Sabrina

Age at interview: 16

Age at diagnosis: 11

Brief Outline:

Sabrina has juvenile idiopathic arthritis and once experienced pain and swelling in her jaw, neck, legs and feet. She used to take methotrexate. She has learned to cope with her pain and stopped taking her medication when she was 14.

Background:

Sabrina is a school student. She is of Pashto heritage.

More about me...

Sabrina has juvenile idiopathic arthritis. She was diagnosed when she was in her first year at secondary school. When Sabrina was younger she experienced pain and swelling in her jaw, neck, hands, legs and feet. Her parents were worried about her development and what her friends would think about her. Sabrina had problems eating and walking and got tired very easily. She found this frustrating because she could not do some of things she liked such as playing with friends. She found it hard to sleep because if she stayed in one position her neck would ache. She said that the pain “comes and goes when it feels like it”.

 

Sabrina used to take methotrexate to help manage the pain and swelling. When she was fourteen she stopped take the medication because her condition had improved. Sabrina still feels pain in some of her joints but she has learned to cope with it. For example, she still has pain in her jaw but has learned to eat and drink at a slower pace.  

 

When Sabrina finishes school and college she would like to go to university to study Nursing. She likes socialising and bonding with new people. Her hobbies are reading, writing, watching movies, cooking, going for a walk, babysitting and hanging out with friends. She dreams of travelling.

 

Sabrina tried to find out about arthritis on the internet but didn't understand the information until she got older. Doctors and nurses helped her learn about arthritis.

Well when I just found out I had it I used to go I used to go and research about it and what the like the treatment and things like the history about behind it and that and I used to like I used to be like whatever used to research on, I used to bring up the information and like it would it would, at first it wouldn’t make sense but when I got a little a bit older, it made sense because I was young at that age and you don’t know much, anything about it but when you grow older you get to know like about everything, you get to know about loads of, you get to know loads of things.

 

Absolutely. Okay then. I was wondering whether, over the years, the doctors and the nurses helped you learn about arthritis?

 

They have, yeah.

 

How do they do that?

 

Getting me leaflets and booklets and they gave... they told me to come to a kind of a... I don’t know, like a kind of a youth, I don’t know.  I could call it a youth centre like with different where different people have different conditions and they talk about their experience and like she used to give me some websites to go on, learn a bit more about my type of arthritis and that.

 

Sabrina stopped taking methotrexate when her pain went away. Her nurse said she would give Sabrina more medication if the pain came back.

You’re not on methotrexate now are you?

 

No.

 

So who decided you to... to not take methotrexate anymore?

 

My nurse. She told whenever I used to go to hospital she used to tell me if how I, how is it now? Do you feel any pain?

 

And when I used to tell her that, I’m okay now but then if she realised that she thought my pain is gone so she took me off the tablets for a while but if I had any pain, then she would put me on it but I haven’t been on it for about a year now, a year and a half.

 

Okay. Do you still suffer with arthritis?

 

I actually do and I don’t. It comes, it just comes when it when I do something that I shouldn’t be doing.

 

And is it in the same place as where it used to be?

 

No, it’s like spreading somewhere spreading somewhere else.

 

Where is affected now?

 

In my wrist and in my jaw because, when I’m eating, I won’t be able to open my jaw that wide and when I’m yawning, I wouldn’t be able to yawn and it’s like when you, when I’m drinking, I actually drink quite slowly and it’s like when I had a sip, I wait for every ten seconds and then drink another one because my jaw can’t open that wide and it’s really annoying me.

 

Is that always the case whenever you eat now or only sometimes?

 

It used to be when, before I had my injection, you know, my injections, when I was put to sleep and I had injections inserted me, it used to be then but now it’s okay now.

 

I’m just wondering whether you struggle to drink now? Do you?

 

No, but I think say if I like, if I waited for a couple of months to go, it probably comes again because you never know when it can come again. It just comes and goes. 

 

Are you comfortable with going back to hospital for an appointment or going to the GP to get a referral again?

 

I don’t mind going but it’s like my... I’m sixteen and leaving school and it’s just it’s just my attendance I’m not expecting that amount of uncomfortable with it.

Methotrexate used to make Sabrina sick. Because it was yellow she found that yellow foods made her feel sick. She didn't like icepacks, latex gloves or cotton wool because they reminded her of injections.

What was bad about the injections?

 

They used to sting and they used to make me throw up and I couldn’t like come to the, I couldn’t, the methotrexate’s colour was yellow and I couldn’t look at the... that injection with the things or the gloves because it used to make me throw up and if I saw the colour yellow, I used to throw up because it used to remind me of that.

 

You...

 

It was the smell, I hate, I didn’t like it.

 

You know, you’re the second person to say that quite recently.  I’ve never heard of that before where the colour of the medicine puts them off.

 

Yeah, it does. I used to stop eating egg. I mean egg, I like the yolk and I used to stop eating that because of the colour yellow.

 

Do you eat it now?

 

I do now, yes.

 

PART TWO

Yeah, I used to have this little icepack but I don’t go near it because it’s, I don’t like, it’s uncomfortable for me. I don’t like it because I only used to use it for when an injection was stinging me and after when my injection had come out, I used it. Now I don’t use it after that because I don’t like it. I don’t like going near it or touching it, even like, if I had, if the injection was in that place and it was like the boxes and the kind of needle and the bin, I didn’t used to go in that place because it used to remind me of the, when I used to have this injection and I couldn’t even touch the gloves. 

 

The gloves, that used to put me off because, even though I’ve been off the methotrexate injections for about two years, I can’t go near the gloves because they make, they put me off, make me throw up. I just don’t like it. I don’t like the smell of it too.