Tom

Age at interview: 18

Age at diagnosis: 14

Brief Outline:

Tom has oligoarticular juvenile idiopathic arthritis. He experiences pain, stiffness, swelling, and sometimes weakness in his knees, ankles, and feet. He has methotrexate and steroid injections to help manage his condition.

Background:

Tom is an A-Level student preparing for university. He lives with his parents. He is white British.

More about me...

Tom has oligoarticular juvenile idiopathic arthritis. He experiences pain, stiffness, swelling, and sometimes weakness in his knees, ankles, and feet. He has methotrexate and steroid injections to help manage his condition.

Tom became ill during the summer term when he was in Year 9. He felt dizzy and nauseous and had to take a few days off school. This was unusual for Tom because he rarely got ill. Tom's health appeared to improve so he decided that he would go camping with his school during Activities Week. Tom said that "everything went downhill" when he was away. His knees became very swollen and he could barely walk. He was scared and did not know what was happening to him.

Tom saw a doctor in hospital who drained the fluid from Tom's knees and gave him steroid injections to prevent his knees from becoming inflamed in the near future. He stayed in hospital for a night so doctors and nurses could observe him. He went home the next day to rest.

Tom's methotrexate medication keeps his condition stable. He still has flare ups but they have never been as bad as the flare up he had when he was camping. Tom has found that stress affects his arthritis and his joints are at their worst during his exams. Tom's emotional wellbeing has improved over time.

He originally felt tired, alone and spent a lot of his summer holidays away from his friends. He now has a positive attitude and thinks about others who are in a worse state than him. This makes him feel fortunate.When Tom is not studying for exams he likes gaming, reading, swimming and hanging around with friends.

Tom felt dizzy and sick before his joints became swollen. He tried to keep going but found he had...

To start with I wasn’t really sure what was going on. I remember that it was in the summer and I was quite ill. Like I don’t really usually get ill often but I was like dizzy and a bit nauseous sometimes, and I had to have a few days off school. And then that was right before the end of term. And at the end of term my school does an activities week where we get to choose activities and then go and have fun for a week. And I’d chosen to go camping, and so I thought I’ll be okay to go camping. I was improving, I was not perfect but I was a lot better than I was. So I went to this activities week and well everything went downhill a bit. My knees swelled up massively, I mean they were huge, they were like balloons, I could barely walk so it was not fun at all. I didn’t really get to do much, I had to drop out of a lot of the activities. I still enjoyed being with my friends but if you were away from home, without your parents, with people that you don’t know that well it’s kind of a scary thing to have to do, especially when you’re 14.

Tom was concerned about the size of the needle being used during his knee aspiration. The doctor...

They made me leave them to go into a room and have a proper poke around my knees. And then they said, “We’re going to inject them.” So I was like “Oh. No thank you.” And they’re like, “We really recommend, it would help such a lot.” So through a little bit of coaxing they sat me on the bed, they got out this great big needle, they said that the only, the only one that would fit was the biggest one. And I was like, “Ooh, must be really swollen then.” So they got out these needles and there was a lot of hand holding from my Mum thankfully, she was there for me. And she just sort of put it in, and immediately I could feel the pressure being realised. And she said it was squirting out apparently, which isn’t really nice to think about, but it shows how bad it was. I mean if the fluid’s coming out of your knee that much it must be really bad.

 

So she took some fluid out and then put some sort of steroid thing in, and that was to help, help me in the future, it was supposed to stop it getting inflamed straight away again. So I found that really valuable. 

 

I wasn’t allowed to walk for the next day or two I think. So then I got back to my bed. I stayed over at the hospital I think I went home the next afternoon.

 

When Tom moved to a children’s hospital he could contact his healthcare team whenever he needed...

Once I was moved to the children’s hospital and I was kept there for quite a while, like months wise, I felt that I could just ask anything I wanted at any time. I mean the doctors just said, “Here’s my e-mail, any questions just e-mail me and I’ll get back to you very quickly.” Which they always did which was great. 

 

I mean I had my Duke of Edinburgh expeditions and like I’d say I’ve suddenly got a bit worse can I have a joint injection before I do it? And they’d say, “Yeah no problem, here’s a joint injection appointment for one week.” And I was like, “Wow. That’s quick, thanks”.

 

Gosh no that’s wonderful stuff, wow.

 

Yeah it was incredible. I mean it was such a good service there, going from, I think that was the worst part of going from a children’s hospital to a regular hospital is that you’re suddenly not so special and treated so nicely. You’ve suddenly become one of a few more people so you can’t get everything done straightaway. But they still accommodate you as much as they can.

 

That’s good news, good to hear.

 

Yeah.

 

Do you think that’ll be the case is that the case now?

 

Yeah that’s

 

That is the case now?

 

That is the case now.

 

Yes.

 

Yeah I can still e-mail my nurse any time I want, I say my nurse but I always see her and she always sees me, so…

 

Okay.

 

I can just e-mail her with any questions I have and she’ll get back to me very quickly.

 

Does a nurse give you your injections?

