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Rheumatoid Arthritis

Social life & relationships of people with rheumatoid arthritis

Rheumatoid arthritis (RA) can affect people's social lives in many ways. Physical activities may become difficult and people may have to give up participating in sports, although they could still enjoy watching them thus losing an opportunity to meet others. We talked to people who had to give up rambling, climbing, cricket, football, golf, hockey, racquet sports, skiing and aerobics. Some had found alternate ways to meet people and socialise.

 

She can't play sport, dance or go for walks, all activities she misses.

She can't play sport, dance or go for walks, all activities she misses.

Age at interview: 53
Sex: Female
Age at diagnosis: 30
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But I do remember sort of struggling to let go of the fact that I couldn't do things any more. And particularly at times like Christmas and holiday times where we would have family over and somebody would say 'Oh let's all go for a walk' or 'Let's all go down to the leisure centre and play squash or tennis or something'. And immediately I would feel this sort of catch at the back of my throat and have to go off into the loo and have a little cry because I just felt so out of it and so left out and  and people didn't realise. No-one would say 'Oh just a minute, can't do that so why don't you try and do something that we can all do?' People just didn't realise how disabled I was becoming, especially people who didn't see me very often. 

My husband used to walk a lot and now doesn't because I can't walk. There are just so many things like that. I mean I can't do any sports  so, you know, things like, I mean he, he doesn't now but he used to play squash and  ride his bike and do all those sorts of things which he gradually just stopped doing because I couldn't do any of them. So that is, you know, those things do affect not only your sort of well-being, your relationship, your social life together  but they affect, they may have had an effect on his health because he doesn't do any exercise now.  

And he doesn't do any exercise because I don't  So, you know, those, those things, you know, do have an affect. We can't dance together in the way that we used to. And actually I can, I have come to terms with not being able do all the things, because I used to ride horses and ski and  play tennis and do all these things, and I was quite good at them as well so it, it was quite hard gradually finding that I couldn't do any of those things any more. But the, the one thing that does really continue to bug me is that I can't walk. I cannot go for a walk and it's one of the most simple pleasures, especially on a lovely day, but that's, you know, one of the reasons why we got the wheelchair because I, we thought well, when we go on holiday and we go to a town or something, you want to wander round the town and look at galleries and sights and so on, the only way I can do that is in a wheelchair. Otherwise after 100 yards I'm having to sit down because I'm in agony. So that, you know, that's bugging.   

The disease can affect social interaction in many other ways. For example, one woman said that when she picked her children up from school she stayed in her car because she couldn't face the 'struggle' of getting out of it. Thus she missed chatting to other mothers at the school gate.

Going out and drinking alcohol
Socialising can often involve alcohol, which can interact with some medication and affected people's symptoms, so many chose not to drink or only in moderation. Several people said that not drinking had altered their social life and relaxation time. Young people found it particularly difficult to adjust to not drinking alcohol. One 25 year old woman explained that 'when you are young drinking alcohol is something you do when you go out with your friends' (also see our section on young people's experiences of long-term conditions).

 

Her doctor advised her to stop drinking alcohol, but this affected her social life.

Her doctor advised her to stop drinking alcohol, but this affected her social life.

Age at interview: 40
Sex: Female
Age at diagnosis: 2
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I've had to go back onto the steroids, which I am quite disappointed with and also another stronger drug as well, where they have to monitor my liver, which has stopped me drinking alcohol, which is a damn because I love alcohol so.

Well I did cheat on Saturday night and I was ill all of Sunday. So it does make you, that is probably one of the side-effects is it can make you vomit, which it does, so.

Have you talked to your doctor about an alternative that you can drink alcohol with?

I have done that and she said that the drug that I am taking is the strongest and most effective for the flare ups that I've been having so I've tried that, yes. But I've sort of done, sort of like a lot of psychological, thoughts to myself, like I've been thinking, looking at alcohol and thinking 'do you want that, or do you want to be well?' So I've sort of, sort of looked at it and said, don't, thought I'm not going to let that little bottle of fluid keep you from being well, so I do a lot of that to myself, but every now and then I do think, 'Oh God this is hard' and it has actually altered my social life quite a bit because I try and do other things which doesn't involve going to pubs, because it's very difficult to go to a pub and sit there with all your friends, that you've been drinking with all of your, most of your adult life, watch them all have a few drinks and you can't, you've got to sip water, or drink coffee. And I have found that quite hard, but I tend to take my car and that stops me, if I haven't got my car I do find it difficult to resist, and I have found I'm best having none than just two.

Does two make you sick or?

Yeah but I don't stop at two.

People who were recently diagnosed  described an adjustment period which involved changes to their everyday lives and routines including socialising and leisure activities. One young woman for instance said that nowadays instead of going out to a bar she tends to go out to dinner. Another said that going out to a club has been replaced by cinema outings. They commented on their need to plan and organise their activities in advance. 

 

Talks about the changes she has made to her social life following her diagnosis and the advice...

Talks about the changes she has made to her social life following her diagnosis and the advice...

Age at interview: 25
Sex: Female
Age at diagnosis: 25
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Well I do drink alcohol which you're not meant to do. I don't drink in excess, and I would only ever drink maybe once a week if that, but it's changing those routines, it's just changing, and changing with your friend as well because I'm sure most people, 25 years old and when you meet up with your friends it's always for a glass of wine or a cocktail or something. And changing those routines I found, the first three months I was really strict and I didn't have any at all, anything at all and I wasn't feeling well so you didn't really have to go out or anything. But now that I'm feeling much better and I meet up with my friends I do want to be able to have a drink and I do. Now, I just think I'm not going to worry about it. And the blood tests seem to still be fine so [laughs] But just not to excess, I think it's just everything in moderation.

