Eating disorders (young people)

(For more see ‘Parents & Family’).

Concerns about seeking help

Talking to someone else about the possibility that something might be wrong could be very difficult. Often people didn’t try to get help for a long time - this could be several months or even years after developing an eating disorder. They said they didn’t want to be “a burden” or “waste” a GP’s time. They described not wanting to bring attention to themselves, feeling that they weren’t ‘thin’ enough to have a problem or not feeling like they deserved  medical attention or treatment. Some simply didn’t know who to talk to. People had concerns about confidentiality; if they had kept their eating disorder behaviours a secret from everyone, they worried whether they could talk to a teacher or doctor without their parents finding out. Bad experiences in the past, such as not being able to trust a doctor, could put them off too.

Charlotte kept cancelling appointments with the school counsellor because she thought she’d just...

Charlotte kept cancelling appointments with the school counsellor because she thought she’d just...

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Age at interview: 22

Sex: Female

Age at diagnosis: 16

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I was eating a lot less at home and I was storing food in my wardrobe, and I’d put it all in a bin liner, and then it made me really satisfied at the end of the week to kind of feel how heavy the bin liner was and think I hadn’t eaten all of that. And my Mum was getting really concerned, and so she took me to see my GP and told them that I hadn’t been eating. 

 

At the kind of the same time I had, I went to see the college counsellor, I’d actually made about four appointments with him but I kept chickening out, ‘cos I didn’t think it, like the situation was serious enough for me to warrant counselling and I thought he would just kind of laugh at me and turn me away.

 

And so going back to my GP, I went to see her, and she referred me to the local eating disorder service. I also told her that, about the other issues that I was having, aside from food, like with the self-harming I was beginning to feel suicidal as well. But she thought it would be wise to go to the eating disorder service as the kind of initial point of contact. So it took about, it took a few months actually, quite a few, it took about four months to, for the appointment to actually come around, which was just awful waiting for that point, ‘cos in that time I thought, I felt really embarrassed about having to go to an eating disorders unit, and I thought that I had to lose a lot more weight or else I’d go there and they would just laugh at me. 

 

David didn't seek help because he didn’t want to be "a burden" to other people.

David didn't seek help because he didn’t want to be "a burden" to other people.

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Age at interview: 22

Sex: Male

Age at diagnosis: 19

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I did speak to my doctor about it and they just referred, they just gave me a number I can’t even remember the company off by heart, the line, just to call and talk to if I felt I had any issues there. I don’t think I ever really have actually taken them up on that because I’m, I’m just one of them people that I don’t I mean I hate bothering other people with my problems and issues. I’m happy to sit there and listen to other people’s issues all the time, and help people wherever I can but I hate feeling like I’m a burden on anyone else. And that was always a massive factor to me when seeking help, even when I initially went out to seek help, about the eating disorder or what I was doing to myself, I didn’t really classify it as that. I then didn’t want to become a burden, I didn’t wanna be referred. I didn’t want that to happen. I don’t like that and I think that’s very much me as a person. I don’t like to be, feel like I’m burdening anyone or causing an issue. So the moods, you know, that’s the same thing. I never went further because I didn’t wanna feel like that. But there definitely are mood swings and it’s just linked to how good I feel about myself. Which is then in turn linked to my weight.

Often people had mixed thoughts about seeking help; while they wanted the help, they were so deeply involved with the eating disorder that they were, in fact, scared to let go of it. Some people said they didn’t want to admit being ill or that they didn’t actually want to get better.

It is important to remember that despite how hard it was to accept that help was needed and decide to get help, all of the people we spoke to were glad that they did receive help. It was often a positive turning point.

Why get help for an eating disorder?

People decided to see a professional for a number of reasons: they had become concerned about physical symptoms (such as weight loss, problems with circulation, pains, loss of sensation, insomnia or loss of periods), or because they were increasingly low and depressed. Some said they had simply had enough of the eating disorder taking over their lives and wanted help. Eva describes herself after she “went over the line”:

“I wasn’t myself anymore, I wasn’t comfortable in social situations. I was really quiet and withdrawn. I didn’t like being around people anymore and I felt like crying all the time.” -Eva

After years of keeping bulimia a secret from everyone, Emily started to think about seeking help....

After years of keeping bulimia a secret from everyone, Emily started to think about seeking help....

