“You can be extremely ill and you can come through it and it can be fine. Because if I can do it, really anybody can do it.” -Steph
Most of the young people we spoke with considered themselves to be recovered or ‘on the road to recovery’. Getting better was often a slow process and not “a straight line”; it could involve relapses. For some people, recovery meant being “completely recovered” in body and mind. For others recovery was about learning to control thoughts and behaviours associated with an eating disorder in a way that didn’t limit their lives.
Why get better?
“The best thing to do if you want to get better is to admit that you’re ill.” -Eva
Often people with an eating disorder don’t want to get better or didn’t know how. People didn’t always feel they were ill. Over months or years, people had developed thoughts and behaviours which had become very important to their lives and who they were and letting go was described as “scary”. . . Not feeling ‘ready’ to get better could mean being treated for a long time without success. Often people described the decision to want to get better as sudden; Felicity had “a light bulb moment”, Hannah Z said, “Something switched,” in her mind and Steph “woke up one morning” and decided to eat some breakfast.
Laura is 20 and studying to be a teacher. She is single and lives in halls of residence. White British.
Yeah it is really hard. Because when you’re totally consumed you feel like getting better would make things worse and maybe at the start of recovery it will feel scary and completely out of control and like it’s a lot safer to stay eating disordered and it does feel, yeah you do feel safer to start off with when things are changing, but as the changes kind of are put in place and you get used to them and you kind of make the first few steps, it does get easier. ‘Cos I know when you first start recovery it’s very hard because you have to completely change everything that is your normality. And you have to kind of relearn what is good and kind of normal in healthy terms rather than normal in your kind of world.
And although it’s horrible and scary in the short term, in the long term it’s a lot better. And it opens up more doors to you than staying eating disordered and staying kind of ill.
The key to recovery was finding a reason to want to get better. When people realised they weren’t “getting anything” from the eating disorder anymore, or how much of their lives was taken over, they could feel able to start getting better.
Sometimes a health scare, or just gradually realising the long term health damages could help people want to get better. Annabelle described how she took her health for granted without realising the possible harm an eating disorder could cause. Some women wanted to get better because they wanted to have children in future and were worried that their eating disorder could damage their ability to get pregnant. People also said they didn’t want to pass on their unhealthy attitude to food to their children in the future.
Annabelle is 22 and a Maths student at university. She is single and lives in a shared apartment. White British.
And you said you had that sort of the health scare and that was a big factor?
Yeah. I think it just really, it brought me, I don’t know; back down to earth or something. Like it made me realise that your health is just so important, you know it really is your wealth and I think previously I’d kind of just taken it for granted, or not cared, I thought it just doesn’t matter. But it really made me think, you know, it’s, I, anything’s worth, I, I’d go to any lengths just to improve my health. Yeah.
And you were told that you have to also start putting on weight so that your fertility won’t be affected?
Oh that was a huge factor. Because yeah obviously I haven’t had any periods for years, and my gynaecologist was just like, she did a blood test and she said, your hormones are just like really low. Like indicating you’re going through the menopause. And I was like, “Oh my gosh, this is really scary.” Because that, above all in life, it sounds really strange, but my like goal above career, above everything, I wanna have children. And I guess it just made me think, you know, I have to, I have to have children, I have to do this. And I have to put on the weight. If that’s what I have to do, I have to do it.
For some, the decision to get better was made when seeing the effect of their condition on others. Chloe wanted to get better when she realised how much it had upset her family. David said that the compliments about weight loss stopped and his mum and friends started telling him how ill and “gaunt” he looked, at that point he realised he’d “gone too far”. For Charlotte, a concern voiced by her teacher, an outsider, helped her realise she needed help.
Sometimes people had simply had enough of living with an eating disorder. Laura described her life as “a mess” and that “something had to change”. Steph said she had “nothing left in life”. Some people had become so ill that they thought they wouldn’t survive. Nikki got to 21, and thought about her life. She said she made “the choice to live”. Rachel describes the decision to recover as a choice between life and anorexia nervosa.
Very often people gradually realised that their eating disorder was “incompatible with life”. Physical symptoms, exhaustion, the overwhelming and time-consuming nature of eating disorder behaviour was preventing them from achieving things in life; schooling, getting to a university, getting a job, having friends. People saw how their friends were moving on in life, finishing school and getting a degree while they had “nothing to show for life”. Being accepted to a top university gave Elene a sense of worth and for the first time she had “something to lose” to bulimia. People often described an eating disorder as something that they could be ‘good at’ and which gave them self-worth. Once they wanted to do other things in life, the eating disorder could get in the way. Fiona-Grace said she wanted to “achieve things unrelated to anorexia”.
