Long term health conditions (young people)
Here, young people talk about what it is like for someone with a chronic (long-term) condition to be a university student. Among other things they explain what help and support is available.
Young people said going to university was a big change in their lives. With the exception of one young woman who had to leave due to illness, university had a positive impact on their lives, most notably in boosting their confidence. In general the institution and the tutors were described as 'brilliant' because they were willing to accommodate their needs and help them with their academic work. For instance one woman with ME/CFS, who initially enrolled as a full timer, was offered the opportunity to go back part-time instead. Young people at University told us that it's important to get a note from the doctor if you are not feeling well especially if it means that you can't hand work in on time. Their tutors emailed or taped lectures for them if they were ill or gave extra time to complete essays or other coursework.
Her worries about her epilepsy faded when she went to university. She started to accept her...
Yes, well, at university I had a great time, I had a great time. I partied hard. I maybe didn't work so hard, but I partied hard. And I did everything that everybody else did. I think maybe at school I was a bit worried, you know, 'What's going to happen if I go out to the pub? Or if I stay out late? Or if I have a seizure in front of people? You know, I'm going to be so embarrassed. I can't do this, this, this'. And once I got to university, you know, things really changed. I maybe accepted my condition more. I thought, you know, 'I'm not going to spend my life worrying about my condition and I'm not going to let it get in the way of things. Yes, I know that I have to take my medication and I know that I have to get eight hours' sleep. But I'm not going to let it stop me going out with my friends and all the kind of things you do as a student'. So, yes, I, I still had seizures throughout university and again sometimes they did impact on my plans or sometimes they did affect my work. You know, for example if I had an essay to hand in and I'd leave it until the last minute and, you know, and then I had a seizure, yes, that did affect my work. But it was just part of life. You know, it didn't stop me as I said partying or going out with my friends or having a boyfriend or anything like that.
But when do you started to talk to your friends or relatives about how you were feeling?
I guess like I said when, when I got to university. I think the change between school and university for loads of young people is a big one. You know, you're going out and you're doing things on your own. And you're away from your family, often for the first time. You know, it's a big emotional change. And like I said my attitude to my condition changed as well. So it was maybe then that I started talking to my friends and family a bit more and talking to my doctors a bit more about how it was making me feel and what I wanted and what I didn't want.
So it's from the age of 19 onwards?
Yes, yes, 18, 19, yes.
Feels that things couldn't be better in terms of the support and help he's got from the...
They have been amazing about it as well. I just go to the doctor and ask for a letter saying I am feeling ill and I give that to my tutor so they have got it on record. It is really important so that if it was to come to any work that needed to be handed in and I hadn't been able to do it because I had been ill. If I have notified them before then they are prepared for it. And my university they have been brilliant, absolutely brilliant about it. I don't really see them that much because I only have three lectures a week or something. In fact they have been really good about it because very confusingly I had to retake half the year last year because I had been ill and missed it, but that wasn't a problem they got it sorted out. It was my tutor who suggest it to me that and I hadn't even thought about it because I thought for a second I would have to quit university and I didn't really want to do that. But they have been really understanding about it.
And you know, there is a - in the Union there is this department called the Access Department which sorts out disabled students and so I went to see them in the first year and they got me a Disabled Students Allowance which helped out with various things as I mentioned before. And that has been really helpful as well. So that is ideal. I can't really fault them. They have been fine. It is just - I just at some points haven't been very well but they have done their best to accommodate that, but you know there are some things that they can't - they can't make me better but they can help as much as possible.
When you wrote your personal statement to come to university you said you wrote something about your condition or not?
I think I, yes I think I must have done. Again my memory fails me. But I think what I had wrote was that I had had ME for four years then, four years may be. I had it but I had got good GCSE results. I am going to get good A-level results. I had been predicted this, this and this, so although I am ill it hasn't you know it won't affect me academically because I am sure I told them' I am quite positive I told them because I didn't want to not tell them because that would be a bit dishonest but I wanted to show them that it didn't affect me, it did affect me but I would be able to achieve to their academic standards because I had got these good A-levels and I had got good GCSEs. I think also it shows a good determination, and a good strength of character to be able to be ill with something that is pretty debilitating but also be able to do exams and to want to come to university and stuff. And I wasn't a problem. Yes.
