Diabetes type 1 (young people)

University and work with diabetes

Many of the experiences of young diabetic people at university are covered in other parts of this site and highlight issues relating to diabetes control in specific situations rather than life at university per se. (See for instance' 'Diet and diabetes', 'Hypos', 'Drinking and alcohol', 'Information about diabetes' and 'Travelling abroad'.) Sixth form students about to go to university said they had asked their diabetic team lots of questions about how to manage diabetes at university.

She asked her diabetes care team about diabetes management at university.

She asked her diabetes care team about diabetes management at university.

Age at interview: 17
Sex: Female
Age at diagnosis: 2
SHOW TEXT VERSION
PRINT TRANSCRIPT
And now regarding, because you're going to university, what were your main questions?

It was just generally like, 'What do I do about getting my insulin from a new pharmacy? Getting a new doctor, should I get one or should I just stay with my GP at home and travel back when I need to visit the hospital, whatever?' Things like that. But they seemed to answer my questions very well.

What did they say?

They said that I should just arrange my diabetic clinic appointments for when I've got holidays, rather than transferring to a new hospital, unless I feel I need to transfer to a new hospital. Put, be put temporarily on the GP's list where I'm going, but stay on the one at home as well for when I'm at home during the holidays. And keep a set of insulin at university and home. Same with blood tests, same with all my medication, keep a spare at home and at university.

Now when you go to, any other questions that you had?

Well, I think that was mainly it, like, 'What do I do?' And it was just things like telling my friends and making sure people are aware of the fact that I've got diabetes, like those in my dorms and stuff.

And what about having easy access to a fridge?

Yes. All the universities know that I have diabetes and they've all contacted me saying, 'We don't usually allow people to have mini fridges in their rooms. But we'll make the exception for you so you can keep your insulin cool'. So they've all been very understanding about that.

Are you going to this university with a friend?

No. So it's going to have to be a subject where I have to like talk to people in my dorm about and people on the course to make sure they're all fully aware of it and they know what to do in an emergency.
 

Katie had an appointment with both, her paediatric and adult consultants. Both advised her about diabetes control at university and asked how ‘she’ was doing.

Katie had an appointment with both, her paediatric and adult consultants. Both advised her about diabetes control at university and asked how ‘she’ was doing.

Age at interview: 19
Sex: Female
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
I stayed with the same hospital and so I just moved up to their adult department. The transfer was pretty good because they did my first appointments with my adult consultant and with my paediatric consultant. So they’d both meet at the same time as well as having me in the appointments to make the transfer a lot more smooth than if I was to just jump up.

What were the main issues?

They talked about the treatment that I was currently on so that the new consultant could get a picture of what I’d been using as my treatment. They also spoke about things that I did to monitor my diabetes and also sport, moving to university and next steps that I could take to make sure that I kept it in control. They talked about quite a lot of things to make sure that I’m ok not just with my diabetes but make sure that I’m ok in myself as well. And they start off the sessions like that rather than going straight into the diabetes which is good.

Ok with yourself, what do you mean?

Just in general like my life whether I’m going out, doing stuff with friends, sports that I’m playing, activities that I’m doing, things like that, whether my general health is good. So if I’ve been to my own GP what I’ve discussed with them, all things like that to make sure that everyone within my medical world is together.

Ok so that they have a full?

So they have a full picture of my medical

Ok, ok. And how do you feel about that? How?

I like that because it means that they’re actually taking an interest in my whole health rather than just my diabetes. I’d say it’s quite nice to make sure they are actually getting a full picture of my health rather than just…

Do you remember what they said specifically about you moving away from home and coming to uni and what type of support you might need or?

I don’t remember specifically. I do know that they tell me that I’ve got their numbers and if anything is wrong I can always call them and they make sure that I have regular appointments back home so that when I have got a break from university I do still have appointments to make sure that they are on top of it as well. Obviously they talk about diabetes and alcohol and the different effects of how that can change your blood sugar quite a lot which is good cos they know that university you are going to do things differently to when you are at home. They obviously talk about food because you’re cooking for yourself for the first time really and then they make sure that you’re not just going to eat trash. So it’s quite nice [ha ha].
The other main issue raised by many young people we talked to was that for the first time in their lives they are solely responsible for managing their diabetes as they live on their own in student accommodation, away from everyday practical family support. At university they have to shop for themselves, decide when and what to eat, and make decisions about drinking alcohol and going out with friends.

When she was applying to go to university she was scared as to whether she was going to be able...

When she was applying to go to university she was scared as to whether she was going to be able...

