OK and in terms of this positive attitude you’ve got, where did that come from?

I don’t know, like I think it comes from, you know, knowing what I’ve got, feeling like I’m in control and I have the power and that my parents don’t feel it’s like the end of the world. They like just, you know, just see me as me and just, accept me for who I am and it’s really, it helps me a lot to know that my friends just see me as who I am and like, ‘Oh what, what is it?’ sort of thing. They just accept me for who I am and yeah I don’t know where it comes from, it just happened.

I always have been happy and optimistic and like obviously just have my bad days like everyone else does. I just, I don’t know, I think it’s just my attitude to life really that thinking that, you know, there’s worse things in life I would say that so I shouldn’t just really concern myself about being upset all the time because it’s not going to really get you anywhere if you’re just down all the time or anything. I suppose it’s just my attitude to life that makes me this optimistic I suppose really.

I think there was a whole manner of things that kind of built up. I was trying my best to get through my exams and my hands swelled up like a balloon and I have one exam left and it was the most important one for me, it was my media studies and I’d already decided before I’d take these exams, that’s the way I wanted to go and my hand was like a balloon and I didn’t know what to do and I just kind of went and showed someone at the school office and everyone was fussing around me and, Why didn’t you tell us sooner You know, Why didn’t you tell us you had this condition And shouting at me about it and I was just kind of sitting there with this big hand going, Well, I’ve told you now I guess My little brother didn’t really understand and we were sharing a room at the time and you know, I was sixteen and he was fifteen and this seemed a bit awkward that we were still sharing a room. Boys, friends not understanding what was going on and me not really understanding what was going on. I just had these bad tablets and the bad reaction and mum was really pushing me to go back to the hospital and, you know, I ran, I didn’t really think it through. I just ran.

How long were you gone for?

I haven’t ever been back home.

Okay.

I’m still in contact with my family and we have a very good relationship. I never fell out of contact with them but I’ve never returned home. I’ve always lived on my own since. So, ten years.

Have you changed as a person over those ten years?

Oh, yeah.

In what ways?

I’ve grown up a bit. I became very independent. I think when I lived at home, as much as I didn’t like having to do it, asking for help from my mum was okay. I could do that and she was always there but as I’ve lived on my own and got older, asking for help is a massive issue for me. I don’t like doing it. I don’t want to have to do it and it makes me feel like I’m failing if I have to ask for help.

When I was originally told, I didn’t actually understand. All I remember was my mum bursting into tears and getting very upset. couldn’t understand why, at my age that I had something that, very commonly, gets mistaken for something that only older people have.

I didn’t know what was going on. I, to be honest, at that age, I didn’t actually care. I just wanted to get out and go and see my friends. That was all I wanted to do. When the medication started, I admit I made life very difficult for my parents. I went into a denial. I didn’t have anything wrong with me. I don’t have to take this. I don’t have to take medicine that’s going to make me feel sick. I’m just like anybody else and I did go through that stage for quite a long time.

It was a good year or so later that I eventually, accepted it and sort of behaved myself, because I did misbehave. I didn’t take the drugs I was given. I sort of messed around with it. I didn’t want to accept it.

It was also made difficult at school. I had just started high school and I couldn’t do PE or games. So, whenever I had PE or games lessons, I had to go and sit in another classroom with about six other children that had learning difficulties and so catch up on homework, and things like that, because I just physically could not do what they were doing. Which in itself was a constant reminder all the time. You know, why am I sitting here? Oh yeah, because I can’t do what they’re doing.

I definitely think the joint flare ups affect me because you know I remember having massive nodules on my wrists and I hated it, you know. If I’m on a flare up like I may not, I’ll just constantly wear jeans out because I don’t want anyone seeing my knees or my ankles or my swollen joints. So I’m, so I’m very aware of that you know. But everything else I guess, no, hair loss I had a lot of with methotrexate, so my hair got really thin.

