Age at interview: 20
Age at diagnosis: 19
Brief Outline: She has lived with diabetes most of her life and has been on different insulin types such as' NovoRapid and Insulatard. When she was on two insulin injections a day she had a fixed mealtime routine and had to have snacks in between meals. She stopped having her snacks because she thought she was eating too much. She started misusing insulin and developed and eating disorder.
Background: University student; has a boyfriend; living in shared student accommodation with three other friends.
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She started food binging and missing insulin injections. Thought she could misuse insulin till...
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Could you elaborate more on how it became, it manifested itself?
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…
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 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 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.
Her consultant made her realise that if she continued misusing insulin she would be dead within a...
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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, ‘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.
So he was quite blunt?
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.
She is taking her insulin more regularly again. Having treatment for her eating disorder and...
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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 the 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 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.