Diabetes type 1 (young people)
Managing diabetes as a teenager
Most of the young people we talked to said that they had found it very difficult to control their diabetes when they were teenagers. They said that their control often went haywire during puberty because their hormones were 'all over the place' and also because they didn't want to have to think about diabetes all the time. Those who were diagnosed at a young age said that their diabetes was 'better controlled' before they reached adolescence.
The young people we talked to said controlling diabetes can be difficult at first and it's never going to be a 100 per cent perfect, but having a positive attitude helps. They wanted others to know that diabetes doesn't have to determine who you are and what you can achieve. The only difference between a diabetic and a non-diabetic teenager is that diabetics need to do more planning.
Says that with diabetes you have to plan more but that is the only difference between you and a...
Yeah. I think it is because of my aim. I've always been, I've always felt very strongly that I don't want the diabetes to overtake me. I always want to be the one sitting on top of it. So as I said I can go out and do all these things and don't worry about it.
Yeah I've always tried to stay on top of the diabetes rather than it being on top of me because I've wanted to do things as anyone else without the condition would do. And at the end of the day you're not any different to anyone else and there's no reason why you can't do anything that any person without diabetes can do. I'm yet to find something that I haven't been able to do because of my diabetes. It's only really the issues of independence and spontaneous decisions to go out and do something that you have to control. It's not the doing something in itself. I mean with diabetes you do have to plan more. You have to know what you're doing on specific days so that you can prepare for it. So that you can take your insulin to certain places but it's only the planning. It's not what you're doing in the day that I've found is the controlling factor because yeah, as I say, any diabetic can do anything. It, it's not a matter of it being physically constrictive or anything like that so I think it's important that I go out and do anything normally as anyone else would so that I fulfil my aim to stay on top of it.
Do you think it has something to do with the fact that you were young when you started to manage your diabetes?
Yeah. I mean [sigh] I suppose it is although I still had that period before age 11 when I could go out and do anything and do what I wished to do at the time. So it was a definite change when I was diagnosed and it was a decision that I had to make to plan more, to keep control of my diabetes. But at the end of the day it wasn't really a decision because there's nothing else you can do if you want to stay on top of it, if you want to keep good control you have to plan so that you keep this constant blood sugar level.
Says that diabetes has made no difference to his social life.
And also things like taking your insulin around with you. I have like a very small bag which I carry around when I'm out of the house, almost everywhere. Of course not at school, because I've got my school bag and I can just put it in there. But I usually carry around my fast-acting insulin and my blood sugar testing kit and a few tissues. Which is like nothing major, but you need to carry them around with you anywhere. Same thing with bringing around glucose tablets. When you're at school, when you're at a friend's, even at, even places where you could never imagine you'll get a hypo. If you're stuck in the middle of a field somewhere and you start having a hypo and nobody has any food on them and you don't have glucose tablets, you'll be in trouble. So you need to prepare yourself for an eventuality of something like that occurring, even when you don't expect it. Yes.
So the social aspect is the most difficult thing for you?
In terms of organising and'?
It was initially.
But you very quickly get used to it. You very quickly, it comes, there, to me now there is no difference in my social life now that I'm diabetic. I do exactly the same things with all my friends as anybody else does. The only difference is I'm, I've got a bag around wherever I go. Or, and that at meals I'll be injecting myself. But you don't need to run off unless you're very, if you're, if you're quite sensitive about people watching you inject. Then you can just like go off to the loo or something and do it there. But I'm okay with it and I just do it at the table. It takes 20 seconds and it's just something that you do.
Rebelling could include eating too much or too little, not doing blood glucose tests and eating the wrong kinds of food. Eventually they found out from experience that doing these things made them feel terrible. Getting to grips with all the different parts of their diabetes control could take some people longer than others.
The effect on families and parents
Many young people talked to us about times when they'd rebelled against their parents and families as well as their diabetes. Looking back they realised they had made life difficult for everybody, including themselves. Some said that they got frustrated and angry when they couldn't control their diabetes well, especially when they were having lots of hypos and couldn't work out why.
Many said they were confused by their different feelings or symptoms and whether these things were part of having diabetes or just part of being a teenager - so they didn't always read the signs right. Feeling moody or argumentative for instance was seen by some girls as being part of PMT (premenstrual tension), rather than being a symptom of a hypo.
