Jazmin

Age at interview: 20

Brief Outline:

Jazmin has systemic onset juvenile idiopathic arthritis. She was diagnosed when she was eighteen-months old. Most of her joints are painful and achy. She is not taking any medication and has an optimistic outlook on life.

Background:

Jazmin is a full-time university student. She is white and black Caribbean.

More about me...

Jazmin is a third year university student studying Geography. She has systemic onset juvenile idiopathic arthritis. She was diagnosed when she was eighteen months old and does not remember being tested. She has never experienced discomfort with her internal organs even though her type of arthritis can affect them. Most of her joints are painful and achy and she has a weak immune system. She also used to gets rashes on her face.

 

When Jazmin was younger she had to rely on her mum to help with basic tasks such as dressing and bathing. She remembers finding this frustrating because she was “fiercely independent” as a child. However, she also remembers having fun with the family and friends who used to take part in her physiotherapy exercises with her so she did not have to do these by herself.

 

Jazmin used to take methotrexate tablets. She was always sick afterwards. She tried different things like eating yogurt and drinking milk but this rarely stopped the sickness. She now has a phobia of all tablets. Jazmin has not taken any medication in five years. Although she is still in pain she has learned to cope with it without the need for medicine.

 

Jazmin attitude to life has changed over time and she is now happy. She says that growing up with arthritis was not full of “lollipops and rainbows”. She used to get angry with the pain and struggled as a teenager to accept her condition. Now in her early twenties, Jazmin has developed an optimistic outlook. Arthritis is part of her and isn’t going to stop her from achieving in life and having fun. 

 

Jazmin enjoys going to gigs and socialising. Because she is not on any medications she can drink with her friends. Photography is a big part of Jazmin’s life and she was a photographer for the Children’s Chronic Arthritis Society (CCAA). Jazmin looks forward to the future and hopes to gain a place on a master degree and eventually work in environmental research or teach Geography. 

 

Jazmin volunteered for CCAA. She learned lots by listening to talks by healthcare professionals and made friends with other members and volunteers with arthritis.

What about the role of CCAA (Childrens Chronic Arthritis Association) then? What do they do or what have they done for you?

 

I think we first came into contact with them as we went as a family originally like we were invited originally in early teenage years and obviously, I don't know, I like, we really gained a lot from it and it sort of just like, just more the science behind it, we got from CCAA and obviously then we got different perspectives from different other families and different kids and you know different, then we got like, loads of different health professionals came like – podiatrists and dieticians and obviously physiotherapists and rheumatologists, like all these different, different health professionals that came for this one common factor really to this weekend and to obviously we like we got involved actually passing on our knowledge to other families and children and we just, we like, it would be so passionate about it we like, we learn as much as we can and then we want to pass it on to others and I love it. I love it like this year like in the past few years I was the photographer of the charity but now I'm like want to pass that role on to someone else to like actually my friend who has arthritis as well actually who's Mum is a physiotherapist which is mind-blowing who used to actually be my physiotherapist which, so it's like, yeah it's just, and just like I want to actually get involved in teaching, educating the kids now. I actually want to do that, think about going into education myself so it would be like a great experience for me and like I've been in like the parents sessions and it's always interesting. Like obviously I get the perspective from, I know what the kids would be like, feeling like but being in the parent's sessions I like to see what the problems they face if that makes sense? So it's like parents and kids, they obviously have different views on this disease and being involved in CCAA I get to see both and I get to know part of some knowledge from both sides really I would say and everything and it's like, it, it's a great charity, I love it to bits.

 

Good stuff, great stuff. So you've, you've kind of got friends with arthritis then?

 

Yes and I've met through CCAA and I love them all, I really do because they're like, they're just normal kids like me. Well they're not kids anymore, most of my friends are… around my age or a little bit younger and you know be like, we're just like normal young adults, you know, getting up to mischief and everything and because, I don't know, I don't how, like I see it as if the families, parents are positive about having this disease then the kids grow up positive about it because like all my friends, we're all positive about the fact, we don't, we see it as in, it's just part of us, just deal with it sort of thing. We don't, shouldn't just complain about it and just like think it's the end of the world because it's not; there's worse diseases out there. So like, we're like just lives our lives normal as we can, well we do, live our lives normally, we just have this, well actually a little problem to deal with really, that's how we see it and yeah we all, we all get on great and yeah we're just all brought together by having arthritis I would say really and yeah.

 

Jazmin has arthritis in her wrist and cannot move it as much as she used to. X-rays show that her bones are deformed.

