Elizabeth

Age at interview: 18

Brief Outline: Elizabeth was diagnosed with arthritis when she was 18 months old. She experiences pain and swelling in her ankles, elbows, jaw, wrists and fingers. She has had her hip replaced. She takes Humira (adalimumab) injections, lefludomide tablets and steroid injections.

Background: Elizabeth is a full-time university student. She is white British.

More about me...

Elizabeth is a university student studying the Arts. She has juvenile idiopathic arthritis (JIA) which is rheumatoid factor positive. She also has iritis which is said to be related to the arthritis. She is on prednisolone steroids which she has been on for just over a year. The steroids cause Elizabeth to put on weight which she is sometimes unhappy about. She also injects herself with Humira (adalimumab) once a fortnight and lefludomide tablets. These medications have helped reduce pain and swelling a lot. 

 

When Elizabeth was in primary school her knees were affected. When she was in secondary school the arthritis spread to her ankles, elbows, jaw, hip, wrists and fingers. Her joints can be really stiff, painful and inflamed. When her joints are bad she walks around gingerly in order to avoid hurting them. This has led to a bad back because her posture can be bad during a flare up. When Elizabeth was at school she spent a year and a half on crutches before she had a ceramic hip replacement. She was 16 when she had the replacement. 

 

Elizabeth lives in a large city and cannot always meet her friends easily. She often invites them around to her house and cooks for them and has sleep overs. When she is in a wheelchair Elizabeth can jump the queues at theme parks and her friends enjoy going straight to the front with her. Elizabeth has incorporated her experiences of arthritis into her art projects. She painted her leg splints for her GCSE Art and received an A grade. She is big fan of Japanese graphic novels and movies and is into photography.

 

As a child, Elizabeth's knees were affected and she developed iritis. Her arthritis started to...

Probably my earliest memories were probably in primary school, when I started doing PE. I noticed I couldn’t run faster than everyone else. And then noticed that I could easily get out of PE as well by talking to my teachers. I’d just be like, “Ah hurdles don’t want to do that right now.” And they’ll be like “Oh okay.” And go and sit down. Also blood tests. A lot of kids didn’t have to have blood tests and I did, so I didn’t understand that. And then going to my doctors, like once a week, no-one else had to, no-one else came into the classroom late, so I’d be like, “Maybe something’s not quite right here.” But I still didn’t quite understand that. 

 

But, and when I was in primary school it only affected my knees, so I, it was, it was pretty good in primary school, not really any health complications or anything. And then when I was 6 I noticed that in my right eye I had iritis that they diagnosed it with. And my eye became foggy, and you know that, that was a bit weird because it, I started to get a lazy eye, then all the other kids noticed really. Thankfully I never had any problems, I was never bullied or anything throughout all my school, I was never bullied or picked on. But, so that was really good and I had friends. But yeah and then that was okay. 

 

And as soon as I got into secondary school it kind of spread to my ankles. Well not really spread but started to affect my ankles and, and then it affected my elbows, my jaw, my hip and my wrists and my fingers. So I was at, I was just before GCSE’s that I found out that I had to have a hip replacement. So that was, that was a bit daunting and then I was on crutches for a year and a half. And ‘cos I was being referred up into, up to [name of university and name of hospital], so that was, it took me a year and a half to get a hip replacement up there. But I did get a cancellation so I had it done in the summer so it didn’t affect my university, my college work. 

 

Elizabeth talks about how the arthritis progressed from her ankles and knees to her hip. The pain...

Well my ankles are affected and you know it’s mainly my ankles or my knees that if I’m walking a lot, more than I don’t know five minutes on a bad day, and they just, they become painful and achy, and then you go to bed, you’re painful and achy, you wake up the next morning and they’re stiff, they’re really stiff. You can’t, you know your muscles seize up so you can’t bend your knees and you can’t straighten them and you can’t bend your ankles, so you’re tiptoeing and that creates so much pain in your back. And it’s ‘cos your posture is so bad. 

 

And pain on my hip, my right hip. When I found out I had to have a hip replacement I couldn’t put any weight on it, so I had to go on crutches for a year and a half. And that was just like a constant sharp pain if I ever put weight on it because of the, there was just no cartilage in between at all. So that went, the cartilage went really quickly. My doctor was really surprised. And so it’s kind of like a sharp sort of like bone rubbing on bone. 