Some talked about how they didn't want to face up to diabetes when it stopped them going out on the spur of the moment, and when it got in the way of things they felt passionate about, such as sport and surfing.
He was finding it difficult to control his diabetes and all he wanted to do was to go surfing.
So I was surfing and everything and when you do sport it was just getting pain all summer. I was like surfing and I thought, oh I'm not having surfing and like being, like, really low and having when your muscles relax and you like have loads of hypos and it's too much to deal with, so I thought, oh I'll start rebelling and being high all summer, and just making the family really miserable and horrible, and everyone was getting quite fed up with this grotty teenager that was trying to ruin their lives and just wouldn't take any insulin and just thought oh I'm going to surf and, not worry, just won't have any hypos or nothing. And so, I decided to do that and when I went back to school I - doing it more and more until one night I came back and I was just a complete mess and came back and my sugar levels were about 32 and I was on the rocks and I wouldn't eat or nothing and everyone was having a go at me, so I decided to pick up a piece of wood and just start smashing everything, and so everyone was having a go at me. I just didn't want to know and so we had to have the coppers round, to sort me out, and I weren't really happy and - I kind of still went on, and then I had to go to the hospital to the clinic and they all started talking to me, and they go oh your HSBC1's 9.3 and at that time that was the worst one we've ever had, so' And then I got more irate so I was - I was just really fed up again, and it was getting more and more harder and harder, and highs and just - and when your HbAC1 gets bad it's just like really irritating, because they want you to have it in one range. Anyway it's mostly to be seven and it - it's still solid now to get it there, and really hard to keep your sugar levels normal, because if you have your good HbAC1 - keep the red cells working, stops you from going blind. So, not only was I making my family miserable, I was making my body parts - ruining my body parts and everything,
But I want to be normal, so - but if you're scared of having hypos, do not, do not be high all the time because in the long run you will be screwed. Your eyesight will be gone, or you'll be on a dialysis machine. You'll be in the middle of nowhere, thinking what's happened to me.
The rebelling period. Tell me what were you thinking at that time, or how frustrated you were'?
I just wanted to be cool at that time.
Yeah, I wanted to be a surfer. I wanted to be a pro-surfer, do it all and I don't need - I was like - do it all 'cause I - I didn't want the hypos and that. I just wanted to surf all the time, and it's like a passion and if you're in a passion with anything you want to do that more than you want to do another thing. That was just the main thing. I wanted to just surf and have no problems, and I thought I'll just keep myself high. And I was about - I don't know twenty, it's really, I'm really amazed now I did that actually. I can't believe I kept myself that high. I was just on a different kind of planet and it was real, real high and I was just surfing all the time and being high and everything, and then I had a bad HSBC1 again and I was sick and - at that - for the second time, and ill agai
She 'rebelled by eating what she shouldn't and putting on loads of weight until a doctor at her...
So it was kind of a shock to your system, the fact that you were confronted with this?
Well I mean I talked about it with my parents but I kind of just. I was a teenager, you know. It was how I rebelled. I didn't drink. I didn't smoke. I didn't take drugs but I didn't look after my diabetes. It I guess I'd had years of people saying you've got to do this, you've got to do that, you've got to make sure you have sugar, you've got to do this. And I always did all those things. I never didn't inject myself or didn't have sugar but I also ate whatever I felt like and ignored it as much as possible. And so yeah it was a bit of a shock at the time but like.
Were there arguments or situations'?
A little bit. I mean there were arguments. If they talked to me I'd tend to burst into tears but at the time I was also doing very well at school, running youth clubs, doing, you know like, all my friends were having arguments with their parents about something. A lot of them about staying out late or about this, that and the other. I was kind of doing really well on all the normal things that teenagers grow up on and this was the thing that I picked. So there were no more arguments than there were with any of my friends parents I guess. So it never felt like [sneeze], like that much of a problem. I mean I would just, ignored it so I refused to talk about it I guess.