So, weekends, I normally have quite busy weekends. Although I have like one busy weekend, one quiet, one busy, one quiet. Because I know, but I'm 25 years old now, and I'm young, I want to be out enjoying myself. And I don't think just because you've got RA you have to be, you have to be sensible and you have to make sure that you don't over-tire yourself because you, I don't' want to get ill with anything else as well. But you still want to make sure that you're going out and seeing your friends and doing things, that's real important. So I do.

And what have the doctor, nurses say to you about drinking alcohol?

Just that you shouldn't, well first of all they said you shouldn't drink it at all on the Methotrexate. And then so I didn't, and then I went to see, when I saw the consultant again last time I said, 'Oh I'm finding it quite difficult.' And he said, 'You can have, as long as you don't go out binge drinking, then you're OK to have a few drinks. That's absolutely fine.' And then that was it really. But like all the books again kind of really scaremonger. You're thinking, 'Can't, you know, you mustn't even have a drop'. It makes it sound like I'm alcoholic. I'm not at all [laughs]. But it's just, you know, you understand, you're' 

Yes'

'it's, it's a big part of our society 

I think if I'd of suddenly woken up and I had to do that it would have been difficult. But before I was diagnosed I was in so much pain that just naturally I started pacing myself completely. I didn't work myself into the ground, I really cut back on my hours at work, I really cut back on socialising or things like housework or cooking. I very much relied on my housemate to do things for me. So it was kind of easy then to, to get into that. It's, what's difficult is if you do have a busy weekend or you have a really busy week at work you do just feel, you know, completely bowled over which you wouldn't feel, which I didn't' feel sort of a year ago, I was absolutely fine if I had a busy week at work. I could then go and have a really busy weekend, whereas now you can't. And so, I guess parts of that are difficult but again because I was just kind of weaved into it, it wasn't too bad.

You can't just think at the spare of the moment, you're going to do something. You really have to organise it. I mean I want to go skiing at Easter. Well we were going to go in February, I thought. 'Oh no it'll be too cold for me sitting on the ski lift and things like that.' So you think, 'Right, we'll go at Easter.' And it's just making those adjust, making those adjustments. And we have to go somewhere that's got other things because I won't be able to manage skiing all day, every day. You know, there's just, there's loads of examples that are just small.

Others said that they turned down invitations to go out at night because they didn't have the energy. A 28 year old woman sometimes stayed indoors for months, without going out, recuperating from operations. One person knew that his immune system might be weak, so tended to avoid parties or other gatherings. 

People with well controlled RA think that their condition is not the only factor that determines their social life. They made the point that of course they feel more tired than others their own age but at the same time they have busy lives working or caring for young children. They stressed the need to rest and pace themselves. One young mother said that in comparison to other women with young families, she has learnt to prioritise looking after herself.

 

Tara thinks that having a young family restricts one's social life anyway. She has learnt the...

Tara thinks that having a young family restricts one's social life anyway. She has learnt the...

Age at interview: 37
Sex: Female
Age at diagnosis: 30
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I definitely rest once a day. At the moment when my daughter goes for a sleep that is it. I think well I should be doing this and I should be doing this. But do you know what? I am not going to. Because I find if I don't have a rest in the day. I come to about six o'clock in the evening and I just want to lie on the floor. I am so tired. So it is just a way of managing it. And it works. You know, that is what I probably find quite hard about being at work. Eight hours on my feet and I come home and I have to sort the children out. That is quite hard. But it is only a couple of days a week. 

But what other limitations? There is not so many actually. I think most of it is probably the fact that I have rheumatoid but I also have two children. Yes, that is probably a bigger limitation. No I don't think so. I don't think it stops me from doing things. I suppose thinking of how I am now. I can do anything. I suppose there are limitations when I have my flare ups. Of which I have had two really bad ones. I mean well I can't do anything. But that was because my disease wasn't being managed. Well now it is. So I don't think I do have any limitations.

It would be interesting. You could probably ask my husband actually he might be able to find a few more. But no I think where I think oh that is not fair if only I didn't have rheumatoid I would be able to do this or this or this. I sometimes think I would like to work a bit, you know, have an extra day at work. But I think I would be too tired. So perhaps that is probably the only limitation. On the whole it is quite positive really. Yes.

Do you need to sort of learn to discipline yourself by going to bed early and having plenty of rest?

Yes. And that has probably become a way of life. Things you don't really think about. I don't do late nights. I don't do late nights because I have got a two year old that is going to get me up. Or my husband. So yes, we are probably both quite disciplined by that. But I think it is probably more the fact that we have got children rather than' I don't cope very well with tiredness. I get quite grouchy. If you probably asked my eldest daughter. She would agree. I do get quite ratty. So yes, we don't do large amounts of late nights. Probably we can't get baby sitters more than anything.

Do you think that you get more tired than people your own age with small children? 

In some way I think I do. But then in many ways I think I manage it so well that sometimes I look at people think hmm well you could probably do with sitting down for an hour or two rather than running yourself ragged, which I think especially women with small children do' And a job. They feel they have to do everything. So I am quite good at leaving things.

So you have developed this attitude then?

I think it is that attitude of actually I am the priority. My well being is a priority so if sitting down is part of it then I will do it. So I think, sometimes I look around and think oh I wish I could do this, I wish I could have a bit more energy to do this, but then I look around at other women and think I have got more energy than you have, so I think it does depend. But on the whole I think I do very well, but as I say the resting is a priority.
 

He belongs to the Ramblers' Association and his doctor says he can still walk as long as he doesn...

