In this section young people talk about what it’s like having arthritis whilst studying at school, college or university. They discuss getting help with:
• Practical things, like note-taking
• Emotional matters (when they were feeling down)
They also talk about friendships and bullying, fitting medication and hospital appointments around school and studies, and when they felt they needed more support.
People had received lots of practical support to help them at school or later on in further and higher education. This could be more formal coming from schools or informal provided by their friends or parents.
People who had problems with their wrists, hands or fingers had difficulties writing. This caused problems when they had to make notes or do exams. Sometimes people had a teaching assistant who could write or take notes on their behalf. David Y had somebody to write for him in an exam but felt this added more pressure. Ryan preferred Maths because he didn’t have to write as much. Chantelle’s teaching assistant helped her cut out patterns for her fashion course. Teachers and lecturers could print off notes so people didn’t have to write things down. People could also take breaks from writing and were given longer time to finish work or do exams. When Lu had a flare up one year her university postponed her exams by a month.
Health professionals often had to write to exam boards explaining why people needed longer in exams.
Technology, such as Dictaphones and laptops, could make life easier. Elly used dictation software on her computer which typed what she said. It worked well for English but not for Maths or Languages. Cat had a special chair which stopped her from seizing up.
Caitriona is a full-time university student studying law and politics. She also volunteers for Arthritis Care. She is white Irish.
Have there been any adaptations or anything that the university's done to help you with your arthritis?
I've been offered, well actually have, I don't make use of it too often because I've found myself coping recently. I have an assistant, I have a library assistant, I have a laptop so I don't have to write all the time, I have a pen which I have special books for, it's called the livescribe, it's fabulous and it records my lectures and then when I write on this special paper I plug the pen into the computer and all my writing comes up and I'm able to print it off and save it or tweak it. I've also been offered or also have voice recognition software so I don't even have to write, I can just talk and talk and I have extra time during tests, rest breaks. I can use a computer during tests, I can get my deadlines extended so on that front, I mean, I've actually received more help in university than I've received at school. So on that side, I mean, having a disability in that sense can have its advantages because I feel that I'm more equipped for university than any of my other friends.
If people fell behind with their work then teaching assistants could help them catch up.
Chantelle is a full-time school student. She is engaged to be married. She has no children and is white British.
Yeah my one TA has done a fabulous, I was unmarkable this time last year, I couldn’t read, could just about write, and now I can read, I can write and I’m leaving school with at least 5 A’s, and that’s, not in the Maths and English side it’s in the creative side with the fashion and my art and Media and photography. But it’s still good compared, I was unmarkable with my maths and I’m leaving with at least an F, and my English with at least an E which is good ‘cos I was ungraded last year, and they said I wasn’t gonna get a GCSE grade. So if it wasn’t for my TA doing extra work and just going out of her own way buying English books from primary schools and stuff, if it wasn’t for her using her own money or helping me I wouldn’t be where I am today. But my TA has done fabulous to help me get there.
If people had difficulties moving between classrooms they could sometimes leave one lesson early so they weren’t late for the next lesson.
Friends and teaching assistants could carry heavy bags. Ryan’s friends carried his dinner for him in the canteen. Sometimes people were given lockers so they could store what they didn’t need during the day. Chantelle used a bag with wheels on so she didn’t have to lift it. If people had difficulties climbing stairs they were given special permission to use lifts.
Robert' Right, she’d already we’d already applied to put her in at college. When we applied for her to go that college, she didn’t have arthritis. We didn’t know anything about it. As soon as we found out, we told them and they were really good weren’t they.
Karen' Yeah. They have a nurse that works at the college. I don’t know if every college has got a nurse but this college has a nurse and Charlotte and I, as soon as we found out Charlotte had been diagnosed, we went and had a meeting, couple of weeks later, with the nurse and with, I don’t know if she was a lady that does the funding for the college. I can’t remember now, unfortunately, but she came down to the meeting as well and they were asking what support Charlotte needs, what equipment she needed and that that’s how she’s got the, they recommended to my other.