I mean I used to get Balance, the Diabetes UK magazine and it would always have, you know, losing limbs and this, that and the other and I used to think this is ridiculous. I choose to live my life positively and I don't want to think about this. I'd rather, you know, not let diabetes win and do whatever I want to do. But I knew, you know, I knew what I was doing was stupid. I think yeah as I was, once I got to sixth form and kind of realised that I just didn't feel very well. And I'd go to the doctor and they'd do all the tests and I was always fine you know, I'd always got circulation and could feel things but every time the tests were done I was always like, [oow ya ooh] what if I fail or whatever. And I think it was when the doctor said, 'Look this is serious' that I realised that actually it wasn't something to think about once every six months when you go to hospital. It was my life, for the rest of my life. And guess it was just because I started being aware that I wasn't going to stay a teenager forever and that, you know, I did want to be healthy for, for as much of the rest of my life as I could be.
Many young people said they had gone through times as teenagers when they felt frustrated, fed up and even depressed because of their diabetes, but for many these feelings were short-lived. They said they appreciated having more independence from adults in their lives, but at the same time they needed plenty of emotional support from their families, friends and medical teams. A few young people said that having diabetes had caused them other serious problems in their teenage years.
Two years after diagnosis she started to feel 'fed up' with her diabetes and became very self...
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?
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.
In her teens she felt different and depress and started to eat things she wouldn't normally eat...
When I hit my teens and I went to high school I started to feel really quite different. I actually wanted to know if there was any other types of insulin that I could go on that could make me have a bit more of a relaxed lifestyle, because I was still on a very rigid regime. So I had to eat at certain times, eat certain meals. I wasn't allowed certain things. And by that time I think it was starting to wear on me the fact that, you know, I wasn't allowed to just eat sweet things and pizza and things like that, you know, that all the other kids were having. I also had dreams of becoming a performing artist. And eventually I, in hindsight I know that I became depressed, feeling like this. And my control started to slip because of teenage pressures and I was starting to go out and, you know, 'Oh, I'll be okay just having this sweet and this chocolate bar. And I'll be all right just missing this injection just this once'. And my control started to slide.
Going through adolescence, obviously you do, you do different things. You start going out more, mixing with different types of people. I didn't really talk about my diabetes a lot to other people. So they weren't really fully aware of the situation that I was in and what I needed to be like. They just thought it meant that I didn't have to eat sugar, or maybe my sugar went low now and again and I had to eat a Mars bar. I didn't really tell people around me. Which I probably should have done. I should, probably should have made people more aware. But I didn't.
He was unable to control his blood glucose levels and felt depress and lacking in confidence. He...
So it took about a month or two to adjust to a right, the right amount of insulin to take per day. So I ended up on small amounts and to be honest it was quite easy at the beginning because the first year they had, they said it was the honeymoon period where the body was still kind of producing a little insulin in the body and thats good. And that was easy for me. But after that time when I was reaching around 13 and I started growing up, it was much harder to control. And I found I was taking much larger doses of insulin. And I jumped up to 20 units and then to 30 units and then changing insulins and I was taking a base insulin and a short acting insulin. And from then I moved on to mixed insulin because I was taking two injections in the morning which was a nuisance and it took up more time. And I had to inject twice in my leg. And it was getting quite painful because my leg started swelling up and the same with my stomach. My stomach started swelling up. And so I took Mixtard, which is mixed insulin and it helped me with the injections but still I was experiencing the problem where there was a cycle that is common with a lot of diabetics where you take insulin in the morning and then you get a hypo mid-morning and then you have something to eat, and then before lunch it becomes too high and you take more insulin, low again before dinner, you eat too much. And then you take, then you take more than you need in the evening. Then you wake up in the morning and in the middle of the night, and you wake up with a high and it gets really frustrating and having a high blood sugar, you get frustrated but also the feeling, just, it gives you a feeling of you don't have any confidence and you don't really, can't be bothered, you have no energy, literally, to you know, take control again.
And it's, it got quite dangerous because during the years when I was experiencing lots of high blood sugars, not as much low blood sugars, I was getting quite, well depressed, not intensively depressed but quite sad about it secretly. I wasn't telling everyone about it. I was in moments when I had a high blood sugar and I was getting quite frustrated I might lash out and buy chocolate and eat it regardless of my sugar levels. And it was it was quite serious. I after about a year of that I explained to my dad and he is the one who I used to go to for these problems, because he was good at very calmly assessing a problem and he helped me through it. And only recently at around April this year, I went to a doctor, a private doctor in London and he suggested that I completely move onto another insulin regime.
Making the transition from being 'looked after' by parents to 'taking control' for themselves was a major issue to most young people when they were teenagers. Coping with injections could often cause arguments in families and gave young people yet another thing to disagree about with their parents. When and how to take control for yourself was seen as a difficult thing to do and there wasn't necessarily a right or wrong time.