He belongs to the Ramblers' Association and his doctor says he can still walk as long as he doesn...

Age at interview: 70
Sex: Male
Age at diagnosis: 70
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But I mean, the main thing is that  I'm not too bad at the moment and it's under control. As regards affecting my life it hasn't affected me that much because I've persevered, you know. I've wanted to do things. I do a lot of walking, and I still do a lot of walking  and I asked him today about this as a matter of fact. I said, 'If I wanted to do continue with walking, you know, country walks and that sort of thing'. He says, 'No, there's no problem' he says, 'with that really'. He says, 'As long as you don't sort of overdo it'. So, I think the more active you are or you can be, you know, the better it is for you rather than sit down and wait for the pain to go away I feel that you should try and sort of  meet it a little bit, you know, fight it, you know.

And is it painful now when you walk?

No, not, no it isn't, not at the moment but I, I get times where, whereas I could sort of be walking along and think, 'Phew, I feel as if I've walked about 9 or 10 miles', you know, my legs are aching. And other times they're as right as rain.

And how far have you walked?

Well I walk, I have walked, because I belong to the Ramblers' Association, I've walked up to 10 miles. You know. But I don't do the long walks so much now. You know. I did a bit of walking in the Lake District because it's up in the fells, you know, and I was OK. It ached a bit afterwards but no it wasn't bad. It's OK. 

 

Still enjoys dancing in clubs but her feet hurt afterwards.

Still enjoys dancing in clubs but her feet hurt afterwards.

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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Because I like dancing and, you know, [laughs] just jigging down the club with my friends I find that I, I have to prepare for it beforehand. You know, I know that I'm going to be out to the early hours of the morning  so therefore I shouldn't perhaps do so much during the day. 

You know, if I go out at the weekend I know that I, that I have certain things as a mother I do anyway. I do, you know, you know, normal things like housework, you know, laundry, all that. But I do try to, if I know I'm going out I try to spread it all out rather than doing it all at the, so I think there's always, always a little bit of thing and I just, just, I love dancing and I've, it has, it, it's affected it. 

Yeah, I get, I can't dance as long as I, I, I did. You know, I'd like get up on the dance floor and have a really good boogie. You know, you like, you, you, you dance to one record and the next one comes on and you think, 'Well do I like that one? Yeah, I like that one, I'll carry on dancing.' But perhaps you wouldn't, you know your limit, kind of thing. So, and I don't go and sit down, can't do that. 

That's just, not something I do. So, yeah, I, it's just, just the little, like the stupid things like dancing. I don't dance for as long. I still dance stupid and I still dance, you know, but I don't, I, I don't overdo it. I do find that at the end of the night my feet are killing me. That's, that's the only, that actually, yeah, saying that, that's probably the worst thing about it.

Because it's in my, you know, it's in my feet and I like to wear high, I really like to look good when you go out, you know, but I'm getting to the stage now that I have to think, 'Well you either look good or you look comfortable and good.' So I'm now veering towards the comfortable [laughs]. Rather than the looking good [laughs]. So  I wouldn't necessarily go and get my 4 inch heels out, you know, kind of thing. 'Cos I know that I'm not going to be, I'm just not going to be able to stay on my feet. 

One woman joined 'Horse Riding for the disabled', which she enjoyed, despite the pain it caused. Another woman continued 10 pin bowling but had to use the lightest ball. Someone else said that she could still sail, but only as a member of the crew. Mobility problems often restricted shopping and sightseeing on days out. One woman helped run a branch of L'Arche UK, for people with different disabilities, including wheelchair users, so that all their social events were accessible.

Many younger people were keen on travelling. One 25 years old woman has already travelled in Asia and is busy organising her one year stay in France.  She was initially concerned about healthcare but  went to a Social Security office in France and also made an appointment to see a doctor and get some medical advice (also see our section on young people's experiences of long-term conditions).

 

She will either teach English or study at university in France. Says that her big concern was...

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She will either teach English or study at university in France. Says that her big concern was...

Age at interview: 25
Sex: Female
Age at diagnosis: 13
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You're going to France, you said you're going to live there?

Yes.

What are you going to do there?

Well, one of two things. I'll either be a language assistant, so assisting with teaching English in schools, which is a scheme through the British Council, or I'll do a diploma in French studies at a university.

So where are you going?

Toulouse.

Toulouse? Oh, nice weather.

Yes, yes, very nice. That's what I found, I went there for a month in August to do a French course and I absolutely loved it. I could cycle everywhere.

You were cycling?

It was great. Yes, yes. Because it was hot as well, it was lovely. I just felt, I just felt like a different person because I just, could just go round on this bike and it, it was just lovely, really nice.

And what about the pain? Was it the same?

It wasn't as bad [laugh].

No?

No.

So maybe you need -

Hot weather

Hot weather.

I'm a bit concerned about healthcare and all that kind of thing down there, and worried about funding. Will I get my medication? So while I was over there I went to see Social Security and they were telling me how it all works, how I transfer my Social Security. I went to see a French GP just to get some advice, because the way it works over there, sorry, this isn't too relevant.

Normally a British citizen, if they get medical treatment in a European country, another European country, they have to pay most of the health costs there and then, and then they can apply for a reimbursement from their home government and get 75, up to 75 per cent back. And then the other 25 per cent they have to cover themselves. So either they, they pay for it or claim it through medical insurance. But still if I did that, I think Humira costs around '12,000 a year, so I'd be paying '3,000 a year. And no insurance company would cover that. I know that because I've done the research. But if you've got a, an acute illness, if you've got quite a serious disease, then the French health system will, will pay 100 per cent for you if you're from within the EU. And that's why I went to see the GP, just to see if he thought that my illness was the kind of illness where you could get the 100 per cent free healthcare. And he said, 'Yes, just come back and see me and, and we can kind of sign you off as, as free. So' [laugh].

