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.

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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.

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').

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.

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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'.

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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