Chantelle

Age at interview: 16

Age at diagnosis: 11

Brief Outline:

Chantelle has chronic juvenile psoriatic arthritis. She experiences pain and swelling in most of her joints. Her worst joints are her hands, neck, knees, wrists and back. The steroid tablets have made her put on weight. She has experienced lots of bullying at school because of her arthritis and weight. She has moved schools, made new friends and is proud of her GCSE A-grades.

Background:

Chantelle is a full-time school student. She is engaged to be married. She has no children and is white British.

More about me...

Chantelle has chronic juvenile psoriatic arthritis. She was diagnosed when she was 11 years old. She experiences pain and swelling in most of her joints. Her worst joints are her hands, neck, knees, wrists and back. She describes the pain as like a “tooth freeze” after eating ice cream with sensitive teeth. Her symptoms are worse in the morning than they are in the afternoon. Chantelle takes Enbrel (etanercept) injections, and Feldene (piroxicam) tablets, paracetamol and tramadol in tablet form. She says that the medication helps control her arthritis it and settles it down when her joints gets inflamed. She experiences less pain now than she did when she was younger because of the medication. The medication gives her no side effects.

 

Chantelle experienced a lot of physical and emotionally bullying at school because of her arthritis and because the steroids she was on made her put on lots of weight. She tried to commit suicide twice because she did not want to face the bullies anymore. She received counselling from a hospital psychologist to help with her depression but this did not work much. Chantelle’s mum paid privately so Chantelle could so a hypnotherapist. This worked and Chantelle walked away from each hypnotherapy session feeling more relaxed and happy. Chantelle moved to a different school. Before she moved the head of her year explained to everybody in assembly that she struggled with arthritis. Although she was trembling with fear when she started her first day at the new school, Chantelle found that lots of students were nice to her and offered to carry her bag and sit with her. Chantelle also received support from two teaching assistants to help with her physical and learning needs. Chantelle speaks very highly of her teaching assistants and how they helped her read and write. With the support of her TAs Chantelle has gone from being at the bottom of her classes to achieving 5 A grades at GCSE (in sculpture, 3D drawing, drawing, photography, media and fashion). She even got a C in science and is able to pass Maths and English with an F grade or better.

 

After school Chantelle will go to college to study a BTEC course. Afterwards, Chantelle hopes to get into university to study fashion design and hopes to start a business designing wedding dresses, prom dresses, christening dresses and exclusive handbags and clutches to go with the dresses.

 

Chantelle was weighed at the clinic and had her blood pressure taken. She filled in a...

So each time you go to the hospital what happens?

 

I get weighed; blood pressure, then I have to fill in a questionnaire on how I’ve been over the past month. Then my pain over the past month and then my pain, what it is today. It’d be, say if I was, what my pain is today. And then I’d, it’s on the scale of 0 to 10, 10 very painful, 0 not painful. 5 in the middle onwards. And then you go in, you talk about it, and the questions are like, “How, it’s not much, very much, much difficulty, difficult,” and that’s how they do it, and it would be, “Wash and groom myself,” and then it would be like, “Lift a bag of potatoes above my head. From above my head down. Unscrew a jam jar open,” and stuff like that. Them type of questions just so they can see how you’re getting on. 

 

And then we’d go in, talk about that. They’d assess your joints, feel your joints, see if anything’s inflamed, if you jump then obviously they’ll examine that a bit more, and they talk to you as well, just to see, well my one, my doctor actually, she talks to me, asks how I’ve been emotionally, asks how school is. Basically cover all areas of what’s going on in your life. Ask how home life is. When my parents come in at the end, ask how they’re getting on, and if they’re coping. And that’s it really.

 

Chantelle’s medications let her move her joints without hurting. She can “get on with day to day...

And does the pain change over time?

 

Yeah. The medication helps. The medication helps control the arthritis, it don’t cure it, it just controls it. So it’ll like, it can settle it, so when it’s inflamed it settles it from being inflamed. And like it’s still painful but not painful, I can still, I can bend my joints if you, if it’s inflamed I can’t bend my joints it really hurts. So the medication allows me to bend my joints and the painkillers allow me to be out of pain. So it’s all sort of controlled it in a way and it helps me to get on with day to day life like going to school and getting on. I still need the odd help with the bags and my Mum’s help, sometimes to wash me and stuff like that. But other than that it’s okay.