Says that as a teenager you might find diabetes more difficult to live with than it actually is...
Can you remember what you were arguing about?
Probably that she didn't think I was controlling it well enough. But it's easy to say that from an outside perspective you know. When you're, it's different when you're the one who's actually you know got the diabetes and you know it's all very well from outside perspective. You know all the things that you're supposed to do but when you know when you've got it it's a different matter so probably that kind of thing [laughs].
Well I think when, probably when I was younger I, you know my sort of HBA1Cs were coming out a bit lower than [laughs] than perhaps they were you know while I was a teenager and but I mean they were always saying, 'Oh you know when you're a teenager it's too be expected, they will go up a bit.' But now I think I'm trying to bring them back down again, kind of get them a bit, I mean they've not been terrible, kind of in the 8s, 8.5s that kind of thing whereas before they were may be more around 6. But I didn't notice any sort of, may be because I didn't pay enough attention to it but I didn't, I didn't sort of sit there trawling through the you know where I'd written down my blood sugars and thinks oh no you know I'm not getting very good control. Because I think if it had been really bad I would've noticed but because it was kind of probably fairly average, you know it wasn't terrible so I didn't really, you know I didn't really find it that difficult to manage it I suppose.
Did your mum, was looking at your records and being horrified?
Yeah, 'It was much better when I was, you know looking after you, you know [laughs] since I left you to do it yourself they've gone a lot higher,' [laughs]. But you know it was, I suppose it's easier to, when you're younger and you've got your mum kind of telling you what to do than kind of, but when you know it's like when you're a teenager you kind of I don't know you'
How did you accept the criticism?
Probably not very well [laughs], but I, she's probably right it was better when I was younger and I don't know whether that's due to the fact that you know I was more careful then or you know I had more guidance from my mum or just because when you're a teenager you know things are a bit crazy and a bit more difficult and so I don't know really what the reason for it is but they probably were a bit better when I was a bit younger. But you know I think that now that I've sort of finished with my teenage years I am paying, because you know since I did the Insight course and stuff I'm kind of trying a bit harder to, without becoming obsessive about it, without kind of making it into a big deal but trying a bit harder to watch what's going on a bit better and you know actually actively try and bring my HBA1C down a little bit rather than kind of going,' 'Oh well it's a bit high but it's alright you know.'
Might be that people see it as more of a hassle and more of a difficulty than it actually is and so may be that's what's kind of you know making it difficult for people, I don't know. And also I suppose it is quite difficult because when you're a teenager you have lots of arguments with your parents so that might be something, another thing that you would argue about and things like that. So, and if your parents are nagging you then you just think I don't want to do it, just be quiet and leave me alone and so I suppose that can be a factor may be in some people. So, but I don't know re
To him diabetes control means to take over his daily care from his parents and to stop worrying...
Struggle when you began this process of transition because you were taking over from your parents?
Yeah, oh yeah because, yeah we would argue a lot more back then because they think, you know, I, they were telling me what to do and I was beginning to get an idea for myself of how to do it. And we'd end up arguing about it quite a lot. But, you know, now that I've taken over it for myself you know, there's no, not anyone there to challenge me except for the people at diabetic clinic and. You're overweight and all that kind of thing which I don't like. Yeah so.
Tell me what would you have done differently regarding your diabetes a few years ago?
I would have probably started doing it myself a lot sooner if I could have done. And I was just so scared of doing it myself because you can, you know you're going to, you know when you're going to put it in. If someone else is doing it you can look away. But if you're doing it yourself you're, you're much more conscious of injecting yourself and taking your blood sugars and everything.
What does to be in control mean to you?
Being in control, it means you know where you are. If you know that you're in control then you can just forget about it. You don't have to worry about it because, you know, if something is wrong they'll just, they'll have, you know, just go fix it. If you're not in control you're worrying all. And I can, you know, are they going to, is it going to be ok? Are they going to get it right, are they going to get the right mix? Do they know what I've eaten today or I've done today? That kind of thing. Just being in control takes everything off your mind I guess yeah. If you have more responsibility it makes you feel more at ease I guess with the, with what you have to do, yeah.
Says she was in a catch 22 situation because she wanted to be able to control her diabetes but at...