Robert' She’s got a laptop in class, so she doesn’t have to write, because it’s easier to tap your fingers than it is to write. So that helps.
Karen' The TA she’s got.
Robert' The teaching assistant was already, they’d already got her in, or something, for some other girl in the class but, to a degree, the college have been helpful because the funding is there for a TA for whatever reason is keeping that TA employed isn’t it. Charlotte sometimes finds it a hindrance but if you need a TA or somebody to help you even carry her bags I think.
Karen' Yeah, she’s there for, they did say that she’s there for everything.
Robert' But if you get, but some, you know, she’s there to carry her bags as she gets off the train because from the train station to the college is about, you know where you come in the front gate, just to where you turn round the bottom, just down there, that is about the distance she has to walk. So it isn’t that far but then she has to get go up to the like top floor where she can use the lift. All the other students have to use the stairs. So they you get teachers saying, “Why are you using the lift?” You see what I mean. And she goes, “Oh, I’ve got arthritis and that. Oh.” See what I mean. It’s like when she goes in the disabled toilet and walks in there perfectly normal, “Why are you using that then?” Because they think oh, she’s a student trying to like get away with like breaking the rules. But in regards to, I mean she had three days off this week, so it’s just a case of phoning in. They’re good because most of the stuff they e-mail and all the work she’s been submitting in submitting anyway has all been distinction standard.
Okay. So her work isn’t necessarily affected?
Robert' No and I would say she’s doing she’s probably doing better than anybody else in that college but that’s only because.
Karen' She’s determined.
Robert' She’s used to go to boarding school and they used to force prep periods on her at night, so she’s had that sort of discipline of learning.
When people had difficulties sitting down for too long in lessons they were sometimes allowed to take breaks from work in order to stretch and move about. Sabrina struggled to stand for long in drama and spent a lot of time sitting down instead. She was given a cushion to sit on because she found the chairs uncomfortable. Melissa used to spend an hour a day in the staff room with her teaching assistant doing exercises.
Sometimes people didn’t want the support on offer because they didn’t want to be different from their friends or draw attention to their arthritis. Sabrina didn’t want a laptop in lessons because she would be distracted and not get on with her work, and Jenna didn’t want help getting changed for PE.
Gemma is a school student and lives at home with her parents. She is white British.
Okay did the teachers try and do things differently because of your arthritis?
There was only like a few people, like a few teachers that treated me a bit different, like one of the science teachers because we have stools in our science labs, every time I went in she was like, “Do you want the blue chair?” Because the blue chair’s like a normal chair, just on stilts. I was like, “No, I’m fine.” Like she wasn’t sure if I could like sit up properly. But she’s stopped that after like the first year or something and then the PE teachers like, up until about Year 9, every time that they could tell that I was in a bit of pain or like I started to limp when I was running they were like, “Sit down, take a breather,” but like because they’ve got to know me they’ve got to know that I wouldn’t do that ‘cos I don’t wanna be classed as the one that just sits out at the first sign of pain. I would rather just get on with it.
Emotional support was important when people felt upset, depressed, worried or frustrated. It was often friends who listened and tried to understand. They helped out by doing things like carrying PE kit, walking slowly so people could keep up.
Teaching assistants and counsellors could also provide support for people to cope with difficult emotions (see ‘Coping with emotions’).
Lu is a recruitment consultant. She is white British.
No I remember feeling, having a really, really bad flare up at university, really bad flare up it was because I used to go out a lot, and I know that was my own fault. But I remember just feeling rubbish about it and just feeling you know not, I wasn’t happy, I was just in so much pain that I couldn’t, I knew that it’s like it, I always know that it lasts a period of time like I always call my mum and just like I’m not very happy and I’ll have a day of just crying, and that’s nothing to do with anything but the arthritis, it’s just ‘cos I’m in so much pain it’s like the frustration of it. And I remember going to see somebody at university actually and I walked in and I said I’m, she said you know, “Why are you here?” and I said, “I’m on a really bad flare-up and I just don’t feel happy,” and she went, “To be honest I wouldn’t, I’m not surprised. So like there’s nothing wrong with you.” And I was like, “Okay then,” and that was it. And since then I was just like I never needed to see anyone since.