Travelling abroad with anti-TNF medication requires some planning ahead; in particular to make sure that there will be a fridge to store the medication for the duration of the holiday. Also, and because patients will be travelling with pre-filled syringes, they need to take with them a letter from their doctor explaining their medication.

 

Sandra is on Cimzia and explains what she has to do when travelling abroad.

Sandra is on Cimzia and explains what she has to do when travelling abroad.

Age at interview: 51
Sex: Female
Age at diagnosis: 51
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Any issue about being on this new treatment that I haven’t covered?
 
Travelling with it. Cimzia has to be kept in the fridge and obviously it’s a pre-filled syringe so if you want to travel abroad you do have to get a letter from your doctor saying that you’re carrying it. You have to carry it in a little cool bag and you have to make sure that when you get to wherever you’re travelling to there’s going to be a fridge where you can store it. Because it’s, you give it once a fortnight you have to work out what, where will you next injection fall regarding to your holiday if you’re, if you’re travelling so there are, there are, you do have to think about that. I’m fortunate that at the moment, I’ve only travelled to a friend’s villa so I know there’s a fridge there but of course if you were going to a hotel, you might need to have to think, “Well, will there be a fridge in your room or will there be somewhere in the hotel where you can store it?” So that could cause some problems. I’ve not had any problem getting through the airport with it at all, going through security.
 
Do you travel with a letter?
 
I travel with a letter from a GP yeah, so. It’s something else to think about and that’s why obviously if you’re going on holiday for a while, you’re bound to have to take one with you. If you’re going for a two week holiday it’s going to fall, sometime you’re going to have to give it. But by the fact it’s only every other week, if it’s easier then sometimes you can arrange these things for the week when you haven’t got to have an injection and that was my reason for doing it in the middle of the week when I thought I’m most likely to be at home than weekends when I might want to go and visit friends and things and if it fell on a weekend when you’ve got to have your injection, it’s just more hassle really to have to organise it and take it with you.

 

Leisure activities at home included various types of needlework, playing instruments and using a computer to surf the Internet, play games and communicate with friends. One woman joined an art club in the village hall. Others found they could still cook quite easily, so entertained at home. Visits to theatres, cinemas etc. were still enjoyed where venues were accessible.

 

Once a week she goes to a craft club and she loves it. She has made new friends and says that it...

Once a week she goes to a craft club and she loves it. She has made new friends and says that it...

Age at interview: 40
Sex: Female
Age at diagnosis: 38
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Some days you just feel like not getting out of bed and not doing anything, and it's got to me and I can't do anything about it, but then other days I wake up and you're in as much pain and you think, 'No, I'm not going to let it get to me today.' I go to an, an afternoon group on a Tuesday afternoon with a lot of people that have got problems elsewhere, and we do craft things. I, actually, make my own cards as well, so I go, I go just for two hours on a Tuesday afternoon. Just gives my husband a break from me, and me a break from him, really, for two hours. And it's, I, do, I must admit, I do enjoy it. He doesn't because he decides to do the shop, weekly shopping then [laughs] so, the poor man doesn't get much of a break [laughs]. 

But I, there's not much else I can do, I've looked into hobbies and things I could do, and it's, it's difficult when it's your neck and your hands. I can't actually straighten my arms properly at my elbows. And that went a couple of years ago, so it's very difficult to do things. 

They're all like-minded people, they're brilliant. Most of them, most of them are women.

And we have a good laugh. Basically, we're, sort of, card making, doing, doing craft things basically.

Okay.

And I really look forward to it, but in the school holidays it isn't on and I must admit, when it isn't on, I do miss them. I miss not going out for those two hours.

And who runs this group? The council? Is it a voluntary organisation?

It's NHS.

Yeah. They are, I mean they're, there's one woman that runs it and another lady that helps and they, they are really good. And they always keep people really happy. Though, it's funny because they, everybody make a fuss of everybody's birthdays as well, you know, if it's your birthday, you bring in a cake and it's nice, just before Christmas we had, sort of, mince pies and, [laughs] and birthday cake, sorry, right. No, but they are nice people, and I really do enjoy it.

Everybody, everybody if, even if you are ill, you do miss is as well, if you don't go for a week. Feel like, 'Oh no, I really want to be there.'

And I have made quite a few friends as well from it, which is good.

And how did you got to know about this group?

It was through my doctor's surgery. Because they're, actually, are in the same town where I live, so. But, I mean, I only go once a week anyway, it's only, sort of, on Tuesday afternoon and that's it. We do all sorts of things throughout the year. 

In fact, in the next couple of weeks they're getting me to teach somebody else to, a group of them how to do something, different cards that they all want to learn how to make, so they've roped me in to doing it instead [laughs]. How it'll turn out, I don't know [laughs].

So attending this group helps?

Yes, it does. Yeah, it does. And it is worth, if, if you are very down or very low and you are at home most of the time, it is worth going to your GP and talking to them about it. I did have counselling, to start with, and that didn't really work, so my GP said, 'Well, perhaps something else will.' So, he made a few phone calls and, and that was two years ago nearly, yeah, I've been going there nearly two years now. It is worth talking to your GP if you're really not coping, mentally.

Social and Family Relationships
Rheumatoid arthritis can at times put a strain on social relationships. Pain and loss of independence can make people feel frustrated, angry, and depressed, which can in turn affect other members of the family.

 

Pain can make him depressed and 'grumpy' at times, which can affect relationships with other people.