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'
Some of the young people we talked to said that the key to good control is to 'balance the insulin dosage around your diet', but many people said it took time to get the balance right and some only found the right way to manage their diabetes through trial and error and by making mistakes.
Some people had been sent on special courses to help them understand and achieve better control (e.g. TIFA, DAFNE, Insight), and found them extremely helpful. (See also 'Diet and diabetes' and 'Patient Education Courses'.)
'Controlling your diet' was another tip, and a young girl said that what worked for her was to stick to a set diet that hardly changes except when she goes out to dinner.
Says that diet is very important for diabetes control and thinks that she has good control...
I understand that, the basic principles of carbohydrate counting. Whilst I don't do it rigidly for every meal, I understand. And I seem to, with me because I have a diet that's quite consistent, I eat the same sort of breakfast cereals and sort of things like that, I understand, my insulin doses don't have to be adjusted that frequently. I don't really adjust them. Unless I was going out for dinner and I'd have a big dinner, say a three-course meal for dinner, then obviously I'd do more. But because most days I just have the standards, standard things to eat, I don't find that I need to adjust my Novorapid dose that much at all.
So that may be one main feature in your experience that, the fact that it's quite constant?
Yes, it is, yes. I'd definitely say it was constant. With my diet certainly I don't, I get things that I like and if they work with the insulin dose that I'm injecting I'll continue to eat them and continue to inject the same amount of insulin.
I don't want any problems like blindness or things like that. I don't want any problems with my diabetes. So to have good control and look after myself is vital if I'm going to remain in good health. And also because I've got a lot of plans for my future, what I want to become, all things like that. It's important. Like I'm, I'm only just beginning my life. I need to keep my diabetes controlled so I can fulfill all what I want to do with my life.
Young people stressed that having the type of insulin routine that suits you is very important (see also 'Finding the right insulin regimen for you'), because better blood glucose control will have a positive impact on your whole life. One young woman said that having control of her insulin has made her much more confident.
Now that her control is better she feels more confident about telling others about her diabetes...
And then after a year, I mean, the change was just amazing. And there were still things I didn't know after a year though with the pump, you know, there's things ' it wasn't until a year after that I started learning about the square bolusing where you can have certain amount of units, hit then and then two hours later have that. And that did take awhile but I mean getting used to it in the lifestyle was quite hard, with clothes [laughs].
Because you have to have them on like on the side or you have to have pockets or something, which was quite annoying. I didn't ' I don't think I wore a skirt for awhile because you had to click it the side of your skirt and I just rather just have it in my pocket.
So you wanted to hide it?
Yeah. At first I wanted to hide it, I was sort of a bit wary of it because before I don't know if all diabetics are the same. But when I didn't like telling people that I had diabetes, I felt a bit weird about it. Then to have something on the side of you and then they'll realise that and you'll say, 'Well I've got diabetes', and they'll, they're going to start asking questions. And when I was younger I didn't want that. So it took about a year to sort of really show it out and then eventually I just thought, 'Oh show it'. And I actually find it lot easier now to explain my diabetes than I did before... you know, I just say, you know this is my pump, the insulin does this and it a lot easier to explain to people than when I had to explain injections and all that and why'
So were you a bit shy at that time?
Yeah. I was quite a shy child as it was, at that age. So to have that as well was just ' it didn't really help. But it was' I mean I told a lot of my close friends you know, I had to anyway because if I ever had anything wrong with me, they had do something. But I did find it difficult to tell especially when I was meeting new people and I was like ' because when you're that age you think, oh if you' thinks you look' well they'll think you're weird and they won't like you and things like this. But' my attitudes have changed a lot now, it's kind of the first things I say now.
Yeah I was sort of doing my GCSEs and I was' I mean everyone knew I had diabetes and things like that. But it wasn't really until then that I started feeling confident with it and you know, wasn't really bothered about it. I started wearing different clothes [laughs] and things like that which was strange for me. But it was' it was kind of like a big change for me.
And you know, I was able to say, yeah, look I've got diabetes, don't care, you know, so think what you think. But that's me at the end of the day and not it's just' I mean it was ever since I got the pump, I was changing anyway, you know. I was' my ideas on it was a lot better than I was before.
I wasn't as afraid to admit I had diabetes than I was before I had the pump. But I mean
Last reviewed December 2017.
Last updated December 2017.