A bit of a short session then?
Yeah it was really short, it was like five minutes.
Did it actually have an impact; I mean was it a positive thing to have it so short?
Yeah it was because I thought do you know what, like I am, the way I’m feeling it’s totally normal. It doesn’t help that you get such bad fatigue as well. I get really, really bad fatigue, that you, when you’re tired, when you’re not feeling well you’re gonna feel you know pretty low. I think you’ve just got to manage your expectations with it, and I think that’s definitely something that I got taught when I was, you know, going through everything as a kid just to manage the way I feel. But it is just, it’s just normal, not abnormal I’m sure.
Help with money
People talked about the different kinds of financial support they received. For example, college students talked about disabled person’s rail cards and bus passes. University students sometimes received Disabled Students’ Allowances (DSAs). These are funds that can be used to buy equipment like special chairs and computers. Elly went to study in Spain and Portugal as part of her languages degree. Her university paid for flights back to the UK so she could see her doctor (see ‘Money and financial support’).
Social life and bullying
Most of the people we spoke to didn’t have a problem making friends (see ‘Friends and social life’) and talked about special friendships they’d had for years. People with teaching assistants worried that they would get in the way of their friends but this wasn’t the case. Teaching assistants were sensitive and didn’t hover about too closely when people where with their friends.
Some people didn’t have a problem telling others that they had arthritis but others wanted to keep it a secret or tell only their closest friends. People worried what others would think and didn’t want to be treated differently (see ‘Friends and social life’).
Beth is a school student. She lives with her parents and is White British.
No I don’t tell loads of people. I don’t like talking about it very much. I just tell like my close friends and that, it’s slowly starting to spread around the school which is not good. I’m not fussed but I feel though if I tell everyone they wouldn’t treat me as they treat me now. I’d feel like I’d be treated differently just because I’ve got a medical condition. But yeah.
Do you worry about that?
Yeah. I don’t like people treating me different just because of my Arthritis. I’d rather that they just treat me exactly as they would ‘cos I’ve got it so, you know.
Have you ever had any unpleasantness or unkindness about it?
No, ‘cos I know that if I do I have to know who to tell and that I know I can trust them with it. So I don’t go around telling everyone about it I just say it to my friends so they know if I’m in pain, then I can tell them and they can take me to the teacher instead of them worrying or anything about me.
Okay then. Do you avoid telling certain people then?
Yes. ‘Cos I know some people have got a loud mouth. But [um] if it’s something quite serious like this then I keep it quiet and I wouldn’t go around telling people, so I have to try and choose the right people to tell.
And it’s only your closest friends?
What about things like school teachers? They, do they all know?
I tell most of them. I tell like my PE teachers, so they know if I’m in PE and I can’t do things. Or if I’m doing different activities in class I tell them I can’t do this or that. And if I need a break from writing I need to tell them because I get quite achy if I’m in, oh I was in an exam last year, this year and I’d finished early and I was in pain, my shoulders started to hurt. And obviously I couldn’t move because I was in my exam and I’d get shouted at. So I had to try and do different things so I wouldn’t be in pain, but obviously I can’t move so that’s bad. So I’m gonna see like if I could sit near the back, at the end or something so if I’m in pain I can walk out and I’ll be okay. So that’s what I have to try and explain to the teachers but some teachers don’t really understand as much as others do.
Sometimes people had difficulties making or keeping friends. Some of the people who had to take a lot of time off school felt they grew apart from their social group and had difficulties becoming close friends again. They had to work hard to catch up with work but spent less time socialising. People with mobility difficulties struggled to do certain things with friends like PE or going shops with friends. When others went out to play and run around people with arthritis sometimes had to stay indoors or sit down. This could make people feel “lonely” and “self-conscious”. Deni wasn’t allowed to join a group project at university because people felt she was “unreliable”.