 

No. At, at the children’s hospital it was the doctor that did it, or a doctor, whoever was available really. But once I moved to the regular hospital I’ve a doctor that I see and a nurse who I see more often, because the doctor is generally quite busy. But I still, it doesn’t really matter that much unless I’ve some sort of a great big news about how I’ve got horribly worse, I don’t need to see the doctor so it’s, its fine that way. But in regards to the joint injections, you just get an appointment and then I turn up at the required time, I go into the room and then there’s just a man who does joint injections. I mean you’re in a queue with like old people and various other people, and you just go in one by one, and they just check where you’ve got to have injected and he’ll inject it. And that’s it. And I don’t know if he actually is part of the rheumatology team or if he just does joint injections for anything, for, they seem to have an afternoon where they just do joint injections. Yeah, come along.

 

Tom got nervous before his joint injections. He found them painful but “completely worth it”. He...

Are they painful?

 

I’m not going to say no, ‘cos they are painful. But if you think about the pain that you’re in beforehand and how long that’s gone on for, they literally take three minutes, if that. It’s completely worth it. I mean you do get a bit worked up beforehand. I start shaking which is always bad ‘cos then my legs are wobbling like there and the doctor’s trying to hold them down and it’s a little bit stressful but definitely worth it. 

 

I mean you, the worst bit I think is when they’re pushing in because you just think about the needle going in. I mean I don’t like the thought of going inside a body, like I hate bones, I hate big wounds. So when the needle’s going in you can feel it going through each layer of skin, or the muscle. You can feel it get to the joint and actually like pop inside the little thing with the fluid in it. And that’s the worst bit. Once it’s in its fine. And then taking out is like two seconds. So I think it’s not that bad.

 

How quickly does it take to work?

 

I think after about a day and a half you start to feel a bit better. You’re not supposed to move for two days. And I think the thing that I’ve learnt from my experiences is don’t move. ‘Cos if you move it kind of erases the effects that it’ll have. I mean I had one done, my first one then I was taken in a wheelchair to the car and carried from the car to my bed. Didn’t get up for a day and a half, and then I was so improved, it was amazing. Then the next few ones that I had I made the mistake of walking from the hospital bed to the car and then from the car to my house and like moving around the house a bit too much I’d say don’t do that because after that it didn’t help half as much as the first one did. So I think definitely don’t move unless you want to go to the toilet.

 

That’s fascinating. I’ve not heard people say that, well that’s fascinating.

 

Yeah I’d recommend including that because that’s what I’ve learnt.

 

Okay.

 

It makes it a waste otherwise if you just walk, even a few steps, the effects go down so much. You kind of waste having it and they say, if you say, “I want another one,” then they say, “Well you’ve had one a couple of months ago. Obviously we need to do something stronger,” and you just think, “No, I walked. It’s not that bad really. I just want another injection.”

 

And is it in all the affected joints all the time? When you have the injections, your steroid injections?

 

Oh, yeah I just have it in the ones that are swollen. It’s like if something becomes swollen I’ll say “I’ll have it injected please?”

 

You can literally just ask can you? And they’ll do something for you. Okay.

 

I mean to start with they did invite me in for a little thing just to make sure it was swollen, but they seem to trust me now, I can just e-mail and say, “I’d like a joint injection,” and they’ll say, “Okay, here’s this day.” You just go in and the person doing the joint injection will check that it is in fact infected and swollen and they’ll just do it for you.

 

Tom visited the adult clinic before being transferred there. He felt “more in control” after...

Well when I transferred from the children’s hospital to the adult clinic they did a transition period where they asked me to go and see the doctors on my own, just to get me ready for it. And I can see why they’d do that, to make you more independent. But for me I didn’t think it was that useful because nobody really likes going to the hospital on their own anyway, so even my parents would go together. But I think it did help. It made me feel more in control of my own condition.

 

And it’s really sad leaving everybody ‘cos they’re like a family there. It’s so great to go and you can just walk through the waiting room and say, “Hi, hallo, how are you?” to people that remember you on sight, which is really nice to feel like that.

 

They prepared me. They made me see the doctor on my own. So that was one step. Another thing that they encourage was me coming to hospital completely on my own, rather than just leaving my Mum in the waiting room, which I did a couple of times when I came from college, went on the bus all the way to the children’s hospital. That was an adventure. I wasn’t late thankfully ‘cos I’m normally late for everything. 

 

Apart from that they took me, they had a little day when they took me to the clinic that I’d be moving to this transition nurse from the children’s hospital came with me to my current hospital and she just showed me round and said, “This is where this will happen. This is probably where you’ll be, there are the nurses you’ll probably see and introduced me to them.” And it was really nice. I mean it helped me settle in a bit I think, just getting an idea of what the place would be like before I actually went there.

 

Tom used to love running but has had to stop because of the impact it has on his knees. He...

Do you feel that there are things that you’d like to do but you can’t?