Elizabeth is 20 and a second year language student at University. She is single and lives in halls of residence. White British.
To be honest like a lot of the time it’s just been I have to eat because I need the strength to do this. Like for example when I got made the deputy editor of the paper I had to like often do quite late nights on a Tuesday, a Monday and a Tuesday to get the paper done, for the deadline. And I just had to take like; I’d have to eat because I just got to the point where I just couldn’t concentrate anymore on like copy edit. Say I had to like sub-edit a, some news copy for somebody, I just had to eat because I just wouldn’t be doing my job properly anymore. So that was like the realisation that if I don’t eat, other people will think badly of my ability to do the job. And I just don’t want that. Like I want them to think I’m really good at my job. So like whereas in the past it would have been kind of I want to think that I’m really good at anorexia, now it’s more like important that there are other things in my life that I’m really good at. So that’s kind of that realisation and so I realise that I have to stop and eat.
Realising that other people, like I always thought that other people just don’t eat, like they just don’t make time for food. Other people just don’t eat whereas actually realising that people do say, “I’m gonna stop for lunch,” is quite handy.
Realising that being “skinny” didn’t make people happy could also help in making the decision to try to get better. Sometimes people realised this through therapy. Eva felt for years felt that anorexia was her “best friend” and that it made her feel good about herself. She described it as a ‘mental trick’ which made her feel that she was never good enough.
Sometimes a change of environment made all the difference. For example, when bullying in school or a difficult home life had triggered the eating disorder, simply getting out of that environment could help. Georgia said that once she moved to university she simply didn’t have as much time to think about food.
Katie is 21 and works as a research assistant. She is single and lives in a shared house. White British.
I think going to University broke a lot of my habits and, although I probably developed new ones and, you know, routines that I’d gotten into and I suppose that probably helped in a way, you know, because you can quite, I mean, because it was a different environment as well. It was an environment what wasn’t associated with eating disorder, because it was like I hadn’t had one and that. You know, it hadn’t started in that environment. And also because a lot of the, just seeing how, because in our family you don’t, it had always been kind of quite focused on, well not on losing weight but, you know, being healthy stuff and my mum worrying about her blood pressure because, you know, so being careful about that and stuff. Whereas going to, and I hadn’t had a brother or anything so going to University and seeing how boys ate, and how much, how much, you know, other people ate and drank and still looked, you know, normal size and, and shape and, and stuff.
So, I mean, I think that helped and like now where I live, I live with three boys and they, right, yeah, just see how much they eat, put away [laughs] I think it is quite, quite helpful just to see that and even like now when I go back to my house I find it harder than I do here because just because it’s the environment in which it all took place. And like as I was saying my sister’s trying to lose weight and stuff.
How to get better?
Where the decision to want to get better could be very sudden, the process of recovery was often slow and gradual. It was common to experience relapses. Rob believes that as anorexia nervosa took years to develop it would also take him years to get better. People said slow recovery was important so that they could feel in control of it and not “freak out” by weight gain.
People often had a lot of support with recovery from family, hospital care, talking therapy or doctors. However some managed their recovery without any help. Maria refused any professional help and said that it was “a ginormous risk doing it alone” despite her having recovered. She wouldn’t recommend it to others.
Maria is 18 and a Sixth Form student. She lives at home with her parents. White British.
So yeah, I remember that day I remember sort of thinking, “So okay, right, fine I can get better then. I’ll…” and so I was still thinking of it in terms of weight, I wasn’t thinking of it in terms of anything else. So I started to up my food intake and all that kind of thing, and then I saw a dietician at the hospital regularly. And from then on I did get better physically because I became almost, I became almost as obsessed with gaining weight as I did with losing it. And with reaching the weight that I should be as I did with losing it. So it was, for everyone else it was, it was brilliant, “Great she’s better. And she’s putting weight on, that’s the end of the story.”
So I did get better, and I put on weight really quickly because obviously you’re very aware with having an eating disorder you’re aware of what’s your, what’s your, you’re aware of what’s going to make you gain or lose. So as long as, I could eat any amount of things as long as I decided that I could, and as long as I was controlling that I could. So I’d make, the dietician gave me a meal plan and I thought I want to gain weight fast enough so that I can stop gaining it, and so I’ll just double that, and I, I just had, I had loads and I gained the weight I needed to and I did admit that I sort of felt, felt better and felt healthy again, and looked better and that. But at the end of it I expected that when I reach this goal weight that that would be it, and everything would fall into place. So I was, the reason I was working so hard for that was because I thought that was going to be it at the end.
