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Diabetes type 1 (young people)

Obesity and other eating problems when you have type 1 diabetes

"When you are diabetic everything revolves around food" [Interview 29].

When young people were first diagnosed with type 1 diabetes, some were told they had to accept that they were no longer free to eat exactly when and what they fancied. Some may have been so young that they could accept having all decisions about food and eating made for them. For teenage diabetics the relationship to food can often be more difficult. Teenagers on fixed-dose regimes talked about how they minded having to take snacks between meals to fit in with their insulin routine and were sometimes self-conscious about their enforced healthy diet, which tended to exclude them from the freedom their friends seem to have over what they eat. For the most part young diabetics learn to deal with these difficulties and food does not take centre stage in their lives. But in a few cases young people find that their relationship with food dominates their lives and may develop into medical conditions such as clinical obesity, bulimia and anorexia. On this page, young people talk about their experiences of how their diabetes has been tied up with their eating problems.  

The beginning of eating problems

The young people we talked to said that in childhood they had 'well controlled' diabetes, but now, looking back, they realise the ways in which they felt different from their peers. They were on fixed dose regimes which meant they had to eat snacks at times when no one else did, particularly before PE; they found themselves unable to eat what other children ate at birthday parties, or they felt really upset when an insensitive teacher sent them to the toilet to do their insulin injections. Young women indicated that their eating problems began gradually in their late teenage years but two of them knew that they had issues about eating by the time they were 12 years old. Young women described becoming very self-conscious about their bodies and their weight and said that that was the onset of their eating disorders. They began to focus on losing weight and being thin. Above all they all felt the need to fit in with their peer group. One young woman said that ironically one main factor that contributed to her developing an eating disorder was her newly found sense of freedom when she changed her insulin regimen and started taking fast acting insulin that she could inject according to how much she ate. In hindsight she thinks that she would have benefited from more direct medical supervision at that time but there was very little available (see also 'What makes a good consultation with the care team').

 

Describes how restrictive her insulin routine was and how it became a problem when she reached...

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Age at interview: 27
Sex: Female
Age at diagnosis: 7
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The insulin regime I had when I was younger was more or less two injections a day at certain times. As an example I'd have to have my breakfast at 8 in the morning and I'd have to have my lunch at 1 in the afternoon, have my tea at 5 o'clock, have my snack at half 10, have a snack at half 3, have a snack at half 9 before I went to bed. And that's pretty much what my life consisted of. Obviously no sugary foods. Low-fat, low-calorie, long-term carbohydrates, very healthy things. Which was very very restricting, especially as a child. Luckily my mum had brought us up with a healthy diet anyway. So it wasn't too much of an adjustment. And I was allowed the odd chocolate bar and things if I did a hundred skips. You know, if I did a hundred skips and bring, brought my sugar level down, I was allowed a chocolate bar. So there was ways around it. But there was one particular time when I, the class went swimming, and obviously for exercise you had to boost your sugar levels up. And my teacher couldn't open my sugar box. It was stuck. So I wasn't allowed to go swimming. And I absolutely loved swimming. So I had to sit out on the side of the pool and watch all my friends playing in the pool. Which, it really did devastate me. And obviously I remember that incident because it hit me so much. So that's an example of what I had to do. And another thing that I had to do, which was adjusting my diet. You know, you couldn't just jump in the swimming pool and go swimming. You had to have sugar before you went.

It's probably, definitely the age of, of say 12 or 13, when I was in middle school, getting slightly older, becoming more aware of my figure. And then moving on to high school. And I hadn't really thought about it very much until that point. But obviously when you go to high school and you're going through adolescence, your body's starting to change and develop. You become very aware of it. Especially when there's girls looking at gorgeous pictures of women and saying, 'I want to be like them'. And, and boys are doing the same thing and they're checking you out and criticising people. And like kids do to each other, like teenagers do to each other. But obviously for me there was nothing I could do when girls around me were not eating a lot because they wanted to be thin or slim. I had to eat. And they'd sit and pick at things and I'd have to eat the full meal. With hindsight, this, I think this is, this is probably what caused my develop, eating disorder to develop. Because my life had been so focused around food it was the only thing that I could control. I became depressed because my sugar levels were starting to slip.

Then I actually spoke to my diabetes nurse and I asked her, I said, 'Is there a different insulin regime that I can go on that, that can help me with my new lifestyle as a teenager? With, basically not, so I don't have to eat at set times. So I can go out and eat later on if I want. So if I don't want to eat as much lunch, I don't have to eat as much lunch. I can eat a little bit'. She put me on a new insulin regime that allowed me to be a lot freer with my food and the times of food. And for the first time in years I discovered that I didn't have to have snacks. I could actually reduce the amount of food that I ate. I could eat, as long as I knew the carbohydrates and things, I could more or less eat what I wanted. And I guess it, in an ironic way it was a new sense of freedom. But also it's quite a dangerous thing. 

