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Rheumatoid Arthritis

Body image and rheumatoid arthritis

Young people and young adults diagnosed in the most recent years initially thought of rheumatoid arthritis as a condition that it is progressive and that will 'inevitably' lead to joint deformity. 

Fortunately recent advances in rheumatoid treatments can actually prevent the disability and disfigurement that used to be associated with the disease. New drugs are highly effective and can modify the progression of disease and improve the function and quality of life for patients. (See Biologic treatments.)

In this summary we will talk about respondents that have experienced changes in body shaped and self-image.

As rheumatoid arthritis (RA) progresses it can start to destroy the cartilage and bone within the joint. The surrounding ligaments, muscles and tendons become weak and don't work properly. When this happens joints become unstable. Further use of the joint may then change its shape and appearance.

Many people mentioned a changes in body shape and self-image. A few thought other people should accept that they were 'different', and one woman said that she and her disabled friends were keen to 'celebrate difference'. A young woman had learnt to accept her changing body shape and felt that everyone was individual.

 

Has learnt to accept her changing body shape and no longer feels self conscious.

Has learnt to accept her changing body shape and no longer feels self conscious.

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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And I, and I used to feel a bit weird when I, but I had a bad hip so you could tell there was something wrong with me because my right leg had become two inches shorter than my left and that's where the bone had worn away and the ball of the, the hip joint had sort of, it had worn away so badly that my leg had risen up because that sort of keeps it in place. 

And I had a really bad limp which I felt really self-conscious with, more self-conscious in fact than being in a wheelchair with it. I felt that everybody was looking at me 'cos I was walking wonky whereas in a wheelchair, I don't know, I just felt like people, I think sometimes people make a conscious effort not to look when you're in a wheelchair which, you know, I don't mind, you can look at me, I'm, I'm not too bothered.    

I think when you do have arthritis and you do look different I'm aware that my wrists look different to other people's and my head is different because of my neck and I'm, I'm very much aware that I don't look like everybody else and I think that's why I can cope with, you know, having a different kind of body I think. If you don't have the kind of disability then you think, 'Oh my nose is big' or 'My bum's big' or something like that. But when you have arthritis you think, 'Yeah, I'm different. Everybody's different but there's nothing I can do about it'. 

So I don't care, you, you, you make a choice to say to people, 'This is me and I'm different. And you either deal with that or you don't. And you know I don't have to know you, I don't have to put up with you so''  And I think you, you get to that stage eventually. At first it's difficult. At first I didn't like wearing tops that didn't have long sleeves because of my arms and, but now I think, 'Well, in all honestly people don't actually notice it' because in fact everybody does have different wrists. It's not like I look like a major freak or anything. So it's, it's absolutely fine.  

But you, you have to get it into your own head. You, it doesn't matter how many times people tell you know, your friends and family they tell you, 'It's OK, you look fine', until you go out and meet people and then they don't notice you think, 'Yeah, they're right, they're telling the truth'. I mean, obviously you don't think they're lying but you, at the same time they're not going to say to you, 'Yeah you look different' because they know that it's going to hurt you and they know that it will be difficult for you. So I think you just have to get out there and find out for yourself.  

One woman said, 'You don't care about the deformities after a while, I think it's part of you, it makes you who you are, it's your, it's your little map, it's made you who you are and why should you deny what you are'. However, many others described what they called 'deformities' caused by inflamed and damaged joints. One woman felt embarrassed by her 'horrible hands and feet'. Others also talked about their 'horrible twisty fingers', 'ugly hands' and 'swollen ankles'. A woman of 45 thought her shoulders looked a bit 'gnawed' and a man said his hands were like boxing gloves.

People concealed out of shape joints under long sleeves, gloves, long skirts and trousers. Some women had stopped wearing rings so as not to attract attention to their hands whilst others chose to have long manicured nails to distract attention away from their joints.

Some people were very conscious of their 'disfiguring' surgical scars but others accepted them and did not hide them under clothes. Others again were embarrassed by the way they walked. One woman said that she walked 'more like a duck' than a person and another woman had at first felt really self-conscious about her limp.

