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Diabetes type 1 (young people)

Messages to other young people with diabetes

Diagnosis and Learning about Diabetes Care

  • Keep positive, to be diagnosed with diabetes is not the end of the world.
  • At the time of diagnosis it's obviously quite a big shock and it feels like a really big change to your life, but as you get used to it you'll realise that it isn't really all that big a change.
  • Make sure you've got a good doctor. If you don't like the doctors you've got, maybe try and find another one because it is really important you have a doctor you trust.
  • If you have questions in between check-ups or problems about control and you are not quite sure how to handle it do ask for help!  
 

To be diagnosed with Type 1 diabetes is not the end of the world, you will get used to living...

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Age at interview: 25
Sex: Female
Age at diagnosis: 24
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I suppose what would have helped me at the beginning was to have someone just say, 'It's, you know, it's all right. It, you know, it will be okay'. So I think, that's what I'm saying, you know. You, you might have all these questions and worries and things and, you know, you might think it's the end of the world. And it's really not. It's just something that you've got to make a part of your life. Which is easier than you might think, than you might think it is. You know, there's lots of help out there and advice, and it will become something that you just do naturally everyday, you know. You've just got to get on with your life, not let it stop you. At the same time not, don't, not to forget about it. But, and I think it's also important not to hate it, you know. You've got to work with it, you know. It's a part of you. So just, you know, you have to just learn to accept it. And also it's important I think to try and find out as much information as you can yourself. It will all be there for you, but because, you know, you're the person who's got responsibility for managing it. But it's, you know, it's certainly, it's not stopped me doing anything in my life. So that's what I'd say to other people really. You know, this will be a confusing time, and it's, it can be upsetting. And it's a bit of a leap on to the unknown. You don't know what it means. But, you know, overall it's, you know, you get used to it, you get used to it. And it's not the end of the world.

 

Just learn to be patient because when you are starting to managed your diabetes your blood...

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Age at interview: 19
Sex: Male
Age at diagnosis: 14
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Yeah, just be patient, really, because what I've found is sometimes you think your sugar levels are going to be good, and they can be a bit higher than normal, and I used to get frustrated when I was younger, because I used to want perfect levels all the time, but yeah, you've just got to learn to be patient and if you go low, don't panic, stuff like that, just self managing it. You've just got to take your time, get to know it better, stuff like that, and then once you're okay with everything then just lead a normal life and just get on with it really, that's what I try to do.

And what about asking questions to the health professionals?

Yeah they're always there to help so if you have a question you might as well use them and ask them, because they tend to have all the answers, so, yeah.

Probably not to worry about it if they - if you get asked to change your insulin regime to do it because it's only going to benefit you, and I mean every time I got asked I've always changed regime - I've changed three times, I think. I've had three different styles, and everything's a challenge, and I sort of relish challenges really. Yeah just to get on with it and not let it rule your life. You just have to make allowances and stuff, so, don't rule your life by your condition. Sort of live your life and then adapt it to the diabetes.
 
 

Katie feels that ‘there is a lot of support out there’ and says that if going to university you should take everything you would and ask for a fridge to store your medication.

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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I know it’s quite an easy thing for me to say but just not to worry. There is so much support out there if you need it and contact your hospital. Also that using the pump is really helpful. If you get offered one or you get the option to use it I think give it a go if you don’t like it you can always go back to insulin pens and just tell your hospital that it’s not for you. But if you get the opportunity I’d definitely give it a try cos there are different things out there and different options that you can have. I never wear mine on holiday for instance because I just prefer not to and it shows that you can be flexible with your treatment. So just ask, make sure you ask your hospital about different treatments available for you.

Going to university make sure you’ve just got everything with you. You can always order things with your new doctor so just transfer to a doctor at university and get everything added to your prescriptions as soon as. So then if you have forgotten anything you can get it pretty quickly. Make sure you remind your university to have a fridge available as well. They are really important to make sure you keep your medication separate and not keep it in a communal fridge. Like your flatmates should be fine but it’s not a good idea to leave it in the main fridge because you don’t know what could happen to it. So I’ve always got a fridge in my university room to make sure my medication is in there.

