Zoe

Age at interview: 15

Age at diagnosis: 11

Brief Outline: Zoe has juvenile idiopathic arthritis rheumatoid factor positive. This affects her feet, legs and hands. She also has fibromyalgia and chronic fatigue syndrome. This combination of conditions makes her extremely tired.

Background: Zoe is a GCSE student. She is white British.

More about me...

Zoe is 15 years old and was diagnosed with rheumatoid arthritis when she was 11 years old. She first started noticing something was wrong when painful bunions appeared on her feet. Her big toes curved and the joints pointed outwards. Zoe’s mum took her to see a podiatrist who made special insoles for her shoes. Zoe said that these did not help. Zoe and her mum visited several doctors but nobody knew why Zoe had bunions. Finally, Zoe and her mum visited a specialist hospital. After blood tests, an MRI scan and an ultrasound scan a doctor diagnosed Zoe as having arthritis.

 

Zoe’s arthritis progressed to other parts of her body as she got older. She now experiences aches and pains in her feet, legs and hands too. In the mornings Zoe’s legs feel as if they are “welded” to the bed. They feel very heavy and she has difficulties moving them. Sometimes it can take several hours before Zoe’s legs are back to normal. Zoe’s condition is made more complicated because she has fibromyalgia which makes her muscles ache. She also has chronic fatigue which makes her very tired throughout the day. At one point the doctors thought Zoe had anorexia because she had difficulties eating and lost lots of weight. 

 

With all of these conditions together Zoe can be lethargic and lack energy. She sometimes goes to bed when she comes home from school and doesn’t wake up until she has to go to school the next day.  When Zoe was at her worst she missed six weeks of school because of the pain in her legs. Doctors have said that Zoe can have the bunions on her feet surgically removed when she has stopped developing. They are also keen to try new medication in the future.

 

Zoe is into alternative fashion and likes to stand out from the crowd. She is a girl gamer and listens to rock. She describes herself having “colourful” character and wants to help raise awareness of the realities of juvenile arthritis. She recommends that people who are depressed and self-harming should visit the website Six Billion Secrets.

 

When Zoe walks up the stairs her knees creak and hurt. They sometimes burn. She says they feel like a machine that needs to be oiled.

With my knees, arthritis, I just remember reading when I was little something about Roald Dahl, which has stuck to me, his daughter quoted saying that every time he came up to read her a bedtime story and his knees were creaking louder than the stairs. Which just reminds me of me when I’m going up the stairs. I hate stairs. I really do. I don’t want to go through and it feels like they’re creaking and it feels like it’s almost a machine that needs to be oiled but it can’t really, to be honest. You can feel it creaking and you can feel the pain and it’s just like, “Oh, it’s so weird.” But it I don’t tend to get hot or cold in my joints or round my joints. I’m just a weird case but yeah, it’s creaky. It can it can burn sometimes, I suppose or sometimes if they get really cold it will literally just freeze and lock and I won’t be able to move them or I’ll have to like slowly ease, which would hurt them a lot or stuff like that really. It’s quite hard I suppose.

When Zoe went to a clinic she got her height and weight checked. If she had a physical examination the doctor looked at and felt around the affected areas.

Well, you just sign in and then you wait and then they’ll have one thing where they check your height and weight. Then you’ll go back in the waiting room for a bit and the real, the proper visit they’ll call you in and you go in and they ask you how you’ve been, how your arthritis is at the moment and any trouble with it and they’ll examine you. They’ll ask you to wear loose clothing so you can like roll up to your knees or you don’t you don’t want to go in skinny jeans, as fashionable as they’re not very practical for one of those visits. But I did wear skinny jeans once. It wasn’t good. I had to like, it was proper tight around my knee. I’ve never worn them since but and yeah, you’ve got to do more practicals I suppose and then in clothes and they might get you to like lift your top up at the back if you’ve been having back problems. But they just examine you really and they go, all right and then they’re like wash their hands and then they’ll sit back down and then they’ll give you the results. And they’ll be like, “Well, you don’t seem that bad.” Or, “You’ve got quite a lot of fluid there.” Or they’ll just tell you what’s happened and then they’ll discuss treatment with you or they’ll say, “We think you’re all right. If you want to try this a little bit longer and if it isn’t working come back.” I know their lines for them. 

