Catherine

Age at interview: 24

Age at diagnosis: 4

Brief Outline:

Catherine has extended oligoarticular juvenile idiopathic arthritis. She has had it for about twenty years and experiences pain in many joints. Even though the pain has got worse as she has got older, she still praises her health care team and considers herself 'lucky'.

Background:

Catherine is a health care assistant and honorary assistant psychologist. She lives with her partner. She is white British.

More about me...

Catherine has extended oligoarticular juvenile idiopathic arthritis. She has had it for about twenty years and was diagnosed when she was four or five years old. She experiences pain and swelling in many joints, including her knees, hips, wrists, ankles, elbows and neck. 

 

Catherine has been on several different medications since being diagnosed. At least once a year she has steroid injections in each of her joints. She was on Enbrel (etanercept) for about six years but it suddenly stopped working. She tried methotrexate but this made her feel sick and gives her stomach cramps. She is now on Humira (adalimumab) but this is not helping much with the pain and flare ups. Two years before being interviewed Catherine had knee surgery (synovectomy) to help reduce swelling and damage. 

 

Even though her medications were not working at the time of the interview, Catherine still praised her healthcare team. She said that she felt “lucky” to have had excellent treatment and support by the “lovely” people caring for her. She remains positive that they can find medicines that work again. Catherine practices mindfulness meditation to help her live with the pain. Friends and family help Catherine during a flare-up by providing a fun distraction.

 

Catherine does not remember her arthritis getting in the way of anything when she was at school. She did not miss out on any activities or lessons. However, as an adult, Catherine’s arthritis has had an impact on her life. She in more pain and has noticed that the fatigue gets worse as she gets older. She has to pace herself more and be careful at work. 

 

In spite of her arthritis, Catherine has managed to graduate with a degree in psychology and works as a health care assistant and honorary assistant psychologist. Her goal is to train as a clinical psychologist.

 

Catherine’s arthritis has affected different parts of her body at different times.

I think, they sort of switch and change to be honest, like when I was younger it was my, both my knees, ankles, hips, wrists and now as I’ve got older they’ve kind of changed so my knees are still bad and my hips but now it’s sort of; my elbows are quite bad and my neck and back is bad and my ankles and wrists have got a lot better as I’ve got older so, it just, it just sort of changes over time. Like you can go for through years where certain joints will be really bad and then they’ll be a lot better and other joints will start, start hurting then.

 

Is there a different sensation in different parts of your body?

 

I’d say so yes, like my knee, my knees, it’s more like the swellings an issue and that sort of mobility issues where as when I’ve got pains in the hips it, it’s hard to, you can sort of feel like sort of like a grinding feeling and sometimes clicking in your hips and it’s more, it affects your walking but obviously you don’t have the swelling in certain joints like you do, like your knees is the main one for swelling and elbows.

 

OK. Is it unpleasant when you’ve got the grinding, is it, is it a sharp pain?

 

Yeah, my hip, the hip pain’s quite bad, it’s a sharp pain and obviously walking round a lot which I do in my job, that’s when I start getting the pain and it’s quite, sometimes can be quite unbearable really.

 

Catherine had some of the tissue in her knees removed (synovectomy). When she has a flare up the...

It’s basically just like a keyhole surgery. I think they can do it on, on a number of joints but in terms of my knee they put, I think it was four small holes, like four small incisions in my knee and they sort of remove the lining of the tissue round your joint because in arthritis, in an inflamed joint you have like a thicker layer of tissue than a normal joint would have which obviously means you’re going to have more swollen joints and when you’ve got swollen joints it affects your bones as well and can damage them. So it just sort of, removing the tissue means that when you have a flare up, hopefully it will get less swollen and you’ll have, eventually have less damage to your joint. So it was sort of just, I was, I think it’s not like a long operation or anything. Obviously you’re put to sleep and then you’re in for the next day until you have a drain taken out your knee and it’s quite a big palaver but they do tell you that it might not work which it sort of didn’t in my case. It worked, it worked for about half a year and then the, it came back to as swollen as it was before which is a shame but yeah I think the reason it was given as an option was because my, my knees had been flaring up quite a bit over the last sort of, the last few years and they thought that this might sort of help, be a preventative technique.