Some of the people we spoke to had experienced bullying. People were sometimes accused of “faking” symptoms or “attention seeking”. They had been called names and were occasionally physically bullied too. Sometimes people had to change schools because of persistent bullying.
Chantelle is a full-time school student. She is engaged to be married. She has no children and is white British.
Well physical. Mind bullying. Everything. Basically it was just a group of girls thinking that they was funny, like ‘cos I was the odd one out and obviously I was on medication so I obviously I’m gonna be bigger than everyone else ‘cos of the steroids so they decided that they’d pick up on me being larger, they would bully me because I had arthritis and think it was funny to hit me and do things and they would hurt me, but they thought it would be funny. So they just carried on doing it and then they’d call you names, call me like, “Oh Granny disease, don’t go near her you’ll catch it.” And stuff like that which if anyone does get bullied I would advise them to talk about it and tell someone ‘cos I didn’t do that and I went the other way and tried to commit suicide which I do regret now ‘cos obviously I’ve got a big life ahead of me. But back then you don’t think, ‘cos it gets so much on your plate. So it was hard but there’s always, once you’re tell and they get caught and they do get punished so, I’m still going to tell.
So that’s an important message, not to be quiet, but to…
...to tell others. Who did you tell?
Well my mum. Well my mum caught me in my room as I was about to commit suicide. And that’s how it all come out in the open and I didn’t go to that school. I was off school for about three months while that was happening so then that’s when we found [name of school removed], and I found telling everyone I had arthritis and having a whole year in assembly being told about it and what it’s about was much better ‘cos when I went everyone understood and didn’t seem, obviously I stood, still felt a bit the odd one out, but I wasn’t so much ‘cos they make you feel welcome. So...
Fatigue, work and sleep
Sometimes the people we spoke to struggled to stay focused and awake in class. Some felt that this was because of the medication they took, but others said the fatigue was caused by arthritis itself. David Z found it hard to cope when he had a full day of lectures at university. When Cat and Zoe where in primary school they were allowed to take naps during school time if they were having a flare up. People talked about accidentally falling asleep at university or on the bus home. Sometimes they napped when they got home before they started their homework but didn’t nap for too long otherwise they’d be awake all night (see ‘Fatigue, sleep and energy levels’). David Y found that it took him longer to finish his homework if he had a nap before he started.
Sometimes people missed school during a flare up or if they had hospital appointments to attend. Although some people didn’t mind missing school others felt frustrated if it affected their grades. People sometimes took school work with them to hospital appointments so they could catch up whilst waiting for an appointment. If they had to stay at home during a flare up they could ask for work too and some had been home schooled, but some found the level too basic. People who spent a long time in hospital went to a hospital school. Sometimes people felt tempted to take a “sneaky sick day” or pretend not to be able to do their homework. Occasionally people got out of PE by saying they were sore even though they felt OK. Tom tried not to miss PE because he wanted to stay active and some people were genuinely unable to do PE because of a flare up.
Charlotte is a school student who lives with her mum and dad. She is white British.
I feel that my arthritis has got in the way ‘cos my appointments at [hospital name] hospital are normally 9.30, 10 in the morning, and then I take forever to be seen, it’s normally one or two hours wait. And then I get seen, and then they take two hours and then I’ll probably have to have a blood test which takes longer, then by then I’ve missed the whole day off school, which is quite inconvenient but now unless it’s after school or like at 3 o’clock, so I leave about 2 I don’t go or I get Mum to be persuasive and change it.
Do you think that the quality of your schoolwork has been affected in the past because of it?
Yeah I think it has because you’re missing a lot of lessons, and then when you have to catch up it’s very difficult ‘cos you don’t know what’s happened and you have to ask the teacher. And then sometimes she’s too busy with the other students and what they’re doing, that she can’t, she doesn’t have time or he doesn’t have time to explain it to you, which is quite annoying in a way because I’m the one that’s missed school and I don’t get any help so I try not to miss as much as possible.