Age at interview: 19
Sex: Female
Age at diagnosis: 17
SHOW TEXT VERSION
PRINT TRANSCRIPT
How have they coped with you coming to university and have they been a bit anxious?

Yeah definitely.

Can you tell me a bit more?

My mum and dad are quite protective anyway. But I think they were very anxious when I came for the first time about eating well and drinking in moderation. Like whenever my mum calls me she always ask me about my blood sugar levels and how my pumps getting on or how my injections were. But I think that was a big worry for them as when I first came. So yeah' it was a big worry as well at first, when I first got here I was really quite scared. When I was applying for university I was like' I was saying to my mum, I'm really scared because I don't think I could do it on my own. Like I was worried about keeping control of my diabetes without having my mum and dad around but, it's being good, being good for me to be able do it on my own. 

So you have passed that initial stage in which you were unsure'

Yeah. Yeah.

'and worried?

Yeah. 

Okay.

Going anywhere like moves' I worried myself, when I went to Paris for a field trip and I was so worried about, 'Oh have I got all my right medical equipment and stuff'. I still get quite anxious myself and know my mum does and my dad as well. They try not to show it but I can tell [laughs].

Initially, most students said they found it difficult to control their diabetes because their life style changed from a more set routine to a less predictable pattern of living in which mealtimes, going to bed, and activity levels are all increasingly variable. Many said that they found the drinking culture at university became more central to their social lives than it had been when they lived at home (see also 'Highs', 'Drinking and alcohol' and 'Diet and diabetes').

Lydia felt that setting up alarms on her phone gave her a sense of routine and has helped with the management of her diabetes at university.

Lydia felt that setting up alarms on her phone gave her a sense of routine and has helped with the management of her diabetes at university.

Age at interview: 19
Sex: Female
Age at diagnosis: 12
SHOW TEXT VERSION
PRINT TRANSCRIPT
How has it been at uni? I mean

It was hard to adjust at the beginning because there isn’t the sense of routine that you have in sixth form and in school but as soon as you get a routine or what I did is I set alarms on my phone for my blood sugars so that I’d remember to test them at regular times. And that would then remind me to correct my blood sugars if they were high. And that helped quite a lot because my lectures would change every week and I’d, I work in a nightclub as well. So I had, I have late shifts so it helps, just helps get a sense of routine having alarms on your phone and just thinking about it a bit more.

And overall how is your management of your diabetes?

My management is good. It’s not perfect. You don’t, you can’t get a perfect diabetic because every factor in everyday life affects your diabetes but as long as you control it as well as you can, you do your injections and you do your finger pricks you can live a normal life. You can do anything that anyone else can do.

Katie finds that planning and cooking meals in advance and her hockey training sessions has helped her control her diabetes as well as she did before university.

Katie finds that planning and cooking meals in advance and her hockey training sessions has helped her control her diabetes as well as she did before university.

Age at interview: 19
Sex: Female
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
How has that been, I mean the shopping and the cooking and?

It’s, it’s been alright actually. I find Sunday is my day I manage to get some time to plan what meals I’m going to eat in the week and then cook something. So I’ll often, I’ll go shopping on a Friday or over the weekend to get things together and then I’ll cook it on a Sunday. So now I’ve got meals in the fridge or the freezer that I can just get out in the week if I don’t have time to cook something in the evening or at lunchtime in the week. So I definitely say meal planning is the way forward.

Yeah I think I do ok. I cook all my meals myself so I know that the content in the food is exactly what it says it is and that I can count my carbs quite closely. I think that it is nice to go out as well and so I do sometimes go out with my friends for food and stuff like that but it’s always quite easy to make sure you get the right carbs cos the restaurants do generally publish things now. But also if I go out into [city] with my friends at night I have managed to keep my blood sugar ok with alcohol. I don’t drink a lot but if I do I make sure that I’m keeping a close eye on my blood sugar and if I have a drink with alcohol in it I then make sure that I have something with sugar in it as well to keep the balance. I do quite a lot of sport so I play hockey at least four times a week which has kind of helped to keep my blood sugar stable.
Some young people when going to university had specific concerns regarding diabetes control. One young woman found the prospect of living away from home was stressful because she has had several experiences of early morning diabetes coma in the past.

Going to university and away from home worried her because of her episodes of diabetes coma in...

Going to university and away from home worried her because of her episodes of diabetes coma in...

Age at interview: 22
Sex: Female
Age at diagnosis: 9
SHOW TEXT VERSION
PRINT TRANSCRIPT
Tell me about you going to university because I think that's, that's quite an important aspect for a young person with diabetes, in terms of sort of not having your parents there. Not having such a structured life?