A 53 year old woman was 'demoralised' when she saw herself in a mirror or a shop window as a 'stooped shuffling individual'. She said that the psychological effect of this aspect of the disease hadn't had enough attention. Some people disliked photographs of themselves in a wheelchair or which showed signs of their arthritis.

 

She felt self-conscious about her body and suggested that the psychological aspect of the disease...

She felt self-conscious about her body and suggested that the psychological aspect of the disease...

Age at interview: 53
Sex: Female
Age at diagnosis: 30
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I mean, maybe, one aspect, of the disease and the treatment of it that is really not given any attention at all is the psychological and the emotional effect that having this disease has. You need a lot of moral support, I mean maybe that can be achieved through self help, help groups or social groups, who are people who have diseases like this, I don't know but it is demoralising. I mean apart from the way I look, and feel self conscious about and the doctor says' 'You shouldn't feel like that' but I do. The fact is I do, I had a normal strong fit OK body and if I catch sight of myself in a mirror or a shop window and see the stooped shuffling individual I think 'Oh God. Do I really look that?' It's demoralising, it really is and it's some, an aspect of the disease, the psychological effect of it that isn't given any space at all.

Several women were upset that they could no longer wear feminine, pretty, heeled shoes or 'strappy sandals'. Many had difficulty finding comfortable shoes and had to settle for 'sensible' shoes that were flat, wide and soft. Trainers, open toed and backless sandals were often their only option. A few had supportive insoles and shoes specially made by an orthotist. A few people found these very helpful, although rather unattractive (see 'Other hospital specialists').

 

Has to wear flat, wide shoes but would like fashionable, supportive specially made shoes.

Has to wear flat, wide shoes but would like fashionable, supportive specially made shoes.

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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No, I do have a lot of trouble getting shoes, to be fair. But you can get ones now that are extra wide fittings and things. So I tend to go for those rather than having a pair made. I mean I would love to have a pair of shoes made for me that were fashionable and that were nice. 

But not to have a pair of shoes made for me where the only goal was supporting your feet and it doesn't matter what they look like and that sounds terribly vain but probably a lot of people would feel exactly the same way I would imagine. And I've never worn, couldn't wear high heels or anything as drastic as that and my shoes all have to be flat or with a slight heel and wide enough because my toes are sort of a bit deformed and my feet are a bit bony. But and they usually have be slip-ons because it's easy to get them on and off.  

Clothing can be difficult to put on and items needed zips instead of buttons, to be lightweight or have elasticated waistbands. Some people had had to compromise between what they would choose to wear and what they could actually wear.

Sometimes the words or actions of other people made those people with RA conscious of their changed circumstances. For example, one woman said that when she went to the hospital for a blood test a nurse called her 'a rheumatoid', rather than 'a person with rheumatoid arthritis'. She disliked this label, particularly since at the time she felt quite well. A 28 year old said she didn't want to be defined by a disease.

 

She didn't like being called 'a rheumatoid' by a nurse at the hospital.

She didn't like being called 'a rheumatoid' by a nurse at the hospital.

Age at interview: 42
Sex: Female
Age at diagnosis: 29
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Once when I went for a blood test, a routine blood test, when, when things had settled down and it was a different nurse and she said, she said something like 'Oh you're a rheumatoid' or something like that, that just sounded such an odd thing to say to me because I hadn't actually got any problems then and it was almost like a label that I didn't really like it 'cos I didn't feel, you know, I was just going for a routine blood test because of the medication I was on and I just feel that, you know, I am somebody who has in the past had these rheumatoid arthritis flare ups but I don't feel that it's something I'm burdened with all my life. 

I do know it's sort of, the possibility's always there but I don't feel it's something that if I'm describing myself I, I would sort of feel that's part of what I am really. I would, you know, I would say I'm, you know, define myself in perhaps what I do for my job or the family I have, not in my sort of, you know, health background.

Another woman said that a nurse's comments had made her acutely aware of her 'deformed hands'. A 38 year old woman also recalled that when she was young her doctor had introduced her, as a 'case' to other doctors, as a child 'grossly deformed with arthritis'.