Because I was becoming so self-aware, I was able to use that to control what went into my mouth. I decided to go on a diet and lose weight.

And it just spiralled. And I almost went anorexic. But with an eating disorder it can go one way or the other. You can, you can end up wasting awa

One clinically obese young man blames his changing eating habits as he began to eat the wrong type of food and not doing any exercise. He said that he has never stopped taking his insulin but added that when he was clinically obese he was taking additional insulin to cope with his extra food. (See more experiences of being overweight or obese)
 

Two years ago he was eighteen stone and said he got to it through eating too much of the wrong...

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Age at interview: 23
Sex: Male
Age at diagnosis: 7
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Oh yeah, when I, before, when I was fat I was eating a couple of pasties, that was it, for tea. But I mean, I can't really remember what I had now. Pretty bad stuff so couldn't be bothered basically. It was that it just got to a point where I eat because I had to eat and it would become a chore, you know what I mean, it was just like you eat, because you have to, you know, because you don't enjoy it. You go out for a meal - I eat my food probably, like, as twice as quick as everyone else just to eat it, it's just the thing you have to do until I got to a point where I couldn't be bothered so it was just like microwave . To be fair, I mean, when I first started I was cooking quite a bit - to be fair I haven't cooked a lot recently because I've been really eating crap. Not like crap right, I've just been eating, you know, easy stuff like sandwiches or whatever. But, it's not as bad as I was because before I was eating loads. 

You were eating the wrong type of food most of the time, or all the time?

Yeah, it was just, well, I just, yeah I mean like pasties are supposed to be the worst, aren't they? And because I was, yeah, I was on, what, 34 units which now seems obscene, because like well I'm only on 6 now, because I was eating crap, because I was fat and when you're fat you get more insulin you need, so it's just like a vicious circle. So, it's just like, yeah, sorting out, sorting out the diet is pretty much it, it's the main thing that helped me out losing weight. Then I lowered the insulin, and then I'm laughing now, so.

You had a weight problem a year ago?

Well, two years ago, yeah, I got one. I lost four and a half stone, I got really fat, that was just through, I think through laziness, like with my girlfriend and that, just sitting around eating [laughs] so, when I, when we broke up, like, after, two years ago, I was really, I was about eighteen stone. So I got really big. 

And how many stones are you now?

Thirteen and a half.

I mean diabetes wasn't the main thing, if I'm honest diabetes is alright, I mean, I don't care. I don't know. I could look after myself better but then I know people who are worse than me, so. I mean, I always do my injections, I've never missed them out, except maybe the ones in the morning if I have a lie-in and I get up and have lunch. But I never miss one out on purpose, you know, I do sometimes, sometimes I do eat a bit more than I should. 

Running high blood sugars to lose weight and how it affects you

Initially some young women started to adjust their insulin dosage to what they were eating and started on a diet to lose weight. They then began binge eating and vomiting and experiencing fluctuations in their blood glucose levels. Several of the young women we talked to said that it did not take them long to figure out that they would 'lose' weight if they started to miss some of their insulin injections but the weight loss was initially mostly water loss. All these teenagers were aware of the damage they were inflicting on themselves but initially thought that it was something they could control; 'I will do it until I reach the weight I want'. But in reality the thoughts that come with an eating disorder are so overpowering - wanting to be thin; insulin will make me fat - that their behaviours were ruled by these thoughts and not by common sense. They remember lying and becoming deceitful in order to hide their eating disorder from parents and medical team.

 

Talks about why she stopped taking her insulin regularly, how she felt as a result of it and the...

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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I knew I'd put on a little bit of weight. I'd only regained what I'd lost because of the untreated diabetes. So it wasn't a like I'd put I'd suddenly started gaining and gaining weight, you know, it was naturally. I wasn't fat, you know, I was just normal. 

But then I remember I worked out some how that if you stop taking your insulin, you'll lose weight very quickly, and you know, it was just' it seems like a brilliant idea at the time and it's like, 'Oh this fine, I can eat what I want and not gain weight'. But unfortunately you can't do that and get away with it. The consequences will catch up you. 

I used to think that when I stopped taking my insulin and I'd lost weight, that made feel really good about myself and I'd be really confident and everything would be fine. And I'd be thinking to myself, 'Oh I'm all right', you know, don't think about it. I'll start taking it again next week. I'll be fine. I can' I'll be fine. But you never can, I never could' that's the thing it it's so strong. 

Sometimes I'd have to take the odd injection maybe once a day or every couple a days, because you, otherwise I'd have just' to keep my body ticking over really. But sometimes I felt really ill with it. I mean I knew what was wrong with me, you know, I was sick from the ketones at home a few times. And then there was times I be out and I'd get really breathless really quickly like in a smallest' like climbing up a flight of stairs would just oh' I could just of collapsed and you know I'd have to sit down and have like a long break just to you know to recover. And I remember feeling my heart beating really fast and it just makes you feel so poorly. And at the time you think to yourself, Why have done this to myself? Why have I let myself get in this state? But then when when you feel better you forget and you know the eating disorder took over again. But yeah it' it does makes you feel really poorly. 

