Charlotte X

Age at interview: 14

Age at diagnosis: 11

Brief Outline:

Charlotte has juvenile idiopathic arthritis (JIA). She was upset and confused when she was first diagnosed. She did not want to be different form her friends. She takes Enbrel (etanercept) which helps and is doing well at school.

Background:

Charlotte is a school student who lives with her mum and dad. She is white British.

More about me...

Charlotte has juvenile idiopathic arthritis (JIA). She first started noticing her arthritis when she was getting aches and pains. She was also felt tired lots. Her ankle started to hurt after she tripped walking down the stairs. The pain would not go away. She went to hospital with her mum for an x-ray but nothing was broken so she went home. The pain continued so Charlotte went back to hospital. The nurse told Charlotte to see her GP. Her mum, Sheri, had arthritis and wondered if Charlotte had arthritis too. Sheri asked the GP to test Charlotte’s blood for arthritis. When the results came back Charlotte was referred a rheumatologist at the hospital where she was diagnosed. 

 

Charlotte found the diagnosis “upsetting and quite confusing” because she did not want to be different from her friends. She felt that it was “unfair” that she had arthritis. Charlotte was first prescribed methotrexate injections and naproxen painkillers. When this failed to control the arthritis Charlotte was prescribed Enbrel (etanercept) injections.

 

Charlotte has had very different experiences of doctors and nurses than her mum. In the past she felt like they talked over her and mainly spoke to her mum. Charlotte said they did not tell her enough about what was happening. The doctor did not listen to Charlotte’s request to have one Enbrel injection a week rather than two. This made her angry. She now has a “very nice” doctor who listens to her. The doctor understands and talks to her directly about her medication. Charlotte agreed to stay on the Enbrel which takes away most of her aches and pains. 

 

When Charlotte uses the stairs at school she has to walk slowly because her knees and ankles hurt. She is usually the last to get to music on the fourth floor but her teacher does not mind if she is a little late. If her hands are hurting she is allowed to rest for five minutes. She sometimes wears thick tights in class to help support her joints.  She is allowed to leave early but does not do it that often because she does not want her friends to see.

 

At the time of the interview Charlotte was studying for eleven GCSEs. She would like to go to sixth form and then take a gap year or go to university. She interested in art, advertising, game design and immunology.

Charlotte X was given exercises like the 'backwards banana' and the 'prayer' which targets certain parts of her body affected by arthritis.

Have you ever seen a physiotherapist?

 

Yes I’ve seen a few.

 

Are they any good?

 

Oh well a few of them were okay. And a few of them weren’t like really good ‘cos they didn’t like give me exercises where I needed them. Like when my knees are hurting they didn’t normally do my knees. They gave me exercises for somewhere else. But when I went to [hospital name removed] I have a really good physiotherapist, and she gives me exercises for where it hurts, so I have exercises for my knees and my hips, exercises for my feet and for my hands and for my shoulders. So I know what to do when I’m in pain.

 

Okay. And do they work those exercises?

 

Yeah.

 

Fair enough. Can you describe what you do?

 

Sometimes I do backwards bananas, which...

 

Yes, that sounds difficult to describe.

 

Yeah, you lay on your side and then you have to bend your legs back, so you look like a banana, like a curved banana, and then you have to raise your leg up, hold it there for like five seconds and bring it down. You have to do that thirty times on each side. With like 5lb weights on strapped round your legs, which is difficult.

 

And you do that at home here?

 

No I don’t have any weights here, but I still do my exercises, ‘cos I need to buy them but I don’t have any.

 

Okay and what else do you do exercise wise?

 

I can do the prayer. Like basically you just put your hands together and you have to straighten out your elbows and your arms. And that’s really difficult ‘cos like under my wrist it really hurts so yeah.

 

And do you do these when you’re in pain or do you do them every day?

 

I do them every day to strengthen my muscles and I do them like more when I’m in pain.

 

Charlotte X got more tired than other people her age. She sometimes struggled at school or when she was out with friends. She didn't get enough sleep but felt that this was normal for a teenager.

Do you feel that you get more tired than people your own age?