 

Chantelle missed lots of school and also had learning difficulties. Her teaching assistant was ...

Yeah my one TA has done a fabulous, I was unmarkable this time last year, I couldn’t read, could just about write, and now I can read, I can write and I’m leaving school with at least 5 A’s, and that’s, not in the Maths and English side it’s in the creative side with the fashion and my art and Media and photography. But it’s still good compared, I was unmarkable with my maths and I’m leaving with at least an F, and my English with at least an E which is good ‘cos I was ungraded last year, and they said I wasn’t gonna get a GCSE grade. So if it wasn’t for my TA doing extra work and just going out of her own way buying English books from primary schools and stuff, if it wasn’t for her using her own money or helping me I wouldn’t be where I am today. But my TA has done fabulous to help me get there.

Chantelle was verbally and physically bullied at school and tried to commit suicide. She advises...

Well physical. Mind bullying. Everything. Basically it was just a group of girls thinking that they was funny, like ‘cos I was the odd one out and obviously I was on medication so I obviously I’m gonna be bigger than everyone else ‘cos of the steroids so they decided that they’d pick up on me being larger, they would bully me because I had arthritis and think it was funny to hit me and do things and they would hurt me, but they thought it would be funny. So they just carried on doing it and then they’d call you names, call me like, “Oh Granny disease, don’t go near her you’ll catch it.” And stuff like that which if anyone does get bullied I would advise them to talk about it and tell someone ‘cos I didn’t do that and I went the other way and tried to commit suicide which I do regret now ‘cos obviously I’ve got a big life ahead of me. But back then you don’t think, ‘cos it gets so much on your plate. So it was hard but there’s always, once you’re tell and they get caught and they do get punished so, I’m still going to tell.

 

So that’s an important message, not to be quiet, but to…

 

Yeah.

 

...to tell others. Who did you tell?

 

Well my mum. Well my mum caught me in my room as I was about to commit suicide. And that’s how it all come out in the open and I didn’t go to that school. I was off school for about three months while that was happening so then that’s when we found [name of school removed], and I found telling everyone I had arthritis and having a whole year in assembly being told about it and what it’s about was much better ‘cos when I went everyone understood and didn’t seem, obviously I stood, still felt a bit the odd one out, but I wasn’t so much ‘cos they make you feel welcome. So...

 

Chantelle’s teaching assistants have been “fantastic” but her teachers sometimes fail to...

My TA’s have been fantastic because obviously they know what’s wrong and how to address my arthritis. But some teachers are okay, then you’ve got some teachers that just “It’s arthritis, it’s no big deal. You can do this. You can do whatever,” But you can’t. Some stuff you just can’t do and the teachers don’t understand that. Which makes it difficult when you’re at school ‘cos then it puts a, you could go into a lesson and it makes you feel sad and upset ‘cos that teacher doesn’t understand. And then it gets me frustrated personally ‘cos I can’t explain to the teacher ‘cos I don’t know how to explain to her, “This is how you…” I can’t do it. “This is how you’re meant to adjust,” I just wish that they would know.

 

Could you give me an example then of when, what you were doing and or rather what you struggled to do?

 

Yeah well I was in Media and the teacher was there trying to do something, and the teacher just, just wasn’t taking no notice and he was like, “Can you come over here? Can you do this? Can you make, can you press these buttons?” And the buttons were so small I was like, “I can’t do that.” And then he’d get me to bend down and do stuff. I was like, “My back and my arthritis in my knees, just I can’t do that.” And it’s, “Why can’t you do that? You look normal to me.” And it was, “Oh you’re trying to get out of this lesson ain’t you?” It was like, “No I’m not trying to get out of the lesson, I have actually got an illness” and because other kids try and get out the lessons he just put me in that category. Instead of actually looking and thinking, “Oh maybe she does have an illness.”

 

Okay so if you had a message to tell the teachers what would be, what would be the things that you’d want them to know?

 

If they have a child in their class with a particular illness, like me with arthritis, to research it and try and get information. And make sure that they don’t do something in the class that’s complicated and that that child can be incorporated. And be able to feel like part of the class, not sometimes the odd one out in the class.

