Rheumatoid Arthritis
Sources of support for people with rheumatoid arthritis
Adjusting to rheumatoid arthritis (RA) may not be easy, but sources of support abound. Most people we interviewed received support from family, friends and neighbours. Parents, children, partners and others gave practical help with cooking, housework, shopping, transport and personal care. A partner gave both practical and emotional support but was distressed at seeing his wife in pain.
A supportive family and teamwork as well as mutual support between him and his wife help them...
A supportive family and teamwork as well as mutual support between him and his wife help them...
You have a good sense of support?
Yeah, yeah, I mean I'm not the, I'm, the key support, I'm just part of that, that support team really, It's what mec'I guess because you know I have this relationship with my wife then perhaps I'm there 24/7 but you know there are other people around that are willing to come in and support, like her parents who are fortunately still alive. They contribute on a daily basis, in terms of communication, work around the house, my father-in-law still helps with the garden and yeah around the house so, yeah everybody sort of is part of it really.
So what do you feel has, have been the most important factors in helping you to cope so well with it?
Our relationship I guess really, the fact that [pause] it's happened and we have no control on that happening is not a reason to not be part of it. You need you.. it's, it's an acceptance from my point of view that it's prohibitive to my wife's activities sometimes, but I know that in a positive mental state she is very supportive of what I want to do, so it's a mutual support and respect I guess, that continues to sort of keep this going.
She met her husband only six months before becoming very ill and he has become her carer.
She met her husband only six months before becoming very ill and he has become her carer.
So, when you got ill, he moved in to, to support and to help you.
Yeah. Yeah.
That's nice.
It is, yes [laughs]. Especially when we met on line as well. Bit odd, so yeah [laughs].
So your relationship, in a way, became kind of stronger?
I wouldn't say it was the same as a normal, I wouldn't call it a normal relationship but it is' Difficult to explain really. He, because I'm different, I'm not the same person I used to be. Nowhere near the same person I used to be. I've had a lot of my independence taken away.
He's been there, I don't like putting on him though, although you have to sometimes, I'm stubborn [laughs]. I try to do things and then he lets me go so far, and then he'll take over [laughs].
He made a mistake one day, when, just after he moved in, actually, he said, 'Would you like me to cut your dinner up for you?' I said, 'I don't think so.' [laughs]. And he said, 'Okay, I won't be asking that again.' But I suppose it is because I am so stubborn that I do try to do more than I'm supposed to. I must admit that. I don't know what I'd do without him.
I suppose I am lucky, I know I'm lucky, I am lucky that I found him and he found me, at the time we did, because I don't know what I'd have done otherwise, I really don't. I was a single parent anyway, when I first met him, so, which is hard enough when you're able bodied, but then, when you've got a lot of illnesses, it piles on the stress even more. And then, eventually, I couldn't drive either. That was six years ago, I gave up driving, because I couldn't do it anymore. And that really hurt. That really affected me badly.
So, you can't drive now.
I haven't been able to drive for six and a half years. And I hate it. I really hate it. Can't stand it. I was very, very independent, very independent, now I have to sit there and say, 'Oh, would you mind taking me here? Would you mind taking me there?' And then you feel bad because he's having to stop what he's doing all the time, and take me here and there. He says, 'Yeah, but I don't mind.' And I say, 'Yeah, but I do.' But there's no other way round it. So.
Some people found the change of roles difficult. For example, a 78 year old woman found it hard to accept help, and thought her daughter was over-protective (see also 'Social life and relationships').
Her children offered help, which she needed, but sometimes she found the role reversal hard to...
Her children offered help, which she needed, but sometimes she found the role reversal hard to...
But he needed to do that. I mean, in, in the early days I would have fought and said, 'Don't be so silly, we're not imbeciles, of course we can get on a plane', you know, 'We've done it before, we can do it again'. 'Yes, but you're a lot older now. And so am I', he says. And he needed to see how, even with care, we coped. And that is the same with my daughter.
She gets over-protective at times, which drives me up the wall and across the ceiling because I feel, 'Look I'm still your mother, you're still my child. Sometimes it reverse, seems as though it's reversed round' and I have to say to myself, well I don't have to say to me, I have to say to God, when I, I say my prayers, 'Forgive me for misinterpreting her intentions'. And again it comes up with this, 'She meant well' [laughs].