 

And ‘cos I was on crutches for a year and a half, it affected my wrists and my fingers ‘cos of the pressure. And so if I have a bad flare up the first thing to go are either my wrists or my fingers. So I woke up this morning and my wrists are just puffy and well it’s only about six fingers on my whole, on my hands that are I don’t know, you can’t straighten ‘em or if you do they click and just grind. 

 

And it’s like I can’t open jars or can’t cut cheese. Just different things like you can’t carry heavy stuff because of the pain in my wrists and like you get fluid in them. So at the bottom of the finger you can push it up to the top of the finger and you can push it down.

 

Elizabeth’s weight went up each time she was put on steroid tablets. She said the weight affected...

Have your thoughts or feelings about your body changed over time?

 

I do get quite annoyed just with the changes that I’ve had from medications. Like I was super skinny as a kid you know underweight, and then suddenly, that’s just from causes of arthritis but then suddenly I had to go on steroids and as a kid you don’t really get that, “You know what I’m eating a bit too much.” You’re just a bit like, “Yeah shove it in my face.” 

 

And then I’d got to secondary school and I was like, “God I’m actually quite chubby.” And yeah just, and then I went through natural weight loss, as you just get older you just get slimmer and then I went back onto steroids and then I just went poop, popped out like a hamster. It was really starting to irritate me, just like the, it’s just a bit like a yoyo really, and I’m scared it’s going to get to a point where it’s going to be hard to lose the weight. So it does affect your body and your body confidence especially.

 

Elizabeth takes steroid tablets which make her hungry. She watches what she eats and avoids...

I wouldn’t say that no. I wouldn’t say it’s controlled but I’d just be like, “Well,” you know my Mum cooks for me, or I cook for, I know how to cook, you know I’ve been cooking since I was young thanks to my Mum and I know what’s a good home cooked meal which is you know vegetables and everything, and I know what’s bad for you. So I don’t, I don’t go out to eat that much and if I do it’s with friends, just for a social thing. 

 

And I get a takeaway as a treat but I think you do have to watch it. You do get, when you start steroids I mean on 20 it’s out of control. I’m not saying I’d go and get loads of burgers and chips and just absolute rubbish, but it’s just more like you’re at dinner, you have a plate of normal sized food and you eat it and it feels like you’ve eaten nothing at all. So you’re just like, “Okay I’ll have a second,” you feel that you just, you don’t feel full so you just keep on eating until you try to feel full. And then it could be a perfectly healthy meal but then again it’s crazy unhealthy because of the portion you just eat. 

 

So but that, so you have to be aware of portion control, you just have to be like “Oh maybe just a bit smaller,” but at the end of the day with steroids you don’t want to go to bed starving because then you’ll just be cranky. And sometimes you’d be craving something, but you wouldn’t know what so then you’d just be in a bad mood and you take it out on people. But that’s one of the things that I’m struggling with at the moment, because I’m scared, because I’ve been on steroids so long I’ve kind of, I’ve gone down so low that I’m not putting weight on, but if I go up I’ll put weight on, so it’s just kind of more like trying not to comfort eat, if you know what I mean? 

 

‘Cos you know that’s how obese people you know the, they start to comfort eat and just oh, I can’t, I can’t comfort eat. Don’t comfort eat. Do something else, you know. But it is something especially weight, you have to be aware of weight because weight impacts your arthritis. The lighter you are, I’m not saying you have to be super skinny but it’s much better, and the more muscle you have is better for the joints as well. Yeah. 

 

Elizabeth uses a Taxicard scheme. She can travel wherever she likes and only has to pay the first...

It’s like if I was on a bus going home from school, they’re like, I’d get up for the older people because otherwise people would just say, “Oh what a horrible young girl.” You know just something about, but I can understand why people, it’s harder to get through town but I’ve found that there’s a scheme, like a TaxiCard thing, and ComCab, so I can call them up and arrange for a taxi to somewhere and it’s £2.50. And I can take three people with me. So I think that’s helped a lot as well. 

