a break very often but it’s hard in this environment, because a lot of people don’t and, actually, compared to a lot of people I’m actually pretty good. And I’ve really worked over the last year and a half to try and incorporate other things into my life and more, and sort of trying to shift the balance away from work. Work’s still very important to me but I sort of figure if I do a good day’s work, nine to five thirty, I then don’t have to work in the evening.

And at weekends, I usually do a bit but it’s quite relaxed and so I’ve really I really feel like I’ve sort of turned a corner over the last, especially the last sort of year. And so that’s good but I certainly, it is something that I’m much aware of now but if it, I could easily fall into the same traps again where I was just, I’d just work all the time.

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Failing her A-levels and seeing friends move on with life made Hannah O want to get better. She…

Age at interview 22

Gender Male

Age at diagnosis 13

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What do you think was that sort of change in you that you wanted to start getting better?

I think I failed like the first two years of college. I just, I’d been sick, like I started making myself sick quite a lot like when my periods came back and I just couldn’t take it and I just started binge eating and being sick and I just put on weight and I it was just like a horrible time.

And I failed my A levels because I was just being sick like three times a day or something. Just my body was just, I felt horrible. I felt like so unhealthy and so disgusting and then my friends started going to Uni and stuff and I just. So I went back to college and I thought, I’ll just try hard this one year

And I did like my A levels in one year and passed and went to Uni and I think, when I started, when I started having something to work towards and just that I wanted I knew that I’d be so fed up of being ill. I was just like, exhausted and just, it was just horrible. I just wanted to be like my friends again sort of carefree as any like eighteen year old. And I wasn’t and then I think that’s when I just I started trying really hard with my A levels the second time round and that was when, I think that was when I got better really complete like just having something to work towards. Yeah, and something, a distraction.

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Not everyone felt able to engage with their school work. They described not being bothered about school work, or missing school because they were unwell or being bullied. Georgia disliked everything about school and Andrew refused to go to school because he associated his problems with the school environment. People often struggled with moving between schools. For some, the move from primary to secondary school had been a trigger to develop the eating disorder, or they had relapsed when moving to college or university. This was because of the new environment and increased pressure but also the more informal structure of college or university. People were so used to control and rigid routine that having more free time and a flexible study arrangement could drive them to exert control over their food; they may start to restrict or purge.

Chloe got too ill to attend school. She wasn’t too bothered about it because she ‘hated’ school.

Age at interview 19

Gender Female

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So it was it was all starting to get a bit scary. And then I had outpatient appointments for maybe like a couple of weeks but by that time I was so ill I couldn’t go into school.

And like I couldn’t do much. Like I used to go swimming lessons and things like that but it was just it was getting to the stage where I didn’t have enough like body fat and stuff like that to keep me warm in the water and things like that. So and then the GP was like, Well, maybe you should stop exercising just now. So it was a bit disappointing because like I never really found that exercise was something that I did try and lose weight but it was it was just like the things that I enjoy I wasn’t allowed to do.

But I wasn’t so fussed about not being in school because I hated it. I just felt like I was just really nervous in school and I didn’t like I don’t I didn’t have a big group of friends of anything. I just sort of tagged along with people and I was just nervous to speak and Just, I don’t know. I didn’t like school so I wasn’t that bothered. I wasn’t very happy there anyway.

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Some had failed or underperformed in their GCSE or A-level exams because they had been too unwell. For Rob and Sam, for example, not being able to do well in exams “hindered” their future opportunities. Not being able to apply to university meant they had to find other options.
 

Rob couldn’t sit his GCSEs so he did an Open University course then went on to music college. He…

Age at interview 17

Gender Male

Age at diagnosis 14

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It, it’s almost like with education you’re like sort of funnelled down this route, you know this one sort of path and if and I was completely outside of that. And so there’s no there’s nobody there really trying to push me along. It was like sort of just floating [laughs]. But only it turned it turned out that that I found out about kind of another college actually. it’s like a music college and they have a course which was which, it’s kind of more academic rather than like an instrument course and I just applied for that and I thought that would be really ideal cos I’m interested in music. it’s the equivalent of two A levels so it would be a good way to kind of progress, start to progress as well. So I just applied. They took me on the strength of my Open Uni qualification and the kind that I, the evidence that I had with my work that I had been doing and stuff.

