My family are still in denial. They, because their concept of it is it’s something that affects old people. You know, to have someone that was playing a lot of sports at county and international level, to not be able to do any of this at such a young, they don’t’ understand that. And I can remember once I was quite bad and having trouble lifting my arms up, I let a kitchen door swing and I got told off for slamming doors, I remember screaming, ‘You don’t understand. You don’t know what it’s like. And, again it’s not a physical illness, it’s not visible. And there was all this mismatch of understanding with family and they only took it seriously when I was having to up, up and down the stairs backwards and pull myself up.

But then, again, you know, it was something like, ‘Oh it’s only a quick, it’s a short-term thing. It will be gone in a week, it will be gone in a month. And of course as the weeks and months got longer and longer it you know, it’s crazy.

But also friends. I had to spend a long time counselling friends to understand. And I think one of the big things that people don’t understand it’s part of the condition, it affects moods. You know, one day you’ll feel bright as a button and the next minute, week or day you just won’t. It’s like you almost grunt at people, they say, ‘What’s the matter with you?’ And I’ll say, ‘Nothing, I’m fine but I just don’t feel like talking today.

How did you feel when she was diagnosed?

A mixture of feelings really. It was nice that, I was relieved in a way that they’d put their finger on what the problem was because we’d had this problem, on and off, for the 4 or 5 years that we’d been married and nobody had seemed to be able to find out what it was that was wrong. They’d done all sorts of tests and x-rays and radio-active bone scans on her wrists and various things to try and sort out what the problem was and nobody had seemed to be able to come up with any conclusive answer. So, it was great in a way that something had been diagnosed and we now had, we now knew what the problem was and there were ways of treating it.

I was obviously quite concerned as well because to be diagnosed with arthritis when you’re 27 is quite scary, really you know. You still stereotypically associate arthritis with old age, you know it’s one of those things, so that was quite worrying. I was quite concerned about what the long-term sort of prognosis was. But having spoken to the doctors and stuff and that put our minds at rest. And there is a long-term sort of you can go into remission with it and things like that, which was very comforting to know. But I was quite worried, you know.

You know with a 2, 18 month old daughter and to be diagnosed with arthritis and the sort of, and the problems that can lead to with mobility and reduced mobility, it’s kind of worrying. As I say, with the reaction we’ve had to the drug therapy, it’s actually dramatically improved [wife’s name]’s quality of life and our quality of life as a family as well. So you know, we’re very happy that it’s been diagnosed [laughing] as somebody’s been able to do something about it and been able to sort the problem out.

We had, we hadn’t experienced really, I mean people talk of stiffness in joints and arthritis we hadn’t had experience of what the overall impact this disease was going to have on us initially and I think it’s a way sometimes you hide the seriousness of things or you know perhaps become the ostrich and put your head in the sand thinking it’ll go away if you don’t respect it, it certainly has to be respected when you have it diagnosed and you know if it had been twenty years later and there had been anti-TNF available even you know perhaps when this had started perhaps the deterioration would have been less than it is now but there, that’s life.

Do you remember what you felt when you originally had the diagnosis?

[Pause] Well as I said earlier, I don’t think we had the experience of knowing what the long-term outcomes would be, we came, even when we came to this hospital, and saw other patients that had it for a number of years, we weren’t fully aware I guess that the deterioration would be to that extent, or I certainly was, my wife may have sort of taken it on board and not been quite so sort of outward going about explaining to me that this is where she thought she might be eventually, and I think you always live in the hope that it won’t be that bad and I think you’ve got to be positive about it’s never going to be that bad because if you actually get doomy and gloomy about in the initial diagnosis, of gosh that’s the end of it then you know you have to take a very positive approach to it really and just assume that it’s not going to, whilst we perhaps know deep down inside that it will get that bad.