Not surprisingly some young people said that their experience of living with their condition had shaped their interests and career paths. One young woman said that her cystic fibrosis had encouraged her interest in biology.
She remembers reading medical journals in her early teens because she wanted to know more about...
Do you think there is a coincidence, or not, the fact that you are doing biology, your interest in metabolism, and the fact that you have '
Definitely [laughs] yeah. It has stemmed from me having CF that I like biology because my own natural interest in finding out about me has made me love doing biology, but now that I'm at university its less on the human side, I like genetics, I am, its genetics I'm good at, I do like parts of human physiology, not all of it, but I love doing microbiology, basically pathogens and bacteria and things which I shouldn't be working with, but I love doing that. That's my, microbiology and infections, things like that.
Then at Uni I mean they give you, the Disability Students Allowance and support, so I mean I've got extra time in exams, if I need to take it, so that helps. There's always something there like, to help you along, especially at Uni, they're really, they kind of go out their way just in case, like there's special things where if I can't make it to a lecture, I'm not well, my tutor knows and he pass and e-mail all my lectures, so they'll forward all information, my friend got a Dictaphone so my friends will record a lecture for us, and everyone's fine like if I'm stuck and I say look I wasn't there, I was at an appointment, or I wasn't well then they'll just go through it, they're really helpful, at Uni.
Okay so the Lecturers e-mail the lecture to you.
Yeah. It has to have, it's a disability advisor goes through everything for you, they write something up, which was quite funny when she did, because she had that many cases to sort out, that she sent to me and it had multiple sclerosis and I was laughing because I knew she was under a lot of stress, and before I even got a chance to send an e-mail back, she was like, 'I'm so sorry, you've got CF' [laughs] which was quite amusing. She was mortified, and really apologetic, and I was saying 'don't worry about it, really'. It was the first I'd had that one, I've had everything else.
Talking about the support that is available to university students with long-term conditions, people recommend getting in touch with the university disability officer or team. They said that the Disabled Student Allowance (DSA) is available for students with health conditions and helps pay for the extra costs of studying that are connected to the disability. Anyone can apply for DSA if their condition affects their ability to study. This grant can help pay for specialist equipment (like computer software), non-medical helpers (such as a note-taker or reader), extra travel costs (because of your disability) and other costs such as photocopying or printer cartridges. Young people told us that the DSA varies depending on your condition, mobility level and care problems.
A young woman who did qualify felt that there was a stigma attached to DSA and didn't see herself as having a disability. Another young woman said that it is important for young people with long-term conditions to ask for support, to tell others what they need and added 'it's just about swallowing your pride a bit and asking for the help'. One woman with scoliosis said that you don't have to apply for the DSA at the start of your course.
Explains the assessment process for Disabled Student Allowance and the help he got that enabled...
So basically the help is there, you just have to be assessed and everyone will get different, like if you have got a physical condition you can get dyslexic if you, you know, you will get some sort of help. Like I got extra time in exams, you know, to write or you can have a writer for you in the exam. That was all through the DSA and if you ever need anything different you just got to the university, to the disability section, and they have like a disability advisor, disability student advisor, you could got to him and he would sort anything out you needed or if you needed any extra hours if you needed anything extra then he would sort that out for you, for me.
Her physical symptoms gradually got worse from sixth form to university. She found it hard to...
And you had this allowance for the three years?
Yes, for the three years. You get the computer and you can keep it. It's yours for ever. Because they said it's more hassle to come back and pick it up and clean it and strip it, and by the time the three years are up it's not a new computer.
And how do you apply? Do you apply through the university?
Yes. They, they did all the forms for me. All I needed was a letter from my doctor. And I gave it to the Access Unit and they took it from there really. I had an assessment. I had a consultant, I think he was something to do with Occupational Health, I wasn't too sure. He came in and he spoke through, we talked through about my everyday life really, the problems I'm having. And he, he made up recommendations and they sent it to my local authority. And they, they delivered all the equipment to my house. So it was, it was really easy. It was an easy process. I don't know why I didn't do it before. I just think I was so big-headed. I just didn't want to accept the help, because I was so used to coping and being quite independent. And I think I felt such a stigma attached to it, being Disabled Students' Allowance as well. But it, the best thing I've ever done. I'd recommend it to anyon
Young people who go to University may find themselves responsible for managing their condition on their own for the first time. This is because they may be living on their own in student accommodation, away from everyday family support. At university, they will have to take their medication, decide when and what to eat, and make decisions about drinking alcohol and going out with friends. In addition, some have to do regular exercise or physiotherapy.