One woman said her mother found it difficult to accept that roles had been reversed and that her adult daughter couldn't do things that she herself still could.
Although very supportive, she thought her mother felt sorry for her due to the role reversal.
Although very supportive, she thought her mother felt sorry for her due to the role reversal.
My Mum, I've more recently, last, especially last year when I had the two replacements done, my Mum was very, I think she was quite upset in one way the fact that she is of her age and is more capable than I am. And she went through a phase of finding that very hard to deal with, that she was doing the things that I should be doing for her. It should be reversed roles. And I had to sort of try to explain to her that you know, I do what I can do and I don't want her to think of me as not being able to do things, I want her to just act as normally as she would do if I wasn't, didn't have anything wrong with me. It's very it, she went through a stage of, she didn't pity me but probably feeling sorry for me and wishing that it wasn't me it was her, she went sort of through that, that time. That was quite hard, yeah.
Many people didn't like having to depend on others for help. For example a young woman found it very hard being dependent on her parents. In particular a broken leg, at the time of interview, meant she had to wait until they came home before she could go to the toilet. One man said that he and his partner, after a few years, had learnt when she needed help but he also recognised her need to still do some things independently.
Depending for help on her parents was hard, especially having to fit into their timetable.
Depending for help on her parents was hard, especially having to fit into their timetable.
My mother and father both work I have to go to the toilet in the morning before my father goes to work. I have to get up at half past five to go at quarter to seven, go to the toilet before he leaves for work. I've sort of trained my bladder to be, to be still all day till he comes home. And then I have to go to the toilet at night at a specific time so that he can go to sleep to get up the next morning. And, you know, they don't have much of a life, they don't have much of a, a social life but they, as I say, they work and they've got to go shopping and do what ever and obviously they try and accommodate me a lot but to an extent you're going to somebody else's timetable.
Has learnt over the years when to help his partner and when to accept she wants to do things...
Has learnt over the years when to help his partner and when to accept she wants to do things...
There's going to be days when we've still go to do that there's no, there's no crime asking for help, but it's taken a few years to get that point which I could probably understand because, not it's, I mean, I cope from that point of view, it's, it's not dignity anything like that, it's just frustration of not no.., not being able to do day-to-day tasks yourself and that, that did, I could tell that bothered her because she, she didn't want to sort of have to rely on people like that.
Nowadays you know, we've, you get a lot of good days, but there's gonna be the odd bad day and you've got to face that and I think it's, it's taken a long time to come through that and realise you do, you do need help on these things. So she's, she's good like that now, but it's been so, it's been a while, I can, I can sense it as well, you, you do get a sixth sense for when it gets bad and you know you just keep, I just keep bothering her sometimes if I know it's, you've gotta do it sometimes because if you badger someone long enough, then they'll think 'oh, you know, sod it, I'll let you do it' [laughs]. Yet, it's, it's not too bad now but it was a problem.
A few said that other people didn't really understand what it was like to have RA - the pain involved, the mood swings or the changing nature of the disease. People wanted others to understand their problems, to help when necessary, but not to fuss too much.
Sources of support outside the family
Help and support came from other sources too. For example for one woman these included members of her church and of the local Rotary Club. If anything was going on, such as a social event, someone from the Club would pick her up and take her.
Arthritis Care, a UK-wide voluntary organisation, also provides support and information through self-help groups, a help line and a website. It has changed in recent years to be inclusive and provides services for all ages and at all stages of the disease (see 'Resources' section).
One woman found Arthritis Care empowering because articles in the magazine helped her to understand that the 'problem' of disability doesn't lie in the individual but with society.
A few people had joined support groups and had found them helpful. A 45 year old woman liked the support group because when she talked to other members she didn't have to put on an act pretending that she was stronger than she felt. It was good to talk to others who understood the condition.
A 38 year old woman particularly recommended support groups for younger people. She joined a group of people who went on outings together. They also invited people to talk about various aspects of the disease. She remained in the group until she reached the age of forty, the age limit at the time, and moved to a group for older people. Although some people found the support groups invaluable, many others didn't want to join a support group.
She attended a support group for others with rheumatoid arthritis but didn't like it.
She attended a support group for others with rheumatoid arthritis but didn't like it.