Okay, well good for you. Good for you. Yeah, some people are quite happy to miss school, “Oh I get a free day off school,” and things...?
No. School’s too important to miss a day. Especially when you’re doing your GCSE’s.
If people had to take medication during the school day they could do it in a private space or get help from the school nurse. Jessica struggled to inject herself if her hands were bad so a school nurse was taught how to do it. Jessica didn’t like people seeing her inject herself so she went to a medical bay to do it. When Tom went on a school trip he noticed many other students taking medication. He said, “You realise no one’s completely healthy all the time”. Bradley was usually sick after taking methotrexate. During his GCSEs he avoided taking the medication on the days he had exams (see ‘DMARDs’).
People are not supposed to drink alcohol when taking certain medications. Some people felt out of place at university when their friends were drinking and they couldn’t. Others joined in the drinking games but drank soft drinks, ate chocolate or nominated friends to drink on their behalf. It could be easier when people started their second or third years at university when some students do more work and less drinking (see ‘Friends and social life’).
Lack of support
Schools and universities had differing levels of understanding, willingness and support available for young people with arthritis. Often young people and parents felt that schools and teachers were supportive and tried hard to help out as much as they could. However, sometimes people struggled to get the help they needed.
Michelle’s school lift was too small for her wheelchair so she had to struggle up the stairs. Sometimes people were told to sit out of a PE lesson like trampolining if the teacher thought it was too dangerous. Jazmin was given extra printer credits from her university so she could print out the lecturer’s notes but wasn’t offered a printer so had to walk to the library. Cat received Disabled Student Allowance but this couldn’t be used to fix her car so she had to walk to her university placement.
Jessica is a college student studying photography. She is white British.
Yeah, I had I had that much trouble in two high schools I changed in year nine. The first high school, that was, most of my classes were upstairs and it wasn’t very wheelchair friendly. So I would, if say, science class was upstairs, I would be taken out because I couldn’t get up the stairs at the time and I’d be taken out with another teacher. I’d go into this one room and I’d just learn the science with that teacher. So I wasn’t with any other people. So in year nine, I moved to another secondary school and that was that was because it was wheelchair friendly. That was a great school, actually. They had this buddy system, where if you were in a wheelchair or you couldn’t get around, someone in your class would take you out, so you can talk to their friends. They’d push you or take you wherever you wanted. So it was kind of a rota each day, so someone, you’d get someone different, which that was really good.
Ah, that’s interesting and I have heard of buddy systems before, did you get on with people, nominated buddies?
Yeah, yeah, because it was it was your floor so as soon as I went in, it was it was kind of weird, because I was in a wheelchair, everyone knew me straight away in the form they’re like, “Oh Jess, you all right?” So that was kind of a good thing. So yeah, everyone in my form I got along with, they were just, they were really nice.
Sometimes people had problems with teachers lacking understanding and awareness of arthritis. Some young people were accused of faking their symptoms. Health professionals and parents could make things better by contacting the school to make staff aware. Beth tried explaining things herself but felt that some teachers didn’t listen. Deni kept her arthritis a secret until her hand swelled up in an exam. She got shouted at for not telling the school sooner. When Chantelle was off school her teachers didn’t send her work even though her mum kept chasing them up. Michelle didn’t feel her tutors were sympathetic when she couldn’t make it to college during a flare up.
And what about teachers? Any, any kind of messages for teachers?
