When you were first diagnosed, can you tell me how you felt emotionally? You said that you were upset.

Yeah. I was really upset. Because I assumed I’d be fine. And I was really upset and I was worried because I didn’t know what, I didn’t know anything about what RA was really apart from just the brief part the consultant had spoken to me about. So I was really upset. I was scared I think. I was quite scared because I didn’t really know what was going to happen. I was really, I was worried.

Were you angry?

Yeah. I, not at, initially. Probably the first week I was just really upset. I was gut, I was really upset and I just thought, ‘Oh no, everything’s going to have to change, you know. I’m going to be in this amount of pain for the rest of my life. I’m going to yeah, have big man hands and man feet forever. [laughs] And I’m going to, you know this, that and the other. And then, I think, a week or two later I was angry and I was, just thought, ‘This is really unfair you know. I’m a good person, I haven’t done anything bad, you know. I’ve tried to live a good life. It’s not fair that this has happened. Which I think, naturally I think most people probably go through that when they find out they’ve got something. And what got, and what I was saying to some people was I feel, I felt like, because you have it as far as they know for the rest of your life, there is no cure for it, I felt almost like you’ve been given a life sentence. OK, it’s not going to kill you but you still have to spend the rest of your life thinking about things, doing things differently. You know, if you want to go travelling to different countries on the medication I’m on at the minute, you can’t go to certain places because you’re not allowed certain vaccinations. And so, you, I just felt like I’d been given a bit of a life sentence because you have to be careful for the rest of your life and you have to think about when you want to have children and you have to think about where you’re going on holiday and you have to think, ‘Can I leave the country for two week because I have to go for my two weekly blood tests?’ And now that it’s gone to a month, that’s better.

So, yeah, then I was really angry because I just felt it was really unjust. And then I kind of accepted it and thought, you know, ‘Oh we just need to work with, worse things happen, I just need to now get on with this, look after myself, get, educate myself the best I can and just see what happens, just look after myself and not run myself down. I think it was probably a bit of a wake up call that you can’t do everything. Yeah, but yeah, I definitely I was upset, angry and then kind of accepting.

[laughs] And your attitude now is to work with it?

Yeah. Very much, very much. And try not let it get me down. And try not make it rule my life if that makes sense. I try and, sometimes I’m so, prime example, I was really tired on Monday and I thought, ‘Oh I don’t’ want to do anything,’ and my sister phoned me and said, ‘Do you want to meet up and go to the cinema?’ And I thought, ‘Oh, I just can’t. I thought, ‘I’m going to do it. You know, even, it doesn’t matter if I’ll be done in for the rest of the week I will, because you don’t want to let it rule, rule things. So, yeah, now I’m just very much, I have days when I’m upset and sometimes if I’m talking to someone particularly about it or, I don’t know what will trigger it. I will get upset about it. But generally you just, you think, ‘Well I’m glad it’s not something else’, you know, so.

Absolutely devastated, shocked and very upset because as I said I didn’t realise, I didn’t really think about arthritis at all before that and I thought that it was something that came on gradually with old age, and I was told by the, not by the registrar at the hospital, but by the consultant that I saw next, that it was incurable, although there were measures, lots of things that they could do, operations and drugs that they could do to help but that there wasn’t a cure, which was difficult to, very difficult to cope with at 27.

Did you know much about rheumatoid arthritis?

Nothing at all apart from a memory of my childhood when, and I think this is partly what upset me at the time, I had to go to the hospital for something routine with my mother, and while we were waiting, another lady was pushing a wheelchair with a young woman, who was very obviously very seriously crippled, and I said to my mother, ‘What, what is it that she has?’ and she told me it was rheumatoid arthritis. And I think this image stayed in my mind and that was why it was quite a shock to be told I had the same thing.

I’m sure, I don’t think I went, I don’t remember thinking on my 22nd birthday, I feel lousy and I’m going to the doctors and I don’t know what it is, and I think, I don’t think I was frightened of dealing with whatever it was, I think I thought I’ll be better in six weeks, it’ll be, it’s only like a virus, you’ll be better. It’s like when you have a headache, you’ll be better in an hour because you’ve taken tablets and it goes. I never thought theres something else deeper here and I can’t deal with it.

So when I went and had some tests, although I thought what am I dealing with, I thought as long as I know what I am dealing with, I can deal with it and so when he gave me the name, it was a seronegative rheumatoid arthritis and I thought right, I hadn’t got a clue what it was. But you know the word arthritis you just think of the the little old ladies with it, and I thought ‘Oh I’m not going to die but I know what to deal with now and you go away and although at the time, you ignore it, you’ve got the label but you’ll just stick it in that box and I won’t deal with it now, its, I’ll just push it to a side and that’s what I did I think, I just thought, I didn’t want to, I didn’t want to see what it would develop into and I think a lot of people are like that you know I didn’t want to see what I was going to become.