 

Yeah I do. I get more tired when I’m like, if I go to the cinema down like or anywhere and we’re walking and we’re going into shops, and I get tired and normally I say, “Oh wait for me.” And then they’re running for the bus and then I’m like, I’m like there and they’re like all the way down there. It’s like, it’s embarrassing but they’re my friends so they don’t really like mind or anything. But yeah.

 

Does that ever happen around school and just with mates normally or is that quite rare?

 

It does happen, some, they’re normally like, if we’re walking together up the stairs, they’ll normally be on the next flight of stairs by the time I’m on the one they’ve just been on, which is kind of annoying but it’s a little funny at the same time. 

 

Okay. How about tiredness in terms of sleep then?

 

I don’t get enough sleep. I normally go to bed around 10, but I normally can’t sleep till about 11, 12. Which only gives me about six hours 45, or 7 hours to sleep. And even then I’m waking up, then having trouble getting back to sleep so, it’s, yeah.

 

Is that because of your arthritis?

 

I don’t know, I think its part of being a teenager, and a little to do with my arthritis, ‘cos when your joints are sore you can’t really get to sleep ‘cos you can’t find a comfortable position. And then when you’re a teenager you don’t normally get a lot of sleep anyway, which is, ‘cos you’re always up doing schoolwork or whatever, and then your brain can’t rest and it’s just annoying.

 

Okay do you find that you wake up in the night in pain?

 

Yeah.

 

How often does that happen?

 

Probably about once or twice a night.

 

Okay. And is that, is that your joints are just aching? How is that?

 

It’s normally aching, like aching in a certain place and I can’t find a position that like stops that place from hurting, or a comfortable position. And then I have trouble getting back to sleep, so I’m normally just lying in bed awake staring at the ceiling and it’s really uncomfortable and annoying and tiring.

 

Charlotte X makes sure she gets work from her teacher so she can study for her GCSEs whilst waiting for a hospital appointment.

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.

 

Charlotte X was worried what her friends would think of her diagnosis. Most of them were supportive but one or two have stopped speaking to her.

You said that you were upset when you were first diagnosed?

 

Yeah.

 

Can I ask what you were upset about?

 

It’s mainly being like different from everybody else. ‘Cos like a lot of people don’t like being different and I’m one of them and I find, I like to like fit in with a specific group of people, but like if I feared like if any of them knew that they wouldn’t wanna like talk to me or be my friend anymore. But that’s not the case so.

 

Okay so have friends been understanding?

 

Yeah. They’ve been really great.

 

How have they learned about arthritis?

 

Well they basically hear me talking about everything and they’ve just got to listen. And then they listen and then they learn about it and then they say, “Oh what happened with the consultant?” And I tell them and then they understand and then they go, “Oh that’s good,” or “What medication are you on?” and everything. So they’re kind of like, they, they support me quite a bit actually yeah.

 

Okay, have your friends changed since you had arthritis or are they the same friends?

No. Most of them haven’t, there’s just one or two people that don’t really talk to me now, because like I have this and they hang out in other groups, but I don’t really like care ‘cos it’s their fault, it’s their loss, if they can’t be my friends I can’t be theirs. Simple.

 

And is that because of the arthritis or is that the kind of normal social school thing?

 

Because of my arthritis.

 

It is?

 

Yeah.

 

Okay why do you think that is?

 

I don’t know. I think they can’t get to grips with me being like different, just like I couldn’t.

 

So they stopped hanging around.

 

Yeah. Their loss.

 

Absolutely. Does arthritis have an impact on kind of making friends?

 

No ‘cos I don’t really like tell them until I actually know a bit about them and they know a bit about me normally, as in like what I like to do, where I like to go and what I’m interested in. When I get to know them and they start becoming like my close friend then I sort of like tell them, “Oh yeah, I’ve got arthritis.” And they’re like, “Oh okay, really?” And then like, “Okay.” Yeah. They don’t really mind.

 

Do they ask what arthritis is?

 

They ask what it is and then I explain it to them. But we’re normally talking for about an hour maybe an hour and a half.

 

So it’s quite a long time then.

 

Yeah.

 

Let me guess do they say, “My Nan’s got that.”

 

Yeah.

 

Do you correct them?

 

Yeah.

 

How does it feel to have somebody say that?

 

Well it kind of makes me laugh a lot ‘cos it’s mainly associated with older people, not like young people but babies get it, young people get it, everybody can get it at some stage in the