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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...

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So I think yeah it's the positive sort of partnership that you know we are there and I mean not only me but the rest of the family are very supportive. The older children are very responsible and very understanding and supportive and fortunately their partners are a part of this big, big family that we have and we have family locally so I mean Christmas Day we sat 19 down to lunch or to, to supper and you know, everybody pulls and gets, contributes to that so I think, yeah, it's all about that holistic sort of well-being together and accepting that some people can't do exactly the same as other people but within a team everybody contributes to that team.

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.

 

Her parents helped her with the housework, shopping and childcare.

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Her parents helped her with the housework, shopping and childcare.

Age at interview: 51
Sex: Female
Age at diagnosis: 27
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In the early stages. I think probably the, the biggest problem in the early stages was tiredness. I think it made me very tired, and it's quite painful, it's quite a painful condition. But, but I think I, I coped reasonably well with it. I had a lot of help. We lived near my parents at the time. My mother used to help me a lot with the, the house-work and my father helped me with shopping and various things with the children. So that meant that really we could live a fairly normal life.

 

Gives practical and emotional support but finds it distressing to see his wife in pain.

Gives practical and emotional support but finds it distressing to see his wife in pain.

Age at interview: 63
Sex: Male
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Oh, well, I like think of course it flows from, from me to her  Whether she'd agree I don't know but I reckon certainly, I put in, put in the hours, of, of reassurance and hugs and kisses and, 'I'll do that for you and you go and sit down and let me do the washing up,' and, and so on. So I, I do a fair bit. And friends and family have commented  commented very favourably on that, in a superficial way. Of course it's not quite the same as  as deep support such as taking responsibility for the whole family and making the big decisions

No, I think that, there, there is a slight shift, on, purely on the physical side obviously towards greater dependency on me. I mean, for some years now she hasn't been able to get, if I'm not there she can't have a bath. So, she just can't get out of it again and that kind of thing. So I, there are certain, certain things she relies on me to, to do and they won't get done if I'm not there. But very few actually. Otherwise she will, in my absence, do them still, but with increasing difficulty.

And, so how much do you, would you say you actually felt burdened by her condition?

Quite a bit. But primarily not, not by the, the actual imposition of my time of, of, you know, darting out for, to put things in the bottom oven or, or lift the kettle or something, which I don't mind doing at all frankly. It's dead easy.

I mean I don't find it very stressful, I just find, you know the situation is, I mean she's in pain and I, it's almost like attending, attending one's own child being born, except that, that has a happy outcome but to see somebody you love very much in great pain and you can't do anything about it is just quite distressing. So I feel distressed.

And how do you cope with that?

Well I, you get on with it. I mean, try and do the odd little thing to, to alleviate the pain and, and  give her a hug and then frankly what else can you do? I mean she knows there's no, there's no cure in sight immediately so, so I get back to work at my computer, or something. Take the dog for a walk or [laughs].

 

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.

Age at interview: 40
Sex: Female
Age at diagnosis: 38
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No. We were only girlfriend and boyfriend when this all started. So, he's [laughs] he's been my rock really. I don't know what I would have done without him really. He is good, so.

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 social 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...

Age at interview: 78
Sex: Female
Age at diagnosis: 32
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It's only now, that they are older, that we seem to be equals in as much that  my son lives abroad. Before my husband died, we would visit them once a year, they would visit us the next year and so on but as I've got older it's been a case of, 'Do you think you could manage to come out, could you get on the plane all right?' In fact my son has come over here, stayed a couple of days, collected my husband and me, taken us back on the plane to where he lives and then coming home, he's come home, stayed a couple of days with us see  that we are settled in and then he's gone back. But that's a very expensive operation for a man with two children. 

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.

Age at interview: 37
Sex: Female
Age at diagnosis: 27
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My Mum was my first port of call and I cried for ages but she was very, very good. She just said, 'You know, it's early days, we've got to just, you know, go with it and just deal with it as it comes.' She was very good, came and stayed with me and yeah, it was hard work but it was, it was good. She was very good.

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.

 

Family, friends and neighbours offered to help but sometimes she wanted to be independent and...

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Family, friends and neighbours offered to help but sometimes she wanted to be independent and...

Age at interview: 45
Sex: Female
Age at diagnosis: 17
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Yeah, mainly my Mum, she's very good and my children obviously, my sister's very good, friends, yeah they've been alright nothing sort of, they've helped if I've had to go into hospital and things like that, but I'm a very independent so and so and I refuse help rather than, I know I shouldn't do but I'd rather do it myself and get on with it. But they're there if I need them, and they talk to me if I need, or they listen to me rather if they need to. Yeah they're very understanding. I've got good friends and most of the neighbours are quite good as well.

 

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.

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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I definitely would say the most difficult thing is that, every single physical task is, is made more difficult. And not only that but when you are dependent, which I am at the moment, I haven't always been but I am at the moment, you rely on, you go to everyone else's clock, to an extent.