Can't stress how [laughs] you know, once I was' obviously because I couldn't tell mum and dad what was wrong with me, they just I just told them, 'Oh I just feel poorly, I just feel ill. I'm so tired.' They at that point, they knew' they were probably suspicious but they just believed me when I said I felt poorly. I just felt ill. 

And there were times there when I just felt like phoning my mum and saying, Look I've not been taking my insulin and I need help and I want you and I need you to come now and help me', because I felt I was' I was helpless. 

But somehow, I don't how I managed to sort myself out like I'd give myself a little injection of insulin and I'd go and rest for a bit. And then when I woke up I'd felt you know, might've I'd feel a bit better. And I'd just sort of bring myself back to normal from there, gradually. It's' I don't know now, how I coped feeling like that looking back. 

I had, I found numerous ways of leading my parents, never wanted to lead, I was doing my injections. And I found ways of creating false blood test [laughs] results and, my diabetic nurse says she'd never seen anybody go to the extremes I'd gone to, to fool people. And it was shocking. I don't know if I should like even tell you because [laughs]' I don't want to give people ideas [laughs]. But, oh I'd oh, I'm trying to think now, it was a while ago. I'd push, instead of pushing the pen down I'd sort of wind it back down which didn't push the insulin into your skin. Sometimes if my parents weren't looking I'd just like squirt it down the side of the chair or something so they thought I'd done it but I hadn't. Oh, I did many, you know, at first they just used to ask me, 'Have you done you
 

She started food binging and missing insulin injections. Thought she could misuse insulin till...

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Age at interview: 20
Sex: Female
Age at diagnosis: 2
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Could you elaborate more on how it became, it manifested itself?

I mean when I, when I was 12 it was like issues with my eating rather than like my diabetes. I started by like skipping out the snacks and things because I just felt that I was eating too much and I didn't want to be eating all of that. And then kind of I'd say like from the age of kind of 12 till 16 my eating disorder didn't really have any impact on my blood sugar control, because I was very careful to kind of adjust my insulin to what I was eating. And like, yes, every time I went to diabetes clinic my HbA1c was fine, and as far as they were concerned everything was going okay. But'

What about, did you, on those occasions when you talked to the dietician, what happened then?

When I talked to the dietician I lied, because at that point nobody knew about my eating disorder apart from me, and I wasn't ready for anyone to know. And I knew what I should be eating and like the kinds of things, like the routine I should have. So I just kind of, when she asked me about that I'd say, 'This is what I have, blah, blah, blah, blah'. And she was like, 'Oh, that's fabulous'. And I'd be sitting there like, 'I'm lying to you'. I guess kind of because I got away with it I didn't think it was such a major issue. But then when I was 16 I started binge eating and trying to make myself vomit. And so obviously the binges caused quite a lot of fluctuations in my blood sugars. And when that kind of started happening I, I started like increasing my insulin but not like recording it. I'd like just record kind of what I was supposed to be having. I guess I was quite deceitful about that, and because I didn't want my diabetes team to find out because I didn't want my parents to know.

I found that like obviously when I'm not taking my insulin my blood sugars increase, which causes like a lot of water loss, which I interpreted as weight loss. And kind of like the more I did that and the more like weight I appeared to lose, like even all the kind of, all the negative side-effects and the damage I knew I was doing, it, I kind of ignored that. And, because at that point the like feelings that I got from the eating disorder were very strong, and that kind of overruled everything else and all kind of sensibility and common sense that I had. And I guess I kind of told myself that I'd only do it until I got to like a certain weight. And then that would be okay and then I'd start taking my insulin again and'

So your weight has became an issue when, since you were sort of 16?

I'm, I was, I've been very aware of my weight ever since I was quite young, but like when I was 12 as I said was like when I first kind of tried to do anything about it. But it was kind of, yes, 16 when as I say it like became kind of more of an issue and more dangerous, because like I'd have the bingeing and then on the other side I'd have the restricting. Then when I came to uni at 18 that's when it really got out of control, I guess because I was living by myself for the first time. I didn't have my parents like cooking food for me or like being aware of when I was eating and when I wasn't.