 

Good, wonderful. That’s a really good description, thank you for that. I’m just wondering whether or not as a treatment that you can have on other joints or is it mainly a knee kind of thing?

 

I think, it is, I think you can have, I know you can have it on your hips because that was another option that I’d been talking about recently, possibly having it on the hips but I’m not sure about other joints. I think the knees are the main one they do at the moment and, and your hips. 

 

How long were you off work for?

 

I was off work for four weeks which was, that was the big issue. I was off work for four weeks with the one knee and then the next year I had the other knee done so it was another four weeks off work. 

 

Were you off on sick leave, did you manage to get that?

 

Yeah, I was off on sick leave and given a doctor’s note obviously and I couldn’t move about at all really so I was literally just stuck at home for four weeks.

 

So you’ve literally had, you’ve had both knees done and it’s the other knee, has that worked?

 

The other knee’s actually a lot better, it’s the right knee that has got back to as bad as it was before so it might, it might have possibly helped on the other knee.

 

Catherine thought the adult rheumatology team would be impersonal but this wasn’t the case. The...

Well I was always kind of told that when you go to the adult centre it’s more, it’s not so personal. You just walk in and they don’t really know you so well and it’s more, they won’t, you know, when you’re little they take time about everything to make sure, especially if they’re doing joint injections or injections or anything, they’ll make sure you’re OK first and things whereas when; I was told when you’re older that’s it, they’ll just shove a needle in and then you’ll be out the door. But it hasn’t been like that I suppose from, because of going to the adolescent services rather than straight to adult and it’s like; they’ve pretty much been the same. I think when I was younger I probably had, I probably knew the doc, the consultant more and like the staff more just because I was there more frequently and I was going to a lot more services there whereas now it’s literally every six months that I’ll see my consultant but again like I say I’ve been lucky, she still knows me when I go in there and she always asks me questions about myself and we get on really well so I’ve been lucky in that sense, I haven’t just been shoved from sort of really friendly doctors to the adult services. I’m sure there’s of friendly doctors there but…

 

Did you receive any information about the transition?

 

Yeah I remember I was told quite a lot about it before I moved over actually and I had, it was sort of like a slow move thing, it wasn’t like a, they were like, “Right you’ve got to go now,” kind of thing. They sort of told me a lot about it at the time and then I got to meet the consultant first and it was sort of, when I first started as well it was, you could go and meet like other adolescents there, they all sort of all had their appointment at the same time as well so it was quite good in that sense.

 

Was there a difference in the kind, even like the reception or, or the clinicians office, was there a difference there that you noticed?

 

I suppose in, yeah, when you’re in the children’s services, I suppose everyone’s a lot more friendly and like will talk to you and spend time talking to you whereas it’s just, I think it’s just that busy to be honest in like, like the adult services that people don’t have as much time to just, but you know everyone’s been lovely and it’s still the same but I suppose not quite as, not quite as friendly and as much time as you had in the children’s services. I suppose appointments lasted a lot longer, you were there a lot more and things.

 

Catherine sometimes panics about the future. She wonders if she will need a walking stick or a...

I’d say there definitely is yeah because especially as you get older you start to think more like ooh, like I always think what am I going to be like in another, if I’m like this now what am I going to be like in another twenty years. Am I going to be like round on a walking stick or needing a hip replacement or something so there’s always like panics about the future I think and when I was younger I never really, I never worried about the future at all and I think there was always the option as well that I’d grow out of like, grow out of arthritis which obviously didn’t happen. So I think yeah there’s a definitely, there’s the stress as well of thinking, “Oh god if this is going to get any worse, am I going to have to take time off work,” and “What’s going to happen like say when I’m older?” and things so, there’s always those worries.