Interview 16

Age at interview: 17

Age at diagnosis: 3

Brief Outline: She has used the same insulin regime since diagnosis; Human Insulatard and her HbA1Cs are always between six and seven so she does not see the need to change. She has been doing her blood sugar tests since the age of five but she was unable to do her own insulin injections. Her parents were doing the injections for her until last year. She asked her consultant at the adult clinic for help and she was referred to a psychiatrist. After a year of cognitive therapy she started to do her own injections. Now she feels confident, independent and has a busy social life.

Background: She is a Sixth Form student and works part-time; lives with her parents. She says that the support and encouragement of her family, friends and the diabetes care team at the adult clinic has helped her overcome her problems.

She attended a children's clinic until she was 16 and says that one of the nurses took too much control over her injections.

When you were in the children's clinic was something different?

Yeah, they were different - they were more pushy, because I had a nurse that forced the injection in my leg when I didn't really want it in my leg. He made me hold his hand and he pushed it in my leg and he sort of - it sort of weren't the right, the right way to go about it. I think that knocked me a bit as well. They were a good team, but used different tactics to the adult clinic, which I'm pleased I am with them now. So they weren't really that supportive in that way, so they just thought I was a baby still, relying on my parents to do it for me, but they didn't realise I had an actual block, a fear which the counsellor helped me, help me unlocked really.

Can you describe to me again what happened with this nurse?

Yeah, there was a nurse I had since I've been diagnosed really and he always used to - like my mum used to ask him to come round sometimes at home, because I did need the help but it just - it weren't round at the time, so he'd come round and my parents were there, and I sort of had the injection in my leg, and he sort of like, pushed his hand and pushed it in my leg, with me holding it when I didn't really always feel comfortable. But he just thought that was the only way and he was sort of more, not as easy to help me do it as - same as like when I went back there they used to laugh and make jokes, 'Oh, your parents will be doing it till you're married'. It weren't really stuff you wanted to hear. Like, I could have easily I got easily despondent, to be quite honest. They thought - they didn't realise what they were doing really.

So it hurt?

Yeah, because deep down I always wanted to do it but it was just the help that I needed to help me do it but they weren't really helping whatsoever, so I'm really glad where I'm today, like the adult clinic, they turned it around really.

So, how old were you when you went there?

Sixteen, the adult clinic, so from when I was diagnosed till when I was sixteen I was with the children's unit. They were good like for my whole diabetes because my blood tests have always been good. They were good at advising me and stuff like that, but when it got down to the injections I wouldn't really say they were all that good. They just made it uneasy. 
 

She found it very hard to take over from her parents who had been controlling her diabetes since she was four years old.

When I was about thirteen, fourteen onwards, they advised me that I had to try and do my injections myself, but it was really difficult, because after my mum and dad doing it for me all them times - all the years.

For how long?

From the age of four to fifteen, sixteen, so it was really hard to try and take on the role, and doing it myself and be more independent, because I was just relying on them at the time, which weren't really a good thing. So the doctor - the doctors kept advising me to try and do them myself, but it sort of weren't working until I was about sixteen. I went up to the adult clinic and it suddenly changed, my whole life really changed from then, really. The doctor was diabetic himself, and he said to him, and I said to him I was scared because I couldn't do my own injections and I wanted to go out with friends, and sleep over, but it was really difficult because my mum or my dad had to come round at a certain time and give me my injection, and it was just - it was just difficult.
 

She asked for help because she wanted to control her diabetes and be a normal teenager.

So I said to the doctor, and he looked on the internet - well, not looked on the but he looked in his books, and he saw a good psychiatrist, who I got referred to in [hospital]. That was probably the turning point in my diabetes. It really, really helped. So I went along there, I had intense therapy for two - I went every two weeks, for a year travelling up to [city]. And when I got there at - it was - it was really good. It didn't seem as if it was good at the time because I felt I weren't getting anywhere. I was just going there and going there and I still felt the same. But I got given tasks to do, and aims, to try and encourage me to do it. 

Like what?

Just stuff to help my confidence to begin with, such as going out somewhere different. Just - it was just a gradual build up, but the thing that I liked was she didn't concentrate straight on my diabetes to begin with. It was more me as a person, so she was giving me tasks like to come home, and change my routine a bit, do something different, just things that you wouldn't thought would help, but it really did. 