Young people often said they'd had a great time at University and some said that they 'partied hard'. Others learned by experience that too much of a social life was bad for their health. One young woman with cystic fibrosis found it hard to balance all aspects of her life at university and felt quite run down at times. Now she is in her second year and appreciates the need to eat a proper diet (that for her means lots of calories), the need to sleep more, exercise everyday and not to go out every evening with her friends. Young people who had to work part time to earn money, while studying at the same time, had little time or energy left over for a social life. One young woman said that while at university she didn't go out very often because she would feel 'terrible' the next day. Another avoided Freshers' Week to prevent getting a cold or any other infection.
Her social life at university was hectic and she began to feel run down. She has learned what she...
One of the things I find, like I absolutely love being at university and I love the student life. I'm really happy in my house with my friends and I'm settled on my course now although I find it quite difficult but I suppose everyone finds their course difficult. But overall I'm like really happy with the uni life. I just sometimes find it really hard to get a balance between my social life, between my medication and like managing CF. Between my diet and making sure that I eat a good high calorie diet to keep my energy levels up and between my studying. And I just find all of it sometimes hard to balance. And just as I think I've got it all balanced and I think everything's going really well something will happen and then I'll be like, 'Oh gosh' like and I have to reassess everything. And I kind of learnt through what I can and can't do and I've learnt through you know, the experience of it all. But I still feel like, even though I've experienced, even though I feel like I know what I can and can't do I still feel like something, sometimes things happen and I think that I haven't really got the right balance but it can be quite difficult. But overall like I do enjoy uni so it's worth it [laugh]. I hope.
And I think that people, like if I had to give advice to anyone going to university 'cause, I would have loved someone to have said to me when I go to university. You know, you can do this, you can't do that, you can do this, you can't do that. If you do this this will happen. If you do that that'll happen. So as long as you do none of them things you'll be ok. But I honestly think that the only way to learn is to learn from experience. So if you're going to start going to university, if you're going to a, a course or something or you're going to go to uni and you want to know like, what's the best way to go about it because you want to make, remain in as best health condition as possible. I would honestly say you can only learn your own boundaries and you'll learn that through experience. Like I know now that I can't have five nights out a week staying out 'til 4 am, getting up and going on a run before lectures and not eating a proper diet. But obviously each person is different and they'll all learn through experience.
As a teenager he lacked self confidence but university and the experience of being seriously ill...
Well I think when I was a teenager obviously I missed a lot of time off school and so you have to be a strong person to get over that, to keep going on and to do the work. To get my GCSEs, to get my A-levels but I wasn't really confident. Do you know what I mean. I mean I wouldn't go out much with my friends during that period. I mean I was quite shy I guess. But I went to university. I did my first year at university and then at the end I finished there and like the May, June and I went to America during the summer. So I had actually done my first year at university. I went to America and then I was going to go into my second year but obviously I couldn't because I was in hospital. So I missed that year out but I would say the turning point, you know, was I don't know if is like a wake up call, but it is a changing experience. It makes you stronger and you think blimey that was close and you are more positive. I think then, you know, I mean my last two year's at university, I was you know so confident. Just a changed person, you know what I mean. I wouldn't be able to do this before, you know, university. I would have said I am not talking to a camera. I don't want to do it. But now I will do anything. Do you know what I mean. I am not scared about looking for a job now. You know, personally if you had said to me, you go to university and get a good qualification I would have laughed. But I think university as well has changed that. I mean it allows you to be more confident, more outgoing, you can meet loads of people and it just brings you out I guess.
I'm interested to know how did you sort of react at university? Compared to when you were a teenager at school?