(Her father had RA when she was a child.) And of course, as young children, and then teenagers and so on, you don’t really think about you know what your dad’s doing or how he’s getting on at work or if he’s struggling to hold down his job or, you just don’t think about things like that, you’re busy, you know, in your world, aren’t you? So it’s only having gone through it myself that I realise what my parents must have been through. And then of course when, when my mother realised that I’d got it, I mean she was terribly upset.

As, as you would imagine and I have to say that I’m worried in the back of my mind that my daughter might get it at some stage because of course I was 30 before I got it and she’s 21 now. So even although she’s shown no signs of getting it now that doesn’t mean that she might not get it at some stage in the future. So, it’s, you know, it’s a worry that’s there. But at least I know now that if she were to get it that there are better, a lot better treatments so she perhaps wouldn’t have to go through what I’ve been through because the drug regime that we were put onto in, you know, when I was diagnosed just, you wouldn’t do that with people now. And we know that which, you know, of course we didn’t know then.

And it, it’s an education programme with telling people. I can remember when after seeing the consultant that I’m now under for the first and second time, and going back and telling my employer at the time that, ‘Oh yeah, it’s rheumatoid arthritis but I knew that anyway’ and I was so blas’ about it and everyone else was in shock.

It was really quite strange, it was quite weird because they had this preconceived idea that my life was over, my career was finished and I remember, I had spend an awful lot of time going back and educating them, even colleagues in the office were coming up, ‘Why aren’t you worried? I’d be crying my eyes out.

There was one or two others in the hospital that were sort of a bit, a bit of Jonah’s, you know, sort of like the magic diagnosis, like, ‘Oh, oh I really feel sorry for you, Oh you poor thing. And you don’t need that. You know, you’re trying to come to terms with something that’s fairly emotive and you get the poor, oh the poor you, scenario. In fact I even, it, it got to that stage once I’d got home from the hospital I’d been working where I’d been working, I’d been there a fairly long time and because everyone was sort of making their own conclusions what it was, although I wasn’t saying what it was, yet I had this, ‘You poor thing,’

There were several trying to fall over themselves and wrap me in cotton wool. I ended up leaving the organisation. I just couldn’t handle it. I didn’t want to be wrapped in cotton wool. I wanted to be, I was still, still the same person that I was beforehand so it’s, I feel more inclined to be comfortable talking to people with rheumatoid arthritis than talking to people who have a preconceived conception of what the condition is, you know.

Oh yeah. I didn’t have the, didn’t have the patience, ‘cos all I wanted to do was just curl up in a ball somewhere and just wait it out kind of thing. I wanted to hibernate, go in, just go to sleep and I’d wake up and I’d feel better. So she, yeah, it, it did affect her and it definitely, you know, affected my husband. I mean I was lucky in the fact that they were both hands, no they are both hands on so, but it did, yeah, it did, it did affect how I was and she was, she, I found that she was more tearier as well because I’d be just so frustrated that I couldn’t do anything.

So yeah it did. It did affect her. But you know, I mean now that she, I have sat down and spoken to her and it’s not something that’s going to kill me, you know, she knows. I think that’s, that’s, that was a lot of it as well, is it, you know, ‘cos you it all goes through your head and I didn’t think it was going to kill me but it, you know, I, it wasn’t good.

But no, now that she realises now that, you know, I don’t think she takes much notice of it any more, because I don’t. Yeah, that’s, that’s probably it. She, ‘cos I, because I’m not, you know, that bothered about it any more it doesn’t bother her. But at the time it did. At the time it was, you know, it was quite, shed want to come and give me a cuddle and I, you know I’d, ‘Sit next to me by all means but I can’t cuddle you. So, stupid things like I’d kiss, give her a kiss because my jaw hurt. So that’

So did you explain to her at the time, you know, anything?