 

Chantelle met her fiancé when she was in a wheelchair. The wheelchair doesn't affect their...

Well I’m sort of lucky with my fiancée ‘cos he’ll push me round in my wheelchair. It don’t really affect us at all because he met me when I was in my wheelchair and it never affects us because we can always go out, whenever we go to parties, if I’m in a wheelchair he’ll still take me. And he just rings up and tells ‘em to get, make sure there’s disabled access. And he still makes sure, we go out for meals and stuff and we always do the normal stuff a teenage couple would do, it’s just, we just don’t get to actually, oh I don’t know how to explain, ‘cos we, sometimes I’m in a wheelchair so sometimes we can’t go to funfairs like my other friends do go to ‘cos sometimes it hurts my joints. 

 

‘Cos I find that when sometimes I go on fair rides it hurts my back, but sometimes I go on them and I’m not meant to.

 

Chantelle had difficulties with friends and was bullied at school because of her arthritis. She...

Yeah, with my first one my mum discovered me with, she walked in my room ‘cos she was upstairs, just come out of the bath I think she did, she’d just dried all herself off, she come in my room to see what I was doing, she saw me with a belt and then, that’s when it come out and she took me out of school, didn’t send me back at all. She rang them up explained, we had a meeting and the two bullies were there, both girls and one of them couldn’t look at me in the face, the other one laughed, which I just think how low can you go? But yeah that was, once I’d gone out of that school, once my mum had found out I just felt like I could breathe. I felt a big weight come off my shoulders and at first I was really insecure like, my mum and dad for the first few months they kept me off school was the reason they kept me off school was because one, we couldn’t find another school, but second they needed to get me back into reality life like. 

 

I wouldn’t go outside. I wouldn’t, they took me to town. I’d be in the middle of them holding their hands ‘cos I was scared of what people would do so they had to get me out there in the big world again and get me used to doing my own thing. So I went out, got used to it again and finding it hard and the hypnotist lady helped me to go out in the big world again and be all happy. 

 

And then the second time I did it, I actually went to my Mum after about three hours of doing it ‘cos I was started to feel really drowsy and have a bit of stomach pain and I realised what I’d done. And then I went to my Mum, it was actually after my Mum said, “Come and give me a hug” and said, “I love you, goodnight.” That’s when I realised, “Oh my God, what have I done?” Then I went to my Mum, told her, we went hospital. Luckily it wasn’t nothing dangerous I’d took, it was just meant, it would just make me sleep for a good few hours. So, but then I went to the psychiatric lady in the morning who’s from CAMHs and she’s helped me to overcome that, which thank God. 

 

And then now I’m out of depression I realise there’s always a light, it’s like being in a hole and you’ve just got to climb up that ladder and once you’re up that ladder that’s it, that’s your past and you’ve just got to look on in life and think “I’ve got this. I’m leaving school,” like for me I think, “I’ve got five A’s, yeah.” The two grades are really good. My English and Maths they’re brilliant to me because they maybe not the highest of grades but I was unpredicted grades, so they’re fabulous to me. And I’m thinking life’s looking really good for me now. But when you’re down in that dark you just think there’s no way out. But what you’ve got to keep doing is, you’ve just got to climb up that ladder step by step and take each day as it comes.

 

After Chantelle attempted to commit suicide she was referred to CAMHS (Child and Adolescent...

But I got referred to CAMHs. And they were really good ‘cos they, the lady I had was really fantastic. She talked me through, we went through how I felt and I was there for a number of weeks, every week going there, every Monday or every Wednesday. And just talking through and she rang my school, told them. My school was fully aware and very helpful. It was on an upset day, I still went in but I didn’t have to do the lessons like that would stress me out and get me angry or feel even more like crying. And if I felt like I needed to cry my TA was there and I could just cry and let it out. But it was very hard. 

 

‘Cos the lady that I had the second time was more private and confidential to me, she didn’t tell my mum everything I said and she was more like down to my age like, and she knew how I felt ‘cos she has been there and done it herself. And she had seen the bright side of it. She was telling me how she felt and I could connect with her much more better and she could tell me and help me overcome it, and she was telling me, it was just like being in a hole with a ladder and you’ve gotta climb up it slowly, step by step. And she give me sheets for each day, write down how I felt and we just done strategies and it just, eventually it worked.