Ok and it’s just for you?

It’s just for me. No one else can use it. It’s in my room. My room is locked when I leave so nobody else can get in there which is great. It’s just got my medication in it pretty much.

Ok and whose idea was it to ask the university for a fridge? You doctor told you, your consultant?

Every university will be able to give you a fridge. You just need to make sure you remind them when you apply for halls. But you need one. I did. I think it just went through on my form. So I had to fill in a form about myself and any medical conditions and they will then sort that out for you but just make sure you remind them so that when you arrive it is there. And it makes the process a lot easier than having to go backwards and forwards and make sure you’re remembering that they’ve ordered one and things like that.

Ok so did you know before applying to uni that you were entitled to have?

Yes I did but I think some people don’t know about that. I only knew because my doctor told me and my brother’s also been to university. So I’ve kind of got experience through that. And when you look around halls they sometimes tell you what you can see one in someone’s room. And that kind of reminds you that you need to get that sorted. 
 

Do listen to what your body is telling you and back it up with blood glucose tests. Do look after...

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Age at interview: 17
Sex: Female
Age at diagnosis: 1
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I think [pause] definitely listen to what your body's telling you because ok it might not always be right. And you have to properly back it up with blood tests but if you feel low and you don't have access to a blood test meter kit immediately and say you've just eaten a massive meal. You still feel low. Your body's telling you, you feel low well listen to your body. Have sugar. Doesn't matter that you go, maybe go a bit high you can do insulin later but generally I say listen to your body. Do blood tests to back it up but your body does, or mine does tell, tell me when I'm high or low and things like that and what you should do.

Don't worry [laugh]. Really it's' My friend thought she was diabetic because she was going to the toilet a lot, drinking a lot, having headaches sometimes. And she was really scared. She was like, 'No I don't want to be a diabetic'. She thought it was a real burden. And I guess at first it does seem like you're doomed for life. You, [sigh] you might have your, if you don't look after yourself you might be blinded or have your legs amputated or not be able to have children but if you think about it everyday life is like that. And you could like step out of your house and be run over by a car. So it's not the worst thing that can happen to you. Seriously it, it may seem like a big thing but you don't have to do that much in comparison to what some other people have to put up with so. It's not that bad.
 
Self Managing Diabetes
  • Take control of the management of diabetes yourself as soon as you can. Once you start to manage your diabetes everything seems better because you're in control. 
  • It's absolutely valid to be upset and it's valid to want to give up. But at the same time there are so many things that you can do and there is nothing that you shouldn't try and do.
  • Always carry something sweet to drink or eat with you everywhere you go.
  • Wear your diabetic pendant when going out with friends.
  • If you go low, don't panic, just self-manage it.
  • Do regular blood glucose tests to understand how your food and insulin interacts.
  • If you have type 1 diabetes kind of symptoms ask your doctor to test your blood glucose level. 
  • Doing insulin injections is not always easy and it might take you some time to feel confident about doing it. Be patient.
  • If you find it difficult controlling your blood glucose levels you will get miserable and you will feel bad but the thing is to carry on and don't give up.
  • The biggest thing is that you have to aim for is good management of your diabetes because it is not your life and health now but in ten, twenty, or more years down the line.
  • Diabetes doesn't control your life. You have to control diabetes. It's just part of your life, it's not you. 
 

The more you learn about diabetes and its insulin treatment the better you will become at...

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Age at interview: 24
Sex: Male
Age at diagnosis: 16
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And that's one of the most important things I think know yourself where you're at and know how to deal with things in your own way, make sure you know what's going on in your own body and then the more you know about yourself and about how insulin works for you and how diabetes works on you it makes you better at managing things and makes you more confident in doing whatever you want. For instance you know I walked up Mount Kenya last year and it was never an issue that I was diabetic because I knew that I was walking during the day so I just didn't do an injection that, that day, I just knew than I'd eat my breakfast, where I'd normally do an injection I'd know that I'd just walk it off during the day. So there's plenty of things so just make sure that you know your own body anyway.

