Rheumatoid Arthritis
Impact of the diagnosis of rheumatoid arthritis on family & others
Rheumatoid Arthritis (RA) can be diagnosed at any age so the impact on the family can vary greatly. Sometimes a couple went to the appointment together and heard the diagnosis first hand. Most of the people we talked to had informed their close relatives soon after they returned home. Family members and friends were often not sure how to react since they knew little about rheumatoid arthritis. Few knew the difference between RA and the more common osteo-arthritis (or 'wear and tear' arthritis). Some relatives and friends, not in everyday contact with the person, did not understand the full effects of the disease on the person and thought it might be only short-term.
Family and friends did not understand the full effects of RA.
Family and friends did not understand the full effects of RA.
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.'
A husband said he was relieved to have a name and course of treatment for the symptoms his wife had but was also concerned about the long-term prognosis. Another didn't appreciate the seriousness and level of deterioration there would be over time.
Was relieved that his wife had been given a diagnosis but worried about the long term prognosis.
Was relieved that his wife had been given a diagnosis but worried about the long term prognosis.
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.
Didn't appreciate the longer term consequences of his wife being diagnosed with RA.
Didn't appreciate the longer term consequences of his wife being diagnosed with RA.
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.
Older people, including the parents of some RA patients diagnosed early in life, were often upset because they thought that disability would be severe. Fortunately modern treatments are much more successful and now people can realistically hope to avoid the disability and disfigurement that used to be associated with the disease. Parents may feel that they are in some way to blame.
Describes her mother reaction to her RA and her concerns for her own daughter.
Describes her mother reaction to her RA and her concerns for her own daughter.
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.
Some people have pre-conceived ideas about RA' one woman had to educate work colleagues that it didn't mean her career was over and she didn't want pity or wrapping in cotton wool.
Some people with preconceived ideas about RA felt sorry for her, which she didn't want.
Some people with preconceived ideas about RA felt sorry for her, which she didn't want.
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.
One husband, who worked in the oil industry in various hot countries, had to return to England and change career because the hot weather aggravated his wife's RA.
A woman whose father had had RA said she was determined to be more open about the disease with her daughter. Some worried that they might pass it on to their own children and were keen their children knew how to look out for early symptoms (see 'Ideas about the causes of RA').
The effect on children is likely to depend on their age and this also affects how much they are told about the disease. One mother felt that it had quite an effect on her nine year old daughter, particularly in the early months. She was too tired to contribute to household jobs and the pain also made her reluctant to cuddle or kiss her daughter. Her daughter became tearful and needed reassurance that the disease was not life threatening. Another mother decided not to tell her children about her mild onset RA and another decided, due to other stresses at the time, not to discuss it in depth with her teenage son. Later she found out that he had learnt about it anyway from his school biology and could discuss the cause of her pain with her.
Tells how it affected her daughter, age 9, and how she explained it wasn't life threatening.
Tells how it affected her daughter, age 9, and how she explained it wasn't life threatening.
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, she'd 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 there's 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.
Janet says that initially her stepchildren couldn't understand why she was unable to do those...
Janet says that initially her stepchildren couldn't understand why she was unable to do those...
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].
One woman told her relatives and friends but tried to hide the full symptoms and problems it was causing and 'put on an act' until she got behind her own front door. Not until family members spent some time with her did they realise what impact the disease was having. Another young woman appreciated the encouragement and support from others that helped her get over her own shock at the diagnosis.
She was hiding the symptoms of RA from friends and family and they were shocked on realising its...
She was hiding the symptoms of RA from friends and family and they were shocked on realising its...
I think one instance we'd gone to, we'd gone out with my brother-in-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.
Got encouragement and support from family and friends who knew of her diagnosis.
Got encouragement and support from family and friends who knew of her diagnosis.
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.
Several young people said that they don't mind telling close friends and work colleagues about their RA but they wouldn't necessarily disclose their condition to those they don't know very well. One of the main reasons was because rheumatoid arthritis is thought to be an 'old person's disease' and they usually get asked awkward questions or comments like 'but you look so healthy' or 'you are so young, you couldn't possible have it'.
She prefers not to tell acquaintances because in her experience they react in disbelief and it's...
She prefers not to tell acquaintances because in her experience they react in disbelief and it's...
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?
A few people who had been diagnosed relatively young or in their 20's, said that they did not tell others. Sometimes this meant that they avoided seeing relatives or going out socially, for fear of being treated differently or excluded from activities. One woman told her family but kept it secret from her friends. She later realised they just wanted to help. Another considers herself lucky because friends and relatives have rallied around after her diagnosis.
She was wrong to keep it a secret from friends and family for fear of being treated differently.
She was wrong to keep it a secret from friends and family for fear of being treated differently.
Thinks that before diagnosis her boyfriend thought she might be pretending to get out of doing...
Thinks that before diagnosis her boyfriend thought she might be pretending to get out of doing...
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.
Friends sometimes played an important role in encouraging people to seek help. One young woman waited four months to go to the GP and then it was a friend who persuaded her to go. Another woman told friends, who dismissed the aches and pains as a sign of age, but were then shocked to hear that it was RA. If the onset of the disease was severe it was obvious to friends and family that something was physically wrong.
People had different views about telling new acquaintances about their RA. Some felt that if it wasn't physically obvious then there was no need to tell people, and they didn't want people to notice as they felt self-conscious. Some would tell people but only when they felt the new acquaintance had got to know more about other aspects of themselves. If the disease affected the hands, the way they walked or if scars were visible, other people were likely to ask questions which would be answered. Other people we talked to said they would never introduce the subject of their health, but if people asked or it came up in a conversation they didn't mind talking about it. One woman explained that because she looked 'normal' she felt she needed to apologise for not being able to do things, or being slow. Sometimes having to ask for help embarrassed her.
Feels awkward and embarrassed because she can't do things and has to ask for help.
Feels awkward and embarrassed because she can't do things and has to ask for help.
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].
Some people were relieved to have a diagnosis and a name for their symptoms and problems. If people, including work colleagues, knew that they had RA, this gave them 'permission' to be excused from some tasks when they were tired and wanted a rest. A man explained that by being open about it he found other people who also had some form of arthritis and could share experiences about how to cope.
Relieved at knowing diagnosis and feels excused by friends when she can't do things.
Relieved at knowing diagnosis and feels excused by friends when she can't do things.
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.
It's helped to discuss his arthritis with people he meets through work.
It's helped to discuss his arthritis with people he meets through work.
Last reviewed August 2016.
Last updated March 2012.
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