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...

Age at interview: 31
Sex: Male
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She, I mean, she likes to be able and do things herself so to a certain point she would. It, I've got to be honest, I could after a while see when I really knew she needed things, and probably earlier on it was more frustrating, she probably was less, less inclined to sort of ask for help until it got to a point where perhaps she's got no choice. Nowadays, because she's had the illness for a fair few years, it's not something she probably does really have to, she doesn't hold back on because we're used to it, we deal with it, it's part of our life, whereas before when it was new, it was almost like, you know, frustration that we'd like always had to keep things to yourself and just try to do things, stupid things like taking shoes and socks off, things like that. 

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.

 

She liked the support group because there she could be a 'real' person and 'let her guard down'.

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She liked the support group because there she could be a 'real' person and 'let her guard down'.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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But  it is important to be able to relax and that's why I believe in self-help and support groups because if you can actually positively talk to people where you don't have to put on this big act that you're always being strong and you're, you know, 'Oh I'm jolly hockey sticks type and nothing phases you.' But when you can actually be a real person and you can let your guards down but it's very difficult. You know, I, I find it strange that for something that's so common it's so misunderstood. You know, there's all the information on web sites and things about the medical aspects but there's not an awful lot about the social model of disability and how it impinges on other aspects of, of life. 

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.

Age at interview: 78
Sex: Female
Age at diagnosis: 32
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Have you ever been to a support group?

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.

Age at interview: 40
Sex: Female
Age at diagnosis: 2
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One of my, the best things I did was actually join Arthritis Care, which I didn't join until I was quite old, in my twenties and that I would say was really good for me because it meant you could become a member of Young Arthritis Care and we actually, I actually was a founder member of a Young Arthritis Care group in this area, and I met quite a few people with arthritis that were younger and that to me was really good a really good turning point. 

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.

 

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She made friends at the support group and felt it was the best thing she did as it helped her...

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She made friends at the support group and felt it was the best thing she did as it helped her...

Age at interview: 38
Sex: Female
Age at diagnosis: 21
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It's, I remember I was just thinking, I got involved with the Arthritis Care fairly early on and, but it wasn't right for me because I was looking for somebody who was like me, I was 21 when I was diagnosed, I wasn't in my 50s, 60s, I was trying to do something with my life, you know, you're still, having relationships, you're wanting to do your career, you're wanting to be this successful career woman and you know you want it all and I couldn't meet any, I hadn't met anybody even within the hospitals where I was going who was like me. So I tried the Arthritis Care but like I say it wasn't, unfortunately they were lovely people but no it wasn't right, I went a few times and I've tried another organisation down in the southwest, but that was the same thing again, it was the elderly ones.

So then, when I came up to Yorkshire, I had been really ill for a while and I thought I've got to try something again come on, I need to get out, I was living in the middle of nowhere and lost contact with everybody I was working with and everything else, so I joined the young side and it was the best thing I did really because it really, they had an understanding of it and introduced me to a group with similar conditions, like everybody with arthritis, there's so many different fractions of it anyway.

They knew that you got tired, knew that you may not be able to go out for a drink in the evening and I think that's when I started to accept what was going on, that it was okay, that it wasn't a failure on my part to have this huge flare up going on and I wasn't able to have my career and everything else, it was just one of those things that, it was just another experience to have to go through in life and there's others that were going through it with you. 

So yeah so I joined them and they were great and ended up after a while meeting a great bunch and moved again to an area where I am now.

So I would say to somebody if their newly diagnosed and they're thinking about joining some sort of group, do it, even though it might not, this, you know, whatever group might not be right, don't put it off, just keep, you'll eventually find something, it might even be a night class, you know it might be something like that you want to get involved with or, or just don't isolate yourself away and hide away, that' a big no, get out, you know, or get somebody. Even if you want somebody to come in and, and be in your own home and, and get to know you or, we have a group and our [name of person] said if the confidence needs to be that you want somebody to come and pick you up to take you to the group because you're frightened to go in that group by yourself, that's the biggest thing is to walk into a completely new group, all by yourself, that's a big thing, so if you need to get to know somebody beforehand, to be able to hold your hand basically to go in, then try and find a way round that and do that, because that's the biggest stepping stone is getting outside your own home and having the courage to make a step towards something new yes.

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'.

Age at interview: 76
Sex: Male
Age at diagnosis: 74
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I, I'm, I've but it's good to know the amount of support that is out there. I, I went along to Arthritic Care, Arthritic research I think' it's Arthritic Care. There's ARC and there's Arthritic Care and whether its ARC' 

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...

Age at interview: 26
Sex: Female
Age at diagnosis: 22
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So it affected you emotionally?

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 benefits and help from social services').

Last reviewed August 2016.

Last updated September 2010.

 

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