So I got in and that’s what I’m doing at the moment. I’m kind of there for another, until June or so and then but it it’s really good because cos now I’ve got this world of opportunities that’s opened up really and I do actually have, in my mind, like a quite like, there’s a journalism course that I would be able to qualify for with, if, you know, if I pass this one. So I do actually have like this move forward and it’s and it’s all achievable and I feel a lot more lot more positive and like I have more direction than really now more than I ever have in my life even prior to being ill certainly. So that’s been tremendously positive.

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Peers & bullying 

“You’ve got to look a certain way within schools to fit in.” -Nico
 

Many young people we spoke with shared a sense of “not fitting in” with their peer groups or having “an alternative” outlook; they could feel isolated and lonely. They often compared themselves, or felt compared, to others and some described feeling “inferior”. Some said they didn’t feel comfortable in the “superficial” culture at school where they felt most people were focused on looks and popularity. Sometimes people felt self-conscious of their weight, felt over or underweight or were teased about their weight see ‘The beginning of an eating disorder’.

Some had been bullied in school. Sam nearly dropped out of school after years of increasing verbal abuse. Another result of the bullying was that Sam didn’t get the exam results he wanted and was not able to apply for university.

Sam was bullied in school since he was 11. Teachers had no control over it. Sam started comfort…

Age at interview 25

Gender Male

Age at diagnosis 16

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Well I guess it really began when I was 11, it was, I was in year 7 the first year of High School and from the word go you know I was bullied quite badly, mostly teasing, for lots of different reasons. It was partly because I was very clever, that was very obvious I was in the top set, I was called swo quite a lot, and various other words like boffin

And it was probably quite apparent to my peers that you know I was not conforming to the typical male stereotype. You know I didn’t, wasn’t interested in football, wasn’t interested in girls, and wasn’t interested in any of those things. And it was often assumed that I was gay. And I was called all those different names that were quite derogatory and of course that bothered me, but at the time, I didn’t know what gay was, because of course the word itself is often misused. Just because I am something that’s not good or un-cool, as in that is gay. So of course I had this sort of slightly odd idea about what that word was, and it wasn’t the true meaning.

So it meant that you know I couldn’t, and certainly at that age I didn’t, you know, it wouldn’t, I didn’t obviously think that I fancied men, you know, so that I was too young really to sort of make those, you know realisations, and least of all that connection between the word and what, what it really meant.

So of course a lot of that over time sort of built up and it’s the bullying, like a lot of bullying if often spreads, it’s like a disease. You know once one bully you know gets away with it time and time again other people join in, and before you know you’re getting ganged up on. You know and that was the secret of the school yard, it could be even in lessons, you know if the teacher couldn’t quite control the class. So for about two years, years 7 & 8 it was just constant teasing and you know I probably just about coped with it, and then in Year 9 I think that was when everyone’s hormones sort of seemed to kick in, because it seemed to, you know become more intense. The bullying was more it became almost more violent.

I remember on one occasion in Year 9 I think it was like the first geography lesson, and a bully decided to pick on me that day and I think I reacted to him by saying, Will you please go away or something and he said, No and I threw something at him because you know I was just so annoyed, and of course you know I was really beginning to not be able to cope with it, you know, I was quite anxious, it was the beginning of the school year, so I just stormed out of the lesson.

And that’ s what I frequently did at that point, but where I would go, you know it was the boys’ toilets, locked myself away in a cubicle because it was the only place you knew you wouldn’t be found. And I don’t really remember the first time but I used to sort of just comfort eat, partly from boredom but partly for comfort. And you know that used to make me feel better but sometimes you know I’d eat so much in such a short period of time you know I’d feel quite uncomfortably full. Of course there’s all that bit of tension and anxiety, so that whirling in the stomach sort of feeling, and you know I really wanted to get that out. And I felt like I was going to be sick anyway.