Obviously my blood sugars went very very high. So, like sometimes where I didn't take my insulin for a couple of days, and so obviously that made me very very ill. And I was constantly tired, had no energy, like, and depending on kind of how long I'd been skipping my insulin for, like I'd get, like my muscles would ache, and I'd feel sick constantly because like I was probably like going into DKA. And like sometimes it got to the point where I knew I had to take some insulin otherwise I might not wake up.&nb
When people began to skip injections as a regular practice they found that their blood glucose levels went high and as a result they will felt ill, unable to concentrate and even in constant pain. In short they were living with the symptoms of undiagnosed diabetes. The pain that these young women experienced was not just physical but also emotional; they were depressed, they had low self-esteem and one felt suicidal. But depression and thoughts of suicide are not unique to those skipping insulin. The young man who was clinically obese also had these kind of thoughts.
 

Describes how her binge-starve and not doing insulin injections started and how she felt...

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Age at interview: 27
Sex: Female
Age at diagnosis: 7
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Sometimes, you see as a diabetic, [cough] although I was controlling what I ate, [cough] you can't always control your blood sugars. Obviously if I have a, if I have a hypo, a hypoglycaemic attack I have to eat sugar, otherwise I die, you know, simple as. When you have an eating disorder, you have a hypoglycaemic, glycaemic attack and you have to eat something sweet and sugary, it's disastrous, because you don't want to eat it, because you think it's going to make you fat. And in actual fact this is what spiralled my first binge off. I had a hypo. I ate some fudge that was, because I had nothing else at hand. And then that was it. I just wanted to eat and eat and eat and eat and eat. And I couldn't stop. And like any bulimic knows, once you've done that you feel terribly guilty. But I actually have a really bad phobia of vomiting. That, it's something that I could never ever ever do. I just didn't know how to get rid of this binge. So I exercised and, and I starved myself for the week after. Hence the cycle, which started off with the starve-binge, starve-binge. 

About a year or so after that, funnily enough, ironically enough it was a diabetes nurse who put the idea into my head. It had got to the point where I was so ill that everybody around me was worrying. You know, I'd lost a lot of weight, I was thin, I was not concentrating on anything, I looked very very ill. 

I wasn't realising the damage I was doing to my body. It's not something that was at the forefront of my mind. It was the fact that I was fat. I needed to be thin. Especially to be a singer and to be an actor, I had to be thin. And that's the only way I was going to make it. So as soon as she said that, this kind of light went on in my head and I thought, 'Why didn't I think of that? I'm a diabetic'. That's when the starve-binge and not injecting myself regime started. 

And when you don't inject for the binge, if you don't inject for a few days after, you can actually, I mean I've lost sort of over half a stone in a few days doing what I used to do. I lost weight again. And it got to the point where I wasn't doing my injections about three or four days and my sugar was so so high. I remember being, and by this time I was, I'd left school and I was in work. I left school at 16 with a view to working and then going to drama school when I was a bit more sorted out. Because you can't learn lines and you can't sing when your sugars are so high and you're so dehydrated all the time. And mentally you can't focus on anything.

I actually remember being in my workplace and being in the toilet. I remember sitting at my desk, thinking, 'I have to go to the toilet because I'm going to keel over and I'm going to go in a coma'. And I went into the toilet. And I actually sat in the toilet and I just, I was looking at the floor thinking, 'I can fall on the floor now and go into a coma. But if I do that I might not ever wake up again. I can't do it'. So, I don't know how, mentally I managed not to collapse. I got home and I did an injection. And it was a really really hard thing to do. Because in the back of my mind was, 'If I do this injection I'm going to be so fat'. But also in the back of my mind it's, 'I have to do this injection. I'm going to die if I don't do this injection'. My sugars weren't even registering on the, in fact at that time I was using BM sticks with a, matching up with a colour chart. The sugar was just, it there wasn't a colour on the chart for what my sugar was. It was so high. It had gone off the scale. And I think that was the point when, when I said to myself, 'Right, I need, I need help. Because it's got to the point now where I will probably die. If I, if I go in a coma and I don't inject myself with insulin, I'll probably die'. I was
 

Says that such things as being overweight, breaking up with his girlfriend and having low self...

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Age at interview: 23
Sex: Male
Age at diagnosis: 7
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I was quite depressed as well about two years ago and had to see a counsellor and stuff and I was, like, feeling like suicide and things like that, so I had to see a counsellor. But then I was like generally low and everything because like my ex-girlfriend, break up and stuff like that, so compared to like that, I saw her for a year so I've, I've stopped seeing her now so compared to what I was two years ago, yeah, I'm blinder at the moment. So, things are going alright.

You said about self-esteem, so how were you feeling during that period in which you were overweight?

Oh, I felt really depressed - just it was the self-esteem, like, you know, you go out with your mates and they're all skinny and they seem to be getting girls left right and centre. I used to go out, which to be fair, I mean I used to go out and get like just really depressed, we used to drink too much and that was the main reason, you know. Now I'm not so drunk. I fell in a drunken stupor so, well I mean that's what I used to do, I used to go out and just get hammered. Which again, I mean, I had issues there, you know, so, it all kind of come to a head, but being fat didn't help, so I got really depressed about it. But then, I suppose because I got to a point where I got so low, I got to probably the lowest point you can get, it's either, you know, do yourself in or sort yourself out, so at the moment I'm trying to sort myself out, to be fair, and that's, so, but it does, you know, it'll take, it'll take something to kind of kick you in the nuts and make you go and, you know, sort yourself out. And that's what, that's what happened to me and that's where I am, but, yeah, it is hard. 

