Caitriona

Age at interview: 19

Age at diagnosis: 13

Brief Outline:

Caitriona has juvenile idiopathic arthritis (JIA). She spent many months trying to find a diagnosis. She experienced depression because of her sudden loss of mobility, pain and weight-gain. Arthritis Care helped Caitriona to be confident in public and she now volunteers for the charity by giving advice and talks to other young people.

Background:

Caitriona is a full-time university student studying law and politics. She also volunteers for Arthritis Care. She is white Irish.

More about me...

Caitriona has juvenile idiopathic arthritis (JIA). She was diagnosed when she was 13. She first started showing symptoms in 2005 after she was hospitalised for an unrelated incident (she was taken to hospital after somebody spiked her drink). She woke up the next day with a swollen ankle. The swelling would not go down. Caitriona searched for a diagnosis and spent five to six months visiting different hospitals for tests (she had blood tests, MRIs, x-rays, CT scans and DEXA scans (a test that measures the density of bone)). Doctors at the hospitals told Caitriona that she had sprained her ankle. Caitriona’s mum was told by doctors that she was “play acting”. Caitriona’s GP eventually diagnosed her with arthritis and he referred her to a consultant. Caitriona explained that when she was waiting for a diagnosis the arthritis spread and affected other joints, not just her ankle. Now Caitriona experiences pain and stiffness in her toes, ankles, knees, hips, and hands. 

 

Caitriona struggled to come to terms with the diagnosis. She said that she was in denial for 2 years and said that “it completely turned my world upside down”. She went from being a sporty and social teenager to a young woman who could not walk or get out of the bath without help from others. Her steroid injections made her put on weight and her waist size doubled. She avoided leaving the house and became depressed and lonely. Caitriona’s parents worked closely with her rheumatologist and Arthritis Care and, over time, Caitriona came out of her shell and started enjoying life more. She went away for a weekend organised by Arthritis Care. She spent time with other young people with arthritis and attended various workshops about arthritis. This made Caitriona realise that she was not alone. Caitriona gained confidence and started interacting with other people more. She now volunteers for Arthritis Care and often gives talks to young people with arthritis and helps run workshops.

 

At the time of the interview Caitriona was experiencing a flare up. The pain Caitriona feels during a flare up is different to the pain she feels on a day to day basis. Caitriona said that the pain she feels on a day-to-day basis is “a numb pain which I describe as a growing pain. It’s like inside the bones, one that you can’t really get rid of.” When she has a flare up, Caitriona describes her pain as “a sharp kind of stabbing pain which isn’t very nice … you can’t get over it, that’s when you know you have to go to the doctors to get injections etc.”. During the interview Caitriona said that her ankle was causing her the most discomfort. It was “big, puffy, very tender, sore to walk on [and] hot”. She also had limited movement in her hips and felt pain if she moved too quickly. Caitriona often has flare ups in wet weather. She feels her joints throbbing with pain. Caitriona jokes and says that her body knows when it is going to rain because she feels the pain before the rain comes. 

 

Caitriona is studying Law and Politics at university. The university gives her lots of help such as extra breaks, extended deadlines and Livescribe to help her take notes. 

 

Doctors struggled to find out what was wrong with Caitriona so they ordered lots of tests.

To begin with I had blood tests and needless to say my first blood test was quite eventful. It was just awful, it just, you know the feeling you get after? Some people may or may not be able to agree with this but I always feel dizzy as thirteen, getting my blood taken for the first time, needless to say it was a bit traumatic. X-rays I had to go for I think within that, I went for about ten, eleven x-rays on different occasions. I actually went for two MRI tests and they, they did numerous things. They grabbed my ankle, one of them actually suggested opening the ankle, you know, operating on the ankle because they were convinced it was a, a tendon that was too tight and that was; and they said they'd cut loose but nothing really came to be until again I'd visited my GP. She recognised, she was friends with the consultant and I think that's why she was so aware of it and she referred me and then since then I've had blood tests again to look at the inflammation markers. I've had the ultrasound scans on all my joints and that happens every time you go for an appointment, it's the best way for them to see if there is any inflammation in a joint. I've had CT scans, DEXA [bone density] scans, I've had quite a lot. Quite a lot of scans but the one that really is vital I think to a doctor for you know, arthritis is the ultrasound scan because they can show the patient and the parents what it is that's there, why you're feeling your pain and kind of because I've been told for so long, "No you've nothing, you know, it's a sprain, it's, you know, your ligaments," and then to be able to see on a wee screen, yes there is an explanation to my pain, to the reason I feel like this it's just quite nice as well.