No way. I went once. One of the local old gentlemen round in the village decided he'd do volunteer work and he'd take me to this rheum, rheumatoid arthritis, 'RA club' it was called. It was in a church, church hall. Unfortunately the church hall was in the middle of a busy town and he was a dear old thing but he would look at me while he was talking to me, so we'd be bowling along about 45 miles an hour and he'd suddenly say, 'And how are you today?' And I'd be, 'Ohh', grab, trying to grab the wheel to keep us on the road.
And I didn't like the, the actual club very much. It was because people were inclined, after the first five minutes, 'How long have you had rheumatoid arthritis?' 'Oh, you were very young'. 'Oh I've only just started it this last year'. And I'd say 'Well I feel very sorry that you've got it'. But what else can you say? They were all self not connected but 'if you haven't got arthritis you shouldn't be in that club' attitude you know and I didn't like that. And I didn't like being brought a cup of tea and biscuit and told, 'Now you drink that and you eat that' as though I was 5 years old.
I didn't like a game that they played. The second month I went to it we had this game where you were given a sheet of paper and it just had squares and on, in the squares were numbers and somebody threw a dice and you had to get a six to start off that and you had to put a round like O in this square and then the dice was thrown again and if it was a four you put one leg on the bottom, Beetles, Beetle-drive was that. I thought that was idiotic, that was doing no good for my fingers and as for my brain well that had gone walkabout out of the door. I thought, 'No way' So I decided, 'No I wouldn't go'. I, I'd make my own things. So I joined the local Art Club in the Village Hall and dabbled around there and made my own things.
She joined a Young Arthritis Care support group which helped her greatly.
She joined a Young Arthritis Care support group which helped her greatly.
Some people with arthritis don't like to do that, but that's mainly because I mean, perhaps they don't want to go along to a group and hear everyone talk, moan about arthritis, but I sort of went along and did mine and just switched off to people who moaned about it and sort of chat to the positive ones really and find out how they overcome, what they've done. But from our group a lot of people sort of were picking my brains because a lot of them had perhaps got it in their twenties and I've had it so long, so they were sort of picking my brains as to how, what I'd done and what tablets I'm on and that sort of thing. So you just learn from each other really.
And what sort of things happen in the support group, apart from just talking to each other?
Well we had a lot of the stuff in the support group we did, we went out on days out, we hired a tail lift coach and went down the coast and tried to make pleasure things, but then we had a lot of talks, we had a talk by a local Rheumatologist who came along and talked about how to manage the condition, we had a talk by a physio so that was quite interesting. I would only say for people that are newly diagnosed, for people like me that had it as a child I didn't really want to hear about physio because I'd done it and been there.
So, but you had to cater for all the people in the group. There weren't many of us in it because obviously there's not a lot of young people in the area and the group was, it was sixteen to thirty five I think it was, Young Arthritis Care but they've now expanded to forty five, so after forty five I don't know what happens [laughs]. Actually a lot of us, I think they might have done it to forty because a lot of our group folded when quite a few of the members became over forty, and we were all classed as too old to be in the group and it folded.
But presumably you were all quite keen to, sort of, still meet or?
Yeh, well a lot of the people I do keep in touch, I, a few of the people I do keep in touch with, we are now friends, but some of them have gone along to the older group, the Arthritis Care group in our area, which apparently has over a hundred members and I have been a few times, but it's full of old age pensioners that have had it for five years and come tottering in with a stick and say, 'Oh I'm gutted I can't'gutted I couldn't do my two mile walk today', you know that sort of thing. So I thought 'oo whoopee do' you know, so I did, I have tended not to go to it to be honest. But it is quite a thriving group and I sometimes get the programme and I look through and see if there is anything that I find of interest, but obviously it's not listening to your local Rheumatologist or I mean for me it wouldn't be, to be honest.
Some worried that the conversation might be depressing. Others wanted to try to lead a relatively normal life and didn't want to be defined as disabled. A few had been to a local support group but had not enjoyed the experience. Some groups seemed to be full of elderly people, which didn't appeal to those who were younger, with careers and young families. One woman tried two such support groups, before moving again, when she joined a group which helped her accept her RA and make new friends.
