Rheumatoid Arthritis

Impact of the diagnosis of rheumatoid arthritis on family & others

Rheumatoid Arthritis (RA) can be diagnosed at any age so the impact on the family can vary greatly. Sometimes a couple went to the appointment together and heard the diagnosis first hand. Most of the people we talked to had informed their close relatives soon after they returned home. Family members and friends were often not sure how to react since they knew little about rheumatoid arthritis. Few knew the difference between RA and the more common osteo-arthritis (or 'wear and tear' arthritis). Some relatives and friends, not in everyday contact with the person, did not understand the full effects of the disease on the person and thought it might be only short-term.

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A husband said he was relieved to have a name and course of treatment for the symptoms his wife had but was also concerned about the long-term prognosis. Another didn't appreciate the seriousness and level of deterioration there would be over time.

Older people, including the parents of some RA patients diagnosed early in life, were often upset because they thought that disability would be severe. Fortunately modern treatments are much more successful and now people can realistically hope to avoid the disability and disfigurement that used to be associated with the disease. Parents may feel that they are in some way to blame.

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Some people have pre-conceived ideas about RA' one woman had to educate work colleagues that it didn't mean her career was over and she didn't want pity or wrapping in cotton wool.

One husband, who worked in the oil industry in various hot countries, had to return to England and change career because the hot weather aggravated his wife's RA.

A woman whose father had had RA said she was determined to be more open about the disease with her daughter. Some worried that they might pass it on to their own children and were keen their children knew how to look out for early symptoms (see 'Ideas about causes').

The effect on children is likely to depend on their age and this also affects how much they are told about the disease. One mother felt that it had quite an effect on her nine year old daughter, particularly in the early months. She was too tired to contribute to household jobs and the pain also made her reluctant to cuddle or kiss her daughter. Her daughter became tearful and needed reassurance that the disease was not life threatening. Another mother decided not to tell her children about her mild onset RA and another decided, due to other stresses at the time, not to discuss it in depth with her teenage son. Later she found out that he had learnt about it anyway from his school biology and could discuss the cause of her pain with her.

One woman told her relatives and friends but tried to hide the full symptoms and problems it was causing and 'put on an act' until she got behind her own front door. Not until family members spent some time with her did they realise what impact the disease was having. Another young woman appreciated the encouragement and support from others that helped her get over her own shock at the diagnosis.

Several young people said that they don't mind telling close friends and work colleagues about their RA but they wouldn't necessarily disclose their condition to those they don't know very well. One of the main reasons was because rheumatoid arthritis is thought to be an 'old person's disease' and they usually get asked awkward questions or comments like 'but you look so healthy' or 'you are so young, you couldn't possible have it'.

A few people who had been diagnosed relatively young or in their 20's, said that they did not tell others. Sometimes this meant that they avoided seeing relatives or going out socially, for fear of being treated differently or excluded from activities. One woman told her family but kept it secret from her friends. She later realised they just wanted to help. Another considers herself lucky because friends and relatives have rallied around after her diagnosis.

Friends sometimes played an important role in encouraging people to seek help. One young woman waited four months to go to the GP and then it was a friend who persuaded her to go. Another woman told friends, who dismissed the aches and pains as a sign of age, but were then shocked to hear that it was RA. If the onset of the disease was severe it was obvious to friends and family that something was physically wrong.

People had different views about telling new acquaintances about their RA. Some felt that if it wasn't physically obvious then there was no need to tell people, and they didn't want people to notice as they felt self-conscious. Some would tell people but only when they felt the new acquaintance had got to know more about other aspects of themselves. If the disease affected the hands, the way they walked or if scars were visible, other people were likely to ask questions which would be answered. Other people we talked to said they would never introduce the subject of their health, but if people asked or it came up in a conversation they didn't mind talking about it. One woman explained that because she looked 'normal' she felt she needed to apologise for not being able to do things, or being slow. Sometimes having to ask for help embarrassed her.

Some people were relieved to have a diagnosis and a name for their symptoms and problems. If people, including work colleagues, knew that they had RA, this gave them 'permission' to be excused from some tasks when they were tired and wanted a rest. A man explained that by being open about it he found other people who also had some form of arthritis and could share experiences about how to cope.

Last reviewed August 2016.

Last updated March 2012.

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