 

Don't be scared and as long as you control your diabetes and do your injections, diabetes does...

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Age at interview: 19
Sex: Female
Age at diagnosis: 17
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I done the skydive last May and raised about '500 for Diabetes UK. Like when I first diagnosed with Diabetes I was, didn't think I could ever do something like that because it seemed that it restricted, it restricted me. But it doesn't restrict you at all in anything you do. I haven't found, it's not stopped me doing anything. If anything it stopped me from eating too much chocolate cake, which is only good [laughs]. But, ye, not to be so scared with it at first because it, it seems very daunting and that you'll never make it but it does take time, you get used it and you get used to how your body reacts to certain things and then before you know it's just second nature and you don't even budge when you do it. It's, if I didn't have to do anything for it now I'd probably be quite, ohh. It's like when I first come off my injections I quite missed them in a weird way. Because I'd been doing them for so long. But just to not be so scared because it's, as long as you look after yourself and do your injections or be on your pump then everything's fine. It's nothing to be scared about.

 

Says that he has lived with diabetes for 16 years and if hasn't stopped him from doing what he...

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Age at interview: 23
Sex: Male
Age at diagnosis: 7
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That it's not the end of the world, you get used to it. Well, I don't even think about it anymore, to be honest with you. It's, it is a pain in the arse, but it doesn't, you don't have to stop doing anything that you do, I don't think, other than maybe a job or career you're looking at, but there's not that many anyway, and they've got a new law in, so it doesn't matter, but it doesn't affect anything that you want to do, it doesn't affect going out, it doesn't affect, I mean, it doesn't affect anything really. There is support and there's support for you, it's not the end of the world. Yeah, you get used to it, I wouldn't, I mean I, you know. I mean, like I say, the issues I've had is none of them have been about diabetes, so, it's just one of them things. I mean, I've had it what, sixteen years, I don't even think about it. And it hasn't affected me in any way [laughs]. 

You can get through it, you can have a laugh - I mean I have a laugh, go out with my mates, it doesn't stop me doing anything and can go on holiday, you know, just, and after a while it's just one of them things. Yes, it's, it is a pain, and I, I suppose to people who haven't got it, but then I've virtually most of the time I forget I've got it, to a point that I don't think it's an issue anymore. Like, when doing things like this, it kind of reminds me that I've got it, if I'm honest with you because I've, the injections become part of life, you just do it. And to be honest, like when they, this cure thing, like when they bring this out I suppose that it'd be weird I suppose to a point I wouldn't know what to do. It would be strange knowing that I wouldn't have to control my insulin anymore. Actually it probably would affect me more, probably put on more weight to what I eat because at the moment I can cheat, you know. It would be weird, I suppose, having that control taken away from you and kind of going back to normal, I suppose. But it's, yeah, it's just one of them things you get used to. That's it, really [laughs].

 

Work with diabetes rather than against it because it is generally those people that do not...

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Age at interview: 27
Sex: Female
Age at diagnosis: 7
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Based on your experience, what would be your advice to other young people with diabetes type 1?

Based on my experience, I think you, the first thing you have to do is admit you're a diabetic. You have to accept that you're a diabetic and that you do have to live your life slightly differently. But it doesn't mean to say you can't live your life. You have to work with diabetes rather than against it. Because if you work against it, it will work against you. And I think also if, if you aren't doing injections and you do know that it's wrong what you're doing, you need to try and find the courage to seek help as soon as you can. Because you won't get away with it, unless you're very very lucky. Which, I've not met, I've not met a bad diabetic who has been lucky. 

There's, I've met bad, shouldn't say 'bad' diabetic, but the diabetics that I've met that don't really control their sugars very well generally have the problems. Whether they're minor or not, you know, whether it's a bit of kidney damage or they've got nerve problems in their feet. Maybe not as severe as mine, but generally speaking the diabetics who don't control their sugars get the complications. And you don't have to. It's a case of finding the right clinic for you and the right people around you, getting the help that you need.

 

Control diabetes, don't let it control you!

