A-Z

Interview 29

Age at interview: 19
Age at diagnosis: 14
Brief Outline: She remembers that after diagnosis she left the hospital with a bag 'full of medicines'. Initially she was put on two injections of Mixtard 30 a day. To start with she found managing her diabetes easy. She learned to inject and was monitoring her blood sugars regularly. Around the age of 16 she began to develop an eating disorder that took sometime before it was properly diagnosed. Initially, the care team treated her behaviour of skipping insulin injections as a 'rebellious' teenage phase. It was nearly two years before she was referred to a psychiatrist. Recovery has been a gradual, bumpy process with lapses on the way. In her experience the support of her family and close friends has been invaluable.
Background: First year university student. During term time lives in student accommodation but often at weekends goes back home to see her parents and brother. She is enjoying her student life and independence.

More about me...

 

Says that her current nurse at the adult clinic has a refreshing 'no nonsense' approach which has...

Says that her current nurse at the adult clinic has a refreshing 'no nonsense' approach which has...

SHOW TEXT VERSION
PRINT TRANSCRIPT
This is my diabetic nurse. 

I wouldn't say they had more experience, they just have a different approach to dealing with patients. They'll be more, they'll be, they'll take the, the kid gloves off. They'll be more sort of direct and honest with you and like, whereas my other, the paediatric diabetic nurse, she was always, she was very gentle and soft and sweet and she always sort of tried to soften whatever she was saying. But the one I've met now, [name], she just tells it as it is. And I remember her saying to me, you know, 'You've been playing a game of Russian roulette.' She says, 'I don't know, you've been so lucky for so long I don't know you've done it.' And she was quite direct and, you know, because they're dealing with adults, aren't they, I suppose. They, they'll you how it is.

Has that helped?

Yeah, she, yeah it has helped. She's given me a lot more to think about and she's approached it from, she's really friendly, she's a really nice lady, she's really understanding but she's approached it from a more serious point of view. It, it's good as well to have somebody new because it's like a, you know, a fresh start, you know, just we'll start again with someone else and see how it goes with them. And it's just refreshing to have a change really sometimes.
 
 

Says that one of the advantages of her insulin regimen is that she can have a lie in.

Says that one of the advantages of her insulin regimen is that she can have a lie in.

SHOW TEXT VERSION
PRINT TRANSCRIPT
You were still on Mixtard insulin when you started having problems with your insulin?

No, I'd moved to four injections at, well, multiple injections a day where you take one in, injection of a long-acting insulin which lasts for 24 hours and that's in your body just, as like a base line, base level, and then every time you eat you'll give yourself an injection of a fast acting insulin to cover that meal or to cover that food So they say, you know, generally most people have three meals a day, so you, in total you'll be having four injections a day but they literally, you can adjust that to however many times you eat. And I'm still, I'm doing that now still, that's what I still do, because it's a lot better for sort teenagers and young adults because on Mixtard 30 you have to take the insulin at set times, specific times and you've no flexibility, you know. You can't have a lie in like, I'd hate to do it now because I love having a lie in and like when I've not got a lecture till one o'clock, you know, I've, I love to stay in bed [laughs] But you can't do that on the other regime.

 

Two years after diagnosis she started to feel 'fed up' with her diabetes and became very self...

Two years after diagnosis she started to feel 'fed up' with her diabetes and became very self...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Tell a little bit about those early times because you said at the beginning you were not that upset?

No at first, I dealt with it really well and I just accepted it and you know, I was really' I was just really good with it. And I didn't mind really, I didn't feel sorry for myself or different and all my friends are really supportive, which helps. And you know, they were always asking me to check my blood sugar and making sure I was okay, so it was really nice. It was only after maybe a couple of years that it, you know, I started to get a bit fed up with it. 

So you were sixteen by then?

Hmm, yeah. 

What do mean fed up with it?