Yes. ‘Cos she was old enough to re, you know, ‘cos she was old enough to know I mean I have stepchildren as well. No I, no I don’t think we really did. I don’t think I actually sat down there and really spoke to her. I mean, I remember saying to her, you know, she was in tears and, you know, ‘Mummy, mummy’ kind of thing and I do remember saying to her, ‘It’s going to be, you know, it’s going to be difficult and theres some things that I’m not going to be able to do and, you know, I am going to lose my patience, you know, quicker but it’s not you. You know, and then when you find out what it is definite, you find out what it is you think, you’ve got that like, this is what it is.

But I don’t think we ever actually, children respond how you are. Because she could see I was feeling better, looking better, it helped her. It was just, you know, that, it was just that main thing, the main, ‘I’m not going anywhere, [daughter’s name]. You know, I’m not going to die, I’m not, this is not going to kill me it’s just going to be really uncomfortable. And that reassured her.

I mean, although I haven’t got a family, I’ve got step-children and they’ve had to come to terms with it quite a it as well. My stepdaughter is nine years old. My stepson is thirteen and although he’s older he’s just very huggy now, but she is very, she wants to sit on your knee, she wants you to pick her up, run around, dance around and it’s taken her a lot to come to terms with the fact that I’m not the person I used to be. I can’t do all those things and I think for somebody with a family it could be quite a, quite a problem for them. I mean kids do understand. Kids adapt.

But every now and again I get these comments of, ‘Why don’t you do this like you used to do? Why don’t you do this like you used to do?’ And I just have to say, ‘Well, I can’t anymore, you know. You know I can’t anymore. So, I think somebody with children, it could be quite a problem.

Do they live with you and your husband?

No. They come every weekend. We see them every single weekend. Try to spend a lot of time doing homework and stuff with them. And, again, a lot of art stuff and, again, I can’t do the things I used to be able to do. Baking with kids, and art work with kids. I just have to stand back and say, ‘I’m having a bad day to day. You do it with dad and I’ll direct you. You know, I’ll tell you what to do. It’s not quite the same really.

But they have responded.

Oh, yeah, yeah. I mean kids adapt quite easily really but they have learned, yeah, they have learned that I can’t do what I used to do. But it doesn’t mean I don’t get reminded of that every now and again by them [laughs].

I didn’t let anyone know how bad it was. You put a front on. It wasn’t until I got indoors that I’d do the little weeping and the wailing kind of thing [laughs]. So yeah, I don’t, I don’t think they really knew, like, as I say, my mum didn’t know until wed gone to [the] Zoo, how bad I was. And she was really, really shocked. ‘Cos I just didn’t tell, you know, I’d just got on with it. Struggled, I didn’t, you know, I didn’t cope with it, I struggled. But as far as everyone else was aware it wasn’t as bad as, you know, obviously for [daughter’s name] and my husband, they didn’t really know how bad it was. So I did cope with, I could go to Hollywood, couldn’t I? I could be in Hollywood. But no, I did, I did really, yeah, yeah, I did cover it.

I think one instance wed gone to, wed gone out with my brother-law and all our families and I was, just sat down normally. I was sat in a club kind of thing, you know, sat down having a drink and it was just like, ‘I’ve got to go to the toilet’ and it took me about 5 minutes, to get up, to get up and get out of the chair. And you know people were going, ‘We didn’t realise you were that bad. ‘Cos I just couldn’t get my body to do anything.

And after you’d found the diagnosis was there anybody you chose not to tell?

No, no there, there were, there wasn’t. I felt I had a lot of support at that stage from people knowing. I, it, I mean obviously it was a big shock to me but other family and friends and people from the church were, you know, seemed very concerned and, you know, people send cards or flowers and visit, and you know, that, that was encouraging and sort of helped me get through that initial stage of it. So quite a few people I think did know and obviously people from work and I think news got around quite quickly at that stage and I did find that a help.

Yeah I had people visiting and, and that, and people are quite understanding they don’t, well, they don’t, no-one’s ever been, they just ask a few questions and then they just like oh well I’m, poorly [laughs] but they’ll, you know, that I’ve got support and that it’s not, it’s just, I don’t think they sort of just treat it as that I’m ill and, and, you know, and try and cheer me up [laughs]. But generally they’re quite supportive, they’re not’

Were there people that you chose not to tell that you had RA, that you had been diagnosed?