Zoe saw a counsellor about her needle phobia. This was helping until Zoe injected herself too close to the surface of the skin. After that she did not want to do it again.

I used to have it as an injection because I went to a counsellor for quite a while because I had a phobia of needles, which didn’t help when you need to inject yourself. But she taught me if you think there’s something good at the end of it, because I got promised a pair of shoes, so I was like, “I’m going to get through this for the shoes.” That I got my pair of shoes and I thought, “Right. I can do this.” And she printed out a little sticker, which I still have because if you put it up somewhere that you can see you feel proud of yourself that you can accomplish stuff like that. But I used to have it injection and I used to have this hypnotherapy CD every time like every week or something because I got so worked up about it. But I was getting on all right with it injecting it into my stomach. It sort of scared me in a way, because at random points I can feel the needle going into my flesh. Like I know it’s mental, but it feels like it’s just there and I think that that has scarred me. My mum calls me mental for it. I’m like, “Cheers, mum.”

But yeah, I think the thing that put me off it was I was injecting once and I injected too close to the surface and I got a bubble in my skin and I just freaked out, completely freaked out and I was like, “I’m not injecting it ever again.”

Zoe sometimes feels like a 'burden' on her friends. If she's off school for a while she feels like an 'outcast'. She worries that she might be missing out but her friends cheer her up.

I think you’d have to be like a brick to not let it get the best of you sometimes because you live life and then you, some days you kind of stop and think, “Wait, this is this is happening. I’m not like my friends. I can’t do this kind of stuff,” If I want to go shopping say with my friends I’ll sit down a lot, which sort of makes you feel like a burden to them I suppose and it can make you feel if you’re off for a while, like an outcast from your friends because they’d just go off planning stuff and you think, “Oh, just being left out.” But some days it’ll be fine because your friends and that come and see you or like give you a present, which is unexpected. But yeah, some days it will just get the best and you’ll think, “Oh god.” 

 

And you’ll end up thinking about everything so you get yourself like proper worked up and depressed.

 

Zoe visits a website for people who want to share their emotional difficulties anonymously. This made her realise some people have more severe problems than hers.

There’s a site that deals with lots of different things from like self-harm to sexual abuse to pregnancy. It’s called six billion secrets and I go on it like every day because it makes you feel a little bit better. It also shows that there are people out there that are worse than you and it’s all anonymous and you have like a little postcard shaped thing on the web and you have about four or five lines of writing or however many you want and you just have short sentences and it gives you quite a dramatic affect really. It’s like summat I was reading one recently about a woman or a girl who cuts because you don’t know the age. They’re all anonymous and she bought this cream to heal herself. She bought a bottle, which is supposed to last about a year or so and she used it up in three months. It shows the last line, because I remember this, it was like, “What have I done?” And it really gets through to you like there are people out there that that are scarred. I know they’ve done it to themselves but now they must regret it so bad and it just makes you feel what you can do to help them, not what other people can do to help you.

If you want to do something that may be tiring, plan ahead, make sure you get enough sleep the night before, and pace yourself. This will help reduce how much pain you feel the next day.

Talk to someone about it. Don’t be a bottler. You should definitely review your choices and plan things for what you’re going to do like I’d say sleep before you go and do something big that might tire you out completely if you didn’t sleep and you’ve just got to pace yourself really. You don’t want to do something too fast and then completely be painful the next day. 

 

You’ve just you’ve got to learn to just like, I suppose you learn more of experience when you do time but you’ve just got to think, also accept it. You accept it. You’ve got to say that you do have it and you can’t change it. There’s no cure, so get on with it. Bit harsh but it’s true.