Pain can make him depressed and 'grumpy' at times, which can affect relationships with other people.

Age at interview: 42
Sex: Male
Age at diagnosis: 17
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It certainly can affect the relationship at times when certainly at times you do feel in pain, and you do become grumpy and you do tend to upset people by your behaviour and the things that you say at times purely because of the way that you're feeling, likewise at times certainly not now, but certainly in the process of it all, sort of coming out with the arthritis, there have been times when you've really sort of felt at a loss as to what to do, none of the treatments seem to be working, you can't find that happy medium and you're going round and round in sort of circles and yeah, you do tend to get very, very low and it obviously does have a knock on effect to your partner and the children, too. 

Obviously you do take your anger and your pain out on other people unfortunately at times, but as I say, as luck would have it now we've seemed to have found sort of a medication for me that works and so really that's not too much of a problem. And I know you do at times, you know, you do get that, that time when things are sort of hurting and there's pressures to do things and you tend to snap perhaps and it is really to do with the, the arthritis more than anything else, perhaps in a way. But they tend to realise that as well and do give you a little bit of slack with it all but  yeah it is a problem at times to be fair. 

Family members may find it difficult to cope with changing roles. Most people we interviewed said that their partners had been very supportive; that they willingly helped with domestic chores and took on caring roles (see 'Sources of support'). However, a few said their partners hadn't offered enough physical and emotional support and that they had been less understanding. One woman said it helped to educate family members about the disease. A recently diagnosed woman says that RA can affect relationships. In her experience, she feels that her husband has become more understanding and involved after he accompanied her to a hospital appointment.

 

She says that RA can affect relationships because it is difficult for others to 'see' how the...

She says that RA can affect relationships because it is difficult for others to 'see' how the...

Age at interview: 41
Sex: Female
Age at diagnosis: 40
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Nobody actually realises just how bad it can get. I eventually took my husband along to one of my appointments to prove just how bad it was and, and they actually helped, by explaining the disease more to him, so he actually knew how it affected me. 

And I think he's a little bit more understanding now, but at first, he didn't come to any of the appointments or any of the, the, the doctor's surgeries or, I went to day surgery and saw a physiotherapist etc., but he didn't come to any of that to start off with, and I think him coming has actually helped him understand what I go through each day so.

So, I mean, it is a condition that does affect relationships?

Yes, definitely, definitely. And also [laughs] the, the sort of sexual side of a relationship, although it doesn't affect me that much, with the sexual side of it, it's more the emotional, how you're feeling, how run down you're feeling. How, sometimes, you just want a cuddle, and you just don't want to know anybody, you just, you know, it's, it's, it's very difficult, sort of, trying to explain how you're feeling. When the other person thinks, you know, you're pushing them away sometimes it's just because you just feel so ropey, so grotty, that you just, you know' Don't want to know.

How, are you able to, to talk to him, to your husband? Communicate?

Yes we're very lucky we've got a sort of relationship that we can actually talk about a lot of things, so we do a lot of talking so, yes, but it did help for him to go to the hospital and realise just what it entails of, of what I go through and I'm, you know, how bad it can get. Or it could, you know, could get in the future etc. etc. 

So he's now fully aware of exactly what's going on. Whereas I think it was quite easy for him to turn a blind eye before and just you know, expect me to do everything the same as I always did before so.

Yeah. I mean, he did come to the last appointment as well, for the injections, for the self-injection, sort of, training because she said, 'Oh, bring somebody along if you want for moral support.' 

But it meant, also, that he could ask a few more questions that he's been wanting to ask, and he came out with a few questions, without being asked, you know, 'What do you think of this, that and the other?' He actually came out and said, 'So, she does this and.' I actually felt like he was, actually, getting involved, for a change, and I thought it was a good move that he came with me. Really was. Because he knows now what I have to do, and what I have to cope with. And he knows again, that if he needs to ask any questions that he could always go with me for any appointment. 

The partner?

Yeah. They, they don't know exactly what's going on with you. All they can see is, maybe, grumpiness, tiredness, miserableness, you know. Saying that you're in pain, but not actually feeling or seeing it, something totally different.

I mean, some partners can be very understanding, some of them just, you know, just don't understand at all. But I would suggest, when you can, to take somebody with you to the appointment.

So they also understand what everything entails, what's going on, what treatments entail, you know. How the treatments are going to affect you, what's going to happen. Because, it's all very well, I took home leaflets and information and told him when I got home, but I think it's better to hear it from a nurse or a doctor, than from me.

One woman had heard that RA could 'wreck' marriages. However, she said that as her arthritis had developed over the years her husband had become a much more caring person. Another woman said that although her first husband had left her, partly due to her arthritis, her second husband offered constant support.

One man found that his arthritis and associated depression put extra strain on his wife and, although she was very supportive, it eventually led to their separation.
 
A 28 year old woman was adamant that her RA had affected relationships within the family. She was concerned about her parents, and concluded that RA had made life 'immeasurably difficult'.

 

Rheumatoid arthritis has affected family relationships, and made life 'immeasurably' difficult.

Rheumatoid arthritis has affected family relationships, and made life 'immeasurably' difficult.

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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But no, it's probably been one of, aside from the illness itself and the pain and the stiffness and whatever, probably been one of the worst things I think about having, being disabled is not having to be dependent on whoever, whether it be on the state, asking faceless bureaucrats for money or whether it be on your parents, whether it be people that you love, having to see them as I have had to, you know, running themselves literally into the ground to look after you, when they should be, you know I'm nearly 30 years old, they should be putting their feet up and enjoying the last, you know, not the last, the next few years of their life [laughs]. Oh God, don't show my mother that. 