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Age at interview: 21

Sex: Female

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I think I’d seen kind of some of my friends and people around me struggling with like, they had different issues that they struggled with like teenage issues, things, and they kind of told us about it and seeing them confide in us, like, it, I do have close friends but I’d never really kind of fully confided in someone and it was just kind of a new thing to me like seeing someone say, “I’m really, really struggling with this, just,” like holding their hands up and being like, “I need some help.” That was like a really big thing to me and just seeing that it could change their lives. I kind of I just remember hearing them say that and thinking, “What, what if I did that? What if,” I’d never even considered getting help before then or considered that I could get better or anything. 

 

I kind of started entertaining the idea like, what, what if I said to someone oh, I’m really struggling with this, and maybe I could get better. Or maybe I could get to a stage where I don’t constantly worry about my weight, and I don’t constantly look at other people and wish I was like them. Or I don’t constantly, because it’s not a pleasant thing to have, like it’s not a nice thing to go through and to have always there. 

 

Like I kind of thought well that would be, yeah that would strange maybe, then I’d like, I’d kind of get it, kind of like mulled it over in the back of my mind, well not really consciously and I’d kind of known this teacher, like got on well with her and like known that she’d be really good kind of pastorally helping people, so she was always like made it very clear that anything we had we could go to her with. And I kind of thought well I might as well, it’s not like me telling this, I’ve got anything to lose by me telling this teacher. It’s not like, she’s not like a parent or anything, she can’t like kick me out of the house or fall out with me. Like anything like that, there’s nothing to lose so why don’t I just grit my teeth, and you know go in there and talk about it and see if something positive does come from it. Great. If not then well that’s just, that’s that yeah I just kind of. 

 

It was like, although I really, part of me really didn’t, never wanted to talk about them things, even that day when I went to her, knowing that I was going to for the first time talk about it, and it was a good feeling, it was like something was changing and I was finally kind of, it was quite exciting knowing that like this massive issue was suddenly, like it was like life changing things were about to happen and I was doing it. It was me; it was like got it in my own hands and said, “No, I’m going to do something about this”. It was quite an empowering feeling. 

People also said they wanted to seek help for the sake of loved ones because they knew their parents or friends were upset and felt guilty about it. Felicity said she wasn’t concerned about what she was doing to herself but more about its impact on people around her. Katie remembered being on holiday when she saw her dad crying and how it made her feel:

“There were times on that holiday when my dad had been crying and stuff and my dad never cries. Crying because they were worried about me and so that was hard and made me feel guilty.” Katie

People also just wanted some reassurance or went along to please their parents.

First contact with health professionals

The first time people chose to talk to someone other than their friends or family they went to see their family doctor, or another GP, a school nurse/counsellor, a private counsellor, a psychologist or a teacher. Often it was a worried parent who made the appointment and some people said they felt “forced” to go along. While some preferred to go alone to the appointment, others preferred to bring someone with them for support, often a friend.

People’s experiences of their first contact with a professional were extremely varied. They described positive outcomes with professionals who took them seriously and were experienced in dealing with the complexity of eating disorders without the sole focus being on their weight. They were given good and detailed information about eating disorders support and referred to other services. Just talking to a professional could be a big relief. Emily felt excited after she first saw a GP and thought it was “empowering”. Charlotte said talking to a GP "lifted a weight off her shoulders".

Lauren first saw a GP who specialised in eating disorders. She felt completely understood and...

Lauren first saw a GP who specialised in eating disorders. She felt completely understood and...

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Age at interview: 23

Sex: Female

Age at diagnosis: 20

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I first of all made an appointment with the nurse and ‘cos I had no idea what to do or anything, I just spoke to the nurse and kind of said to her what I thought my problem was and that I’d been losing weight and that I kind of had read this book and thought that that was maybe what. I was doing to myself and then she made another appointment for me to see a specialist GP who was kind of specialised in that. And then I remember meeting her and she was really lovely and she, so helpful as well, completely understood and didn’t make me feel like I was wasting time or anything and got me referred straightaway, which was fantastic.

Emily confided in a teacher that she’d been bingeing and purging for 5 years. After years of not...

Emily confided in a teacher that she’d been bingeing and purging for 5 years. After years of not...

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Age at interview: 21

Sex: Female

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So I went to a teacher at school who like I kind of knew I could trust and, like she was youngish and like fairly easy to relate to, and she was really, really good like, because I was 17, she really wanted me to tell my parents, but because I was 17 like if you’re, I think it’s if you’re less than 16 she would have been able to, but because I was 17 like she didn’t have, like I was too old for her to break the confidentiality or something. 