Caitriona had mixed feelings when she was diagnosed. She first felt it was a positive thing but...

Well in a sense it was a positive thing because I knew what was wrong with me but at the same time, I mean I think I took it one of the hardest that I'd known anybody to take it. I've spoken to people in, in support groups and they said that they were quite OK. I, it completely turned my world upside down. I was taught in school from, in first and second year that children actually couldn't have arthritis so I kind of doubted the, I doubted what it was and that I could actually have it and for two years after my diagnosis I didn't go out at all, I stayed in my house. My mum and dad actually were quite worried. They preferred me, they wanted me to speak to people about it, they wanted me to, you know, to find some kind of help. They got Arthritis Care involved, the, and my mum and dad and my consultant who all worked closely to try and take me out of my kind of soppiness, my whole 'Oops, I've got arthritis', but yeah it just couldn't; I mean school completely changed. My life with my friends completely changed, the family life changed, everything, it was just the thought one of these diagnosis that you can take and go, "Ooh, I've got arthritis, that's me," it's something that really did have a huge, huge impact on my life.

Caitriona thinks her consultant is “inspirational” because of the attention she gives to young...

She does the scan; she's been fantastic through it all. She you know there are times when they can kind of go, 'Oh god I get my doctor,' but at the same time when it comes to it, I seen her work with both myself and with, you know, small children and what she does is inspirational and I mean that's not a light word, you know, I say that and I mean that. She sat with me, she explained everything to me, she taught me what you know, what happens and why they don't understand it. She was honest, she says she doesn't really understand it so I mean that kind of feeling hit when she says "I've been working at this for a while and I don't quite understand it.” 

 

It was only in 2000 that they actually, all the doctors just, you know, agreed on the name for it which was JIA, juvenile idiopathic arthritis, so her and one of the nurses, one of her close nurses who works along with her, sat and explained it.

 

They put me in contact with Arthritis Care, they gave me numerous flyers. When you are diagnosed there is; if you're told, I mean, my doctor has, I mean not everybody with arthritis as a child is treated by my consultant but most people are and when they're given, you know, when they belong to her, she does, she recognises that it's not just your joints and the flare up itself. She recognises that it's the emotional side, it's the family, it's your whole world is affected and I mean I couldn't have asked for more. It's just trying that within myself to accept what has happened and try to push forward.

 

Caitriona’s arthritis is better when it is warm and dry. She knows when it is going to rain...

I was wondering whether or not you were actually affected by heat in any way?

 

Yes I haven't been able to run in seven years since I've been diagnosed and I went on holiday to Cyprus a few years ago and for the first time in a long time I was able to run. I took my Mum and Dad by complete surprise, they couldn't believe it and, well people ask me, you know, like old people can you tell the weather through your joints? I have to say yeah, when it's going to rain I feel it. Again you've got that kind of growing pain, that feeling within your joints and it just kind of starts throbbing a bit and I can say, "Oh need a coat, it's going to rain," and when it is cold it does have, it does, some people can't distinguish and that's people who are newly diagnosed, they can't really distinguish the pains or can't tell the difference on what's affecting them at what point and there are still some kind of times where I can't distinguish, "oh no what's this, what's this? Am I just sore? Am I sore for reason?" But when it comes to the weather because that's what had it for a while now, I'm able to tell, you know, if it's going to rain or if that's why I'm sore and prepare myself for the, an extra painkiller.

 

Caitriona is pleased with her doctor because she is “constantly working” and trying new things....

I was in a few studies that my consultant runs and you know, about the steroids because they don't have anything for to protect, you know, to protect children's bones when you take steroids because they thin your bones. And what happens then is she gave us calcium and vitamin D and we went on all these she calls it a 'pop study' which is trying to find a way to protect a child's bones from the steroids. An adult you can just give them Vitamin D and calcium that'll work perfectly but they aren't sure how to help with children so eventually that'll lead to osteoporosis. I'm quite lucky in the fact that we, you know, we, you know, we were constantly very careful, we monitored it and there may be thinning in my bones but it's not anything as bad as it could have been. 