Yeah I tell, I’d not, I wouldn’t tell just anybody you, I do, I tell sort of people at work and I tell, I wouldn’t tell [sighs] I tell close friends but I wouldn’t tell necessarily friends that weren’t close.

Why?

Well it’s just that, it’s, it’s not something you tell people I don’t think because then, you know, they, they at the end of the day I don’t want people sort of asking questions and then you just go through the whole thing and then they’re like, and the, the first reaction people, give you, ‘Oh that’s for old people. And, you know, and being so young that’s the, the first thing people say and they say, ‘Oh you’re too young to get, you can’t possibly have it you’re too young. And then, then they don’t realise how ill you can get and, because, at the moment I look quite healthy and, but I wasn’t so healthy when it was really bad so, they don’t, they don’t realise actually how ill you are and I’d rather not go into that anyway [laughs] ’cause it’s you just don’t do you?

I think I kept it quiet from the rest of my family for a little while. I had to come to terms with it, I think, myself. And then once I’d realised, you know, that they, they weren’t going to look at me any differently, they were going to just help me as much as they could then I told the whole family and all of my friends. I felt that my friends would treat me differently, that they would, you know, don’t, sort of do too much with her, she can’t do it, and things like that. But I’ve been very lucky, I’ve got very, very good friends and they walk at my pace and if I want to walk faster they walk faster with me and things like that. They just know to do as I do and not try and, push me too much. And they are just very, very good friends that I’ve got.

Yeah, I think, well I think in the beginning, because I didn’t tell anyone apart from, my, when I told my boyfriend that I was in a lot of pain he thought I was pretending because I was meant to go and help work for his dad and he thought he I was trying to get out of working. And I wasn’t at all, I was in, he was kind of saying, ‘Oh, you’re fine, you’re fine. I was saying, ‘No, I’m not. And then after a few weeks he took me seriously and felt how hot my shoulders were and thought, ‘Yeah, there’s something not right. And because I kept it quiet I think it was difficult for people to understand and also it was difficult for people, and people would say to me, ‘Oh, yeah, I sometimes get sore, sure, sore shoulders. Or, ‘I get sore hands. And I was like, ‘But look at my, look at my feet, I’m having to wear size 9 shoes. All my shoes are a size 5. Look at my hands, feel them. You know, ‘Feel my shoulders, this isn’t normal. I can’t, you know, I couldn’t move, I’d be kind of dragging myself up the corridor to my classroom. I’d have to sit down to teach because I couldn’t physically stand. And I think it’s, people do, or potentially could think, ‘Oh you’re exaggerating’ or something. But I think because I’m the type of person who was not seeing a doctor or not really ill people did take it seriously.

I think now, what you have to be careful of is, is saying, ‘Oh I can’t do that because of my RA. I think you have to be really, and I think there are things you can’t do but you have to be careful not to use it as an excuse because I know when I’m tired sometimes you think But then in another way when you’re really tired and you’re hurting you do have to cool things off and you do have to say, ‘Look, I can’t come and meet’ I’ve had to do, cancel weekends and just say, ‘I can’t do it. I’m so tired I can’t possibly drive up here or do this, that or the other. And I think people have generally been really good. But I can see why people would have problems, I can see why people would say that that was an issue definitely but I’ve been really lucky. As I said, m y family are so supportive and my friends are fantastic, that I haven’t, a lot of them don’t really understand what RA is I think. All my close friends do, and they’ve been really supportive and they’ve read things and been fantastic but I think more distant friends who perhaps don’t know or, you know, know a little bit, they don’t really understand what it is so they’re probably not as but I’m not really concerned about that to be honest with you. I’ve been very lucky [laughs].

OK. Talking about friends, how have they responded to you being diagnosed?