 

So like she told me to, but I still didn’t. I couldn’t bring myself to tell my parents, but she made me tell my closest friend at school. Like I was, so the day like I went to see the teacher and like talked about it for the first time ever, even though it had been part of my daily life for five six years, like I, just kind of sat there and saying it out loud for the first time ever, when it was obviously a big part of me. It was so strange, and, talked to her about it and about how I feel about it, and like the first thing she made me do, she made me get my best friend at the time to like arrange to meet both her and my best friend the next day. And so we could both tell my best friend together. And I was like, “I don’t, I can’t do it Miss, I can’t do it. Honestly” and she was like, “Please just trust me, like this will make you, I can’t make you tell your parents, but and this honestly it will make a difference.” I was like, “I just can’t have anyone knowing.”

 

But, she was like, she got me and my best friend there the next day and like my best friend was obviously really concerned and wondering what was going on, and I was like , and the teacher said to me, “Do you want to, do you want to tell her?” And, and I was like, “I can’t do it. I can’t, I can’t,” and I was like nearly in tears and so my teacher said, “Well basically Emily been having trouble with this. Like making herself sick after eating and she doesn’t want to tell you because she doesn’t want to worry you,” but blah blah blah, and like kind of broke it to my friend that way.

 

And like that, that night we went back and like walked and my friend was like, “Oh, I’m just, I can’t believe I didn’t know. And like of course I don’t think any less of you.” That was one thing, I was like, “I don’t want you to think I’m,” because I know it’s, I know it’s like something that I shouldn’t do. It’s obviously from, but my friend was just like, “I don’t think any less of you, I don’t, I’m just worried about you, and I just want to help.” 

 

And it was surprising when I spoke to her just how easy it was to just talk about it as though it was an everyday something else, and like ever since then, for the past like four years like, she’s been there every step of the way, and it’s just become another thing that we can talk about quite happily. I wouldn’t want to keep anything from her about it, and like that was the first a step. That was definitely like the best thing that the teacher could have done, it really, really helped me.

Some people felt there was lack of understanding and knowledge of eating disorders among the professionals. They felt there was too much focus on the way they looked, for example their weight or BMI (Body Mass Index), and not enough on their mental wellbeing. Some young women said they were told that they were just naturally “skinny” or it was “a teenage phase” or that “all girls diet”. Some left the appointment with no other advice or action plan than to just start eating more. Elizabeth remembers the hospital telling her parents just “to go home and put some dinner on the table”.

Katherine and her parents weren’t impressed by their GP. Katherine felt her problems were...

Katherine and her parents weren’t impressed by their GP. Katherine felt her problems were...

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Age at interview: 19

Sex: Female

Age at diagnosis: 11

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I think I was about 12. I think it had been going on for about 6 months and so my parents were kind of finally like, “Okay, this is really weird. We’re going to go and see whether there’s kind of like, like a gut problem first, and you know, and then take it from there.”

 

So I can remember going to the doctor, I can’t remember the, I can’t remember the referral that we had to the main hospital when we were looking to see whether it was actually like a biological problem. I don’t remember that, but I can remember then going back to them and being like, “The hospital has said there is nothing wrong with her, like in, you know internally. It’s something else.” 

 

And I can remember that doctor’s appointment being with the local GP. And him quizzing me on what I’d, like my daily kind of menu, what I was having. And he was quite disparaging about it, he wasn’t, he’s sort of known for not being a particularly kind of personable doctor. And so I hadn’t expected a lot of sympathy. But I can remember coming out afterwards, I’d felt vaguely humiliated about the whole thing, it wasn’t so much that it, it wasn’t portrayed to me as kind of a potential mental illness, it was more like, “Oh you stupid young girl,” kind of, you know, “Just buck up and eat a cream bun,” kind of thing. And then he referred us on then to the clinic that I ultimately went to see.

 

Mm. So it wasn’t a great experience at the GP’s?

 

No. I can remember my mum as well afterwards saying that she hadn’t thought that he dealt with it well. When he referred us.

 

Laura’s first experiences with a GP weren’t encouraging because her GP lacked understanding of...

Laura’s first experiences with a GP weren’t encouraging because her GP lacked understanding of...