I didn’t want to see somebody in a wheelchair, with the joints all deformed and I didn’t think, I didn’t realise how bad you could possibly get either, but and I didn’t realise how the positive side of it as well, but I thought I didn’t want somebody to influence how I was going to become, it was like somebody saying ‘Well if you take this tablet the side-effects are going to be blah this’, so some people, I’d rather not know and find out later, so I’m going to be a bit sick, but it’s a side-effect of that, now that’s okay I don’t want to influence what it’s going to be. I rather do it in my own way.

Well I’ve had sort of arthritisy bones since I fell off a horse in the thirties so I was used to having to be a bit careful and having pain. A great thing, I mean it was I was still, what in my early sixties when it was diagnosed and one feels, I felt quite pragmatic about it because there are so many worse things it could be quite often. I mean it’s not a very pleasant disease to have and it’s there and its going to be with you all the time and of course it’s going to get worse gradually, can’t help that. But there are various things that can be done to keep it going and it’s very much, how you deal with it, I feel, I, one can’t succumb to it, you have to fight it a bit all the time, and stretch and try and do different things I think, just to sit back and let it grasp you, then that doesn’t make you feel any better either because everything just hurts more when you do move;

So the biggest, the biggest shock to me really has been 1) I didn’t know what to expect when I got it, 2) I didn’t have a clue what it was and 3) I certainly didn’t realise the impact it would have on my daily life and my work life and my marital life.

Well as I said before I didn’t know what he meant, my wife certainly did. I thought arthritis was something you got from wear and tear and that came on with old age, still playing and squash and football, I thought I was reasonably fit and he tried to explain to me that this was different it was an auto immune disease and basically what was happening was that my T cells were actually attacking perfectly healthy joints, for no reason whatsoever, or not one they’ve found yet, and basically eating up my cartilage from around the joints, and that was then causing the pain. So I would have to be on medication for the rest of my life and the only thing they could do for me was to try and dampen down the effect of these T cells combined with pain killers to stop the pain.

And when you were first told that I mean, how long did it sort of take you to sort of really realise that it wasn’t going to go away sort of thing?

After I spoke to my wife, I mean I told her and she looked at me in disbelief really. Because she’d always thought I’d drop down dead of smoking one day, and not get something long term like this.

So she explained it to me better than anybody else had really. But I must admit, I’m not sure even now that it’s sunk in, that I’ve got this thing for life.

No, well I knew one other person who that I knew and I’d seen her. This is going back you know, way before, before I had it or even knew about it, and I remember seeing her and you know, she just wasn’t, she was really mad and you know. She was just completely nutty, but good nutty, you know and she was just and I remember seeing her in a car park. She was not that person. She was bloated, you know ‘cos of the and she told me at that, I had spoken to her, that, that was the steroids. It was the steroids that has done it to her.

And I can just, I just remember, you know seeing her and thinking, ‘Oh my god. You know the last time I saw you was probably six months ago, a year ago and you, she was not that person. The fat didn’t help, that didn’t help with me when I, you know when they said to you, it could be, ‘cos even though I thought ‘No that’s a you know, I’ll have deformed hands and you know kind of thing. And then I remember seeing her and I thought, no, I can’t, I’m, you know, I, how I was, is how I saw her. You know the bloated, the, she couldn’t move properly.

She was holding on, you know holding on to a supermarket trolley and just you know and like that really did stick into my mind and I probably saw her six months after that. She looked a lot better. She was, you know, slimmer, the bloating had gone. She wasn’t back to her normal, you know, you wouldn’t, you know right back to her normal self, and I prob, I saw her ooh, not long after I got diagnosed with it, and she gave me hope [laugh]. She was totally different, totally different. She was back to the person, you know, that was before, that I knew before, you know, that could, you know that completely nutty person.

Well, at the time I was very ill with it. The thing that really shattered me, oh well shattered me, I’ve always been one if these fellas who if it’s happened, it’s happened. I’ve had accidents in the car, on the road. I’ve been in hospital for weeks and weeks with accidents. But it’s happened and there isn’t no turning back, you just, its’ the last met, one of my, one of my major accidents I had in 1976, I said, ‘it’s project get well that’s what you’ve got to do, it’s project get well. You can’t put, you can’t put the clock back, it’s happened and this has happened.

The only thing that really bothered me was the fact that I’d be locked up like this for my life, all my life, and there wouldn’t be any relief from it, because it’s not a disease that can be cured. It’s incurable and so obviously that leaves you to believe that you know, you’ve got it mate, and this is how you’re gonna be.

So that was my first reaction to it, you know, I thought where is the relief coming from, you know, I didn’t know, and that’s why I’ve done all I can to since then to get the information ‘cos I’ve always believed that, you know if you can find out the more information I find out, yes it worries you, of course some of it does. But the more information I find out the more comforted I am. And that’s why I say about these new drugs, I’m, you know, I’m comforted to think that new things are on the way. But then, my first reaction was, oh, oh dear, my life has come to a, a sudden halt. And it had, it had literally.