So I got given a few tasks like that. I had to write a diary of what went on in my life, school and stuff like that. I had about six sessions with just aims and objections that I had to do. But then it eventually got to the bit that I didn't want it to get to, which was the injecting, and she give me an orange to begin with to inject, and I injected it, but - that was fine - I could - because I could do my own blood sugars and stuff, so I'd done that okay, and then she give me her arm to try and inject, and it really got me upset because I didn't - because it - because I had such a fear of trying to inject that it eventually overcame me. I couldn't really - shaking, sweaty palms, panic attacks. So I was really pleased because after about ten minutes of just holding the injection in my hand I managed to inject her and that was the main point where I knew I could probably go further. 

She tells us what she had to do to be able to conquer her fears and start injecting herself.

So that was your first experience?

Yeah, that was my first experience injecting. I didn't inject her one time, I injected her about six times, so that was really nice of her to let me do that. And I was on a high from that really, like a buzz, because I knew that I could eventually, like, do it, so I thought maybe I could do it myself. So I went away and I had to write down my thoughts and feelings, and she said I had to try and inject my dad, and my mum, like for two weeks and then I had to go back and see her, so I was a bit scared of doing it because I didn't want to hurt them and I - and I wanted to do it for myself, so they were good enough to let me inject them, after dinner. Because they were taking on my role really - I had to inject them after dinner, when I would normally have to be injected, and in the morning. So, I injected them for two weeks. Some days I had blips I couldn't do it, so I just left it, because I thought I can't really push myself if I know I can't do it, because it just got me really angry, so I left it for a while, and then I done it and I went back and told her what happened and stuff, and she was really pleased with me.

And then the bit I didn't want to know got to - you got to do your own injections, like yourself, now. We've got to build you up to eventually doing it. So she asked - she give me an injection, filled with like saline solution, just like water, and she said after, like a few sessions, she said, 'You've got to do it yourself now'. In a round about way. She didn't directly say it like that, but she had to try and coax me into doing it. And I knew that the day had come that I had to do it, because that was what happened. So I got given the injection and I had to think positive thoughts, like, 'I've got to do it, it'll help me, I'll be able to lead my own independent life, be like everyone else', so the more positive thoughts I got the more - it sort of pushed me, and I felt - and it sort of pushed me to do it, so I got the injection in my hand, and eventually it went in my leg. I had to hold it there for five seconds, and pull it back out and that was the biggest achievement for me by far, and I had to do it again. I had to do it about five more times, just to make sure that I'd done it right. Then I went home from there on a real high, because I could do it and stuff, and then the time come, like, after dinner I got given the injection and, and for some reason I could just do it. It was just after the whole year and a half of going there that I just managed to be able to find the strength from somewhere for me to just do it. Because it weren't just like a normal fear. It was just like a block, because my parents were doing it for the past fourteen, fifteen years, and I just got accustomed to it, so from then on I've been doing it every day.

I think the counselling and the help of the adult clinic, that was the main thing that helped me do my - and just the - the coaxing along and just encouraging from friends, family and everything and that - that was the main turning point for me.

Explains why it is important to check your blood glucose levels every day.

No, finger pricks?

I think they're really important because without them you'd be giving yourself the same dosage of insulin when your body might not even need that. I think that if you keep a check on your blood that is really important, because it shows you what your levels are and if things need adjusting it will tell you when and where. Because if you inject in the morning and it's really high you know to adjust your dosage, so I think yeah, they're really important and you should try and at least do them three plus times a day, just to keep them in check for you.

Do you record them?

Yeah. I've got a monitoring book. I'm not always good at writing them in all the time, but yeah, I keep a check on them so it's a good reference for the clinic to look at where you're going, and things, so yeah, it's important to write in the book.

Says she was in a catch 22 situation because she wanted to be able to control her diabetes but at the same time independence frightened her.

How does it make you feel now, that you're sort of taking control of your illness?

Yeah. It makes me feel a different person, in a way, because I feel quite happy, like when I wake up in the morning and I know that - I know that I'm in control of it and, I decide what happens, like my insulin, and I feel like I'm leading my diabetes now, which I'm really pleased about. I think if I was back where I was before, I wouldn't have got nowhere, but like I said if you just ask for the help then you eventually become a better person for it.

What have you had to learn in order to manage your diabetes?

A lot of stuff about me in a way, like your confidence - you've got to - and your self esteem. You've had to learn to be more - not more confident - but more, like, aware of stuff that's going on around you, because that helps your diabetes, like you know every day occurrences. So I've had to learn my routine, and when to - when to have injections, when to test yourself. It's like when I go away on school trips I've had to learn how to communicate with other people to let them know that I am diabetic and what sort of stuff I need to help me and stuff. So I've had to communicate with other people more.

And since you have started managing your diabetes yourself have there been ups and downs?