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Age at interview: 18

Sex: Female

Age at diagnosis: 18

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So I went to speak to one of my tutors who I was quite close to and she kind of, it took a few months I think for her to actually get me to go to the GP, but she kept encouraging me to go. And I think it was just, no I think it was about three or four months after I first went to my tutor that I actually finally went to the GP. But then the first few times weren’t any good anyway so.

 

Why do you think that? Do you think they lacked understanding, awareness, or…?

 

Yeah. I think they just didn’t get it. They just kind of thought, I don’t think they thought it was as bad as it was. I think, but then I think that, and then I blame myself for that because I didn’t go to them when I was at a lower weight, I’d gone to them after I’d put on a bit of weight so I think it didn’t seem as much of a problem because I wasn’t, I might have been a little bit underweight, but I wasn’t like a majorly so it didn’t seem like it was a big problem. So yeah, but I think it was a lack of understanding.

 

And was it a big thing for you to do to go for the first couple of times?

 

Yeah.

 

Do you remember how you felt about it?

 

Terrified. I was really scared to go to my GP because I think partly because I didn’t, part of me still didn’t want to admit it and I didn’t want to get better, but partly because I didn’t want to go and then be made, be patronised because it was such a big deal for me to be going. I didn’t want to feel like it was a waste of time. As much as I did want to get better, I didn’t want to go and then end up feeling even worse.

 

Anna’s parents and doctors got concerned because her period didn’t start normally. She felt angry...

Anna’s parents and doctors got concerned because her period didn’t start normally. She felt angry...

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Age at interview: 25

Sex: Female

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I was quite shy… and probably scared about growing up so of course that was the main thing that doctors and parents were worried about not developing into puberty and I think that, that’s why in a way it was quite forced medical, you know, going into hospital and that kind of thing. But, and then I remember a bit later when obviously I , a few years later, my periods hadn’t started but when they did, I just remember feeling a huge sense of shame and like they’d won [laughs]. Obviously that’s so bizarre.

 

And… but I remember feeling quite angry that in a way everyone else had had such a lot of, had all their interests in my body and, and not, not wanting that which I think is understandable but to what extent, it’s difficult how to balance that when you’ve got a ten-year-old [laughs] girl and she’s not; but then I know later I’ve dieted to such an extent that my periods had stopped again and just, that’s still a question, you know, for months and... Why do I play with that in my body, why do I play with that kind of aspect of being a woman and what, it’s difficult to know kind of quite how it all links up [laughs].

 

Some people felt that they weren’t taken seriously because they didn’t fit what people expected to see in someone with anorexia. These included men, people who were overweight or those who were both bingeing and purging. Some said being “brushed off” was a relief at the time because they felt it proved that they weren’t actually ill but many others described feeling upset, angry, humiliated and patronised. Those who were reluctant to go to their doctor in the first place said they’d “fobbed off” the doctor because they didn’t want “to be found out”. However others were shocked or surprised to be told they might have an eating disorder as they didn’t feel that they were ‘the type’ to have them. 

The GP told Annabelle she was just naturally slim, when she was actually very underweight....

The GP told Annabelle she was just naturally slim, when she was actually very underweight....

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Age at interview: 22

Sex: Female

Age at diagnosis: 14

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Tell me a bit more about the first time you went to the GP?

 

Okay the first time I went to the GP again it was quite an old fashioned GP I think he was quite old in his ways, and he was a bit arrogant. And my Mum said, “Oh she’s very thin. She’s not eating.” And he said, “Well go on then, let’s weigh her.” 

 

So he did my weight and height, and my BMI came out as very underweight. It was, it was really quite underweight, but he said, he said to me, “Annabelle, do you think you’ve got an eating disorder?” And I said, “No.” And he said, “Well I don’t think she’s got an eating disorder.” He said, “There are lots of people that just stay at this weight for their whole life, and your daughter must be one of those people. She’s just a very petite girl. She’s very slim for her age, very petite. And she might fill out when she’s older.” And he said, “But, but I think you’re just,” he told my Mum that she was being over, like over worrying and over protective, and that she should just leave me alone. And of course I agreed at the time, I was like, “Great.” I was like, “I told you Mum, overreacting.”

 

Sometimes finding a good doctor took time and determination. Those who had a more negative first experience went back to see the GP again a few times, or made an appointment with another GP. 

Read more about the next steps and treatment options in ‘Staying in hospital’, ‘Talking therapies’ and ‘Coping with an eating disorder and self-help’.