My knees, ankles, toes, fingers, elbows, wrists, hips but the one where my arthritis is more like prevalent is in my wrist, in my right hand wrist. Like I have actually 75% usage of this wrist. That's because obviously the medicine and everything, they couldn't get to, you know, couldn't stop the arthritis attacking it so I've, yeah. If you ever say my x-ray you can actually see the bones are deformed compared to the left hand ones but yeah so I have limited usage of it and mainly my ankles it affects as well. So it's like in most of my joints but in more areas it like has more of a presence like say. Yeah so it's my wrists, mainly fingers and my ankles hurt more prior to being inflamed but it hasn't happened for a long time now really. 

Jazmin developed a phobia of tablets after being repeatedly sick taking methotrexate. She tried different ways of taking the tablet like crushing it up in yogurts but it only helped a little.

Methotrexate – it's not my fondest memory taking that every week because it makes you puke it back up and I did not enjoy that at all and Mum would always find it hard to like encourage me to take it because I know what was going to happen and so like now because of that one little thing I have a complete phobia of tablets. I do not even think about it. I feel a little bit just apprehensive about it and everything but I was one of the first people to go on the liquid form, the injection form of it and that I felt relieved that I wouldn't have to take that tablet anymore but then I just like been, I was back, when I was a teenager obviously was like just lazy and couldn't be bothered to do anything so I tried to avoid it, doing it and taking it but yeah when it came to taking medication and going to hospitals, appointments and like missing school and everything I usually get like a little reward like , I don't know some chocolate sweets or like take me to the cinema or something, just you know little rewards to you know to encourage me to be ready for the next time when I'd have to go and take medication and everything so and everything.

 

So you, when you were younger you preferred taking the injections?

 

Well no, in early teenage years, the injection first came round because up to that point I was on that tablet so I; when my doctor asked me, like told me about this I was like, "Can I try it?" sort of thing because I did not want to be on this tablet, I didn't want. And yeah my body took it well so that's always good.

 

Methotrexate is obviously a very, very common medication and different people react differently to it. Is this the case where you took them, medication and then literally straight afterwards you were sick?

 

Yeah

 

And were you kind of properly sick as well?

 

Properly sick like, bent over the sink sick and then we tried different methods like we tried to crush up yoghurts, that went down a little bit better but usually afterwards I did feel rather sick and everything and actually when I was on injection afterwards I did feel that nausea because obviously it just reminded me of like the tablet form so I actually took milk and that made me feel a little bit better afterwards. Don't know how but that did and everything. But yeah like every time I took that tablet I would just puke it back up. That was not great and everything, yeah.

 

Can I ask where there any concerns about the medication not being consumed by the body because you were bringing it back up again straight away?

 

No. Well there was concerns like they would try different ways to like give it to me and everything but I had like the blood tests because obviously being on methotrexate like it affects your liver and everything so you had to have regular blood tests so they like just, like checked that side of things so if it's like that but. I don't know, it like, even though it comes back up somehow they do, it like, the body does retain it somehow and like it did help even though it didn't help in a way. But yeah there was concern but it sort of like, they didn't know how to really solve that issue until that injection option came along really and everything so they just, different ways to try and take it really.

 

And you say, am I right in using the word phobia? Can I use that word?

 

Yeah. I really, any tablet at all, like, because if I'm in pain they like say take paracetamol like I refuse to take paracetamol and even if it's like the last resort taking a tablet I have to have it crushed up or something because just, yeah it just makes me feel really weird

Jazmin's joint injections tickled her. They reduced the pain in her wrist so she could write in her exams.

The injections then, were they steroid injections?

 

Oh yes they were into the joint, yeah and that was just; it's really funny in like I used to actually go with it because I just it, it tickled. I don't, like my doctor would find it really strange actually, she took a picture of it. But like…

 

She took a photo of you giggling?

 

Yeah I was like, "How's the injection?" because; oh no she's like, she has loads of patients and she's like saying, "You're the only one that actually finds it enjoyable," and like she's actually like showing these pictures to like other kids and saying, "Look it's not that bad," sort of thing. Yeah I don't know it's just because I just felt it, yeah it tickled but yeah it was a steroid injection and yeah that would work for about a few weeks and then it would wear off.

 

And the steroid injection, did that help the pain?

 

Yes

 

Swelling?

 

It's more like to reduce the pain because I know what obviously, in exams we write quite a fair bit so I was getting pain because unfortunately the hands, the wrists that has, yes it's usually just my writing hand and I don't know how to write with my left hand although I've been told I should probably learn how to do that because it might help. But yeah it's like, it's mainly just like, because I know like we know that pains coming, like we take the injection and just you know to minimise the pain, that will come sort of thing, just to numb it but really.

