Eating disorders (young people)

 

I mean 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…

 

 

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 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…

 

 

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.

 

Sometimes, you see as a diabetic, although I was controlling what I ate 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, 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 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 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 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 go in a coma and I don't inject myself with insulin, I'll probably die'. I was getting pains in my body, pains in my joints, I was getting pains in my kidneys. My eyes were hurting and the vision was blurred in my eyes quite a lot. So I was persuaded to sort of get help. I mean there were a few times when I was suicidal, you know, because of the state that I was in, and the, mentally with the high sugars I was just a complete mess.

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, ‘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? 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 tried to pretend that the dangers weren't there.

 

 

Yes.

 

 

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.

 

 

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 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. 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, '[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 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 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 far, you don't want to take a backward step. You've done so well, you don't want to, because if I hadn't have done the injection I know that I was going to feel terrible. I'd feel ill; I couldn't concentrate on my work the next day. And I just couldn't bear to feel like that again. Because I'd started to feel better, I couldn't bear to feel like that again. But I also couldn't bear the thought of being really fat. And it, it's, like I say it's this, this battle going on, and you just have to kind of weigh up the pros and cons in your head, you know. And which is initially what we did. We, it's weighing up the pros and cons of your actions and thinking about them, rather than just doing it sporadically, rather than just bingeing and forgetting about it and not doing your jab. It's thinking about whether you need to have the binge, why you want to have the binge, what spurred you into feeling that you have to have the binge, why are you starving yourself. I mean normally you have a binge; you starve yourself simply as to compensate and to be, to stay thin. So that was just some of the, the work that, you know, that we did together.

And how long you stayed with her?
I stayed with her for... about three years, about three and a half years.

But when I lost my sight, obviously a lot of the same emotions that I'd had when I was younger were, had come back again, on top, along with a lot more emotions, because I've, you know, I've lost my sight, I've gone blind. So I decided and I took it upon myself, people think you've gone blind because of how you treated your body. Surely you'd never do that again? Surely you could never go back to living like that again? And I couldn't. But I'm not to know that and I'm not to know whether it might suddenly creep up on me one day. Because an eating disorder is an illness and it overpowers everything. And it overpowers the fact that you are a diabetic. It overpowers the fact that you are blind because of it. And there's not a damn thing you can do about it, you know. So I took it upon myself to go back to him and talk about how I was feeling about going blind, about having gone blind. Because I didn't want, I didn't even want to take the risk of me falling back into that trap again, you know. I thought, 'Right, I've, it's, I've lost my sight because of this. I'm feeling crap. I've gone blind at the age of 23. But there's no way I want to be blind and going through what I did before. So I'm going to go back and see this person that I saw before and talk to him about this and nip it in the bud before it's even got started'. So that, you know, that's what I did.
 
 

 

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…

 

 

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 the doctor has 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.