Gemma

Age at interview: 15

Brief Outline:

Gemma with juvenile idiopathic arthritis in 1998 when she was 20 months old. She no longer takes methotrexate because she has not had a flare up for over a year. She is being treated for uveitis (an inflammation of the iris and surrounding tissue). She stays active and enjoys climbing and Zumba.

Background:

Gemma is a school student and lives at home with her parents. She is white British.

More about me...

Gemma has juvenile idiopathic arthritis. She has had it most of her life and was diagnosed when she was two years old. She experiences pains mainly in her knees which swell up and become very stiff. Gemma’s ankles and right wrist sometimes cause her problems. She also has uveitis (an inflammation of the iris and surrounding tissue). 

 

Gemma used to take methotrexate but is not on it anymore because she has not had a flare up. She remembers being afraid of the injections. She used to have a play therapist that helped her mentally prepare before each injection by giving her breathing exercises. This helped keep her calm. Gemma now takes naproxen to help with the pain, and loratidine and Losec (omeprazole) to counter the side effects of the naproxen. She also takes vitamin tablets. For her uveitis, Gemma takes daily eye drops called rimexolone. Her pain is sometimes helped if she sits down, layers up and cuddles her hot hugs.

 

Gemma tries to lead an active lifestyle. She enjoys climbing and Zumba classes. She enjoys going out with friends and tries to not let the arthritis get her down. When she is older she would like to go to university to study Occupational Therapy and become a Play Therapist.

 

Gemma stopped having blood tests when she stopped taking methotrexate. Even though the tests...

I’ve had blood tests since I can remember. Like every month but I’ve recently stopped them because I think I went on them because I was on my methotrexate, and it was like to monitor if it was working or if it was playing up with my body and stuff. But I really miss them because they were so nice, like I used to see them every month and I haven’t seen them in ages now.

 

You are the first person to say you miss a blood test. Could you explain again why you miss, why you miss them?

 

I haven’t really got a clue. But like they were so friendly and they were, you could, I know they’re not doctors or nurses, but you feel like you could talk to them about anything. You could talk to them about like your school life, your home life, anything. And it didn’t hurt. It was only the person that jabbed me in the thumb to do it that I don’t like.

 

I’ve never heard of people taking blood from a thumb.

 

‘Cos some people don’t like it having from the arm so they jab you in the thumb to do it. It kills.

 

Did you have, what did you do?

 

She did it right under the nail

 

Ow.

 

Just jabbed it. I was like “What are you doing? I have it in my arm.”

 

Oh.

 

I was not impressed.

 

Did it really hurt?

 

Yeah.

 

Did you cry?

 

It was the first time that I cried.

 

Oh. And she didn’t explain what was going on?

 

No she just did it because she thought that’s how I had it done.

 

How old were you?

 

Oh I must have been about 7 or 8 or something.

 

With the blood tests then what are they monitoring?

 

I think it was monitoring how the methotrexate was affecting me.

 

Do you know how that works?

 

I haven’t got a clue.

 

‘Cos some people…

 

I don’t ask.

 

Are you quite often like that, or is it just…

 

Yeah I’m just like “You wanna do that? Go for it.”

 

Yeah.

 

They know what’s best for me so, and that’s why I let them do what they want.

 

Some of Gemma's doctors remained the same when she moved from paediatric to adolescent services....

I just like, for the Paediatric to Adolescent like it wasn’t that much different ‘‘cos I’m still seeing some of the doctors that I saw in Paediatric in my Adolescent one. It’s just a different time and a different place.

 

And that’s literally all that happens?

 

That’s literally all that happens for the Paediatric one, but from Adolescent to Adult it’s a bit different because I’ve got to go from one hospital to another, like one team to another. And because I’ve gotten to know them so well, and because I trust them so much it’s gonna be weird going through to a different hospital and a different team. Like for my eyes as well it’s the same but I’m gonna stay, like for my eyes it’s a bit different because my eyes I’m staying with the same doctor, ‘cos I’ve followed him since I got diagnosed, we’ve followed him to every single hospital that he’s been to, and we’re following him again, little stalkers.

 

But I got kicked out of the children’s hospital eyes at 16, like the day, like there’s no, even if my eyes were flared up it would be, “Tough, you’re out of that door.” But with Rheumatology it’s between 16 and 18. So it’s a bit of a longer transition period but I still don’t wanna leave because it’s like a security blanket for me. It’s a bit weird knowing that in a few years time I won’t be going there anymore.

 

Yeah, yeah.

 

So I’m a bit worried about it but I know that the new doctors will look after me ‘‘cos everyone, the one that I’ve chosen to go to, that sounds really good and most people go there.

 

So it’s kind of making me feel a bit better.

 

Gemma didn’t want support because it made her feel different from the rest of class.

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.

 

Gemma often missed her medications and eye drops. Her dad gave her money for each drop and tablet...

I’m absolutely terrible with my eye drops. I hated them. I always got told to put them in in the morning but my argument was always, “I always have make up on so I can’t.” But Dad was like; Dad stood in the kitchen and went, “How many tablets do you take a day?” I was like, “About ten to twelve.” So like, “10p a tablet, 10p an eye drop. If you do all that £2.00 a week.” I was like, “Okay. Sorted.” And it actually works ‘‘cos I have been doing them.

 

It has made a difference?

 

Yeah.

 

What made you miss the tablets?

 

Tablets because I forgot about them. It wasn’t that I couldn’t do them or I wouldn’t do them, it was simply the fact that I forgot about them.

 

So to keep on top of it, was it an issue? Why has that changed then?

 

They get laid out for me.

 

Do they? Do you have like pots? How do you manage it?

 

When Mum comes to do breakfast in the morning she’ll lay out all of my tablets for me, and then at night after my meal, like before my meal’s done, when I’m setting the table I put one on top of my pot, ‘‘cos then I know I have to take that after.

 

Okay is that when you take all of your tablets, morning and...?

 

Morning and after my dinner.

 

Okay, nothing in the afternoon? Nothing at lunchtime or anything like that?

 

No, just paracetamol if I need it.

 

Okay. And with the eye drops, what put you off them?

 

I don’t know. It was just the fact that something was going in my eye and I didn’t really like it.

 

Did it sting?

 

No.

 

Just blurry?

 

Yeah blurry for like twenty seconds or something.

 

And how often do you take them?

 

One eye drop in each eye every day.

 

Do you have problems with your eyes?

 

Yeah I’ve got Uveitis.

 

Don’t let arthritis get you down or give up on things you want to do.

Is there anything that you would want to tell others who have just been diagnosed with arthritis?

 

Don’t let it get you down because if you let it get you down it gets worse and it takes over your life more. Like just be positive about it and don’t give in every time you’re in pain ‘cos you won’t have, you won’t have fun all the time. And like you’ll get bored with it. And you will regret it even more though. Like if you just have fun and you don’t give up at every hurdle then you’ll have a better time.

 

When you said don’t give in that’ll keep you down, what do you mean by that?

 

I don’t know. Like I think that if I’d given up at everything that I got told to sit down in PE I think that I’d regret it because people would just think well I gave up too easily. And like I think that would affect like who I am and like the friendships that I form and everything. ‘Cos people might think that oh she’s just getting out of it for like an easy ride or something. But I’d rather, like I’m quite determined I’d rather just go full into it, even if I get hurt.