Yeah not as much now, but when I first started there was lots of blips. Sometimes I had, I had to stop and evaluate and think, 'Right, I've got to do it' - when I held the injection the block come back again, that's why I still see the counsellor now, just to make sure I don't relapse. There was times when like after dinner, I was, I didn't really want dinner to end, because I knew I had to have my injection, so' You've just got - with the parents pushing you - well not pushing you, but, like, helping you, that really helped, because that let me carry on, so' But whoever helps you, you've still got to make sure you keep seeing them regularly, because you don't want to go back to where you was before, because you've come a long way.

Are you scared of the injection itself or'?

It was more - I think it was - that was what the counsellor was trying to work out, and it was a long time - it was more the letting go of the independence - of the dependence and knew I had to do it on my own, but I weren't really knowing that. It was - and it was more the fear of what happens if it's in my leg, and it doesn't go in? It was more the, just the build up of so many worries that eventually just made me block and I just couldn't do it. It was the build up of a lot of thoughts of what would happen. What would happen if I give myself the wrong dose? It was more main worries that what would happen. It just got a bit out of control really, and this made me eventually not want to do it at all. So, I had to go over that a lot of times just to, eventually get to where I am, so'

So on the one level you had all these anxieties and on the other level you had this longing for independence?

Yeah, yeah. So it was Catch 22 really. Like one brain's telling you one thing and the other's the other thing, so it was difficult, very difficult, yeah.

And for how long do you think you will continue seeing the counsellor?

I'm not sure probably a few more sessions, but they're more wide now, like I go every three months, or every four months, not every two weeks now, so'
 

She became a more confident person once she started doing her own injections which in turn helped her social life.

Right before I was very dependent on them - probably more than I should have been, you know, like, they injected me morning and evening I could look - I felt I could look after myself, but I'd more rely on them to do it rather than me. I was kind of being lazy in a way because I - It stopped me socialising more because when I went round my friends house I had to go home a certain time because my injection needed doing or - and I felt I couldn't really go out - go out with friends because I felt that if something happened what would I do, you know? So I was very dependent on them and my life was just same old, same old really. But after - like now, it's just completely changed and it's hard to believe what I was like before. I'm going out all the time - going to parties, going round friends' houses and injecting, just looking after myself more, and they're not really doing anything. Like they're there for me but I'm more the diabetic now, whereas they were before, so when I'm low I deal with myself, when I'm high - I keep blood checks. It's just really surreal how I was before to now. I'm just doing everything for myself than I weren't before, just because I was more dependent on them.

How were you feeling at that time?

Quite depressed really, because I used to come home at the end of the day and think all my friends had it easy in a way, because, you know, they had - they could do what they wanted. I was quite angry - really angry. I sometimes get angry now because I still think why me, but like my friends, they could have their dinner any time they wanted. They didn't have a tight control. They didn't have to have, like, injections, so I was quite down really, and that's what probably prompted me to say to the doctor even more that I wanted help, so I weren't really happy with how things were going and I just thought - I didn't really see my future, I just thought it would be - I didn't really look ahead because I didn't think that I'd be capable of doing stuff for myself. I just weren't happy at all, but now I'm just completely the opposite.

So you were lacking confidence?

Yeah, very much so, yeah.
 

She was very dependent on her parents until she started to do her own injections. Now, her parents have become more 'independent' going out & leaving her to look after herself.

Did you talk to your parents about how you were feeling?

Yeah, yeah we used to talk about it and stuff, and they were like quite positive saying like, 'You'll be able to do it some day, you know, you just need the help', but I still was uneasy about it because I didn't think I'd be able to do it at all. Like I said to the counsellor I didn't think I'd be able to - able to do my injections, just because of having to take on the responsibility and stuff. But, no they were really supportive all the way through and really helped, so, I'm quite lucky, yeah so'

Now tell me in which way your parents have had to accommodate to these changes?

Yeah, I think in a way it - it took them for six in a way because every day they were used to injecting me, and it feels weird for them not to now, because it's nearly, nearly - next July nearly a year, and I asked them the other day and it feels weird for them because they don't have to look after me as much as they used to, like doing my injections and stuff like that. So it's - but I think they've become more independent. Like they don't mind going out or whatever and leaving me with my friends, and knowing that I can loo after myself now, whereas before they were a bit scared to- to let me do stuff, because they knew that I was so dependent on them, but I think in a way they've become more - they've become more - like confident, so yeah, it's changed for everyone, not just me. Like it enfolds the whole family. It sort of changes them as well, so it's a big change.

So they were anxious before because they didn't know what -

Yeah, yeah, they didn't know if I knew how to look after myself and stuff, but now it's the opposite. They know I can look after myself so they're fine at doing what they want to do, so' yeah.