 

Jazmin found that her doctor spoke more to her than her mum when she moved from paediatrics to adolescent clinic. She said it was 'scary' at first to go to hospital by herself but she soon relaxed when she got in.

Well obviously paediatrics your parent was there in the room with you and obviously mainly the doctor would talk to your parent more than you. Obviously I would ask questions so obviously the doctor would talk to me about that and like I remember when I've had x-rays and like, "What's that?" sort of thing and then the doctor would point it out to me. But obviously when you translate into adolescence and into the adult clinic you want to be more independent and obviously the doctors and your parents, or even though the parents would reluctantly want to but they encourage you to like go to the clinic yourself. It was like, it first started off like a, when I was a teenager like my Mum would come with me but she would sit outside and I would be there with my doctor and we would just, it was like just as if my Mum was there but she was just like talking to me and like everything more like that and you just like; you built up your independence and everything and then obviously as I got older and obviously when I learnt to drive and everything it was just more easier that I went by myself and everything because obviously Mum was busy and everything so.

 

Yeah obviously then you, I think I remember the first time it was a little bit scary for me going into hospitals like telling them I'd got an appointment with my doctor and I got pointed to the ward even though I remember where the ward is for my hundredth time but it was a little bit scary at first but then as soon as I was in the room I felt relaxed because I like know my doctor, I know who it is sort of thing so. It's a bit scary at first obviously walking into hospital by yourself but once you're in that room you just like, you're in a familiar environment you would say and obviously it greatly helps your independence and also as you are, it was terrible when I had to go into the adult clinic because I didn't want to go because like I'd be seeing the same doctor and everything but I wouldn't see my paediatric therapist I got along really well with and I was like, "Oh I won't see you anymore." It's just that it was really hard with that but it was fine. It's like, I just went to a different clinic but it was still the same doctor and it was just, I don't know it's just finally transcending into taking matters into your own hands, with your own illness and everything and obviously with my Mum like, "Oh how did the appointment go?" obviously when we go back home but it's more, you're more in control and you have more of the power I would say when you're like transcend into, like going to clinic by yourself and then going into the adult clinic, you know and... the only difference in the adult clinic is there's older people sitting next to you, that's about it really.

 

Jazmin's exercises targeted the areas that she struggled with most. When she did them at home her family joined in, and when she did them during PE her school friends did them too.

And do you have exercises which are tailored to you?

 

It's more like tailored to like where you most get your pain and everything and where the movement is restricted.

 

OK

 

But it's not really; I would say that they would be tailored to yourself like you know which ones you just do not like to do I suppose because obviously there's loads of different ways to like, different exercises out there to help you so be like, you can pick and choose with your physiotherapist which ones you would want to do sort of thing. So it can be tailored to yourself in that respect.

 

Are these exercises things which you do on your own or are these things which you do with your physiotherapist regularly?

 

Actually you can do it in many ways. Like I usually do it, actually when I was at home I actually like my Mum and Dad would do it with me so it was just you know, sort of like a family thing I suppose just to you know and you know to encourage me to carry on doing it as well and then obviously when I was older and it was PE, I would do them in PE and my friends would come and do them with me sort of like thing just you know, I don't know, not to make you feel alone sort of thing. Just you know and sort of like teach them the way like about it and everything as well. So and then sometimes I would just do them by myself but that, in the mornings obviously.

 

What's it feel like having other people doing it with you versus doing them by yourself?

 

I like it when there are people there doing it with me but doing it by myself it doesn't really bother me really because obviously I know I have to do them and everything so yeah.

 

Jazmin sometimes got 'horrendous looks' and comments when she parked in a disabled parking bay. Her mum used to get angry and shout out to people.

When I use a disabled parking space I do get the most horrendous looks from elderly people and there has been a few that come up and say, "Do you know this is a disabled parking space?" I'm like, "Of course I do, why would I be parking here otherwise?" 

 

And when I was younger Mum obviously being very protective as she is used to shout in their faces and everything and it was very embarrassing but you know it's just like, they obviously because you, on the outside you appear normal, that sort of like you shouldn't; and you're young as well that you shouldn't be in that disabled parking space but it's sort of like, "I have the badge, I am legally allowed, you don't need to question me or look at me funny." Even in Wales, Jesus I was like in Tesco pulling up and it's just the look, it's like the look of death, it's like, "Oh my god, let me just go and buy some tomatoes in peace," you know. I always do get upset when it happens because you know I like elderly people, they're sweet and have so many stories to tell but when they give you the most horrendous looks, it's not very nice. It's not nice at all, it's like you wouldn't expect it but yeah sometimes you do, it actually, no. I have a friend with cerebral palsy, she gets it and it's like it's obvious that she has it, why are you questioning it? It's just you know not nice. Apart from that.