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The bullies often targeted people who already were quiet or had low self-esteem. Some had been called names referring to their weight. Craig was bullied from the age of 8 for being shy and quiet. Being singled out and bullied often knocked people’s confidence even further and could have long lasting impact on their lives.

Teachers and support from school

Some had extremely supportive teachers they could trust and talk to openly whereas others found their teachers were not very supportive. Sometimes a teacher was the first person the young people confided in or who picked up on the eating problem. Suzanne was able to talk to a teacher she “adored” and Eva used to eat her lunches in her teacher’s office at times when lunch breaks felt too much to cope with. The school could also support through school nurses or counselling and by offering flexibility around exams and hospital appointments during school hours.

Elizabeth said while most of her teachers were horrible, she had a fantastic Biology Teacher…

Age at interview 20

Gender Female

Age at diagnosis 12

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Teachers, some teachers were amazing, other teachers were horrible. Some, yeah my form tutor was brilliant. She took me under her wing almost, and kind of cared for me. As you would do a kind of to a child almost I guess, as a daughter. I was, she was a biology teacher, I don’t know if that meant she understood any better or not, but she just seemed to kind of empathise and support. Other teachers were horrible, they were like Oh, she’s not been here for a whole year, so we’re just going to give her a C because and I was a straight A student. Like I, you know, this was, before that I was like got A’s in everything. And so, Oh, we’re just going to give her a C because she’s not really been here. So we don’t know what she’s like, so we’re just gonna like, we’re just gonna give the average really dismissive. Which I found really hard to deal with because it was like well they really obviously don’t care, and it made me feel like an even more of an outsider.

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Others were less fortunate and talked about teachers who were unaware, uninterested or incapable of stepping in to stop bullying and/or lacked understanding about eating disorders. Lack of support from the school could lead to people feeling more inadequate and angry.
 

Rachel said her college was ‘hopeless. Despite promising flexibility, teachers complained if she…

Age at interview 24

Gender Female

Age at diagnosis 15

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College was fine as far as the work was like most anorexics I am a perfectionist and when I was trapped in anorexia, I would do homework set that day on my breaks at college to be the best I could be and also to avoid my friends.

As I got iller the work load got stressful but college was hopeless they had said they would take the pressure off me but then started complaining when I hadn’t handed one essay in after a particularly hard weekend for me.

My tutor had called me in for a meeting as a friend had gone to her concerned about me. All they did was give me information about Beat but because I was in denial about my anorexia I never used it. Other lecturers tried to make me eat lunch or informed other lecturers that I wouldn’t be paying attention in classes as I hadn’t eaten!

When I was at the unit, I was only allowed to go to one lesson a week, only increasing the number of lessons I went to if my weight went up. Originally college said they would give me a home tutor but when I started going to three lessons a week they said I didn’t need it any more, even though I was still missing nine lessons!

I kept to the college timetable at home; did extra work and was getting excellent grades but they still complained about me not being there. They told me off for not going to English Literature even though I was further on in the set book than everyone else and I literally couldn’t go to lessons as they were over lunchtime or a time when I was supposed to have an Ensure.

In March two months before my A-Levels began they called my Mam in for a meeting to say I had missed too much college and would fail my A-Levels. They advised me to take a gap year. My Mam disagreed as she knew I was working hard and that getting into University was my motivation to eat. So she told me to stuff the unit and college; how I would go to as many lessons as possible I started going to 10 out of 12; revised as much as I could and ended up with 3 C’s!

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University

“It was just the change of environment, going somewhere, the fact that nobody knew. Like you could meet people, without a label – have a kind of a bit of a fresh start.” -Katie
 
For those who went to university, there was often a complete change of lifestyle, which was both exciting and a little daunting. Moving to a new place and leaving family, home and peers behind could be “a fresh start”, free from the triggers and reminders of their past experiences. They felt free to meet new people without having a label. Moving away from home was a huge “relief” for Andrew as most of his problems were connected to family relationships at home. Some people felt that leaving the daily practical and emotional support provided by their family was hard at first.