 

I miss running. I think running is the one thing that I miss because when I was in primary school I, and even in secondary school in PE I used to run a lot. Running was the one thing that I was good at, which is so annoying ‘cos I can’t really do it now. But I was terrible at sports all year round, football and rugby in the winter, I was horrific. Then when it got to the summer; Tennis and Athletics were the only things I could do. And now I can barely run so, it’s, I think that’s the thing I miss the most. That being taken away from me. ‘Cos I was a good runner. I used to love running and jogging and, that’s, I think that’s what I miss the most about it.

 

Is the ice skating trying to find a replacement, or is that just something completely different for fun?

 

That’s just for fun.

 

Yeah, yeah.

 

It’s just a recent new thing that we’ve found and I can go really fast with little effort so it’s great. I suppose it’s still a little bit scary as well so you get the adrenaline rush.

 

What about the gym? I mean do you run at the gym.

 

No. I don’t really run, I try and avoid it as much as possible because the impact on my, on my legs makes my knees really bad the next day. I can run for about 30 seconds and then I’m tired but I wouldn’t like to think it’s because I’m unfit because that makes me seem really unfit, if I can run for 30 seconds, but I think the amount of pain tires you out. And it’s a combination of painful and tired because of the pain that I can’t really run for much more than that. I can still run quite fast and I can still run, I can physically run so if I got chased by an axe murderer or something could get away. But it would definitely hurt the next day.

 

Tom isn’t embarrassed about his arthritis and is happy to tell people about it when it’s relevant...

How open and honest are you about arthritis to people that you meet?

 

I’m fairly open. I mean I try not to attention seek. I think, I feel that I attention seek sometimes, but my Mum says that I never ever moan so she’s like, ”You don’t attention seek at all,” but I wouldn’t tell somebody unless it was completely relevant, like for example if I met somebody I wouldn’t ever tell them unless we went out doing something active like, like a couple of weeks ago I went out paintballing for my friends 18th, and I was like, “I might, it might hurt me because I’ve arthritis, so if I’m kneeling on the floor a lot or running around that will hurt me I suppose, so go easy on me.” 

 

But I don’t really shy away from it, I’m not embarrassed by my condition. I don’t think anybody should be because it’s nothing to be embarrassed about and everybody has different things. And I think has life has gone on over the years I’ve realised that more and more people do have these things, I mean when you’re little you think everybody’s completely healthy and I thought at the time that I was the only one that had a long term condition. But then I found out that, especially when you go on the school trips, lots of people have medication with them. Like this one girl had it ‘cos her blood was too thin or something and this other person had this because of various things, I don’t know. But you just realise that no-one’s completely healthy all the time. And it just makes you who you are.

 

Tom keeps his emotions to himself but his family are always there to cheer him up.

Also I think being in the summer holidays made it worse for me. ‘‘Cos I mean in the summer holidays you don’t get to see your friends as much as you would, so you don’t see them every day. And I think I just felt alone, like I was just stuck inside ‘cos I couldn’t really move that well, and it was just really depressing. Even though my family did try and cheer me up a lot, which was great, we had some great experiences like we went to Germany. We took a wheelchair, managed to fit in the car, just about. We managed to break the wheelchair, like the foot plates fell off so I had that on my lap, and I was balancing both my feet on one of the footplates for one whole night whilst we were going down cobbled streets in Germany. So my sister liked pushing me, I was like a little pram for her, so she’d push me as fast as she could over the cobbled streets, so we’d go b,b,b,b,b,b. So that kind of made it a bit more fun, even though it was a little bit of abuse, but what’s life without a bit of fun.

 

With a bit of abuse?

 

Yeah, abuse is what makes you tough.

 

Does your family help you with kind of the emotional state and, a lot or was it in those early days that was particularly important?

 

I think I’m quite an independent person in that I’ll keep my emotions to myself a lot. So I think for me it was something I had to do. I couldn’t really go to help ‘cos I don’t know it just feels like giving into it me. I don’t like giving in at all. I never want to give in. So I always try and cope as long as I can on my own or just keep going and not moan and not whinge and not really ask for help unless it’s ultra-necessary. But they were there for me, it’s not that they didn’t care; they cared too much if anything. They’d always ask, “Are you okay?” I’m like, “Yes Mum, I’m fine. Leave me alone.” But they’re always; they’re always there for me.

 

Give people information that is age and ability appropriate.

I think you shouldn’t be afraid to dumb it down. Because for me without sounding big headed I’m quite clever, so when, when I was 14 and I first went to the children’s hospital I found that they were dumbing it down a bit too much. And that annoyed me because well I don’t like things dumbed down for me, I’d rather know as much detail as I can, and if I don’t understand something I’ll ask for it. I ask what it means. So it’s never a problem with being too detailed.

 

I think give us as much information as the person wants. And if they say it’s too much then maybe you could simplify it. Well maybe suit it to their age range more. ‘Cos I think whilst I was at the children’s hospital it, I did feel more a child. I know it is a children’s hospital but it was a young person’s clinic, but that was for about 11 to 18, or 16. So I was always towards the upper end of that, and I’m quite clever as well so I always felt that it was a little bit dumbed down for me.