But you know once you’re gonna, when you get better things like that are, you know like the hairs gonna grow back or you know you can get your weight back to how it was, it’s just a temporary sort of glitch. And the only long term thing is obviously, yeah I don’t like my fingers, you know I really don’t like all the joint damage or I don’t like my feet, but you know you’ve just got to get on with it I think, you really have.

But yeah I definitely, you have really, really big insecurities and I think it definitely knocked my confidence massively when I was you know growing up. And it took a long time to get me that back and that’s partly the reason I went travelling. Cos when I went travelling I just wanted to, I went, my friends just, so I went, I went a someone else and came back as someone completely different with a lot more confidence. Because it’s just carefree, you don’t care what other people think, plus no-one knows your background or the history and I think that really helps.

Well, you can’t do things that other people can do. Even just like making a cup of tea or lifting the kettle or boiling potatoes like hot or having to do all the housework. Normally, I would be able to get all my housework done in a day and now I have to pace it over four or five days because I can only do one task at a time, like hoovering or lifting the washing in and out and shopping. I can’t carry bags in my hands any more. I have to rest it on my arms, which is then starting to put strain on my elbows, which is now, and, you know, and then the shoulders and they’re both joints that can potentially be affected. So I worry about the way things are changing and how I’m going to have, you know, it’s shameful. It is shameful because you can’t do it for yourself.

Is there an emotional component to arthritis?

Yeah you do get emotionally affected by it a lot. You do go into, sometimes into the state of depression just like, Oh this isn’t going to get better cos when you’re in physical pain all the time you’re just going to be depressed. And you’ve got school work on top of that, you know it’s a lot of stress for any normal teenager to go through GCSE’s and A’ levels, but doing that on top of having the stress of just being healthy you know that’s a lot of stress and I was going to like hospital appointments after hospital appointments, and then I had to catch up on all the work I missed, so I would just feel like, sometimes I was like I don’t care. I just don’t care anymore

But yeah I just got through that and I mean there’s only so much schools can do. All they did with me was really at the end of the term they’d say, Well what are your targets And I’d just be like, I don’t know. Sit at the front of the class so I can see or Get to the lessons on time And that was all they could do really. Cos I didn’t have any special help cos I wasn’t dyslexic or I didn’t have ADHD. So they had helpers for that, but I was just mainly on my own. But yeah you do get quite depressed sometimes. But then again you know you’re on medication as well sometimes and that can affect it as well, yeah.

When it comes to depression, have you ever been kind of diagnosed with depression?

No.

Is it that you feel depressed, you feel low?

You just feel depressed yeah. it’s, you have a short time period where you’re depressed and then you feel better. And you just, you know I could be depressed for a day and I’ll just wake up feeling much better. But I’ve never been diagnosed with it, no.

Yeah, a huge side. I mean there’s so many aspects. There’s the emotional response you have to being first diagnosed. That can be quite acute, quite intense for a short period of time. And I think it’s really important to have support around you whether it be friends or family because trying to do it on your own is at first really difficult, but there’s no need for it because it doesn’t make you any stronger. Having done it by yourself, it just means that you’ve had to go through a lot of suffering, well, more suffering than you’d have needed to for no reason. So I think having that support around you, whether it be, not only family but having really good relationship with your doctors about any concerns you have is really good. There are time that if I’m going through a good time, so there’s not much pain, there’s, you know, coming out of a flare, I usually am quite positive, quite optimistic about the future. But then, if I go through a flare or, you know, something, you know, something that increases the amount of pain I have, quite quickly that can be completely reversed. I can become quite depressed, quite I have a quite short term view and think, quite a short term view in thinking, you know, I can’t live like this. I can’t cope like this But it’s a knock on effect because if you have pain, you know that your work is going to suffer. You start panicking about work. You start panicking that you can’t do as much with friends. So it’s a complete knock on effect and I think it’s really important to have a think through what the pain has in terms in affecting your life before like the emotions run through.