 

Not to say that she's come up with any results but it's definitely she's, she's one of these people who are constantly working, she's constantly trying to find a different answer and trying to show you different ways and what she can, you know, go through things. So and then Enbrel injections …children are very lucky in the fact that they can be put on them straight away. As soon as she feels a need for these anti-TNF drugs she will prescribe them. I'm on the injections and there are no side effects of them at all. Well at least that they know about now, they're quite new so they're not sure about the long term effect of them which is quite scary because I'm not sure how I'm going to be in twenty years now. It's, my future's kind of shady in that sense but I mean other, you know, than the initial prick of the injection there's nothing really too bad about them. I've been on them for almost two years now and they are, they're a wonder drug, same with methotrexate, they're a wonder drug.

 

I've still got questions about the drugs but before I kind of mention them I was interested in whether or not, you can sort of say no to this but did the quality of care change once you were put on any studies? Did things change? 

 

Yes. In a sense when I get put on studies it's like I'm on, in private care, anything I want. Although my doctor when I'm; if I phone up my doctor I can get an appointment whenever I want and she'll talk to me whenever I want but that's not the way it's supposed to be. That's just something she's taken upon herself whereas in the pop studies I get extra scans, to go to the nurse if I need something at any time, any time of night I can phone up. I get seen after the clinic, I don't get seen during the busyness, I get seen after on my own individually. It's kind of like private, going private. It's not with everybody else so there are advantages to doing it. But at the same time I'm lucky enough to be with a consultant who is always there for, you know, any, any kind of question I have, any illness I come with, you know anything that happens to me, you know, I can phone up, phone up the nurse and have an appointment within a week or two.

 

Caitriona had difficulties staying awake and even fell asleep during a family dinner. She has...

Yeah. I've actually been videoed by my mum and dad falling asleep in my dinner once. I mean things so stupid; no-one really understands how tired you can get. I mean at the moment I'm sleeping, I mean, I'm going to bed early, going to bed about half eight and waking up then at about twelve the next day. It's so draining, doing the simplest of tasks can be so draining even going in the school. I would go in the school and by the end of the day I would be completely wiped out, complete, I mean I would fall asleep after I'd come home from school. I've fallen asleep on the buses once or twice as well which is again embarrassing. So yeah it's something that really, you know, that's one of the main symptoms I would say of arthritis or even having any kind of illness. And it's really, really bad when you have a flare up because you don't realise how much a flare up affects you. But whether you do have a flare up, yes you can get tired but compared to the tiredness you get when you have a flare-up is a lot more; I mean yes I fall asleep in places whereas when I'm, you know, OK and I'm a bit tired I can keep myself up. I keep myself awake, I can, I can, you know, do everything I have to do. Maybe not as well as I could do but not to the same extent as what happens when I have a flare-up because when that happens, I mean I just fall asleep. There is no waking, it is a very, very tough thing to deal with.

 

How have you coped with sleep? Can you, are you OK with sleep?

 

Sleep is another issue I have. You know I have problems sleeping sometimes because of the pain. Can't find a comfy position, I can't sleep on my back or my front because I can't breathe. So I have to sleep on my sides but when my hips are both swollen it's quite an ordeal trying to find a sleeping position. I found recently that I've had to take a tramadol to go to sleep. I've done that for the past three or four nights now because I am in the middle of a flare up. I've been offered sleeping tablets, I've turned them down but I'm getting to the stage where it is becoming a real issue. Beforehand there, you know, there were things I could do, medications I could take, I've got a different mattress, different pillows, you know, different things to try and help me but it is something that is an on-going problem.

 

Caitriona has a positive outlook on life, accepts support from those around her and sleeps lots...

How do you kind of cope, how do you manage with these things?

