Caitriona
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.
Caitriona is a full-time university student studying law and politics. She also volunteers for Arthritis Care. She is white Irish.
More about me...
Doctors struggled to find out what was wrong with Caitriona so they ordered lots of tests.
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 later at home it hit her hard.
Caitriona had mixed feelings when she was diagnosed. She first felt it was a positive thing but later at home it hit her hard.
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 people under her care during diagnosis and afterwards.
Caitriona thinks her consultant is 'inspirational' because of the attention she gives to young people under her care during diagnosis and afterwards.
Caitriona's arthritis is better when it is warm and dry. She knows when it is going to rain because her joints play up.
Caitriona's arthritis is better when it is warm and dry. She knows when it is going to rain because her joints play up.
Caitriona is pleased with her doctor because she is 'constantly working' and trying new things. When Caitriona was part of a study it was like she had private care.
Caitriona is pleased with her doctor because she is 'constantly working' and trying new things. When Caitriona was part of a study it was like she had private care.
Caitriona had difficulties staying awake and even fell asleep during a family dinner. She has been known to sleep for 15-16 hours in the past.
Caitriona had difficulties staying awake and even fell asleep during a family dinner. She has been known to sleep for 15-16 hours in the past.
Caitriona has a positive outlook on life, accepts support from those around her and sleeps lots when she can.
Caitriona has a positive outlook on life, accepts support from those around her and sleeps lots when she can.
Caitriona has various things to help her study including a library assistant and a laptop. She is allowed more time to complete coursework and finish exams.
Caitriona has various things to help her study including a library assistant and a laptop. She is allowed more time to complete coursework and finish exams.
Caitriona volunteered for Arthritis Care because she wanted to 'give back' to a charity that has helped her as a teenager.
Caitriona volunteered for Arthritis Care because she wanted to 'give back' to a charity that has helped her as a teenager.
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 she sometimes couldn't go out. Caitriona felt that keeping arthritis a secret didn't work.
Because Caitriona didn't tell her boyfriends about her arthritis they struggled to understand why she sometimes couldn't go out. Caitriona felt that keeping arthritis a secret didn't work.
Caitriona explained that it's important that partners understand why people with arthritis can find sex difficult. Partners should be patient and accepting and not push.
Caitriona explained that it's important that partners understand why people with arthritis can find sex difficult. Partners should be patient and accepting and not push.
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 people. She's confident that she'll overcome this in the future.
Because Caitriona isn't comfortable with herself she finds it difficult to be intimate with other people. She's confident that she'll overcome this in the future.
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.
Caitriona was not happy with her body image.
Caitriona’s way of coping with arthritis is to poke fun at the condition with her friends.
Caitriona’s way of coping with arthritis is to poke fun at the condition with her friends.
When doctors diagnose someone with arthritis they need to explain what it is and how it may affect people in the future.
When doctors diagnose someone with arthritis they need to explain what it is and how it may affect people in the future.
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.