But now, I mean, yeah, I'm having a wicked time at the moment, so I'm glad I didn't, you know, but at the time, you get, you get in such a state like I was in, it doesn't matter. Everything, well, I had, I had a list of things I wasn't happy with, like being fat, not having a good job, but in the end they kind of add up and then it just comes like a monumental task, I can't do anything about it, and it's just, you know, you do yourself in, you think what can I do? So really in the end but you kind of like, you sort yourself out. I mean like I was fat, but that was, I think being fat and like having this thing that I was ugly was probably the main, the main factor really, if I'm honest, of doing myself in, in the end. So, losing the weight was the main thing which I've done the best I can, really, so, I mean I'm happier now. It was all other things, I mean I was seeing a counsellor for a year and there were all sorts of, a lot, all sorts of issues to be honest. 
 
The experience of an eating disorder does not just affect the person it also affects the parents and the relationship young people had with them. The young people we talked to said that it was very hard to see their parents suffer and they felt immensely guilty to be putting them through all that. Most of the young people said that their parents have been their main source of support, their 'rock'.
 

Every time her HbA1C test result was high her parents knew she was misleading them & not doing...

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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How were you HbA1c tests?

They were high. Obviously. I mean, I'd fool my parents for so long and they'd believe I was doing everything right and then I'd go for my HbA1c and it would just, you know, it would be high.

How high? Do you remember?

Yeah, it was sort of around 14, 15 for, for quite a while.

And obviously they'd know immediately I hadn't been doing them, I'd been lying and everybody would get really upset and be, you know, I'd be told off by, you know, there'd be a massive argument and the whole event of going for my HbA1c would just be so traumatic and'

Do you have a, and argument with your parents? 

Well, not an argument, the, they'd be so frustrated and upset, you know, that they'd just, and disappointed, and obviously I felt guilty. It was, it was cruel of me to believe, to let, you know, to let them believe everything was fine and then, and then for them to find out it wasn't. It was, it was, it was cruel. 

You think when you're young that nothing will ever happen to you and that you'll get better before it happens. But it' you can't escape it. But with somebody with an eating disorder, that have these really strong beliefs, you, their nothing you can say to change their behaviour no matter how much the doctors warned me. 

No matter how much my parents shouted at me you know, it's'we went through'it's been' it's such a strain on the family as well, for my parents to see their daughter' in damaging you know, damaging myself in that way. It, it's hard, it's really difficult for them and they'd get frustrated and we'd all cry. I've seen my dad cry and I've never used to, you know, my dad never cries. But even that and the knowledge of what I was doing to myself wasn't enough to stop' I couldn't stop myself. And it's frightening to think that something has a hold of you. Even now you know, it's sounds really strange and even now I don't understand it properly. 

No my parents, well my mum at least always came with me because she knew I'd been having these problems so... My parents had been involved in all of this, you know. I've never had to go through it on my own. Which is good. Sometimes I've just felt, you know, I wish they'd just leave me alone to get on with it and I'll be fine, I'll sort myself out. But that's only, that's the eating disorder trying to, trying to push everybody away. You know, I'd push them all away and just want to be left alone. But I can't, I couldn't do it on my own without my parents. I couldn't, if I'm honest. And it's only because they care that they get so upset. It would be so much easier [laughs] if nobody cared, you know. But then, you know, you'd just be left alone and you'd, you know, the consequences would be inevitable.
 
Seeking help

"You reach a point in which you understand that if you do not seek help you will die" [Interview 32].

A few of the young women we talked to experienced what they named a 'wakeup call'. They basically reached a point where they realised that they needed help or they would eventually die as a result of what they were doing. They said that no one will be able to help you unless you accept you have a serious problem that needs solving. For them this was their turning point. The young people we talked to emphasise that you are not alone and that there are people that will help you. As advice to others the young people also said that you may have to look around to get the help that is right for you, and that this is very important. One young woman found her diabetes care team to be unhelpful but she had the support she needed from her GP. In another case a girl was glad that her consultant was quite direct and made her understand the risks she was taking as well as requesting psychological help for her in the city where she was studying. The young man affected by clinical obesity sought the advice of a private consultant and attended counselling sessions.

 

Her consultant made her realise that if she continued 'misusing' insulin she would be dead within a year.

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Age at interview: 20
Sex: Female
Age at diagnosis: 2
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And then at Easter when I went home I'd clearly lost a lot of weight. And my mum like came and spoke to me and she was like, '[name] you've been skipping your insulin haven't you?' And like I had to be honest with her then, when she was being so direct with me. So at that point she already knew about the eating disorder. But the rest of my family didn't. 