 

Sounds horrible, absolutely horrible.

 

When I just usually shrug it off and then they like complain to; and then I just tell my Mum or my friends afterwards and they're, "Oh Jaz just ignore them." I think last time it happened which was in Wales, like she's like, "Next time get a shotgun and point it at them," it's like, "No that's not going to help." But it cheered me up so. Even though it wasn't helpful the advice, the actual advice, it cheered me up and made me feel better so.

 

Jazmin's parents encourage her to be optimistic about the future and not see her arthritis as all 'doom and gloom.'

Just I don't know, it's just, I don't know just the emotional aspect of it and all of that and it obviously, my parents were just good at like fitting their like work around like the hospital appointments and everything so that was alright. And yeah obviously when my sister got older and she like knew more about my arthritis and everything and like we're really close now in like, like best friends now because like she's; like when I'm having a bad day she'll like, you know, like ask me, "Shall I bring up food or drink for you?" and everything like that and yeah and all that and we're just like, she'll like look out for me and everything and yeah it's just, that's the only impact really like emotionally really.

 

What about your parents?

 

They're very strong, very strong in how they've dealt with it with my whole life and it's really encouraging to know that they're optimistic towards it, it's like, if they think it's like doom and gloom and everything then obviously that would impact me like, I'd think that, that it's just like the end of the world like you just give up sort of thing but it's like good to know that they like see it you know, positively like helped me through it, sort of thing, you know and yeah. They kind of support me as well as each other even though they're divorced and everything but there's like, even now they're still great friends and they still help me and everything and step-dad now, he's great and everything towards it and everything. You know it's just like, "Jas you feeling alright?" and I'd say, "Oh I'm feeling fine," sort of thing even though he can see me limping. He'd be like, "You're not OK Jas, sit down," sort of thing and yeah it's just fine and everything.

 

Jazmin has a positive attitude to life and feels there are worse things than having arthritis.

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.

 

Sometimes people hide how much pain they are really in. Try asking them how they are feeling more than once.

Sometimes when, when the kid says I'm OK, just double check because they can, pride is probably a big thing with kids with arthritis. Like we you know we don't want to show we're suffering, we'd like to, you know, just want to feel that we're in control and then sometimes we're not in control but we still want to appear that we are and you know, it's difficult because we just, it does depend on the child but sometimes we just want to, you know, do it ourselves even though we really can't. We want our independence, we love our pride and you know, it's just sometimes, just you know, just ask, just you know, just to double check that we are OK because you know it happens to me all the time. Like I say I'm OK and I'm really not but you know my Mum would turn round with me and like, "Jas are you sure because in your face you look like you're in pain?" 

 

It's like, you know sometimes we just, we just don't want to admit that sometimes we're in pain and you know admit that we want some help because you know especially when you're a teenager you want your own independence and you want to do things yourself and you know sometimes we do need a helping hand even though we really don't want it but yeah you know just, just sometimes just, if, get to know the patient you know the person with arthritis and everything and you know get the little, little tell-tale signs that they're not OK because it does depend on the patient. With me sometimes I just like just you know talk a little bit less than I actually do because I talk a lot, so it's you know, it does take time to know the patient but obviously it's a real, a long period that you will be with that person and throughout their life so yeah just get to know them and then you know, if they say they're OK you say, "I'm sure," they'll get a little bit annoyed but be like if they, you know, ask them again but you know, they maybe like if you like say, "Are you sure?" it'll be like, "Oh well there was this one time," and then they might you know, tell that there's actually something wrong. 

 

Try to seek out other people who have arthritis. They can understand how you are feeling and can offer support.

If you have been diagnosed try and seek other people out that have it as well because it's always nice to have a little bit of support from other sufferers and you know; I don't know how you would go about that but try and find like meetings or something that you know have other families that go to them or something. Even, I don't know, if you made, somehow approached the consultant and asked is there other kids in the clinic that might want to think about meeting up and having a chat or something like that. Just you know build some form of social network I suppose with that. Where like, the CCAA charity weekend, the one I go to, that's how I met my friends with arthritis and they're wonderful, they're normal people and you know they're great people to talk to if something was just like a bad day and everything, great to talk to because they know what's going on. You know they know what you're feeling and everything and you know you're not alone, you know. There's one in one thousand people in the country that'll get it so you know, there’s bound to be someone near you and everything.