Starting university was a changing point for Hannah O. She wasn’t burdened by the past and…

Age at interview 22

Gender Male

Age at diagnosis 13

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Yes, so then you stopped the outpatient treatment or anything when you went to university?

Yeah, I think that was I was that was just like the changing point in my life. It was completely new and no one knew that I’d been ill. Nobody knew.

Yeah.

Like, you know, you can just be this whole new thing like. Whereas at school I was still that girl that had missed like five months at school and I think that’s what I really like about it and made new friends and just kind of become who you want to be really.

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Getting a place in a top university was a big motivator for Elene to get better. For the first…

Age at interview 20

Gender Female

Age at diagnosis 15

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But yeah, I guess when I found out I got into [university] and I really suddenly felt like, Oh, my God. I finally have something to lose and that all that was worth something on paper And yeah, so I guess that kind of changed things and it just I guess what my parents like thought about me didn’t really matter much anymore.

Like I live in the middle of nowhere in the holidays and like I was always trapped there like with no money and to get away and I couldn’t drive and no one would drive me anywhere and trains every three hours, or two or three hours. it’s better now. And I guess I felt that meant like, Oh, in the future, like I will be dependent, independent, like I’ll be able to do what I want So yeah and then what’s, yeah, I guess like so my like the whole kind of behaviour, like eating disorder behaviour really liked died down. I was about eighteen.

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Going to University also meant a change in the formal support services such as GPs and mental health professionals; this could have good and bad sides. There could be a gap in counselling, for example, before seeing anyone new. Some people couldn’t find a new therapist, or set up a regular contact with services. New health professionals could turn out to be great and university towns were more likely to have GPs with a special interest in eating disorders or young people’s mental health issues.
University also usually meant a big change in eating routines. It could be an opportunity to leave old unhealthy eating habits behind. Young people became either solely responsible for buying and cooking their own food or some stayed in catered halls. Sharing kitchens and eating with others could be hard and some people felt uncomfortable. Katie said seeing how others ate, and their portions sizes was actually helpful in learning to eat more “normally”. It could be helpful to tell housemates about their issues and if they didn’t want to share foods in the fridge, for example. Living in catered halls made it easy because people didn’t have to plan meals but people also felt that eating with others could be tough.
 

Harriet is very independent so found it easy to settle at university. Her mum said not to worry…

Age at interview 19

Gender Female

Age at diagnosis 15

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I think, in some way, my time in London helped me in terms of living away from home for such a long time. It didn’t really faze me coming over. I mean, obviously, I was anxious and stuff but maybe not as much as I would have been. And I think the eating disorder somehow, strangely gave me independence because I’d been sort of independent. I always sort of chose what I ate and chose what I wanted to do, whereas some people, you know, come and they’ve been, their mums done everything for them, whereas I sort of personally chose to be more independent, yeah. Yeah. it’s just been a case of making sure I eat enough and, you know, it’s busy and I sort of find that it’s sort of, well, sometimes it’s easier to eat because, you know, I need the energy to concentrate and I find if I do get quite, you know, haven’t eaten for a while and then try to do work it just, it’s, doesn’t work and I don’t focus and stuff.

How have you found it practically the sort of the routine of buying food and cooking and eating? Do you find it easy to maintain or?

Buying food is okay. Sometimes I worry if I spend too much but my mum’s like, I don’t care how much you spend, just as long as you’re eating And cooking has been okay. Sometimes I’ve sort of thought, Oh, I can’t be bothered to cook But I’ve always had something sort of handy. Sharing the flat and sharing the kitchen and stuff, it’s something, it’s been okay but I’d don’t really like people commenting on what I eat or.

Just sometimes like social food like maybe getting a pizza or if people want to get fish and chips, I find that quite anxiety provoking cos I like to sort of have my routine and know what I’m going to eat and I still like need to be prepared for something different.

