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Rheumatoid Arthritis

Impact of the diagnosis of rheumatoid arthritis

How people felt about discovering that they had RA was influenced by how long they had been trying to find out what was wrong, what they knew about arthritis, how old they were and how they were told.

Although told that RA is incurable, one woman described how relieved she was to discover that it was RA because she was concerned that it might be something more 'scary'. Another was pleased to have a diagnosis that meant it wasn't all in her head. Others expressed relief such as, 'Well, thank God I'm not going to die from it and I've got a name for it now and I can deal with it.'

 

Was relieved to receive the diagnosis and discover that the problem wasn't all in her head....

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Was relieved to receive the diagnosis and discover that the problem wasn't all in her head....

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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They give you loads of information. But I think, I don't think you, you just don't take it in. You're so relieved that's it's not you, you know, you, you're relieved that they've diagnosed something, it's not in the head kind of thing. You know, you're not, you're not, you're not going loopy, there is something wrong with you. Well, he just you know told me what could hap, you know, not what could happen in, in a couple of years time. He just told me that, what's was gonna happen to me then, you know. And after being prodded and you know, various blood tests, you know, it came down to, I did have rheumatoid arthritis, so. 

Yeah. It, yeah to be told that it's not me. It is me but its, you know, it's something that could be dealt with. I think it was just the fear of what's going to happen. Am I going to be like this, you know, forever? But, once they, that you know, once you're given the, the, the prescription and the drugs that they're gonna put you on and I did have steroids. They did give me two injections, two steroids injections. And I felt better straight away knowing that there, there was someone out there who's gonna help me, who's gonna, you know, who's tell me, you know, who can, who could, you can give, you know, you couldn't say to me, 'right you're gonna be fine tomorrow', you know. He, he actually said to me, you know, the consultant said to me, 'Right this is it you're, this could happen. This might happen.' So I think it's more, yeah I did, I just felt a lot better. 

People who had RA in the family sometimes almost expected the diagnosis, but not always - a man whose father had very disabling RA said that he had not thought it would happen to him, since he had been in the army and felt strong and 'invincible'. Those who had developed RA much younger than their relatives often felt surprised and upset (see also 'Ideas about causes').

Diagnosis early in life particularly shocked people who thought the disease did not affect people in their twenties and thirties. Some were scared and preoccupied with questions such as' Will I be able to get married? Will I be able to have kids? What will my friends say? One described how her 'heart sank' - 'once it was given a name and a positive diagnosis it felt as though that was then to be my lot'.

 

She was shocked when recently (2007) was diagnosed with RA. Says that she was down and later...

She was shocked when recently (2007) was diagnosed with RA. Says that she was down and later...

Age at interview: 25
Sex: Female
Age at diagnosis: 25
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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'.

Several young people had felt 'devastated' or shocked at the idea of being admitted to hospital with 'lots of old people' although an older man commented that the hospital clinic was a revelation to him because he had not known that RA affected people of all ages.

 

Was devastated when RA was diagnosed at the age of 27 and thought she would end up in a wheelchair.

Was devastated when RA was diagnosed at the age of 27 and thought she would end up in a wheelchair.

Age at interview: 51
Sex: Female
Age at diagnosis: 27
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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.

A young woman who had been married for only 2 years said that at the worst stage she felt her world had been turned upside down. Another young woman explained that she took things one day at a time while trying to find out what was wrong and didn't think too much about the possible outcomes. Someone who was diagnosed with chronic juvenile arthritis was told that it would probably 'burn itself out' - by the time she realised it would not, she was better able to accept it.

 

Thought it was only a temporary illness but felt she could deal with it once it had a name. Didn...

Thought it was only a temporary illness but felt she could deal with it once it had a name. Didn...

Age at interview: 38
Sex: Female
Age at diagnosis: 21
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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 there's 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.

Some people seemed quite pragmatic about the diagnosis, although this was sometimes a way of coping. A woman who was diagnosed at 58 said that she was aware at her age there are worse things you can get. Others commented that knowing the diagnosis meant that they had a good reason to be excused from activities they found difficult or tiring.

 

Realises that there are worse things than RA that could affect her in her 60s.