But you know they've had to, they've had to take care of me and it's put an awful, it's not really, it's a group thing, this illness. It's not, as a lot of disabilities are, it's something that has affected all of our lives and all of our relationships inevitably in, in huge ways. It's been immeasurably difficult. 

Young people and relationships
A woman who had RA when she was 21 recalled how one young man had left her when she became ill because he couldn't 'handle' her disability. This made her wary of starting new relationships. On the other hand, a 27 year old woman met her partner of the last five years after she was diagnosed with RA. Another woman recalled her youth, and described how men had rejected her. At the time she had felt that with arthritis she would never find a boy friend. People also chose friends carefully to avoid being hurt and said it took time to become close to others. Another girl says that friends or boyfriends do understand her limits but 'up to a certain degree' and hopes to meet someone who will be able to deal with the limitations that result from her condition (also see our section on young people's experiences of long-term conditions).

 

When she was very ill she felt unattractive, guilty and 'a burden'. Telling her partner how she...

When she was very ill she felt unattractive, guilty and 'a burden'. Telling her partner how she...

Age at interview: 26
Sex: Female
Age at diagnosis: 22
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Yeah I mean it affects, I think because you, I think sometimes you feel a bit guilty because you think that you're sort of pulling someone else back because I can do as much as someone else might do, and my partner's quite active and quite sporty and I can't, I mean I do join, we go for bike rides and things but, I join him but I can't do as much as him so sometimes that do you feel that perhaps if he was with someone who didn't have rheumatoid arthritis that maybe he could enjoy life a bit better but I'm sure that's [laughs] not the case but you, it does enter your head, you know, you can't sort of say that, that it wouldn't but that's the main thing that you feel is perhaps that you're a bit of a burden, you know what I mean? And because you, you can't do as much as, as a healthy person might, and, you know, it, at the end of the day you feel, well I felt when, when I was really poorly I just felt like, unattractive and, and, and, you know, you do, even though [sighs] you're thinking it and they're not you do think it you think 'oh I feel unattractive and how can they possibly want me because I'm in this situation?' so that's, that's the main thing is you, you, you feel a bit of a, a burden and a bit on, that no-one would want you sort of thing.

So your self esteem was low?

Yeah, you do, it does make you feel low.

And does it has that effect also on sort of the, the intimate side of a relationship you understand?

Yeah you're not gonna, like jump into bed with each other [laughs] if you feel rubbish [laughs] so [laughs], yeah it does, it does affect that, but then, you know, when you are feeling better you just, you just take advantage of that [laughs] don't you? [Laughs] so.

Yeah.

Yeah it does but, it, it's never been, it's never been a point of, we don't sort of, I don't think it affect it, I think he realises that and it's never really sort of bothered both of us, in that sense but I think you just, you just take advantage of when you are feeling better [laughs].

[Laughs] and it, it was something you were able to talk and communicate and discuss these, these things?

Yeah I mean [clears throat] well you two, if you don't talk about it because obviously, someone else doesn't know how you feel and if you don't tell them then they're not gonna know how you feel so, if you, you know, you have to tell people or you tell your partner, 'I'm feeling a bit rubbish.' It, because if you don't, then, they, you can't expect them to understand so you need, you need to tell them how you're feeling and if you're feeling a bit lousy or, what, and you need to tell them when you're feeling well as well because, you know, then they can sort of know where you are with sort of going out or, doing other stuff.

 

In her experience boyfriends and friends do understand but up to a point. She would like to think...

In her experience boyfriends and friends do understand but up to a point. She would like to think...

Age at interview: 22
Sex: Female
Age at diagnosis: 11
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I didn't really have friends come to see me. When I was at school, even now people don't have an understanding particularly of it, it's quite annoying that you'll say to someone, 'Oh, I have arthritis.' And you're, the immediate response you get every time is, 'Oh. Isn't that what old people get?' It's the first thing you get told. 

They do understand, I mean, I've had a couple of relationships where but they do understand to a degree, but then, I suppose, some people do get a bit, you keep turning round and saying, 'Oh, I won't be out tonight. I can't do this or I can't do that.' They do get fed up with it and that's why past relationships haven't worked.

As for friends, I never really had friends come to the house. Partly because of where we live, we live in a village, and it, you know, the transport issue and things, but, I don't think people quite understand, you know, if you say, 'Oh, my leg's swollen.' They think, 'Oh yeah. And your leg's swollen.' You know, they don't quite fully understand it. 

I have to learn to maybe take it from somebody else's point of view. I've had eleven years to get used to it and, used to the idea, and I know how to deal with it, so I try to have the understanding that it must be very difficult for someone to get to grips with it and understand limits, what I can and can't do. Just general day to day, how I feel. And, it is a worry, and, at the same time, I don't, it worries me that my condition could drag someone else down. 

You know, but I suppose there are people out there, no, they do learn to deal with it, or maybe they know someone before that's had it or got it. So I'd like to think there is anyway [laughs].

A woman, nevertheless, whose RA was diagnosed at the age of nine, suggested that because she had developed the disease before she was a teenager her friends readily accepted it. Her boyfriend was supportive and didn't mind pushing her wheelchair. When she met new people she usually mentioned that she had RA. In general she felt relationships were very good. She went out with her friends and said she had fun despite not being able to partake physically, because they were having fun.
 
Sexual Relationships
Although some people said that sex had not been affected by RA, others said that sex was difficult or even impossible. One man explained that RA had affected his marriage and his sex life because after work he had to go to bed by 9pm to rest. However, a 45 year old woman said that by being 'creative' it was possible to have a good sex life. She said that it was very important to discuss sex with your partner. One partner said that, due to his fiancé's pain, they had stopped for a while which was frustrating for them both. Pearl was advised by her nurse to take a couple of Panadols before sex.