But it was better because I could be at school, I could be with my friends, and I was sort of normal again. But it, it wasn’t entirely better because I got there and thought, “So I’ve lost the sort of anorexia sort of friend if you like, and I’ve lost everything that I wanted to do and could do, and was good at, and that was part of me,” and so you feel so different, I was no longer the person I used to be before the eating disorder, I’m no longer the person I was with it, for a while I’ve been able to sort of postpone all these feelings, because I’d been focussing on gaining it, and that’s, that was my thing. Now what have I got? I’m not who I was before, I’m not who I was now, I’m just this person that I don’t know, and I’ve got to kind of get to re-know myself because obviously in the meantime, had none of this happened I’d have been going through teenage years, and growing, developing an identity, doing all these things with friends, but I thought well I’ve lost all these and I don’t know who I am anymore.
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Age at diagnosis:
Ewan is 18 and doing his A-levels. He lives at home with his parents. White British.
And then you came up with this different method, trying this contract thing. So how, who came up with it, did your Mum come across that ‘cos she did research or …?
My Mum came up, came upon it, a similar thing on this American website it was their version of Beat, I can’t remember what it’s called now.
And she thought she’d, she’d discuss it with my psychiatrist and we talked about it and we did try it but it didn’t work at first because even though we were all, though we’d agreed to trust each other, my Mum still had quite a lot of angst over what I’d done in the past so she found it very hard to trust me. And then one evening we had an argument but this time my Dad kind of saw sense with me and realised that I could be trusted. And that, it was after then that it started to change properly.
So it required mutual trust to work? So you talked about the challenges, how did it like work just in practice?
At the end of each week my Mum would go through the week with a piece of paper and we’d put down tallies for the challenges that I’d done,
And I would be honest and tell her what I’d found challenging during that week. And it pretty much, you could tell by the honesty because otherwise I’d get to the next CAMHS session and lose weight as opposed to put on weight. And it did go up and down the weigh, but it was going up and down as opposed to down. So that’s how we dealt with the trust, and my Mum finally agreed that I wasn’t lying to her.
And I think as I did things as a challenge more and more they became less and less of a challenge until they didn’t become a challenge at all. And it’s still going on that contract. But now it’s down to like very, very small things that I find challenging now. And it’s mainly challenges like used to be having certain foods, but now it’s more doing certain things like going out with my friends, and making an effort to go out with friends and stuff.
And what were the first challenges like?
They were hard to do but I always knew that I was getting something out of it, and it was probably going to make me better as well. And it was more an attitude of I’ll give it a shot rather than I can’t, I’m not doing that.
So was it mainly about eating a certain amount or certain types of foods? Was it those sort of challenges?
Yeah it was sort of, types of food where you’ve eaten it, how, who you’ve eaten it with. Cos going out for a meal was a big challenge. Some challenges were worth more like staying the full day at school would have been like 2 points as opposed to 1 point which was half a day. And no points for not going at all.
And yeah it was social things, food things and exercise related things like if I said that I had some weights today but I didn’t do as many as I usually do ‘cos I was actually tired then I’d get a point for being honest that I didn’t do all my weights ‘cos I was tired.
Recovery involved taking "risks". For many, “trying to forget” or unlearn their old thought patterns was the biggest challenge. Jasmin said she had to learn “how to not have an eating disorder”. Lauren compared recovery to learning how to drive a car; over time you don’t have to think about eating healthily anymore because it becomes automatic.
In terms of eating, often small changes worked better; increasing a food item at a time (with anorexia nervosa) or halving portion sizes (with bingeing/overeating).
Lauren is 23 and a part time youth worker. She is engaged and lives with her parents. White Scottish.
I remember one time I was saying to a group of parents that, you might feel like you’re aiding the illness at first by giving in to what they want to eat but until they can come to terms with the food and to come to accept it, the fact that they’re just eating those things is important. So you might feel like they have to have a small portion and they have to have that but if you don’t give them that they might end up not eating at all ‘cos they’ll panic. So it’s like at first you’ve got to stick to just the portion so if like the first week it is just such like a half slice of bread with their lunch then that’s all they increase. Everything else stays the same because they have to get used to that half slice of bread and once they’ve conquered that they can move on to something else. So at the start it is, until people really come to accept their illness and come to accept the treatment, in a way, you do feel like you’re aiding the illness along but it’s not, it’s just that that’s what you have to do at, at the start to kind of get your mind into the right place first.