Understandably my mum was very very upset. She like knew all the risks and all the dangers. She knew what I was doing to myself. And I knew all the dangers as well, yet I was still doing it and she couldn't kind of understand that. So she told my dad and my brother, because up until then I'd told her not to tell anyone. But I knew they had to know because it was affecting me so much. And then she phoned my diabetes nurse and, and told him, because I'd like given her permission to do that, but I didn't want to speak to him myself. And then like, yes, I had like an appointment with my consultant and my nurse. And like the first one was really horrible, because like up until then whenever I've gone to clinic they always told me how well I was doing, and like, I've been like one of the compliant patients who, yes, who really took care of myself supposedly. And I kind of, I felt bad because I felt I'd let them down. 

And by the end of the summer like we'd decided that I needed more support for when I came back to [city]. So we arranged for me to have counselling. So I started that when I came back to [city] in September of, when was that? last, September of last year. And at that point I was still like very much missing my insulin a lot of the time, and like the bulimic side of my eating disorder was getting a lot worse. And although I was kind of trying to get things back in control, I was really struggling to. And I saw my diabetes team at home again and like my doctor, my consultant was like very kind of frank with me and told me that if I continued the way I was going then he doubted that I'd be alive in a year because like my blood sugars were running high, so high constantly, often like off the scale on the meter, and at one point my HbA1c was like 17 point something. And so, yes, I was pretty ill. And he said that the only reason that I hadn't like landed up in hospital yet was because I knew exactly what I was doing like in regards to like taking a bit of insulin just before I like went over the point where I would kind of end up in hospital. And he was like saying how dangerous that was because I might misjudge that one day. 

And that was like kind of really a wake-up call for me, because like although like myself I'd been scared that I like might die, no one had ever said to me before that, that I might die from what I was doing. And so I guess I kind of c-, tried to pretend that the dangers weren't there.

So he was quite blunt?

Yes.

He was not sugar-coating anything?

No. It was like, yes, I mean like at this point even though I was still like seeing like the paediatric team, he was like, 'You're not a child any more. Like there's nothing''. He was just like saying to me that there was nothing he could make me do, but like he could advise me what to do, but I needed to make my own decisions and my own choices, and it was my life I was screwing up, not his.
 
 

Explains about the diet that has helped him to lose weight and the benefits of seeing a counsellor.

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Age at interview: 23
Sex: Male
Age at diagnosis: 7
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How easy or how difficult it was for you to start on this diet?

When I first, when I first started it was easy. Because I knew I was fat and I wanted to lose weight. I mean, when I saw her in London I was probably about 2 stone more, I'd already lost about 2 stone going down the gym. So'

But you were still clinically obese?

Yes, she said I was still clinically obese and I needed to lose it, so. The diet was easy, I mean, it's, to be fair, it's quite a good diet. 

This lady in London put me on a high protein diet. So it's like 60 grams of carbohydrate a day with - and everything else just, like, fish and meat and stuff. So it's high in fat, but then you don't keep it, you see you lose the weight so you don't eat much carbohydrate and you can lower your insulin right down. So, I mean, I was on something like 36, 36, 36 and then like all day long for all my injections, and now I'm like, I think I'm 6, 6, and 8 and 16 before bed, so I've cut, I mean now have hardly any carb - insulin at all anymore, because I don't eat much carbohydrate. 

Well, I think while you're losing the weight you have like 60 grams which is like three slices of bread, so that puts you like through lunch if you're working. I mean, I used to take like a couple of sandwiches in, and I'd also have a bit of ham and a bit of salad and I add loads of mayonnaise. And like, and then in the morning you have like fish or whatever, or bacon and eggs, and then at tea you can what, whatever, really. Vegetable stir fry with meat, or steak, or whatever - there's loads of stuff you can have. So it's not that hard, to be honest with you, and it works. And then, and then once you, once you hit the weight, once you stop losing weight, you get to the weight you want to be, you can have like 100 grams, so you can have pretty much a normal amount. 

I saw that counsellor which is the first step I suppose which started to help me out and sorted out all my pro-. I mean, I've got issues, I've, I'm sure there are millions, loads of people who have been through like more stuff than you've been through but I mean, I've been through some stuff and it all kind of built up, I suppose, over the years and I didn't really talk to anyone about it and it come, it comes to a head, I suppose. The issue, yeah, you talk about it and sort yourself out and you realise what you're doing wrong, and now all I know the reason I mean the reason I wasn't getting birds, one was because you know I was miserable, you know when you're not happy with yourself people know that, you know, and that was the main thing, being wasted in a corner of a night is, people don't like that either, it's not attractive, but you don't see it like that. You think everyone else is having a wicked time, you know, and you're not, and because it's you're fat and you're a loser, and that's the main thing and it builds up and you then know, it's pretty much what happened. Well. Anyhow, I lost the weight because I didn't like, I mean, I didn't like being fat. So, I'd rather, I'd rather lose the weight. So I did. And I feel better about myself now, so.