Really, really well. My excuse me my friends have been great. My yeah, they’ve been really good and they understand if I can’t go out dancing all night like I used to be able to, or I can’t really think of anything else that I don’t do. Like I can’t trawl round the shops all day because I just get absolutely shattered and things like that. But they’ve been absolutely amazing. Absolutely, and my family have just been phenomenal as well. And my boyfriend like, I’ve got such a good support network, and, which is really good because in the start I was really upset and, yeah, they’ve been absolutely amazing. And I think you need that, I think that’s really important.

I mean, I can sit through, next to somebody at a dinner party for example and we will talk all evening about all sorts of things and it will never come up and I won’t bring it up under those circumstances unless, you know, I was directly asked a question or you were to say, ‘What’s the matter with your hands?’ or something like that. But where I do find it awkward, and I think, or embarrassing, and I think this is the same for probably most people, you feel as though you have to apologise all the time because you can’t carry things, because you can’t open heavy doors, because you can’t climb up lots of flights of stairs, because you’re coming out of the theatre and you’re going downstairs one at a time because that’s how you, the only way you can do it and you feel as though you’re holding everybody up behind you.

So you’ve, it’s a disease where you feel as though you’re constantly having to apologise because you can’t do things. And so in those circumstances where, you know, in business terms I’m out with somebody and they think, ‘Well why can’t she pick that bag up and carry it herself?’ You know, and then you have to explain why you can’t pick it up and carry it yourself and so on, so it’s, it’s sort of embarrassing in that sense but there isn’t anybody that I wouldn’t feel I could, I could just say, ‘Look I’m sorry I can’t do that because I’ve got rheumatoid arthritis.

I mean the supermarket is a classic example of that. My husband is forever saying to me. ‘Don’t carry the bags to the car. Get the supermarket to do it for you. And yet I still feel embarrassed at having to say, ‘Would you mind carrying my bags out to the car for me because I have arthritis and it hurts my hands. I have, you know, because they look at me and think, ‘Well she look reasonably normal so, [laughs] you know, why have I got to carry her bags out to the car? Who does she think she is, Lady Muck?’ It’s that sort of thing that, you know, you, you feel embarrassed about. Because to all intents and purposes you look reasonably normal. And when people see me walk they can see there’s something wrong with me but you know, it’s, yeah, it’s, it is awkward sometimes. Because you don’t always want to be going around explaining what you’ve got, but [laughs].

Well in a way it’s a bit of a relief ‘cos then you know that, you know, there’s a name for it [laughs]. And you’re not just saying, ‘Oh dear, my feet are killing me again. You know, there’s a reason for it. And also it means if there is something wrong you can sit down and say, you know, ‘I’m stopping, because, ‘cos I’ve got arthritis’ [laughs] ‘Cos one of the things, when I went to the shops with my friend across the road whos, 60, 13 years older than me and before I’d been to the hospital, she was whizzing round all the shops and I was sitting down.

I’d say, ‘Well I’ll just sit down here while you go in there. And I thought, ‘This is ridiculous. And she’s one of the people I said, when I got there, you know, ‘She’s 13 years older than me and whizzing around and I wasn’t. So, and then go, go to Marks and Spencer’s and she stands in the queue while I [laughs] while I sit down to get the coffee and things like that and I’m thinking ‘This is terrible. But once you’ve got a name, you do, you know, you, you had an excuse then, for you to sit down and say, ‘I can’t do any more, I can’t walk that far. So it’s better really.

No I think you should be openly, open-minded about it in all honesty, not to be frightened of it. No I’m open-minded about it basically. And the more that you talk to different people, especially going back to elderly people, shall we say again, a lot of my customers are elderly people and when you talk to people it’s amazing the amount of people that suffer with that condition. ‘Oh, I’ve had that for, I’ve had that for 10 years’ [laughs]. It’s no, it’s a, it’s nice to talk to different people about the condition and how they, how they sort of overcome, how they cope with it, yeah.