 

It's a very tough question. A positive outlook I think and support. I find that if you don't accept the support, you know your pride. People don't accept the support that's offered to them. You know you should swallow that pride, you should take, I should take whatever support is on offer to me. When it comes to things it's again having my mum playing devil's advocate, you know, are you capable of doing this? Are you sure you're not planning too much for yourself? You need, I mean I now I get myself days where, you know, I will not plan anything and although you know, people they say that's lazy but having those days to kind of recoup and have a bit a, you know, have a nap or whatever. I mean even having naps on your busy days but I found that, I would go to school, I would come home, I would have a nap for an hour and then I'd get up, do my homework, have my dinner, have a bit of, you know, me time and then go to sleep and then of course, we had a routine. Now with university it's a bit easier to find times to sleep than as I say you’re not in school the whole time you can have a sleep in and then start your work or go to your lecture which is a bit more friendly, you know, in terms of arthritis. But I've been trying to manage things like that, it's, I mean, it's so hard to describe how you do manage it. Sometimes you just have to get on with it no matter how…I mean I've been yawning all today, been having quite a bit of trouble trying to, you know, get into a place where I am. OK again but as I said it's just trying to push through that and it's unfortunate. I mean people shouldn't really have to but it's a sacrifice you need to, you need to make.

 

Caitriona has various things to help her study including a library assistant and a laptop.

Have there been any adaptations or anything that the university's done to help you with your arthritis?

 

I've been offered, well actually have, I don't make use of it too often because I've found myself coping recently. I have an assistant, I have a library assistant, I have a laptop so I don't have to write all the time, I have a pen which I have special books for, it's called the livescribe, it's fabulous and it records my lectures and then when I write on this special paper I plug the pen into the computer and all my writing comes up and I'm able to print it off and save it or tweak it. I've also been offered or also have voice recognition software so I don't even have to write, I can just talk and talk and I have extra time during tests, rest breaks. I can use a computer during tests, I can get my deadlines extended so on that front, I mean, I've actually received more help in university than I've received at school. So on that side, I mean, having a disability in that sense can have its advantages because I feel that I'm more equipped for university than any of my other friends. 

 

Caitriona volunteered for Arthritis Care because she wanted to “give back” to a charity that has...

Well I'm a youth contact. So I help run the weekends and the events on which I actually participated in the beginning. I was offered the role when I was sixteen and I jumped at it because I thought this organisation has helped me so much that, you know, I need to do something, I need to give back. So I kind of did that sixteen/seventeen and I went through the training and then finally when I was eighteen I was able to help actively within the organisation. Now what I do is I, because I'm so dedicated to it and to the message it sends out I'm constantly at different fund raisers, I'm speaking on behalf of the charity. I actually sometimes go down to the clinic in which there are, a doctor runs, to try and spread the word to the young people and say, you know, "Yes you've been diagnosed but there are people, you know, similar to you." We try to reach out to everybody because we love seeing the same faces but it's the people that we aren't reaching that may need the help more. So again trying to include everybody that we already have and trying to reach out to other people to try and help them. And I think that's the main issue with arthritis and young people. It is not known. People don't know that young people can get arthritis, it's actually quite rare in a sense as well. I think there's only four hundred people estimated in Northern Ireland to have it which if you look at statistics for other illnesses, it's quite low. So it's, again trying to get the word out about young people with arthritis because as soon as you do that, I mean although it sounds like a stupid thing, you know, when people know that other people have arthritis but you know, and they're young, it, you know, it will help but it really does help. If you know that other people are going through the same thing that you're going through, the effect on yourself can be, I mean, remarkable, it will be remarkable.

Because Caitriona didn't tell her boyfriends about her arthritis they struggled to understand why...

Mm well I've had positive experiences when it comes to relationships with boys and I've had very negative relationships with boys. I've found when I was diagnosed I mean, I started dating from an early age I'm embarrassed to say. But when it comes to boys I found it easier to be able to not tell them and that was awful because I mean the ramifications - they'd ask you, "Do you want to go to the cinema?" I'd be like, "No I'm too tired," and they're like, "Why are you too tired to go out?" and you know, you know, stupid things like, "Are you going with someone else?" because you can't make the time for them. And with school, because I'm ill I find school to be a challenge or I found school to be a challenge and that had a huge impact because I wouldn't go out during the week and then I would only go out with, you know, my boyfriend on the Friday, on the Friday night and then on the Saturday I would go out with my friends and then on the Sunday I would stay in to rest and people would find this, you know, "Why, why can't you go out with me on Saturday and go out with your friends on the Friday?" which you're having to pick so I mean that's just. 