Yeah 

How do you cope?

Well initially I was quite worried. Just little things like the only time I've ever gone into a diabetic coma has been first thing in the morning. Normally if I go low during the night I'll wake up but there have been four times in my life when I haven't and I'm aware that this is a problem. So I've always, my parents will always check that I'm awake in the morning and if they've gone out before I wake up they'll just phone me. And it's just not an issue, you know. They'll phone, say 'Hi are you up' and I'll say 'Yes' and that's it. There's just, I don't think about it. So going to university was suddenly more stressful because little things like that you don't have. 

I did make sure that people were aware that if I wasn't in lectures or if I wasn't where I was supposed to be that it wasn't that I'd slept in it was that there could be a problem. which was a bit of an issue at university initially because you don't know people and going up to someone on the first day saying, 'Hi you know if I'm not here tomorrow will you please check on me'. So my parents were great. They phoned me for the first couple of days, probably like three or four days just initially. But very quickly you just get to know people and you know the people on your staircase and they're aware of it. 

And my college was really good because I'd said, 'Look I need access to a fridge to put my insulin in. And they said, 'Well there are some rooms with fridges and they'd try and put me in one'. I got there and there wasn't a fridge. And there's one kitchen in the whole of my college which serves maybe 150 people and the fridge was always disgusting, in mould and just student fridge basically. And I said to them, 'Look I can't keep it in there. It, it'll get water on it. It will be disgusting'. And they bought me a fridge straight off and then every year that I moved room that I was in college accommodation they just moved the fridge for me which was great but I was really lucky. I know that doesn't happen everywhere.
 
With the exception of Robert, a diabetes diagnosis has had no impact on what young people have decided to study or do for work. 

Robert found it difficult to accept that because of his diabetes diagnosis he would not be able to join the Territorial Army as he had planned.

Robert found it difficult to accept that because of his diabetes diagnosis he would not be able to join the Territorial Army as he had planned.

Age at interview: 21
Sex: Male
Age at diagnosis: 20
SHOW TEXT VERSION
PRINT TRANSCRIPT
What did you find the easiest or the most difficult to get used to at that stage?

So that, one of the, suppose the most difficult it was very annoying for me more than most difficult but I just applied to join the Territorial Army Reserves as a Royal Electrical Mechanical Engineer as an officer. And application was going well and you find out you’re Type 1 diabetic and I had a meeting with an officer on Monday. So I called him up and says, “I won’t be able to make it I’m in hospital. I just found out I’m diabetic.” And he goes, “Ok right we’ll reschedule.” And when we rescheduled he’d found out that I couldn’t join because I was Type 1.

Really?

Yeah and that was a bit of a blow for me because it was something I’d psyched myself up to and were looking forward to. And then get told you couldn’t was a bit of a blow more than anything.

Ok. So it was quite soon after the diagnosis you found out that something that you wanted, 

Yeah

You wanted to do you couldn’t because of diabetes?

Yeah that, that was frustrating to say the least yeah. It was annoying for, to have got so far and so close to getting into something. Then have a massive set back and told, “No you can’t do it. “ And for a condition you feel as though you can manage it very well. But again with time you sort of start get more level-headed and you go, well realistically if you’re in a war zone scenario or in a scenario where you don’t have medical supplies like you do in the UK you sort of understand, hang on a minute some guy who needs insulin is just another thing to have to organise and in a way you could be seen as a liability. And I sort of understood when you think about you understand why. But yeah it was a bit of a blow and a set back at first.
Going out to work

Young people who have recently changed from a student to a working life said that they noticed their diabetes is easier to control because they have a more set daily routine.

Young people who are working full-time, or sixth form students working at weekends and during holidays, indicated that it is important that people you work with should know you are diabetic and that it helps if various co-workers can recognise the 'warning signals' of a hypo. Some had talked to the health and safety officer at work about their diabetes.

As a reporter she works shift and finds that fitting eating times can be a bit problematic and...

As a reporter she works shift and finds that fitting eating times can be a bit problematic and...

Age at interview: 25
Sex: Female
Age at diagnosis: 24
SHOW TEXT VERSION
PRINT TRANSCRIPT

And at work, having diabetes, has it made any difference?