Yeah, one day you wake up and you feel like you need to sort yourself out and you do. And, yeah, I mean, at the end of the day, to be fair I'm doing it one step at a time - I've lost the weight, I mean I saw the counsellor about the other issues I had about kind of getting, because I was depressed and what, and now I'm trying to sort out my career and I'm seeing a careers' advisor. So you do one thing at a time, but I'm getting there. So I mean, like, compared to two years ago, yeah, I'd say I'm about a hundred per cent better than I was. 
Recovering from an eating disorder

One thing that young people emphasised was that recovery from an eating disorder and not taking insulin is a very, very slow process and that there are going to be times in which they felt frustrated and miserable. Also they might feel physically ill and 'terrified' to start taking insulin again. The young women we talked to spoke of taking small steps at a time; they said that the psychologist or psychiatrist will help you to deal with those negative thoughts that you have about your body and that you will develop coping mechanisms to help you deal with stressful life situations. Recovering, as one of the young women put it, is “one step forward and one step back” because there almost sure to be relapses. But at the same time the better they began to feel physically and emotionally the more determine they are/were to continue with their treatment.

 

She emphasises that overcoming an eating disorder is a very long & difficult process, that there...

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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And I used to be worried that once I started taking my insulin again I'd put weight on, which obviously I would a little but I was scared of how much. And, I thought, you know, I'd just keep putting weight on and'

That was one of your primary concerns? That you were going to put on weight and more weight and'?

And the times they, when I, when I started taking my insulin again and I did put a bit of weight on, yeah, because I was under weight. I mean, at one time I weighed, I think it was under, about seven stone and that, you know, I was, I, that was border, that's anorexic. That was, the weight I was for my height was classed as, you know, anorexic. So obviously I, when I started taking insulin I did put weight on again and it, at first it's awful. At first it made me so depressed I felt, I just felt disgusting in my own body and I wouldn't want to go out and wouldn't want to talk to anybody. I was in such, the worst mood and that lasted sort of a week maybe and then I started to see that, I saw that, you know, I wasn't continuing to put weight on. I'd stayed steady. So, and, you know, gradually my mood improved but yeah, I wouldn't, when you, it just makes it worse really when you, you're making it hard for yourself because then when you start to put weight on again you just, you know, it sends you off into sort of depression. And that, you know, that's something else that comes with an eating disorder, depression. And I still take anti-depressants. because, you know, that's what the psychiatrist says I need to do. 

Yeah. It very much takes time. It's a really, really long process. And it can be very frustrating at times especially for my parents it was frustrating. It's been frustrating because they just want me to get better. They just wanted me to be fine again. And like right especially for my dad, he was like well we've done this. We've been to this person. We've done everything, why aren't you better? And my dad would get really frustrated and angry because he just couldn't understand what was wrong with me. 

Like' but as for accepting it yourself, you' I don't know what triggered it for me I just' I think it's just the sort of repeated process of missing injections, going to hospital, having a HBA1C test' and growing up.

'well the psychiatrist told my mum and my mum told me like a while later. She said, '[Name] will out grow this' and it's true. I feel like I've grown up and not you know, I still have these thoughts. I think they'll always be there to some degree but I've learned how to sort of battle in my self and you learn to take responsibility for yourself. And the danger is though with diabetes you can't, the time it takes for you to grow up and realise all this, you know, you're doing damage to yourself. And that's the you know, with somebody with just an eating disorder that's not diabetic, yeah okay, they'll cause themselves damage but with diabetes it will be brought on a lot quicker. 

And as I said before lots of young teenagers don't realise, they think they think their invincible and that things will never happen to them. But they, they will. And then I just thought to myself, you know, I don't want to be sat here five, six, seven years down the line. I don't be wishing that I'd listened, you know, I want to ' I mean the scariest thing for me is the thought of losing my sight. I just look around and think, god if you couldn't see, I mean you can't do anything. You know I couldn't read my books and do my law degree or I couldn't drive. They'd take your licence off you like that. Just everything there is to see in the world' oh it'd be just devastating. And I just don't want to be sat there thinking, you k
 

She explains that her therapy consisted of taking small steps at a time. Says that when she lost...

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Age at interview: 27
Sex: Female
Age at diagnosis: 7
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What did the psychologist teach you?