 

She thinks that she couldn't have a sexual relationship and thinks that RA 'killed' that part of...

She thinks that she couldn't have a sexual relationship and thinks that RA 'killed' that part of...

Age at interview: 52
Sex: Female
Age at diagnosis: 47
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Because it has I don't think I could actually have, I couldn't have a sexual relationship now, I know I couldn't, I just know I couldn't. I think it's killed that part of me I don't know why I just, I just don't know, I've never questioned myself about it, at the moment I haven't anyway, because I really haven't had the need to you know so I don't sort of think about it that much. 

No, no I couldn't even think about it at the moment and perhaps I should but I don't think about it at all, at all. Maybe I'm being a bit selfish and self absorbed about it but no I don't know whether it's, I don't know whether I lost all that when I got this I don't know, I've never thought about it I've never ever thought about it, it's something that does not even come into my life, at all, strange as that may seem,  no, you've probably just reminded me of something [laughs] something that I don't think about, really don't.

Has it affected sort of relationships with friends or?

No, no at first it did, because it was very strange for them you see. Because as I said to you I was very independent and a very strong person and it made me very weak  but  they say to me and I know they say it to me all the time how brave I am and how sort of, how do you cope with this you know,  we just don't know how you do, but you do you do it very well. I mean I, I am sometimes in so much pain and I won't speak about it. I won't say you know I'm in pain I just think 'oh you know I'll just see how far I can go' you know or you know I'll go and lie down or something. But I would never say you know, I'd not, not very often I say.

 

Rheumatoid arthritis affected his marriage because he had to spend so much time resting.

Rheumatoid arthritis affected his marriage because he had to spend so much time resting.

Age at interview: 55
Sex: Male
Age at diagnosis: 47
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It's had an affect on my marriage in that in the early part of it, my wife had to do a lot of looking after of me and during the operation I had a lot of rec, five weeks of recuperation at home where I couldn't even get out of bed and obviously affected my sex life as well in terms of most nights I need to go to bed at nine o'clock and most people don't go to bed at nine every night you know, I just have to, especially when I'm on day shifts, all I can do is go to bed, get up and go to work, come back again and go to bed, so the only real life I have is when I'm on my days off from work, when I'm free to, to do the sort of things that I'm interested in.

 

She suggests it is important to talk about sex, to be 'creative', to use humour and to have an...

She suggests it is important to talk about sex, to be 'creative', to use humour and to have an...

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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Yeah, well I can just say it hasn't really  because at the end of the day, it's about talking and it's about, it's not just about my needs, it's about my partner's needs and finding middle ground and talking about it. So, no from, the only thing which like I say, is a bit of a joke sex and arthritis, you know, if your muscles are tight or whatever, you might not feel like walking afterwards but it it's a standing joke, that is about it really, you know.

But I would actually say one thing is while people do feel that they can't talk about it and if you, you're the person with arthritis, you feel that your partner doesn't find you attractive any more because they're backing off and all the rest and the person that doesn't have it thinks, 'Well, if I touch her, she's in pain', and all the rest. So that's why I think it's very important to talk about it. But I think if you, if you can use humour and you can be open and honest, then you just if anything it makes you more creative for the want of a better way of putting it really.

And I, I you know there's over nine million people with arthritis in this country and I always say this when I get asked this, I don't believe that there all celibate for one minute. It shouldn't breakdown relationships. Some people hide behind it and say my relationship broke down because of ' but I don't believe that. I think it can spoil a good relationship if you let it  but it takes two to make that work.

 

His partner's pain had interrupted their sex life, which was frustrating for both of them.

His partner's pain had interrupted their sex life, which was frustrating for both of them.

Age at interview: 31
Sex: Male
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It must have affected your sex life as well? I mean, how, how do you cope with that?

Yeah, well I mean obviously you, things like sport, and things like that are out of the question, so that would be as well. You, yeah, you tend to really sort of go back to you know when you first meet and start, and it's almost like starting again really [laughing], it did, I mean it obviously, it had to put a stop on it for a while because she was in so much pain, you just, you just get, it's, it's strange really because when you do come out of the other side and she starts getting a bit better she did find she was shy again starting from scratch because, you, it's been so long, you know, in that situation, that you do find, it's quite new when you go through it that, that was hard but that, that was hard for both of us, so it was an equal thing really.

I mean we do, we do chat about that but because it was something we're both probably a bit frustrated about it, because you knew the other person was as well you just, get, each of you going through it  but yeah, I think going back like I said, I mean, [plates clattering] if you're, for me, I mean, the first thing I wanted was for her to get better and then obviously that would have a, an impact on that so, it gives you an extra drive to really sort of you know, obviously get something sorted on that, yeah.

Several of the younger respondents said that their sexual life has been only temporarily affected during those times when they were experiencing a flare up, when ill but before diagnosis, after surgery or when a particular medication was not controlling their RA. One woman in her 20's said 'when you feel rubbish you are not going to jump into bed with your partner, but you make up for it when you feel better'  One young mother said that sex life can also be affected by other factors apart from rheumatoid arthritis - such as having small children (also see our section on young people's experiences of long-term conditions).

 

At the hospital they emphasised the importance of contraception when on methotrexate to which...

At the hospital they emphasised the importance of contraception when on methotrexate to which...