I don't remember the exact reason' yeah there was nothing specific that changed the way I felt that I can think of. It happened gradually and it, it's all to do with an eating disorder I developed. And still now, you know, it's impossible to say when it started or how exactly it started, it's just something that, you know, that develops. You know how strong your mind is and if you get a thought in your head, and it gets out of control, then you know, there's nothing you can do to stop it. And especially' I think it's an issue with a lot of young female diabetics because all of the sudden you know, you're growing up, everything's fine. You've probably even lost a bit a weight which you know, you're probably happy about. But then you start on insulin and you put a little bit of weight back on to what you should be normally and everything's suddenly focused around food and when you go to clinic, they weigh you, and it' it's just you become. I became anyway, very body, very, very self-conscious about my body' and that's where all the problems started really.

 

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

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

SHOW TEXT VERSION
PRINT TRANSCRIPT
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
 

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

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

SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
 
 

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

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

SHOW TEXT VERSION
PRINT TRANSCRIPT
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
 

Says that every time she feels tempted to miss an insulin injection she talks to her parents who...

Says that every time she feels tempted to miss an insulin injection she talks to her parents who...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Because I still sometimes feel like I'd like to miss them. It's tempting. I've been doing it now for, properly, you know, just for a few months but if, if I start feeling like I'm not going to do it, then I'll phone my mum if, or I'll, you know, I'll text my dad and say it. You know, I'm thinking about not doing this injection [laughs]. And, I mean, they'll be straight on the phone and you know, convince me to do it. Or I'll go and tell a flat mate. It's like, don't let yourself think about it too much, just go and tell somebody immediately and they'll make you do it and then you won't have a choice. And that's the only way. That's really it's a good way actually of helping yourself.

It must have been quite difficult for your parents?

Yeah, it was really difficult. It's, yeah, I mean, I've felt so guilty about all the upset I've caused them.

But at the same time it seems to me that you have a strong relationship with them?

Yeah, it's definitely made, given us a stronger relationship. And I can talk to my mum about anything And my dad, I suppose. My dad's he's found it probably the hardest out of both my parents to deal with. I think partly because men are less sensitive anyway and they can't get their head round things like that. And he's quite old fashioned so that didn't help. But he's, he, he's learnt to, how to cope with it in his own way.

Hmm. OK.

And they just feel really bad. You know, they, they've said, you know, 'We wish we could have the diabetes for you. And we'd take it away if we could.' But, you know, it's, it's just unfortunate. But, I don't, I don't feel sorry for myself that I've got diabetes and I don't feel different and, you know, if I go out and I'm in a restaurant I'll do an injection at the table. I don't, I don't feel like I have to go, you know, into the toilets to do it. And if anybody's got a problem with it, then that's their problem. You know, it's not mine. It's just something I've got to do. And it really annoyed me like when I'm doing an injection and people go, 'Oh, does that hurt?' Or, you know, they pull a face and go, 'Oh I don't' know how you can do that?' But, if I, and I really just don't want people to feel sorry for me about it. Because it's nothing to feel sorry about. It's just, you know, there's much worse things you can have than diabetes.

 

Says that you can't battle an eating disorder on your own, that you need to ask for help.

Says that you can't battle an eating disorder on your own, that you need to ask for help.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Now, based on your experience of eating disorder and insulin abuse, what would be your advice, or what first come to your mind to tell other young diabetics, particularly other young girls who might be having sort of, starting to have problems regarding food, skipping insulin? What would you say to them?

That they're not on their own. You know, you're not on your own. And that, you know, and I know it's the hardest thing to do is to ask, you know. Sometimes the hardest thing to do is to ask for help. Especially when you're young and want to be independent. But that, you know, you, that is the only way that, that I can see anyway, that I've experienced the, you can overcome. You can't help yourself in situations like that. You just can't.

So that they need to ask for help? That they need support?

Hmm. They need to yeah, get a system going. Get everybody they know involved with it. You know, so you're not battling it on your own. You don't feel like you're battling it on your own. And just talk, talk to a counsellor and learn, you know, coping mechanisms for when you're feeling down or depressed to help you put things into perspective. 

And just to take each day at a time and take each injection on its own, you know. Don't think too far into the future. Like don't think about what's going to happen next week when I go out or, you know, what's going to happen tomorrow when I go out for a buffet lunch or something. Just take, you know, each sort of step at a time and it makes it a lot easier breaking it down like that. 

Previous Page
Next Page