Every individual is different. So for every individual it would be a different thing they need to focus on when they have that negative thought. And you start with very small steps. Like one of my, one of the things I started to do was, instead of thinking, to think that I'm not going to binge, that's too big a step. Because if you've got the thought where binge, you're going to binge, there's no way you can't if you've got an eating disorder until you, you've come through on the other side and can fight it and when you are strong enough. So one of the small steps that I took was that I'd binge on healthy food. I tried to binge on foods that weren't as sugary, because I'm a diabetic. So that would make me feel, it would make my sugars less high. Which would make me feel a tiny bit, a tiny bit better than had I have binged on all of the things that I used to do. So that was like a small step that I did. When I was further down the road'

I remember one time, a specific time, and was quite a long way through my treatment actually. And I remember having binged. And I was starting to do my injections again and I was on a roll and I was starting to feel a lot healthier. And I remember bingeing. And I'd done, I'd done my night-time, I'd done my background insulin the day before. I'd done all my insulin up to that point of the binge. And I remember thinking, 'Oh, my God, this is, I'm going to put so much weight on, because I've got my background insulin'. Because obviously what I used to do was not even do my background insulins, so I'd have no insulin on board at all. But I had all my insulin in my body and I ended up having quite a bad binge and I really really wanted to inject myself. I drew the syringe up and I wanted to inject myself. And I was sitting on the bedroom floor crying for a long time, thinking, 'Just do it, [name]. Stick it in you. Go on'. But there was a, another voice in my head saying, 'Oh, God, you're going to put, you're going to put so much weight on if you do this jab. You're going to be really fat tomorrow'. And then the other voice was saying, '[Name], you're going to be unwell tomorrow. Please do your injection'. And it was this internal battle going on in my head. 

So one friend who I'd talked to quite closely about it, because I couldn't keep it from every single person. I had to have one person that I spoke to. So I confided in a very, very close friend. Which took a lot of years. But she knew what was going on with me and I'd talked to her about like the psychologist and things. And she said to me that, 'If you ever ever need to phone me up, please phone me up, please phone me up and I'll talk to you. If you get the urge to binge, please phone me up'. And this was one of the things in actual fact that the psychologist and I had discussed, whether there was anybody that I could do that with. That if I did have these urges, could I phone somebody up and speak to them and try and change my way of thinking about the binge? 

So I phoned her up and I was on the phone to her for an hour, just crying. And she said, 'Please, do your injection. I want to stay on the phone while you do it'. And I did the injection. And it was, it was a real hurdle for me to do it. Obviously the rest of the week was a bit skew-whiff. You know, I ended up not eating very much for the rest of the week. But the good side of it was at least I did my injection for that binge. Which was a very very very big step, you know. 

So it was, it was things like that that, that, you know, that really helped that we talked about, that I could maybe do in that situation. Which is what I did. And it was very hard. But you, you feel like you've come this fa
 

She is taking her insulin more regularly again. Having treatment for her eating disorder and...

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Age at interview: 20
Sex: Female
Age at diagnosis: 2
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In May you started to take your insulin in a more kind of regular, more systematic, can you tell me about that?

Yes. I mean I started treatment at the [hospital] in May and things, for like about a month things were still very very unsettled and I wasn't really making much of, much of an attempt to take my insulin more regularly. But like gradually kind of like over the summer and like up until now I've been like gradually working on taking my insulin more regularly. Yes, because I was in treatment for the eating disorder, that really helped. Because like they didn't just focus on the eating disorder, because they understood that like me not taking my insulin was, like if they just dealt with kind of the eating aspects of things then it wouldn't help, because I wasn't taking my insulin, so that I needed support from like the diabetes side. So they arranged for me to start seeing a GP who like knew more about diabetes than they did. And that's been really helpful, because it's just given me a chance to kind of talk about like the diabetes aspect of things. And'

What has changed? I mean with this new, seeing a new psychiatrist and psychotherapists, what has changed? Regarding sort of treatment.?

It's that I'm specifically having treatment that's targeted on overcoming my eating disorder. And it's very proactive and, because it's cognitive behaviour therapy. And like rather than just kind of talking about things and saying, 'This is how it is' it's like I sit and plan what I'm going to do and how I'm going to do it, why I need to do it. And it really makes me kind of think about things and cha-, and my thinking change, and it works on changing like my attitudes and my habits. And so as the treatment has progressed like I've made more and more changes, and been able to maintain more. It's, with like starting to take my insulin again, it has been so hard because, I don't know, I somehow got the attitude that insulin, although it's what keeps me alive, I kind of treated like it was something poisonous. Because when I didn't take my insulin I could see the numbers on the scale going down, and when I started taking it again then they'd go up again. And I couldn't deal with that. But, yes, so it's been a real struggle. Like I've had like times where I've managed to do like really well with taking it for like a week or something, and then like just completely fallen back down again. But for the past six, for the past six, seven weeks with, like me and Dr [name] have been in quite a lot of contact. And she's in contact with like my psychiatrist and my therapist and she got into contact with my diabetes team. So they're all kind of collaborating together. 

Find out more about young people's experiences of eating disorders.

Last reviewed December 2017.
Last updated November 2014.

 

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