Beth

Age at interview: 13

Age at diagnosis: 4

Brief Outline:

Beth has juvenile idiopathic arthritis. She was diagnosed when she was four years old. She used to take methotrexate and Enbrel injections but is now trying to live without medication.

Background:

Beth is a school student. She lives with her parents and is White British.

More about me...

Beth has juvenile idiopathic arthritis. She was diagnosed when she was four years old. She had problems with most of her joints but her toes, ankles, knees, wrists and fingers were the worse. A nurse used to come to Beth’s home to give Beth methotrexate injections. Because Beth was sick after each injection the doctors decided that she should try Enbrel (etanercept) injections instead. Beth’s mum and granddad used to mix the medicine and then Beth injected herself with an EpiPen. Beth was never sick after taking the new medicine. When Beth had a bad flare-up she would go into hospital for steroid injections in her joints. The doctors put her to sleep before her steroid injections. 

 

At the time of the interview Beth’s arthritis had improved lots and she stopped taking her medication. She said she could live with the pain in the morning and when the weather was cold. Shortly after the interview Beth got worse. She returned to hospital and was given 24 joint injections. Her doctors also put her back on Enbrel at a higher dose 

 

During the interview Beth said that she did not mind going to hospital and described it as “her second home”. She has blood tests twice a month in hospital. She has known some of the nurses since she was first diagnosed and finds them friendly and easy to talk to. She finds it easier talking to her nurses about arthritis than her friends and family.

 

Beth is very arty. She enjoys drawing, painting, photography and video editing. She really enjoys dancing and practices different styles (contemporary, ballet, street and hiphop). She is also happy to crash out in front of the TV and watch movies. When she is older Beth would like to go to an art college to study photography. She hopes that her arthritis will not get in the way of her dancing when she is older

 

Beth feels like she knows a lot about her condition as people taught her about arthritis when she was very young. She would like to meet other young people with arthritis.

It might actually sound weird but I don’t, I usually just, sometimes my Mum, I think my mum and my family’s just told me about, about it and the hospitals told me more about it, but it’s like I, it’s like I remember when I was little what’s gone on, it’s like it’s all come back, so it’s like my brains just like a new brain. I know exactly what it’s about for some reason, even if no-one’s told me about it I feel like I know way more than anybody else knows about it for some reason.

 

It’s a bit weird.

 

So I wonder where that came from?

 

It’s just like I know everything about it, and I just can’t remember who has told me or what’s gone on, I just feel like I know everything about it.

 

I imagine it might be a bit of a daft question but do you still go looking for information now?

 

Sometimes if I go to the hospital for a check-up, they ask, “Do you need any questions?” And I ask some questions like, “How come I’m in so much pain in the morning?” or, “And I’m not after school?” and stuff, but not very much. No, not much.

 

Okay, and do you ever go on-line or anything like that to find things out?

 

No. I don’t like, I don’t like going on and knowing about it because it makes me feel a bit, a bit uncomfortable. But it’s nice to know that other people have got it and they know how I would feel. Because we’d have something in common, not like, “I like football, you like football?” Stuff like that, but as in we know what’s, what is going on and we have more in common ‘cos we know how each other feel.

 

Do you, have you got friends with Arthritis?

 

Not that I know of, no. My Granddad, I think my Granddad’s got it in his fingers so he knows a bit about it, about how it can be painful and he’s very supportive about it, he likes to ask, “If you’re in pain, you have got to tell me ‘cos we’ll have to go back on the injections.” He’s very supportive but I don’t think any of my friends have got it no. I tell my friends so if I’m in pain they know why and they can take me to the teachers, and I’ve told the teachers well what’s happened and stuff. And if I need to like take a break or anything then I can. If I’m writing for a long time then my fingers start to hurt. 

Now Beth is older she may have steroid injections when she is awake, but she would rather be asleep.

I come off the injections, I see how I go and if my joints are okay and it’s lasts a while then that’s good and I don’t have to go back on them. Sometimes I go back in the hospital to have a check-up to see how I’m going whilst I’m not on the injections, but if sorry, if I get if it’s like they get worse or decide to ache, then I have to go back into hospital and they have to give me a check up and see how my joints are, if I’ve got swelling or if they hurt anywhere then I’ve got to book my appointment to go back in to the theatre and have joint injections, but hopefully I’ll be okay.

 

And these are steroid injections?

 

Yeah.

 

But they do it when, they put you to sleep do they?

 

They put me to sleep yeah, but ‘cos I’m older now they could keep me awake. I haven’t had it awake before and I don’t want to. Because I’d rather be asleep and now knowing what’s going on than be awake knowing what they’re doing. So I’m trying to convince them if I do go back in again to have it back asleep because it’s, I find that it ‘cos you’re asleep you don’t know what’s going on, you’re not stressing about what they’re doing. And you’re just more calm and relaxed ‘cos you don’t know what’s going on.

 

Beth enjoys her food and “could eat all day” but she tries to exercise too.

I love my food, I could eat all day. Most of my family loves their food, I love eating like the wrong foods, I eat loads of the wrong foods. And I don’t like fruits and vegetables, but I know that I have to otherwise it won’t be good for me. I do a bit of exercise and keeping fit. I go dancing and other sports, walking my dog around the block which is terrible because he’ll just run, so that’s my running for the day. There’s things on the Wii, I do Wii Fit to keep myself fit. I do different activities and that’s very tiring. So yeah I have got to watch what I eat and what I do but besides that I think I’m okay, so I am for now.

 

I mean, realistically do you watch what you eat because of your arthritis or do you just kind of eat what you want and let your Mum...?

 

I love to eat what I want, when my Mum’s not here I’ll just pig out in the cupboards and whatever else I can find, but I am stopping what I’m eating because I know that it’s not good for me and ‘cos of my arthritis and stuff, so like I try to eat more fruit. And I don’t mind fruit, I don’t mind eating it, I don’t mind eating vegetables as well, but I prefer to have the wrong stuff. 

 

But yeah I have got to watch what I eat and stuff, but even if I don’t eat as much good food I do keep fit, so that’s okay for me.

 

Beth doesn't like to talk about arthritis because she doesn't want other students treating her differently. She has to tell her teachers so she can get up and stretch in exams without being shouted at.

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.