I should think a lot of people forget that it’s, you know, it’s a mental illness and the changes have to happen here first before they can happen anywhere else.
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Age at diagnosis:
Katherine is 19 and a first-year-law student. She lives in university halls of residence. White British.
I genuinely don’t really know what happened. I think I just probably because we’ve in a new environment it was, it was a holiday home in an area that we’d been going to for years, my parents, my dad had gone there you know as a child for years it’s been a bit of a family tradition really.
So we were kind of out the normal humdrum life at home experience, everyday routine, and I think it was probably a little kind of an element of that, so there was the freedom for me to try new things if I wanted to. I knew the opportunity was there. And other than that there really there’s nothing, there’s definitely no conscious thing that I can remember thinking, and being like, “I’m going to change,” you know. Just, you literally just woke up one morning and was like, “I think I’ll try,” I think it was like a packet of prawn cocktail flavoured crisps or something, or if I had a crisp which like sounds ridiculous but like at the time was just a breakthrough, you know, kind of my parents sat there in sort of stunned silence after I did it. And you know it was a big thing, but I can’t remember anything telling me to do it.
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Age at diagnosis:
Sara is 20. She works part time and is about to start University. She is in a relationship and lives in a shared house. White Scottish.
A few of my teachers and my CPN came back to visit me in hospital and they bought fruit so I tried like lychees for the first time which was quite good thing, I mean I know it's only water but I was using my mouth to [laughs] to eat it which was good. But then I remember my CPN coming in and bringing in grapes and I would fiddle with the grape and then I'd kind of hide it under my duvet, I wouldn't eat it that way. So I think food was brought round to me every day and to see whether I would eat any of it.
Probably be like a little mouthful and then and then that's it. I’m not sure how it changed, I was, I think at the time in the Young Persons’ Unit when I came off the, the tube, it was kind of used as a backup so I would have to eat and they would sit with me for however long it took for me to eat a decent amount of food. So there was always that one on one support up until the point where I felt comfortable eating in a bigger environment.
Some said that during their illness they had become experts in calorie counting or weight loss and now they could use the knowledge to put weight on. For many, developing new daily eating routines helped to replace the old habits. Many followed a meal plan and set themselves targets. Making progress contributed to a positive cycle; achieving even small targets was rewarding and encouraged people to carry on.
“It was very small steps each day but they’ve just added up to a massive journey in the end.” -Steph
Zoe is a 23-year-old PhD student. She is single and lives in a shared house. White British.
I can remember I kept being asked to drink Ensure drinks, which are like high calorie drinks. And there was one evening where I again hadn’t eaten anything and I think I probably hadn’t drunk much either and I was sat down with one of the medical doctors and he sort of said, “Look. You’re a sixteen-year-old girl, you’ve got a life ahead of you. You need to do this.” And I was still, I was in tears. I was not gonna drink this Ensure drink and he actually, got the cup and sort of forced me to drink it or some of it and I was, after that, I was very I was distraught. I was I felt totally out of control. I felt, you know, it was just. I felt, oh, it was horrible and I know, subsequently, I didn’t realise this ‘til sometime later on, that because what this is not strictly what you should do apparently, they’d have to call my they had to call my parents in and tell them what had happened that I’d, basically, been forced to drink this thing. And my parents were, apparently, just like, “That’s fine. That’s fine, you know. If that’s what it takes, that’s what it takes” [laughs]. And strangely enough, after that, I mean nothing, it wasn’t easy, but I was able to start having a tiny amount of food at each mealtime.
So just like I remember like the next morning I was asked to have half a Weetabix with a bit of milk and I was able to, you know, it took about three hours probably but I was able to eat it. And it built on from there until it got to the point where I was eating what everyone else was eating, meals, snacks. And so, in a way, that was kind of good that happened. But, at the time, obviously, it felt awful.
So did something sort of change in your head?
Well, I think it felt, it was, yeah, I mean I think it felt it was okay if you do it nothing, you’re not suddenly going to feel out of control. It’s, yeah.
It just felt like it had been so long and I’d not eaten anything and it just, I, in my mind, in my disordered mind, I thought, “As soon as I start eating I’m going to worry that I’m not gonna be able to stop or I’m gonna put on lots of weight very quickly.” And I realised, actually, having this small amount of Ensure drink made no difference. I didn’t, you know, I felt no different. I didn’t feel better. I didn’t feel worse. It just, it was fine and I was still, you know, all my friends were very good and coming in and seeing me and I still had this incentive, this huge incentive, to get better because I wanted a normal life. So I was able to gradually start increasing my intake.