When I was a teenager I mean I had friends but I wouldn't go out so much, you know, so they was only my friends really in school or college. I didn't really see anybody outside of those. So I guess, you know, you can call them friends. You know, you can't call them friends really. You know that was probably down to me. I was quite shy and you know I wouldn't get involved with things when I was at university, the first year at university, I met some fantastic people which I still know today and because I had to miss the year I lost contact with those people you know. So they carried on at university while I was in hospital you know. So I lost contact with them a little bit. But people' I have met some new friends, because I went back. The friends - I mean I always say that actually the American experience, that year out, was a blessing in disguise because I met all my friends I have got now and you know, they are fantastic friends. But if I hadn't have had that year out I wouldn't have met them. So in a way even though that happened you know there are lots of positives that come out. But now my friends, you know, just treat me as anybody else, you know. They are fantastic in that respect. And you know, they are not just friends for now, but friends for life, do you know what I mean.
Some young people made the decision to apply to universities that were in their home city or were not too far from their family home. They were worried about moving far from their family and other support networks. Others said that they went home regularly, particularly if they were feeling run down and in need of a good rest.
Young people sometimes worried about telling their flat mates and fellow students about their medical condition. Usually they realised that their condition was not an issue for other students - as one young man put it 'they have accepted me for who I am'. A young woman with epilepsy said that she came to accept her condition around the time she was at university and was able to talk to her friends, family and doctors about it. Another student, with chronic eczema, said that she's met other students with medical conditions and thinks that young people at university are less judgemental and more supportive than teenagers at school. While recovering, one young woman with ME, couldn't face the prospect of studying full time or being around people her own age. She decided to do her degree part-time and enrolled in an evening class with mature or retired students.
At university because people are looking after themselves you hear more about others living with...
That I didn't really meet at school. Or at least you didn't know about it. But I think because people were away from home and they were having to look after themselves and their condition, I don't know, it came out into the open a little bit, or it seemed to. So that was, you know, that was quite an interesting discovery.
And I think by the time people are at university, they're much more just hopefully, more understanding about the world anyway. So they don't, you know, you don't get people judging you. Or you know, saying anything inappropriate. And actually people, people to me have been more supportive. About, you know, because, you know, when I'm stressed my skin gets worse so they know that there's something going wrong [laughs] because I can't hide it [laughs].
Because there is a lot of wild partying going on '
There can be yes. I think most people get it out their system in the first year. But I seem to catching it up now, I've got twelve weeks left.
I know if it's a purposeful distraction I'm not sure.
But yes there is a lot ' I don't know I think it differs in that there's less of a routine you know, being at school or having a full-time job. So for me I just have to make sure that you know, I still have time to look after my skin and make sure that I'm eating well and things because you know every' everything else is kind of here, there and everywhere' and all different things happening so.
She did her first degree part-time alongside mature students. Did a Masters degree and used time...
At the moment I've just finished a Masters degree which was something I really, really badly wanted to do. And I actually wrote to the university when I started the course. On my application I explained to them about having M.E. and I actually sent them some leaflets from AIM that explained what M.E. is and explained the Functional Ability Scale. And I sort of basically did my whole application based on the fact that I now believe that I can manage my day-to-day activities. And that you know, I've learnt from that how to manage doing university work as well. And they were really impressed with that and they came back to me. And they said that it was really nice just to see somebody who'd made something, something negative actually become something that can basically go on your CV or could be a work skill. Because they said that I'd shown that because I'd learnt to manage my daily life, you know, I would be able to, to manage university work.
And basically doing my MA was a case of really being quite strict with myself and planning. Whenever I'd got an essay coming up. Ok so that might involve a few late nights [laugh]. So you know, how am I going to plan for that and when are my lectures? So how am I going to make sure that I get rest times the day before? How am I going to make sure that, you know, I get the work in on time without making M.E. an excuse? Because I really, really hate to be the sort of person who has to go and say, 'Oh I didn't do this because of my M.E. Because then I always feel like it's won. So I always want to be able to, to say, 'Yeah I got my work in on time and M.E. wasn't a factor in that'.
So, you know, I just wanted to be really strict with myself and I wanted to prove that I could do it as well. You know, I saw the whole thing as an exercise in proving that I can be in control of this and that, you know, I can get my work in on time and that I don't have to go and apologise because I've failed it again, you know. But it was very scary because going back to uni and committing. The course was for a year. So committing to a year's course having basically had to pull out of the fulltime undergraduate course was really scary. Because I just thought what if this happens again? You know, what if I'm pushing myself too much and I get ill and I have to fall out again.
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