Realises that there are worse things than RA that could affect her in her 60s.

Age at interview: 70
Sex: Female
Age at diagnosis: 58
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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. 

A woman diagnosed at the age of 20 said she 'went with the flow' at the time, but didn't know then how serious it could be. Some who had less severe symptoms at diagnosis said the diagnosis didn't mean much and they had no idea of how their life would change. Some thought it was 'something grannies got'. A man who has had RA for eight years gradually realised that the disease would affect many different parts of his life.

 

He had been shocked at the impact of RA on different aspects of his life.

He had been shocked at the impact of RA on different aspects of his life.

Age at interview: 55
Sex: Male
Age at diagnosis: 47
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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. 

Many people who had seen others with RA said their first thought was that they would 'end up in a wheelchair'. Some had seen older people with 'deformed hands', were understandably alarmed at the prospect of pain, or had been shocked to see how steroids had changed a person. Those who had discussed these concerns had often been reassured to find out that new treatments mean that people are much less likely to develop joint damage and that it should be possible to relieve pain or learn to control it.

 

Was alarmed at the change in an acquaintance who had been taking steroids, and relieved when her...

Was alarmed at the change in an acquaintance who had been taking steroids, and relieved when her...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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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.

A woman who was told she had 'a weak positive result' said that although she initially took the diagnosis in a matter of fact manner she set out to explore alternative therapies and try to cure herself. Others responded by wanting to find out as much as possible about the disease (see 'Finding information about RA').

 

Learnt she has a 'weak positive' result and decided to look for an alternative cure instead of...

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Learnt she has a 'weak positive' result and decided to look for an alternative cure instead of...

Age at interview: 49
Sex: Female
Age at diagnosis: 33
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So my husband happened to go for something quite, whatever, to the doctor and I said 'well do ask, you know, if the blood test has come back, you know what sort of, you know, what it is or if there's anything?' and I think just in passing, he said well, it's a weak result, a weak, weak positive for rheumatoid arthritis which, which was.

I don't know how I took it really because I don't think I really knew at that point, I very quickly became an expert on rheumatoid arthritis, but at that time I didn't quite know what it was really. So you know I thought, I didn't think I had a lifetime of a disease that I had to you know work, work with. So that's why really it was for me no big deal, it wasn't anything life threatening, I thought it was just something I had picked up that would go, really. So that's why I chose not to, you know go back.  It wasn't of any great importance, I didn't think, it was just an intrusion in my life at that time, one I wanted to get rid of, but I didn't think it would be with me for life.

OK, right. So I think what I was faced with, with was potentially a crippling disease and where do I go from here. I chose not to talk to my doctor, who would've been completely happy to have talked to me, but I think I possibly was going to cure myself at that moment of time. So, I think what I did is I looked at alternative therapies to start with and it possibly was, at that time, it wasn't, it took over my life and it was very intrusive, but it wasn't, I was very strong still, I was still very young, I had two children one of 6 and one of 3 and life had to carry on so it wasn't stopping me. 

 

Was very ill at first but was comforted by getting information about the disease and knowing new...

Was very ill at first but was comforted by getting information about the disease and knowing new...

Age at interview: 76
Sex: Male
Age at diagnosis: 74
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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.

Some people found it particularly hard to cope with the diagnosis. One woman said her feeling of depression was made worse because her doctors did not seem prepared to explain or discuss the diagnosis with her. Another was told at age 17 that she would be in a wheelchair before she was 30 which she described as 'a horrible thing to say'. In another case a therapist let the diagnosis 'slip', which was upsetting and not really alleviated when a couple of leaflets were offered.

People who had manual jobs, or who were raising young children sometimes wondered how they were going to continue to cope and support their families (see 'Work' and 'Financial implications and financial support').

Sometimes people are upset because the diagnosis challenges their self-image - a woman who was athletic, active and took good care of herself felt angry and asked 'Why me?' A physiotherapist who had often treated people with RA felt that she should not have got the disease herself yet felt the odds were against her because she had been bereaved and was coping with two children on her own.

For source of support see our Resources section.

Last reviewed August 2016.

Last updated March 2012.

 

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