Yes I think the teachers should be more aware of what’s going on. I don’t think they really, even though I work at the school, I don’t think all the teachers know what she suffers from. For example, one teacher, she asked if she could have some paracetamol because she was suffering one day and he rolled his eyes and said, “Well do you really need them?” Because I work in the office, all she needed to do was come and ask me for them and he was quite off with her really about having to give her a pass to come out of class to go and get some paracetamol. Now I know that Jenna is very, very, it’s very rare that she takes anything extra and I thought she must really have needed that medicine to ask him to come out of class, and to feel, make her feel bad about asking, I thought that was quite bad really so I was quite bad and I sent him a message explaining her problems and he was totally unaware that she’d got the problems that she’d got which I thought was quite bad really. I think you should know your students and because that information is there, I’ve given it to the SENCO co-ordinator so it’s on her files and I think the teachers should be made aware that if a child’s got problems in their class but obviously he wasn’t. And I think that’s happened; again one of the teachers, she asked if she could go home one particular day because she was feeling sick and she went to a teacher and the teacher didn’t even come and ask me what I thought about it. She just told her to go back to class and see how she went and I work at the school. So I would have thought that teacher would come to me and say, “Jenna’s been to me, she’s not feeling very well, what do you think? Do you think she should go home?” But she didn’t and she’d had her treatment that week so it could have been relevant to the treatment that she’d had and she just kept it to herself and never said anything and just sent her back to class.
So sometimes I think teachers aren’t really very aware and that’s not just arthritis, that’s with anything really.
Age at interview:
Age at diagnosis:
Chantelle is a full-time school student. She is engaged to be married. She has no children and is white British.
My TA’s have been fantastic because obviously they know what’s wrong and how to address my arthritis. But some teachers are okay, then you’ve got some teachers that just “It’s arthritis, it’s no big deal. You can do this. You can do whatever,” But you can’t. Some stuff you just can’t do and the teachers don’t understand that. Which makes it difficult when you’re at school ‘cos then it puts a, you could go into a lesson and it makes you feel sad and upset ‘cos that teacher doesn’t understand. And then it gets me frustrated personally ‘cos I can’t explain to the teacher ‘cos I don’t know how to explain to her, “This is how you…” I can’t do it. “This is how you’re meant to adjust,” I just wish that they would know.
Could you give me an example then of when, what you were doing and or rather what you struggled to do?
Yeah well I was in Media and the teacher was there trying to do something, and the teacher just, just wasn’t taking no notice and he was like, “Can you come over here? Can you do this? Can you make, can you press these buttons?” And the buttons were so small I was like, “I can’t do that.” And then he’d get me to bend down and do stuff. I was like, “My back and my arthritis in my knees, just I can’t do that.” And it’s, “Why can’t you do that? You look normal to me.” And it was, “Oh you’re trying to get out of this lesson ain’t you?” It was like, “No I’m not trying to get out of the lesson, I have actually got an illness” and because other kids try and get out the lessons he just put me in that category. Instead of actually looking and thinking, “Oh maybe she does have an illness.”
Okay so if you had a message to tell the teachers what would be, what would be the things that you’d want them to know?
If they have a child in their class with a particular illness, like me with arthritis, to research it and try and get information. And make sure that they don’t do something in the class that’s complicated and that that child can be incorporated. And be able to feel like part of the class, not sometimes the odd one out in the class.
Some parents had to fight to get their child a Statement of Special Educational Needs (or “Statement”). Statements describe an individual’s needs and how they should be met. Statements are often used to get extra help, such as support from a teaching assistant or equipment like a laptop. Not everyone with special educational needs or disabilities will need a statement because schools can often provide students with the support they need.
The young people we spoke to were often proud of their academic achievements – particularly since they did so well with arthritis. Some had taken weeks or months off from study but still did well. Others had to drop out of courses and try again the following year when they felt better.
All of it. They've, even at primary school when she was bringing stuff on the, they'd changed the way they'd done English and Maths and it was like, "You don't do it that way," "Yes you do Mum this is the way they do it now." And I must admit, so one thing I'm really, really proud of Jess for because she missed so much school and I mean the majority of it that the fact that when she did actually settle down into her final high school she actually got GCSE's and got C grades. To us that was like getting A stars because she'd not been in there to actually do the work and then to go to, she missed it again, she probably did half the time at college that she was supposed to but she still got her your Business, she got her Business Studies A level. So you know, it's a massive, massive achievement and we always say to her all the time, that you know that we're really proud of her for it because, you know, most of her friends that she went to school with, they were getting C grades and they'd been in school all the time. She literally missed like I would say; I would say seventy percent of her schooling was missed.