Rheumatoid Arthritis

Impact of the diagnosis of rheumatoid arthritis

How people felt about discovering that they had RA was influenced by how long they had been trying to find out what was wrong, what they knew about arthritis, how old they were and how they were told.

Although told that RA is incurable, one woman described how relieved she was to discover that it was RA because she was concerned that it might be something more 'scary'. Another was pleased to have a diagnosis that meant it wasn't all in her head. Others expressed relief such as, 'Well, thank God I'm not going to die from it and I've got a name for it now and I can deal with it.'

People who had RA in the family sometimes almost expected the diagnosis, but not always - a man whose father had very disabling RA said that he had not thought it would happen to him, since he had been in the army and felt strong and 'invincible'. Those who had developed RA much younger than their relatives often felt surprised and upset (see also 'Ideas about causes').

Diagnosis early in life particularly shocked people who thought the disease did not affect people in their twenties and thirties. Some were scared and preoccupied with questions such as' Will I be able to get married? Will I be able to have kids? What will my friends say? One described how her 'heart sank' - 'once it was given a name and a positive diagnosis it felt as though that was then to be my lot'.

Several young people had felt 'devastated' or shocked at the idea of being admitted to hospital with 'lots of old people' although an older man commented that the hospital clinic was a revelation to him because he had not known that RA affected people of all ages.

A young woman who had been married for only 2 years said that at the worst stage she felt her world had been turned upside down. Another young woman explained that she took things one day at a time while trying to find out what was wrong and didn't think too much about the possible outcomes. Someone who was diagnosed with chronic juvenile arthritis was told that it would probably 'burn itself out' - by the time she realised it would not, she was better able to accept it.

Some people seemed quite pragmatic about the diagnosis, although this was sometimes a way of coping. A woman who was diagnosed at 58 said that she was aware at her age there are worse things you can get. Others commented that knowing the diagnosis meant that they had a good reason to be excused from activities they found difficult or tiring.

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A woman diagnosed at the age of 20 said she 'went with the flow' at the time, but didn't know then how serious it could be. Some who had less severe symptoms at diagnosis said the diagnosis didn't mean much and they had no idea of how their life would change. Some thought it was 'something grannies got'. A man who has had RA for eight years gradually realised that the disease would affect many different parts of his life.

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Many people who had seen others with RA said their first thought was that they would 'end up in a wheelchair'. Some had seen older people with 'deformed hands', were understandably alarmed at the prospect of pain, or had been shocked to see how steroids had changed a person. Those who had discussed these concerns had often been reassured to find out that new treatments mean that people are much less likely to develop joint damage and that it should be possible to relieve pain or learn to control it.

A woman who was told she had 'a weak positive result' said that although she initially took the diagnosis in a matter of fact manner she set out to explore alternative therapies and try to cure herself. Others responded by wanting to find out as much as possible about the disease (see 'Finding information about RA').

Some people found it particularly hard to cope with the diagnosis. One woman said her feeling of depression was made worse because her doctors did not seem prepared to explain or discuss the diagnosis with her. Another was told at age 17 that she would be in a wheelchair before she was 30 which she described as 'a horrible thing to say'. In another case a therapist let the diagnosis 'slip', which was upsetting and not really alleviated when a couple of leaflets were offered.

People who had manual jobs, or who were raising young children sometimes wondered how they were going to continue to cope and support their families (see 'Work' and 'Financial implications and financial support').

Sometimes people are upset because the diagnosis challenges their self-image - a woman who was athletic, active and took good care of herself felt angry and asked 'Why me?' A physiotherapist who had often treated people with RA felt that she should not have got the disease herself yet felt the odds were against her because she had been bereaved and was coping with two children on her own.

For source of support see our Resources section.

Last reviewed August 2016.

Last updated March 2012.

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