 

I mean it didn't work to be honest, I mean I kind of have to step aside and say, "You know it's not working, it's not working out." As I gotten older I told people that I've arthritis. Some people, you know, stand back and won't have anything to do with it. Other people are accepting but again don't know what they're accepting because one minute I can be fine and another minute I can be very bad and it's when I'm very bad that it gets overwhelming. I mean I at the moment I'm single and I don't want to be in a relationship until I've kind of understood. I mean as I've grown I have dealt with all the different kind of sides but relationships have been tricky because we haven't been told about relationships and about how we're going to deal with relationships. The older you get the more mature a relationship becomes and you think about different things. You know you think of sex, you think of going out, you know, maybe living together, it's like you know, stupid things like, stupid things like that and it's just, it's too much at the moment for me to deal with. I have had relationships but we've kind of thought of it and we've been quite mature in that sense but at the same time because they're not aware and because I'm not fully aware of that side and that aspect of, you know, of myself it becomes tough and I mean. 

 

Caitriona explained that it’s important that partners understand why people with arthritis can...

Yes well it depends because if you're bad then of course it's going to affect it. But if you have a swollen joint the pains were it is. So if you have a swollen joint then I mean you can still go through but if you, I mean I stress this when I speak to people who have the same condition and who speak to me about it; if you have you know, if you're not in the mood to do something and someone is trying to kind of well you know, “you were OK yesterday” being quite nasty I mean, just leave them because although yes you're ending a relationship or you're coming out of it, with arthritis you need to find someone who is accepting, who will be patient, who will, you know, help you and although one person might be OK to do one thing, another person may not so , and that's, that is a down side. When you have arthritis, I mean not everything can be fixed. There are going to be times when you're bad, there's going to be different side effects but it's just trying to find, again it's trying to find a person who is understanding, who is accepting and it may take a while. But I mean I have friends who have arthritis and who have got married now. I mean they're quite a bit older than me. They've got married now, you know, they're with long term boyfriends and things like that but it's again trying to find that kind of person, trying to find that kind of; I mean you've to be confident within yourself to believe. I mean some people with arthritis have such low self confidence that they'll, you know, they'll push themselves to do things that they wouldn't normally do. I mean that's, I mean it's sad in a sense but you just really to kind of think of yourself. Yes you have arthritis but you're still the same person you are, you're still a great catch so you really need to kind of think about things like that.

Because Caitriona isn’t comfortable with herself she finds it difficult to be intimate with other...

No I'm not comfortable with myself so I can't be intimate with anybody else and I find that's something that happens to everybody. You need to be confident and comfortable within yourself to be able to, you know, to do something with someone else and it's something that really does stick with me. Because, you know, I would love to get into a relationship and be intimate with someone but at the same time at the moment, you know, with the steroids and with the effects that all these drugs and my condition has had on my body, I'm not comfortable with myself and I mean, I mean I know that there are loads of people who have the same feeling it's just trying, once you're confident within yourself, you know, that will kind of show and it is, it is something that, that does stop me but at the same time, I mean I'll overcome it at some stage and people do overcome it, it's just one of those things that you've to try and deal with and manage so yeah.

Caitriona was not happy with her body image.

I'd like to say yes but I've been on the steroids three times now. You go on them, you come off them, you go on them, you come off them and I find; I mean now people will look at me and say, "Oh no you've got a lovely body," and things like that but I'm just not comfortable in myself at the same … because it's not me, it's not the way I'm used to being and I think one of the biggest effects arthritis can have and the medication can have is you kind of lose yourself in a sense. I lost, I've always, you know, been the small, well the tall skinny one who could eat everything and still be thin whereas now I'm kind of having to look at what I'm eating just to try and be careful because even if I do put on a bit of weight there's a certain point where if you put weight on it can be dangerous so it's trying to, I mean, and for a child that's awful. I couldn't eat the sweeties I, you know, I wanted to eat. I couldn't do anything you know, I wanted to do and I was constantly told you need to try and exercise, things like that and not exercise in the way you go out and play football with your friends. Like you exercise so it was just a bit, a bit daunting as well for a thirteen year old and even now, a nineteen year old being told, you know, you really need to have a look at this.