I wanted to kill myself, I didn’t want to be dead but I didn’t want to be here in pain, so yeah. And I was just, this is going to sound really horrible but I like, I, at times and I know other people with Arthritis have said this but at times we wish we had a different illness that can either be cured or kills you, because you’re living in pain your whole life and yeah, that just seems, I was just like Why Why me But now I look back and think like I don’t think in that way at all anymore. And yeah it was quite as; I was probably quite horrible to live with because I was just so miserable and sad all the time. And I just, I’d got to the point where I didn’t know what it felt like to be happy. I forgot, I was starting to forget what it felt like to be happy and was starting to, but I didn’t know what it was like not to be in pain anymore. And then I was losing my like happiness as well. So yeah. But and the psychologist helped with that and then it was my Occupational Therapist who actually explained like the whole grief cycle, and then I’ve kind of just started to get to the point like this isn’t you, you’ve got to do something about it. You’ve got the diagnosis now, which is the hardest part you’ve got an illness, you’ve got to live with it. Yeah. So make the best out of the bad situation.

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.

Well, my earliest memory of a hospital was, like I said, I remember being on this bed thing with these people looking at me I don’t know that, I’ve got that and I remember also like to the left of me there was a little boy, because I was on a ward, and his name was [name] and he was really sick and he died but he was like my friend like at the time and to this day, I’ve never ever forgotten about that wee boy because I used to put like little pockets up because he was in this like plastic thing that had holes in it. I think it must have been like an incubator type thing but he was older than me and he was smaller than me. He looked like a baby and I used to put puppets up and try and make him laugh and things and I remember him and he was there and then he wasn’t there and that was really weird at the time. Like to this day I use his name for everything, passwords, all my dolls were called [name], my first pets were called [name]. I don’t know, I’ve always remember that wee boy and it kind of scared me because of this big plastic thing and these people looking at me. That was the first kind of thing I had and then there was other occasions when there was a trainee nurse, I think I was about five, six and the doctor asked if she could take my blood and she put the needle through my arm. She done it wrong and she broke my like she burst my vein and oh, it was awful and my mum was so mad at me for screaming and saying, You’re making a scene. Will you be quiet And dragged me out and there I am blood pouring everywhere. This woman has just hurt me and I’m like, I’m the one that’s, you know, been hurt here and I’m the one that’s getting into trouble So I think just I’ve always associated being in hospital and being sick with negative thoughts and me doing something wrong, me not behaving properly and, you know, there being something wrong with me and I don’t want to feel like that, so I just don’t go.

She was awful. She turned into the most horrendous child. She knows that, she turned into the child from hell. I had to take her every week, for a blood test she had no problem with the blood test. Fine with the blood test, and an injection, the weekly injections. So by that stage she was probably about 11 or 12, and she would kick me, she would scream, she would hit me; you had to hold her down. It was a nightmare. It was a fight every time. And once at the hospital where she was meant to be having one done, I can’t remember why they were doing it there, or perhaps that was still blood tests in those days cos she wouldn’t, she didn’t like either of those, actually. She ran off down corridors, we all had to go to find her. Absolute fear of the medication, and now she gives herself weekly injections, but she was absolutely terrified.

Wow.

Yeah. Nightmare. Awful. She turned into this like mad woman. She just, these eyes just went, it was nothing to do with the arthritis, it was the treatment. But that wasn’t anybody’s fault it was just the way she was. Actually they referred her to a, I’ve forgotten that they referred her to a hypnotherapist and all sorts. Psychiatrist at one point.

They actually saw her, did they?

They saw her, yeah.

Did they give her strategies, or things to do or?

I don’t know what they did. It didn’t work. Nothing worked. We saw the psychiatrist and Ellen could see straight through all those I’m afraid; she had the most ridiculous questions so she wouldn’t answer any of them. There was nothing wrong with her she was just being awful.

She mentioned that.

And she was scared actually.