When people realised that getting better opened up new opportunities, recovery started to become more rewarding than being ill. It was sometimes difficult to notice progress at the time, it was only when people looked back that they found it “exhilarating” to see how far they’d come.
Rob is 17 and a student at a music college. He is single and lives at home. White British.
I mean to be to be brutally honest with you, I don’t think, I couldn’t have I couldn’t have seen myself surviving it really ‘cos I couldn’t actually see, I couldn’t project myself forward and see a place, it, you know, past it. It was this, it just blocks off everything. There’s no future.
It grounds you in the present so I couldn’t I couldn’t really foresee a future where I’d got to this point. I mean I’ve achieved things and can now do things that I would never have considered, you know, a couple of years back that I would be able to do. Which is in turn inspiring that I would be able to get to, you know, this place, hopefully, where I can look back and say, you know, “Back then I wouldn’t have imagined that I would be able to do this.”
Gaining some weight helped people to think more clearly, providing a further reason to continue recovering. Chloe described how “having some sugar in the brain” helped her think more clearly and Felicity said that after initial weight gain her “cognitions became clearer” and she was more able to think about, and take steps towards, recovery.
What does 'recovery' mean?
“Recovery is beginning to enjoy being you a bit more.” -Nikki
“There might always be a little bit of it there but I think I’ll be strong enough to tell it to go away.” -Eva
Some people believed in “complete recovery” but some thought an eating disorder would always be a part of them. For them recovery meant learning to control their thoughts and behaviours. Nikki compared eating disorders to addictions in the sense that it “never leaves you”. Felicity commented that, although she is currently recovered, she felt that she would always be at a higher risk.
Some still struggled to eat certain foods or had to stick to particular meal times and routines but said that overall they felt more comfortable about eating, exercise and weight. Elene still had issues and bad days but said that she now “wouldn’t act on it”. Hannah O said that it was nice to not have to do exercise, but to have “the option to”. Even after a long time in recovery, a lot of people said they still struggled with body issues and self-confidence. (For more see ‘The body and body-image’).
Emily is 21 and a University student. She is single and lives in halls of residence.
I don’t feel like, I sometimes still worry about weight, but I don’t feel like constantly. Like I eat normally, and I can eat normally and not make myself sick. Like it’s not, it’s not that much of a, I don’t feel caught in it anymore. I don’t feel like every single moment of my life is kind of geared towards trying to be skinnier and be a different person.
So I’m happy. I’ve kind of managed to make, make the connect... like I still struggle with like confidence in like feeling fatter than everyone else and things like that but I’ve managed to make the connection between both that being skinny won’t make me happy and that like having this eating disorder won’t make me skinny. And I don’t feel like I have to, yeah I don’t feel like I have to make myself sick in order to be skinny. And I don’t feel like I have to make myself sick in order to push people away anymore.
Like I still struggle with an eating disorder but it’s nowhere near the trap that I was caught in and I do think that it can, and like probably will carry on getting better and just generally about life I feel a lot better now they’ve… like, through helping, me trying to get help for my eating disorder I was diagnosed with depression and that’s, like I feel quite lucky that that’s happened and like finding that there was a link between them and it’s an illness and it’s not my fault, and things like that. It really, yeah it helped me, it’s not just something that’s wrong with me and my problem, and for me being weak and silly and you know I struggle with these things, so, it’s good.
There eventually came a point when people believed they could recover. Eva always used to think “I’ll be like this forever” and to Emily recovery always seemed like an “insurmountable mountain”. People were often so taken over by the eating disorder in their everyday life that they weren’t able to look forward to the future. In hindsight, it was difficult to see what they had been so afraid of and why letting go of the eating disorder had been so hard. People who were recovered described their past as “a different life” and that they were like “a different person”. Jasmin said she was “happiest I’ve ever been” and Annabelle said she would “never go back for any amount of money”. Lauren said she had no regrets about her past because her experiences “moulded” her life into what it is now;
“My life’s just great. When I look back and think two years ago when my life was just horrible, it’s such a difference and I just feel so alive and I’m just so busy and doing so many wonderful things and so many opportunities are happening…I love every minute of it. I thank God for every minute of it because there was a time when I thought it was gonna end and that I couldn’t get through. There’s bad days but everybody has a bad day but it’s now realising the difference between just having a normal bad day and a sort of an anorexic bad day.” -Lauren