Interview 11

Age at interview: 20

Age at diagnosis: 2

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. Currently, she is on Lantus and Humalog.

Background: University student; has a boyfriend; living in shared student accommodation with three other friends.

She was diagnosed with Type 1 diabetes at the age of two and says that she has never known...

Yes, well, I was diagnosed when I was 2. So I've never known anything like really different other than being diabetic. So I guess I kind of accepted it as part of who I am and I never had an issue with it when I was younger. Like initially of course my parents like were like completely controlling it. But they taught me early on to do my injections and apparently I did my own injections by the age of 4. And like, yes, gradually as I grew older I took more and more control of it myself. I think because there was never a major issue made of it I didn't feel that being diabetic made me any different or that it was a restriction on me or a problem. I just kind of got on with it.

She has just started attending a young adult clinic and feels good about care there because they...

How does it feel sort of to change from one clinic to another? What have you noticed that is different?

I was really worried about it at first because I was so used to my consultant at home and my diabetes nurse at home and like the way they did things. And I was wo-, kind of worried coming here that I wouldn't get on with the people, that it would be completely different and that they wouldn't kind of understand me and like how my diabetes works. But, yes, I mean I've only been to the diabetes clinic here twice, and both times it's been a positive experience. And...

Positive, what do you mean by positive?

I got on well with the consultant and felt that they listened to me and understood what I was saying. And like I also noticed kind of the difference between like being in the children's clinic and being in the young adults' clinic. Because even though my consultant at home didn't like treat me like a child, obviously he was more used to dealing with young children. So that obviously had an input on how like he treated me. Whereas here they're used to treating young adults. At first I, like the first appointment I found that really strange, because it was like left kind of like more up to me and I had more kind of say. And the consultant didn't kind of sit there and tell me like what I should be doing. He kind of asked me what I felt I should be doing and how things were going and'

Was it a bit frightening to start with or not?

Yes, it was. I mean I was also like quite scared about it because of what was going on with my eating disorder and my diabetes being totally out of control. And I was really worried that like they were going to just be really mad at me. And I don't know really what I was worried about other than, yes.

What was their attitude towards you?

What, at the'

When you told them about your eating disorder?

Well, they already knew, because it had been my psychiatrist that had like organised for me to transfer to the diabetes clinic up here. So, yes, the consultant knew what was going on and he knew that I was in a bad place. And so that really helped because I felt that I didn't have to explain everything from the beginning. And like as I spoke to him it was clear that he'd obviously like taken the time to really read my notes and to talk to the other people involved in my care.

So that was nice?

Yes.

You found that quite reassuring?

Yes.
 

Though she was worried about leaving her original clinic, she was reassured by her new consultant...

How does it feel sort of to change from one clinic to another? What have you noticed that is different?

I was really worried about it at first because I was so used to my consultant at home and my diabetes nurse at home and like the way they did things. And I was kind of worried coming here that I wouldn't get on with the people, that it would be completely different and that they wouldn't kind of understand me and like how my diabetes works. But, yes, I mean I've only been to the diabetes clinic here twice, and both times it's been a positive experience. And...

Positive, what do you mean by positive?

I got on well with the consultant and felt that they listened to me and understood what I was saying. And like I also noticed kind of the difference between like being in the children's clinic and being in the young adults' clinic. Because even though my consultant at home didn't like treat me like a child, obviously he was more used to dealing with young children. So that obviously had an input on how like he treated me. Whereas here they're used to treating young adults. At first I, like the first appointment I found that really strange, because it was like left kind of like more up to me and I had more kind of say. And the consultant didn't kind of sit there and tell me like what I should be doing. He kind of asked me what I felt I should be doing and how things were going and'

Was it a bit frightening to start with or not?

Yes, it was. I mean I was also like quite scared about it because of what was going on with my eating disorder and my diabetes being totally out of control. And I was really worried that like they were going to just be really mad at me. And I don't know really what I was worried about other than, yes.

What was their attitude towards you?

Well, they already knew, because it had been my psychiatrist that had like organised for me to transfer to the diabetes clinic up here. So, yes, the consultant knew what was going on and he knew that I was in a bad place. And so that really helped because I felt that I didn't have to explain everything from the beginning. And like as I spoke to him it was clear that he'd obviously like taken the time to really read my notes and to talk to the other people involved in my care.

So that was nice?

Yes.

You found that quite reassuring?

Yes.

When she started injecting insulin regularly again she experienced hypos-type of symptoms even...

And what happened, I like, yes, I was taking my insulin more regularly, but I was having really severe hypo symptoms, even when my blood sugar was like really high, because my body had got so used to my blood sugars being like in the high 20s and above. And so as soon as I took, like started taking a more normal amount of insulin, I'd get like the shakiness, dizziness, disorientation and everything like when my blood sugars were like 18. And so that was really discouraging because when'.

That usually happens when'?

Yes. And like although I like knew that my blood sugar wasn't actually low, the only way I could stop those feelings was by eating something. And that was kind of eating outside of what I'd planned. And so that felt out of control, which like made me feel really bad and like didn't help with kind of sticking to a routine and things like that. And so then I kind of didn't want to take my insulin. So I spoke to Dr [name] and she got in touch with the diabetes team. And at first they were like, 'Oh, we don't really know. That's really unusual'. Then she spoke to somebody who had treated a girl with like similar problems to me. And what they had done was gradually, gradually increase the amount of insulin they were having. So that, like at first they'd aim to have like the blood sugars like in the 20s for a couple of weeks, and then down to kind of between 18 and 20, and then between like 16 and 18, and keep, and doing that gradually so that the hypo symptoms wouldn't keep happening. And so that's kind of what I'm working on at the moment. So I'm like taking my insulin regularly most days. There are some times when I still like skip the entire injection, but most of the time I'm like taking some insulin and like, yes, working on gradually bringing my blood sugars down.

How are your blood sugars at the, at the moment? What level are they?

Like between 16 and 18 most of the time.
 

In her early teens she found it difficult to have the snacks required by her fixed insulin...

Anything else significant?

I guess like when we were doing PE or games I usually had to have like something to eat beforehand. And like I kind of didn't like that because it wasn't at a time when everyone else was eating something. And, yes, I kind of had issues by then about eating anyway and so I didn't really feel comfortable with that.

How old were you then?

I think I only became like aware of that kind of when I was 12. I mean I'd had to have snacks and stuff before then, but I didn't really mind that.

When you say 'issues about eating' what do you mean?

That was kind of when my eating disorder kind of started to develop. But it wasn't kind of anything major then. I think like the insulin regime that I was on like required me to have like kind of very controlled like times of when I was eating, and I felt like I was eating constantly all day and I didn't like that. 

Which type of insulin?

I can't remember what type I was on then. I know I was on four -

Four?

- four injections a day by that point I think.

Ok.

And I was on, oh, what was it? The long-acting one, I was on -

Lantus?

No, I've only, I'm on that one now. But I was on, what was it? Novolog (NovoRapid?) or something for a while and Insulatard for a while. 

And those were the ones that require you to eat four times a day?

Yes. And like I was having like breakfast, snack, lunch, like afternoon snack, then a late afternoon snack, then dinner, then something to eat before I went to bed. And I stop, I like stopped having my snacks because I didn't want to be eating so much. So then my blood sugars kept going low all the time. And so that was the kind of, when we went like back to the diabetes clinic and reviewed things with them and they then put me on the Lantus and Humalog.

When was that?

I'm trying to think.

Take your time.

Three and a half years, it might have been more than that, four. I know they switched my insulin around several times before they put me on the Lantus.

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

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

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

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.
 

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

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.