Several people wanted to give support to people with RA (and other disabilities) so they knew they were not alone in dealing with the disease. One woman felt it was important for people newly diagnosed with RA to have positive role models. One man had volunteered to join the National Rheumatoid Arthritis Society Support Network, which offers mentoring and support via email and telephone to other local people. Others helped set up and run support groups and one woman volunteered at the local hospital, working with parents and children with juvenile chronic arthritis.
Arthritis Care 'Challenging Arthritis' courses, usually run by people who have arthritis themselves, the programme is a weekly workshop of 2.5 hours over 6 weeks. Such a course did one man 'the world of good' because he could express his feelings and talk about his experiences. Another man also attended this course in his locality. The people who attended enjoyed it so much that after the course finished they decided to meet regularly at the local pub.
The six week Arthritis Care course called Challenging Arthritis did him 'the world of good'.
The six week Arthritis Care course called Challenging Arthritis did him 'the world of good'.
Anyway, they run a 6 weeks course and they give these course locally, all over the country. They started about 2 years ago and when I went along to the first session I was in a very, very, depleted state. And after the course is run by people who are fellow sufferers and I must say that whilst the course doesn't aim to talk about medication that's, it's not, they talk about the peripheries of the disease and the effects I've been describing such as the psychological effects and the like.
It's a course where people can express their, as I'm expressing now, their views about the whole complaint, how it affects them in and I found that course over six weeks to be extremely beneficial and I'd recommend that to anyone who is suffering to go along there because it's like it's like going to a session of Alcoholics Anonymous you know and they, you can, you know talk all your thoughts out and they, structure it extremely well I think and it did me the world of good.
At the end of six weeks, whether it be that or whether it be for other reasons, I, but I, felt much, much better, knowing just that you've talked to other people who are suffering in similar fashions and they all have, or the majority of them, have exactly the same feelings about your, the complaint as you have, which is which is something in a sense to know. The inertia that you have overcome to do something, you know, just to make lay down objectives each day, just to walk around the block and you know make up your mind that you're going to do it, is, is something and to do it is quite another thing, when you can't move.
Two women described attending an educational course for people with arthritis at their local hospital. Various people led sessions, e.g. a consultant, a physiotherapist, a chiropodist and a ward sister. The course taught them about many aspects of RA, including how different painkillers worked, which one of them found 'really beneficial' despite having had RA for many years.
She attended a five weeks course organised by her hospital about the practical side of living...
She attended a five weeks course organised by her hospital about the practical side of living...
Yeah I mean, I'm quite an upbeat person anyway and, you know, and I've learnt to, learnt to sort of live with it and, and I don't think about it all the time , but, it, because it progressed really, really quickly it just, you couldn't, you couldn't being emotional about it 'cause it just completely changes your life you know, you sort of in this upheaval of not being able to do what you'd normally do and, and, you know, and you have to ask other people to do stuff for you and that's not very nice 'cause you, you're used to being able to do stuff for yourself and you can't. So it, it, it kind of limits your freedom in a way it, you can't just, you have to plan everything [laughs]. And do so like that which is quite limiting but.
I just thought it, like old people had it and that was it [laughs] it was something to do with your, your bones and being frail and old, and I didn't really know anything at the time but then I was given quite a lot of information when I was referred to the rheumatologist.
Knowing about it obviously is a lot better 'cause you can understand the best ways to deal with it yourself as well as them helping you with medication and stuff, so you learn about the best ways to do certain activities and, how to, you know, like I was given a lot of information and a lot of, things that weren't just like medically related like how to deal with, certain situations or, you know, how to make things easier and that so's, in that respect was given both sides of the information rather than just.
Can you give me an example?
I went to I was put on a, it was about a five week course and it was sort of more like a sort of social care rather than , just medical care and we were sort, taught about various different sort of kitchen equipment that you can buy and how to use it and exercise and diet and, sort of it covered everything really, that you wouldn't normally get from your doctor and that was really good and that was about, about an hour to two hours every week for about five weeks and it covered a whole variety of things, so I got that, that sort of care as well which was really good.
And who organised that?
That was through the hospital.
Okay.
Yeah through the [name] hospital.
The local social services department may also offer financial and practical help. People's needs can be assessed to see if they are eligible for help. Social services may be able to arrange for care workers to help with cleaning, shopping or other personal tasks (see 'Financial implications for people with RA and financial support').
Last reviewed August 2016.
Last updated September 2010.
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