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.

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.

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.

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.

Okay.

Yeah.

That’s interesting.

Yeah.

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.

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?

Yeah.

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.

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
Yeah.

…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…

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.

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 yourdquo; 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 illnes 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.

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.