 

Explains why she became acutely aware of her deformed hands.

Explains why she became acutely aware of her deformed hands.

Age at interview: 43
Sex: Female
Age at diagnosis: 24
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I would say I have got deformities of the feet but you cover your feet up with shoes and your clothes, so people don't tend see them and in my ankles I won't wear skirts anymore. I will not wear dresses or skirts 'cos my ankles are very swollen, they're thick they've, I've got scars on them so I wear trousers, so it's not a problem with that.  

But my hands, your hands you can't hide, hands are always very focal and I tend to use my hands quite a lot when I'm talking, when I'm training. And I've become very aware of they're deformity and, and so much so, I won't wear rings. I have lots of beautiful rings. I won't wear my wedding ring. I won't wear anything on my hands which brings it to people's attention. I'll even wear t-shirts with long arms just to cover up the knuckles, so I just have the tips pointing through. So and I hate it if I ever catch a sight of my hands in a mirror, I often do it when I'm driving, you might catch it in the wing mirror or something, I just I hate it. So unfortunately that's something I have to, to deal with, it's just made them very ugly.

And what brought you're attention to that?

It was a, unfortunately it was, it was actually a visit to a hospital, when I was I was going to a clinic and the nurse in question was walking a bit fast and I asked her, 'would she mind to slow down because I had rheumatoid arthritis and she said, 'I know you've got rheumatoid arthritis I can tell from your hands.' And up until that time, I wasn't really aware of it. I wasn't aware because I think if you look down at your hands, you don't see necessarily what the mirror shows or what other people see.  And it was only then that I, as soon as I got home, I looked at my hands and I thought, yes, they are. 

And it, it was one the almost aware things, well if she sees them then everybody sees them and everybody's aware and everybody must be looking at you, thinking, 'oh what's wrong with her, she got, her hands are all deformed.' So unfortunately, since then I try to hide them as much as possible, which isn't that easy really because they're hands.  

 

Recalls her distress when a doctor presented her to other doctors as a child 'grossly deformed...

Recalls her distress when a doctor presented her to other doctors as a child 'grossly deformed...

Age at interview: 40
Sex: Female
Age at diagnosis: 2
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And I remember being referred, the first time I went to get assessed for my joint replacement, the doctor rang up and said 'we've got another 'mini' for you, how soon can you get a joint', and I did not like that, I do remember that. So I think the doctors themselves can actually enforce your belief. 

I have had, I can remember going into case conferences at the age of thirteen in front of a whole load of doctors and saying, 'Here is a child that is grossly deformed with arthritis' and that sticks in your brain You think 'God, I'm grossly deformed', you know, I don't know whether it's got better, but as a child growing up that's what they said and did, hopefully that's got better I think, 'cos that again reinforces your belief about yourself, I mean, I never even thought I'd get a boyfriend, it didn't enter my head I'd get a boyfriend, because I was made, I grew up thinking, 'Oh I'm not going to get a boyfriend with this illness', which is not the case, it's stupid. 

And I think how you feel about yourself comes across to other people, if you don't like yourself and are timid, people are attracted to you and I grew up, when I was younger, being a lot more sort of timid and I have had lots of knocks backs from men, and I've gone home and cried my eyes out

Other people felt that a stigma is still attached to RA. One woman said that others expect those with arthritis to look different, to wear splints and have scars everywhere. Another woman also thought that some people have a very negative image of arthritis, not helped by the media. She regretted that friends and family talked too much to her about arthritis, sometimes forgetting that there was far more to her than just her arthritis. 

Strangers can also stare or ask intrusive questions about mis-shapen joints, the reason for using crutches or a wheelchair, etc. Some people that we interviewed suggested that generally people did not understand that they may be in pain despite not having outward signs, such as a broken arm, so they got little sympathy.

On the other hand, a 38 year old woman, diagnosed at the age of two, suggested that society has changed and that while older people tend to be patronising, younger people tend to be 'more accepting' of those with disabilities, perhaps because children with disabilities often go to mainstream schools.

Last reviewed August 2016.

 

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