Rheumatoid Arthritis

Attitude to RA & facing the future

Being diagnosed with and living with a chronic disease such as rheumatoid arthritis can be difficult to come to terms with and adjust to. Several people were determined not to worry, or optimistic that advances in medication and joint replacements would improve their lives. Others hoped that the disease might 'burn itself out' or a cure would be found. Although there have been real advances in treatments there is currently no known cure and some people were understandably concerned about their future.

People viewed having a chronic disease in different ways:

Learning to live with RA

One woman, diagnosed over 40 years ago, summarised her feelings on how to live with RA. You could either 'live with it; fight it; or give in to it' and she felt the first option was best which meant recognising your limitations. 

People suggested that adaptation, taking control and learning how much they could do without overdoing it was the answer. One partner felt that being flexible, to accommodate his wife's changing condition, was the way to 'just get on with your life'. Others with RA said, 'Don't give in to it' although some wondered, 'Why me?' Many felt lucky because; they had lived many years able to do activities they enjoyed without the disease; they felt better now their disease had been diagnosed and was being treated; they had RA and not something they considered worse.

Coming to terms with having RA

Many people had taken a while to come to terms with having the disease and some suggested that they might have been 'in denial'. A 28 year old woman, diagnosed at the age of 14, said that she still resisted the idea that she was 'disabled'. Others did not visit the doctor or played down their symptoms because they didn't want to admit that something was wrong.

Some people continued to hide the fact they had RA. Striving to feel as 'normal' as possible they tried not to complain about their symptoms and avoided anything that might label them as disabled, such as parking badges or wrist splints. However a few people felt that having bruises etc after an operation were an outward sign of their RA for others.

Helping others

Several people wanted to help and support others diagnosed with RA by projecting a positive image and showing that, although some aspects of their life may need to change, this could actually improve it. People provided support by setting up support groups hydrotherapy sessions; demonstrating specialist equipment and talking with people newly diagnosed or children with RA.

Concerns about the future

Many worried about the future. One woman said that she was trying to prepare herself mentally for more disability and another felt that her main problem was maintaining her artificial joints. Some found it particularly hard to cope with the unpredictability of the disease and worried if they would be able to cope with future 'flares' of their arthritis. Not being a burden to others was important although many accepted that the time might come when they would need help. One partner said that he felt anxious that his wife may become bed-ridden in great pain or that they would need to move house. Unknown long-term effects of drugs, damage to joints, needing to use a wheelchair and the increased risk of heart disease were also causes for concern.

However many people had learnt to live each day to the full, to 'live for the moment' and to value their good days. A few didn't think about the disease very often and tried to forget about it. Several said that maintaining a sense of humour was essential.

Last reviewed August 2016.

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