 

No I'm not comfortable with myself so I can't be intimate with anybody else and I find that's something that happens to everybody. You need to be confident and comfortable within yourself to be able to, you know, to do something with you know, with someone else and it's something, it's something that really does stick with me. Because, you know, I would love to get into a relationship and be intimate with someone but at the same time at the moment, you know, with the steroids and with the effects that all these drugs and my condition has had on my body, I'm not comfortable with myself and I mean, I mean I know that there are loads of people who have the same feeling it's just trying, once you're confident within yourself, you know, that will kind of show and it is, it is something that, that does stop me but at the same time, I mean I'll overcome it at some stage and people do overcome it, it's just one of those things that you've to try and deal with and manage so yeah.

 

Caitriona’s way of coping with arthritis is to poke fun at the condition with her friends.

Well first of all I've learnt to be open about it. Don't hide it, it makes it worse. I am constantly joking about it. It makes it nasty but I find that the more you joke about the condition and the more you let your friends joke about the condition, your friends, your boyfriend, I mean people would disagree with me when I say it, but I always go, "Yeah, yeah I'm crippled today, don't talk to me, don't talk to me," and although people find that quite offensive, with my friends if they can see they; I mean they would never use that phrase but if they can see that I'm, you know, I'm having a bit of a, you know, giggle at myself and I'm able to have a joke about it they feel a bit more comfortable because, well I am, I mean I have been in a wheelchair at one stage, I have been on crutches at one stage and you know I do use a walking stick. Other people see you like that, your closest friends, your boyfriend, it's I mean, one day you're walking, you're dancing, you're out in the clubs, you're dancing, you're having a wee drink and the next day you're, I mean you're bad, you can barely walk. I find that I get very emotional when I'm really that bad and from having that the easiest way I find coping with it, first of all being up front about it and joking about the whole thing. 

 

And although I don't feel like it's a joke at the time, even have a wee giggle with my friends where they can't poke fun of me, that makes, you know, it makes the world of difference at the end of the day and it shows that although I'm ill I'm still the same person so that's something. I mean people they don't agree again with the fact that I say joke about it and using your derogatory terms like, you know, like 'I'm crippled,' and things like that and it can be quite nasty saying it but if you're saying it in a loving and a joking environment it can be quite, I mean it can just, it’s like making fun of people with ginger hair, you may not do it in England but it's something that you know people always talk about. So it's at the same time you're not you, you're not distancing yourself with a condition, you're involving everybody else in it. I mean if they step over the line I'll say, "Here, you know, you've stepped over the line," but making it free for people to talk about so that people aren't thinking, you know, people aren't tiptoeing round you. They're thinking, 'Oh, you know, can I say this?' Everybody is able to talk about it and not go, "Oh no, no, no don't you mention that," making it something that everybody knows about which I mean can be a big step. It was a big step for me telling everybody about it but making it a conversation out of it people are able to talk about and that they won't feel bad about offending you. I've had it, I mean I got questions like, "Can you even have relationships with boys?," you know, "Can you even do, you know, things, can you do things in the bedroom, can you do this and that?" and you know although it sounds stupid, educating people about things like this is something that really needs to happen so at the same time you're publicising, you're actually making people more accepted of it and in that kind of environment you become more accepting of yourself and you feel more included.

 

When doctors diagnose someone with arthritis they need to explain what it is and how it may...

For a patient to really understand and get into you know; when you're diagnosed with a long term illness you can't just say, "Hello my name is….," and walk out. You need to sit there and support someone. You need to explain what is going to happen to them. What their future is going to be like, you know, give them a bit of background details, some…even if it's your statistics, you know, anything like that, anything that you can offer a child or person. Any information that you may have would benefit, you know, a patient drastically. What you might think is irrelevant might make a patient feel, you know, better or might make a patient accept it more. So I mean just being there and…I know, it's a professionally paid job but going that extra mile in a sense, that's what makes you a great doctor, that's what makes your patients respect and appreciate you. I've had doctors in the past where, I mean they're just doctors who've treated me whereas when I speak with my GP or my consultant I speak very warmly about them, I'm very respectful about them and I know that they have made the difference in my life. And doctors usually get into the profession because they want to change, they want to have the difference and help people and if that is the case you need, you can't just do what you've learnt in medical school, you need to go the extra mile.