Age at interview: 37
Sex: Female
Age at diagnosis: 30
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God I can tell you, people, I remember them saying to me when I was on Methotrexate, 'It is really, really important that you know you talk about, you know, you have contraception.' I say, 'The best contraceptive we have are children, shift work and rheumatoid arthritis.' Because that is the ultimate contraceptive. Obviously when you are in a flare up the last thing you can think about is intimate relationship I mean if it is like anything, if you broke your leg it wouldn't be the first thing on your mind, and sometimes it is not just the pain, it is the tiredness. It is probably better to be awake during it isn't it, really? [laughs] So obviously when you are in flare then no chance but otherwise I think, you know, everything is pretty hunky dory. It is like anything, if you have a chronic condition that causes tiredness and pain, then unless those two things are managed there is no way you are going think about having a sex life really. I know that sounds a bit draconian but you are not are you?

I know I think my husband was hoping that I would say, 'Well go off and get yourself a mistress.' 

And on top of that you have two kids also?

I can't see that ours would be any different from anyone else with small children to tell you the truth, but I think, yes, again, perhaps that is something different with being a young person with rheumatoid and an older person, you know. 

Obviously and it is something they do talk to you about, or they do mention it to you. At the hospital, and it is like in a cough, cough way, because you can't conceive when you are on Methotrexate. You know, it is really important. And they do ask you what contraception do you use and that is why I said [laughs] joking aren't you? 

So yes, I mean you can, you can have a fulfilling sex life. As long as you are managed, you know, because if you are in pain and you are tired, it is last thing on your mind isn't it? But yes. There is probably as much as I can say about that really. 

 

Her sex life with her boyfriend was difficult for some weeks after a hip operation. Otherwise she...

Her sex life with her boyfriend was difficult for some weeks after a hip operation. Otherwise she...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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Obviously when I had my hip replaced I had to lay off of the physical side of the relationship for at least 6 weeks which [Laughs] I think maybe for my boyfriend was a bit annoying but for me I, I wasn't too bothered. I wasn't really feeling like it at the time. But apart from that it's, it's not really been a problem. Obviously some things I can do, some things I can't. We're not all gymnasts so but like I say, that's, I don't think that necessarily just applies to people with arthritis. And I do feel that sometimes you're just not in the mood for anything like that. But again I think that's normal anyway. And I think I'm lucky that my boyfriend's so understanding about those things. He understands that I'm very sensitive and I, I can't be roughed around too much and he understands that if I'm in a lot of pain then I'm in a lot of pain and all I want to do really is just sort of lay around and watch TV and that kind of thing. So it's not been a problem at all, I wouldn't say. 

Maybe you'd have to ask him about it as well. But no he's never complained of anything and neither have I so I would say that's all fine. Yeah, like I said before, the only thing was just before my hip was done again that was just like, it was quite similar to just after. It was very difficult to do anything like that because it was quite painful but on a normal day everything's fine. So I wouldn't complain about it at all.

One woman, when she was younger, had found a really useful book called 'Lovemaking and Arthritis for younger people'. Others said that it was a pity that consultants and other health care professionals didn't talk raise the issue of RA and about sex.

 

Pearl thinks that the issue of sex after being diagnosed with RA can affect relationships and...

Pearl thinks that the issue of sex after being diagnosed with RA can affect relationships and...

Age at interview: 60
Sex: Female
Age at diagnosis: 40
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I think they should know that it does affect you socially and it does affect you mentally. You know, you do get depressed. It’s not just a pain. I think there’s those options to it. I don’t think a lot of doctors realise that it affects your life. It does affect your life. It’s not just you’ve got a sore leg or arm it does affect the whole of your life and relationships with your family and such, even with your husband, you know.
 
In which ways?
 
You know, do you know what I mean without. You know the nurse would say to me, ‘Take two panadol if you think you are going to have a relationship with your husband’. You know things like that, it does affect that way because you can’t, you can’t move. You know you’re restricted and there’s that sort of aspect to it as well which I don’t think a lot of people understand, you know. Yeah.
 
And how have you managed that situation I mean?
 
That’s what I do. I take two panadol [laugh].
 
[Laugh] That’s good advice.
 
And you just laugh about it [laugh]. Yeah, yeah.
 
And as you said there is an extra strain put on a relationship?
 
Yeah, yeah.
 
I mean and how do you go about it apart from just talking about the situation?
 
Well it was when. I’ve had it for a while so it’s when you’re younger as well you find all this out but it is, it’s talking about it. Saying that you are not able to do things because of what you feel. You’ve got this or you’ve got that and you can’t do it. And it is talking about it. You’ve got to talk about it because they don’t know if you don’t. You’ve got to, yeah.
 
Did you receive any advice regarding this particular problem?
 
No, nothing, nothing, no.
 
So it’s not mentioned?
 
No, no it’s not mentioned. That’s why I think it should be, you know, brought up. Yeah. I think you would find it is a big, a major thing in people’s lives and couples, you know.
 
Yeah because it affects your sexual relationship?
 
Yeah, yeah because it’s not just for older people. You get young people with it don’t you? So it must be a big thing for the younger people, yeah.
 
How old were you, 40?
 
I was 40 yeah, yeah.
 
And what did they discuss at that point regarding, because you were put on methotrexate and were you also using contraception at that time?
 
No, no I wasn’t because [my husband] had had a vasectomy anyway so I wasn’t using anything like that. Yeah but nothing was spoken about. They didn’t speak about anything. It was just that you were going on methotrexate and it would help your arthritis and that was it.
 
But what about a woman of 40 who can still get pregnant?
 
They did, sorry they did say when I went on the methotrexate about that but I was aware of that but other than that there was nothing said. I was aware you couldn’t get pregnant if you were taking it but…
 
The part on how you get pregnant wasn’t discussed?
 
Wasn’t discussed at all, no.
&

Last reviewed August 2016.

Last updated August 2016.

 

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