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Age at interview: 16
Sex: Female
Age at diagnosis: 5
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Just, just get on with it. I mean my main view on it is that I can't let it control me. And in the past it has. It's this year in particular I've realised that I can't let it control me. I control it. That's the slogan I use. And it's just, you've just got to, you've got to be brave. You've got to deal with it. You can't, you can't block it out. It's there. And it's something you've got to have for a while. So the quicker you learn, the easier it gets. And it has got easier for me. It has got easier. It's not, it's, I mean by no means is it an easy thing to deal with. But it does get easier.

Others can help too!
  • If you have problems with doing the insulin injections don't give up and ask your consultant or GP for help. 
  • Tell your friends that you are diabetic and make sure that they know what to do if you have a hypo.
  • If your parents are nagging you is because they care. 
  • Try not to let diabetes affect you but if you are having problems talk to someone. Talk to your parents or one of your friends or the diabetic consultants or the nurses at the hospital. 
  • When going out socialising you can have just a good time without drinking alcohol. Ask your friends to help you not to drink that much.
  • Seek help if you start missing insulin injections or if you are making yourself sick or restricting your food intake. Don't wait until your problem gets worse. Talk to your diabetes care team and be honest with them. They can't help you unless they know what's going on.
  • If others around you don't like the fact that you've got diabetes, don't want to accept it, then they're obviously not friends and you could do better without them.
  • If anyone thinks that you're weird for having to do an injection, just ignore them.
 

Keep positive and do control your diabetes. And when you feel depressed do make sure that you...

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Age at interview: 18
Sex: Female
Age at diagnosis: 18
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What would be your advice to other teenagers or young people about managing their diabetes or about their attitude to diabetes?

Just keep positive and think that there's millions of people out there that have the same thing. You're not alone. Just make sure you do everything properly because if you do it properly from now it will prevent you from, you know, getting worse things one day. And make sure that if you do feel down talk to someone because it's bad if you keep your feelings in because I find that. If I talk like I'll feel better afterwards. And basically don't let it stop you from going out or from doing anything. You can still study. You can still do what you want to do. Go to parties and stuff. It's not, it doesn't have, you don't have to. It doesn't control your life. You have to control the diabetes. So it's just part of your life, it's not your, your life doesn't revolve around it. So it's just something that you have to remember but apart from that don't let it take over your life. That's what I think.

I think when you have bad days it is good to talk to people be it your mum, your friends, your boyfriend or girlfriend. Because if you don't I think if you hold it in it just gets worse and worse for yourself and you just start feeling down and depressed and that's not a good thing. So I think you should talk to people about your problems.

Have there been episodes in which you have felt depressed?

Yeah definitely, especially when there's other things going on in your life everything just seems like such a big problem and it all just gets on top of you and you break down. But you have to come back up really and just smile and just get on with it.

 

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

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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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. 

 

One important thing is to make sure that you tell others; friends, teachers, employers that you...

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Age at interview: 17
Sex: Female
Age at diagnosis: 3
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The first thing, the first and most important thing is, you have to control it. It cannot control you. And the second most important thing I'd say is make sure all the people around you know. You've got to make sure all your friends know it. It's for your safety. You're not, you don't want to go putting yourself at risk. So the more people know the better. If you're not comfortable with it just tell your close friends. Make sure all your teachers know. And as I said, your employees. And make sure that they know that if you need to get something to eat you leave a lesson or you, you have to leave your desk if you're at work or. You need a break to go and get something to eat. You can't wait until your specified break time. And they should be understanding to that. 

And as I say, friends really, just let all your friends know. I mean it's brilliant I got asked when I was at secondary school to talk about the diabetes in my science lesson. I mean science teachers appreciate it because you know more than they do. So as I say it's for your safety but on control I know it's difficult. I find it difficult but you've got to keep on top of it. It's for your sake. And if you haven't seen someone's rotted liver and kidneys due to high blood sugar have a look, it's not nice. It isn't and if you're squeamish it really will get you to get under control but yeah make sure. And I always carry glucose tablets along with me.

Last reviewed December 2017.
Last updated December 2017.

 

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