 

But I find that with arthritis I have to plan, I have to be like okay well what station are we going to? And how long is the walk? ‘Cos if I can’t go out without a plan. I think I like to go into London, I wouldn’t like to do it as a job, I wouldn’t like to go into London but for a play or just like up to the museum, I went to the Tate to see the exhibition and just got a Taxi back to Waterloo and then a train home. But it’s fine, I wouldn’t find I’m that nervous because I’m used to it like with my parents we’d go up to [city] in the summer, we’ll go to the museums and stuff. But for other people that don’t live locally I can understand why. Especially in wheelchairs, it’s, it doesn’t have, the streets aren’t built for it, and it’s just not wide enough or it’s just not smooth enough. So yeah, and the hills.

 

Elizabeth doesn’t drink enough to get a hangover, but when she’s “tipsy” she finds it easier to...

Definitely less than a normal teenager. I don’t mind going out for a night out, if I’m feeling okay, go to a club but I don’t get so drunk that I don’t remember anything or you know I have to be able to go home so I get really, you know I can’t, I can’t be so off my face that I fall in a ditch somewhere, or can’t get back or you know, I’m also a very organised sometimes just like, “Okay, how am I gonna get home?” Am I gonna get a cab home, I’ll get a car home, I’ll text my Dad who will come and pick me up. 

 

But, yeah I don’t go out clubbing that much because it’s energy. You know you don’t get a hangover the next morning you get achy, you get pain, you can’t walk. And if you’ve got, if you’ve got to do something the next day you won’t be able to do it. So you’ve kind of just got to think in advance, well I had a good night out but I’ve really, for the rest of the week I’m just terrible, I just feel terrible. 

 

So I really don’t drink that much don’t really like the taste, but then again if you are a bit tipsy you are a better walker, it’s just a fact you know. I was on crutches, a bit tipsy; I was off my crutches like “It’s a miracle.” Yeah that was one of my party tricks actually, ‘cos I would be with my friends and they’ll just all be like, trying to catch me, “Oh my God she’s off her crutches, she’s gonna fall,” I was just like, “No guys, I can walk, I’m Jesus.” ‘Cos, ‘cos you don’t feel the pain, ‘cos I don’t, the first thing to go is like I can’t feel my legs and I’m just like, “I’m floating,” I don’t know it’s just pain free. But then again I don’t drink very much.

 

Elizabeth worries about discrimination when applying for jobs. She doesn’t want to be on benefits...

I do worry about employment in the future. Especially with like the recession going on now. If, you know if people are finding hard to get jobs anyway, but if there’s 20 people going for a job, you’re not going to pick the disabled one really. I know that’s really harsh, but it’s realistic ‘cos you’d just be like, “Ooh.” There’s a lot of competition but especially if you’re not well enough to go to work. I don’t want to be someone on benefits, but you kind of think will I be healthy enough to? I don’t know. So and also ‘cos I’m 19 soon I’m gonna have to start paying for prescriptions. I’ve already sent off for my card, so that’s £104 gone for the year. It’s a bit of a shock. Yeah.

 

Yeah. What are your aspirations for the future?

 

I would like to have a successful photography studio, you know as I think being the boss would help, ‘cos then I could pick when I work, I could employ others, but I’d still have a job that I could go to ‘cos I wouldn’t like to be at home, I’d just go crazy. I, you know I’d need something to make me go, make me leave the house otherwise you’d just sit there going “I’m tired, I’m not going out.” Just like that. You know but a comfortable life I think, I would like a nice apartment, a nice on the floor apartment, ground floor, no stairs, hate stairs, stairs are my enemy you know. But yeah just a comfortable life.

 

Elizabeth has close friends that understand her. If she isn’t up for going out for the day they...

You have less friends but you have closer friends that understand you more ‘cos you think well I don’t really need you, and I don’t really need you but I’ll have, I’ll stick with you ‘cos you know you get me. I’ve been with like two of my best friends since primary school you know, they still know me and we went to the secondary school together. Still know me and if I say to ‘em tonight, “You know I can’t go out tonight, I feel too tired.” They’re just like, “Yeah, sure. Let’s meet up another day.” Or you know “Can we just do this and stay inside because I’m, my joints are hurting,” she’s like, “Yeah, sure.” 

 

So no definitely closer friends more than more friends and plus I’ve learnt if I feel lonely then I won’t go out with them, I’ll invite them here or do something with them and organise like a day or something which is suitable for me. So instead of like “Oh I don’t really want to go walking around [city],” I’ll just be like “Why don’t we go to my house, watch some films, maybe go out to the local pub or something.” Just something that I’ve developed my things around here. And then everyone was like, “Oh when are you going to have the next meet up at your house?” If you make it fun, so then they like it, so I’ve found that a good way of like keeping with people and stuff.