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Usually universities had more support available than schools for those who needed it. Some people had been supported by their university’s disability and welfare office. Practical support could include:
  • Help with time management
  • Extra time for exams
  • Informal emotional support
  • Information about other services
  • The university just being aware of possible issues
Francesca felt strange at first about getting support from the disability office but realised that an eating disorder was like any other illness and she deserved the same support as others. She was also able to apply for accommodation with private kitchen and bathroom on medical grounds. For Nikki, her time at university was “rough going”. She had recently come out of hospital and didn’t have the right support. She was “dead set” on doing her degree and, although it was tough, she never regretted it.

Laura was supported by her university’s learning support team. Not having a predictable routine…

Age at interview 18

Gender Female

Age at diagnosis 18

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Because I’m on like a professional course I have to see Occupational Health and be cleared by them. So I could, they could quite easily ask me to leave because of everything that’s gone on since being at Uni, but they’re quite supportive because of how my marks had been before Christmas, because I was getting Firsts and stuff. And it’s only since kind of Christmas that things have gone a bit more downhill.

But like my Tutors who are really helpful have put stuff in place like sorted out extensions and I like have sessions with the learning support team to try and keep up with my work. Because I don’t do very well with not having a routine, so when I have like not very many lectures and it’s really difficult for me to not struggle. Because it just gives me too much time to think about things, and I’m not very good at structuring my time. So they kind of try and help me create some sort of structure.

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Francesca had weekly mentoring sessions through the University’s disability office. They worked…

Age at interview 21

Gender Female

Age at diagnosis 16

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What does the weekly mentor mean, how does that work?

it’s part of the disability scheme and they allocate it based on your need and, obviously when I had my first assessment, I was quite needy, safe to say. So I actually get allocated an hour and a half each week to go to the mentor and it’s kind of up to me and her what we do, like I work with her. Any anxieties or problems that I’ve got I work through, like she lets me if I have a presentation to do, like I can go there and practice my presentation, she helps me work out the timetable for the week so that I can make sure I get all my work in at certain times, and she also sort of, actually really encouraged me over the last year to make sure I have social time and time for myself which I think, what else do we do? If I have any problems, she’s just there to listen.

So, which is nice to know that there’s someone impartial that I can go to. But yeah it’s really just up to me whatever else I needed. If I need any help, she will contact other people for me, on my behalf, and help me do that, like when I had issues. This year I had to find accommodation again without friends, but she helped me do that and she helped speak to people on websites and all of that so, it’s just really whatever you need.

So it’s very pro-active and very involved?

Yeah, really. If there’s time to that I just, she can see that I’m, I don’t want to be there she’ll kind of just be like, OK, is there something I can help you with? What’s up And sometimes I’ve, I just, I just don’t need anything that week and she’s just like, OK well, we’ll leave it at that, you’ve got my email And if I ever do go upset or have any issues, she’ll email me during the week before our next meeting just to check up on me. But she’s nice so I do always know that she’s there. That’s very helpful.

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Sometimes people got in touch with the university support services before they moved to university to make sure there was help available for them.

Ewan will move into adult services as he moves to university in a different town. He has already…

Age at interview 18

Gender Male

Age at diagnosis 15

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The phase between moving on from CAMHS to adult services – how is that taking place? You know is there something already changing?

Yeah there’s something in place but it’s more around, centred around as a safety net as opposed to a compulsory thing now. So when I’m at university and, if I’m struggling I can go there and they’ll, there will be someone there to talk to me.

And how do you feel about the change?

I’m looking forward to the change in lifestyle by going to university. And having a different life and knowing different people. But I don’t, am sort of feeling a bit of anticipation about the actual services because the CAMHS psychiatrist I’ve had has been so good so, it’s going to be very hard to find someone to live up to her standard.

And do you plan to apply to the university here or somewhere else?

I have done, but it’s mainly a backup choice. I’m hopefully going to do history. We’ve talked to University about back up support and things like that.

Really. Okay.

And they are very supportive about it.

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People often found social life and meeting new people much easier at university than before. Many felt that people were more “mature” and “accepting” and they could find people they clicked with. 

For more see ‘Social life and public places’ and ‘Friends and Relationships’.

Parents and family

The young people we talked with often lived at home with their families. Being diagnosed or treated for an eating disorder often had a major...