 

And I guess do you remember what those strategies were? And can you talk about those?

 

Yeah. One of them was ‘cos I was quite an arty person instead of wordy, I would draw a picture and I would draw how it made me felt that day. And then we would shred ‘em after. And it just, once I’d shredded them she said, “That’s gone now. That’s done.” And it actually made me feel happier. And then she’d also did one that I told her, and then she also, she sort of, she also advised me to tell the people who was upsetting me, tell ‘em and that was my biggest, ‘cos I didn’t have the confidence to walk up to them and say, “Hey, do you know that’s really upsetting me. Can you stop that?” 

 

And I actually rang up that friend who, and I told her, “Do you realise,” and then she realised and she sort of changed. She said sorry and we, we’re not friends but we don’t, she don’t upset me anymore the way she used to because I was able to get the confidence to say that. So it just helped me overcoming the situations and with school she come to the school with me and helped me tell the teachers what was going wrong and how I felt. And with my illness she just helped me to find ways, ‘cos I think it was more the medication had just changed from the methotrexate to the Enbrel and I was just even more lower, ‘cos I just, when you go onto new medications your body has to get used to it, and it took about six months for it to work in my system, so it was just, my arthritis obviously flaring up in that time. So it was just I was getting low, and she helped me to overcome the loneliness.

 

Chantelle saw a hypnotherapist after she tried to commit suicide. She felt “happy” after her...

What’s a tapping method?

 

It was, I’d say all the bad things that they’d said to me, but tapping each finger there, it would be with your different like there and there and there, and all your hands and you’d do your shoulders and you’d say all the bad things. And then you’d let them go off in a balloon but it wouldn’t be a real balloon, it’d be in your mind and it would just, once you’ve just sat there and you’re in the mode it’s really, you actually believe as if it’s happening. 

 

And then the second one she did with me I’d lie down, and she’d put some like, well me I was pretending I was on a beach in ‘Costa Brava where I went with my brother, and what we did then, she’d put the music on and I’d be going into the beach and it would open up like a piece of paper and I’d be going into all the bad times of what’s happened at school. And then we would be pulling them out like weeds, and then as we’d pull them out they’re being binned. And then we had to set them on fire so they burnt away and it was just made ‘cos I was asleep, I wasn’t asleep but I was in hypnosis like deep in thought and she was helping re-sort my mind out. And that went to the back, she was putting that at the back of my mind and as she brought me forward, really to my own forest I come out at the beach at the end. So at the beginning you begin with the beach, going into your bad thoughts and you end with the beach. And then she brings you forward and you just open up with a smile then because she puts them to the back of your mind. And she sort of like, I don’t know it just done something to my mind, yeah it had happened, I’d come out, yes I’d been bullied but I didn’t feel, I didn’t feel depressed about it anymore. I felt like, “Oh I wanna go shopping,” instead of, “Oh I actually don’t wanna go out. What if someone looks at me? What if someone says something?” I actually wanted to go shopping. Yeah.

 

That’s remarkable wow. Wow thank you for that. So you came out, you were smiling and do you, did you feel better?

 

Yeah it just made me feel happy. And my mum and the whole house the mood changed. My brother, when my brother was living here as well everyone just felt happier because when I was going down through depression the whole house went sort of low as well, ‘cos I was the baby of the house obviously. I was normally the one that brought the life into the house and when I was down everyone was like down too with me. So when I was happy again everyone was sort of, the house went back to normal.

 

Okay then and you talked about a CD?

 

Yeah. This one’s called the rain forest, it’s a relaxation CD. I put it on at night or in the day, whenever I feel, and it just relaxes you and it recharges your mind. I do it on stressful days, you put on and it just relaxes your mind and I normally do it before I go to sleep ‘cos I have trouble sleeping if everything’s on my mind. So I put it on and it, if you want to wake up it will say to wake up, but if not it just tells you to drift off into your sleep which I normally do. But it just relaxes your mind and it takes the pressure off. It just stops it all from building up again; it keeps it empty in a way.