Not really. I mean I told, well, I told people at work first of all because I was in work and they wanted to know why I was really upset. But I'd already mentioned that I, you know, I'd been for this, for this blood test. And I told the Health and Safety Manager. I think it's just a formality, you know. They need to know. And obviously I had no problem with telling people at work. Plus it was important, you know, in case anything, anything did happen, you know, if I had a hypo or anything. And at work it's been okay. It's just with the nature of, of the job, with being a reporter, I work different shifts. So I usually start at 8 in the morning and then I'll take breakfast in. But sometimes, some days I start at 7 in the morning. Some days I start at 1 in the afternoon and work through till 9. So it can be difficult with those, with the late shifts because it means I've got to either take something in, but more often than not I'll just have my breakfast later in the morning and then eat something after I've got home. Just a case of always making sure I've got things with me. Once or twice I've been sent out on a job before breakfast, before I've had a chance to, eat anything. And that's the problem. Or if I've, or if I'm just so busy in the morning that I don't have time to do my injection and eat something. But say if I've, say if it's the case, you know, if I'm sent out somewhere to drive, what I'll do is quickly check my levels beforehand, and if it's quite low, if I need to have something to eat, then I'll do my injection and have the food then. And so it's just a case of trying to fit it, fit it around. I've not had any problems. It's just more been having to prepare things, you know, and just work around it really.

Those at work said that employers need to be aware that you need to eat at certain times. Most have found that employers are very accommodating. One young woman however, has found significant differences in the attitude of employers, school teachers and university tutors. Young people stressed the fact that as a diabetic and a worker you have specific rights. See our resources section for links to further information.

She works part-time and uses a fixed-dose regime, says that employers do not always understand about the need for set mealtimes. In her experience employers can be less sympathetic than teachers.

She works part-time and uses a fixed-dose regime, says that employers do not always understand about the need for set mealtimes. In her experience employers can be less sympathetic than teachers.

Age at interview: 19
Sex: Female
Age at diagnosis: 3
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yeah, it's a completely different kettle of fish really doing a part-time job or so, speaking to employers about your diabetes than it is with staff or teachers at school. Because whilst at school you're not really causing them any inconvenience whatsoever if you are eating in the class or have to sit out for a few minutes and have a break. At work employers, it really depends on the employer but they find, it's a bit different to deal with. There are certain professions obviously that diabetics can't really have. I think legally you can't be an air hostess or something and you can't drive any heavy goods vehicles can't get the licence for that. I mean, I haven't tried to do either but it's worth being aware of those sort of areas. And I don't think you can be a pilot either but I'm not quite sure on that. 

I've found with waitressing jobs it's been particularly hard with the diabetes. I didn't necessarily think about that before applying for them but I had one over the Christmas period. Luckily we were allowed 10 minutes break for lunch. It's quite short but I was still able to get food and things there and pop in and out of the cloak rooms to get biscuits when I needed because you're on your feet constantly and carrying items it uses a lot more energy than you'd think so you, I tended to go low a lot. 

Even just any shop work you're on your feet a lot of the time so your level tends to drop a lot more than it would on a normal day. Well because I won't stand around [Laughs] all day long normally, otherwise. So I just had to be aware to do less insulin on those particular days of the week when I was working. 

Now I've got a waitressing job in a coffee shop and it's ever so busy and I only really work over the main lunch time so quite often I have to have my lunch marginally later than I would normally and everyone else that, that works there has it even later again but I've had to just say to them up front like I really need to have it by this point at the latest and I've said it's, it's quite a flexible period of time I can have it over all the same but I just need to make sure I've had it by then else I'm not going to be working to my best and not feeling so good. So, I did hear the, my two bosses the other weekend sort of discussing out the back; one of them said, because it got near half past two and I said, 'Look that's the latest I should have lunch really, but the regime that I'm on, else I was going to get too low.' And one of them was sort of, had obviously just been complaining that it was an inconvenience that I had to come out and have my lunch then whilst it was still busy in the caf' and there were still a lot of people to serve. Whereas the other one was there sort of saying, 'Oh, it's your duty, you've got to do it. You've got to let her go off and have it.' So they were having a bit of a debate between them. And than made me feel a bit uncomfortable. I hadn't really come up against that before. Everyone else had said, you know, 'If you going to be ill, going to feel faint then just go off and get the food or just eat it. Take ten minutes out.' But it's really useful on applications, I mean, even if you don't want to tick the box and say you've got a disability on the app, job application, then put that you're diabetic, just at interview to mention it maybe at the end, just so the employer is aware of it. 

Hmhm.

Because whilst it's really rare that it will impede you and your work at all it's just good that they'll accept that you may have to go and eat a biscuit or a snack or something during the working day when supposedly they would expect you to be doing some report or carrying out some sort of job. 
 

Last reviewed December 2017.
​Last updated December 2017.

 

Copyright © 2024 University of Oxford. All rights reserved.