 

Elizabeth was embarrassed using a wheelchair and mobility scooter in public but her friends had...

I get a lot of invitations to Thorpe Park because I can get Fast Track.

 

How about that.

 

Yeah I get a lot of invitations for that. And then I’m like, “Well I can’t really walk around with it,” “Oh we’ll push you in a wheelchair, it’s fun.” So it’s really good you know, ‘cos I, when I was on crutches I had to go around in a wheelchair if I wanted to go for a long period, I’d find that so embarrassing, it was the most embarrassing thing ever and especially going around [city], you know, going to the theatre, it wasn’t really built for disabled people, the streets weren’t. You know the transport wasn’t so there was a lot of challenges in that, but if your friends are pushing you then it’s a lot more fun. ‘Cos I remember in year 8 we went to London Zoo and I wasn’t good, and I got, had to get a mobility scooter. And that is so embarrassing if you’re like 12 and you’re on a mobility scooter. But you know my friends just saw it as a ride and it was just fun you know. There, I was driving it, they’re sitting on the back, they’re falling off. So it’s, it can be embarrassing but if your friends are there then they make it funny.

 

Having to live with pain on top of normal teenage pressures such as exams made Elizabeth feel ...

Is there an emotional component to arthritis?

 

Yeah you do get emotionally affected by it a lot. You do go into, sometimes into the state of depression just like, “Oh this isn’t going to get better,” ‘cos when you’re in physical pain all the time you’re just going to be depressed. And you’ve got school work on top of that, you know it’s a lot of stress for any normal teenager to go through GCSE’s and A’ levels, but doing that on top of having the stress of just being healthy you know that’s a lot of stress and I was going to like hospital appointments after hospital appointments, and then I had to catch up on all the work I missed, so I would just feel like, sometimes I was like “I don’t care. I just don’t care anymore.” 

 

But yeah I just got through that and I mean there’s only so much schools can do. All they did with me was really at the end of the term they’d say, “Well what are your targets?” And I’d just be like, “I don’t know. Sit at the front of the class so I can see,” or “Get to the lessons on time.” And that was all they could do really. ‘Cos I didn’t have any special help ‘cos I wasn’t dyslexic or I didn’t have ADHD. So they had helpers for that, but I was just mainly on my own. But yeah you do get quite depressed sometimes. But then again you know you’re on medication as well sometimes and that can affect it as well, yeah.

 

When it comes to depression, have you ever been kind of diagnosed with depression?

 

No.

 

Is it that you feel depressed, you feel low?

 

You just feel depressed yeah. It’s, you have a short time period where you’re depressed and then you feel better. And you just, you know I could be depressed for a day and I’ll just wake up feeling much better. But I’ve never been diagnosed with it, no.

 

Humira stops Elizabeth from hurting all over. She does not like needles but she looks forward to...

In terms of the medications you’re on, what are you on now?
 
I’m on prednisolone steroids, 5 milligrams, which I’ve been on for about a year, no just over a year. And I’m on Humira (adalimumab) injections 40 milligrams every fortnight, which are really good. I just took one this morning.
 
Did you?
 
And I’m on leflunomide 10 milligrams which I take every night. And I’m not on methotrexate at the moment.
 
Okay so what, what makes the Humira good?
 
I don’t really know what it does in technical terms but I’ve had it, I first had it when I was about 13 and I think I was one of the first children to really have it ‘cos they just gave it to the older people. But I have it every two weeks and near the end of the two weeks everything starts to hurt for no reason.
 
All over?
 
Yeah, all over, like I’d be taking the same medication but it wouldn’t work and I’d just, it would just start to seize up and I’d think, right this weekend you know, it’s time to take Humira. Take Humira and then in about 2 days I will just feel better. So I, and the thing about me is I don’t like needles, I’d never inject myself unless I had to, and I look forward to it, you know it’s quite a weird thing but I really like it.
 
Okay.
That’s also one of the things that worries me, if they suddenly say you can’t have it any more. ‘Cos it’s, it is a very expensive drug but oh you know, coming off of it oh no, I don’t know.