Rheumatoid arthritis (RA) can affect peoples social lives in many ways. Physical activities may become difficult and people may have to give up participating in sports, although they could still enjoy watching them thus losing an opportunity to meet others. We talked to people who had to give up rambling, climbing, cricket, football, golf, hockey, racquet sports, skiing and aerobics. Some had found alternate ways to meet people and socialise.
She can’t play sport, dance or go for walks, all activities she misses.
The disease can affect social interaction in many other ways. For example, one woman said that when she picked her children up from school she stayed in her car because she couldnt face the struggle of getting out of it. Thus she missed chatting to other mothers at the school gate.
Going out and drinking alcohol
Socialising can often involve alcohol, which can interact with some medication and affected peoples symptoms, so many chose not to drink or only in moderation. Several people said that not drinking had altered their social life and relaxation time. Young people found it particularly difficult to adjust to not drinking alcohol. One 25 year old woman explained that when you are young drinking alcohol is something you do when you go out with your friends (also see our section on young peoples experiences of long-term conditions).
Her doctor advised her to stop drinking alcohol, but this affected her social life.
People who were recently diagnosed described an adjustment period which involved changes to their everyday lives and routines including socialising and leisure activities. One young woman for instance said that nowadays instead of going out to a bar she tends to go out to dinner. Another said that going out to a club has been replaced by cinema outings. They commented on their need to plan and organise their activities in advance.
Talks about the changes she has made to her social life following her diagnosis and the advice…
Others said that they turned down invitations to go out at night because they didnt have the energy. A 28 year old woman sometimes stayed indoors for months, without going out, recuperating from operations. One person knew that his immune system might be weak, so tended to avoid parties or other gatherings.
People with well controlled RA think that their condition is not the only factor that determines their social life. They made the point that of course they feel more tired than others their own age but at the same time they have busy lives working or caring for young children. They stressed the need to rest and pace themselves. One young mother said that in comparison to other women with young families, she has learnt to prioritise looking after herself.
Tara thinks that having a young family restricts one’s social life anyway. She has learnt the…
He belongs to the Ramblers’ Association and his doctor says he can still walk as long as he doesn…
Still enjoys dancing in clubs but her feet hurt afterwards.
One woman joined Horse Riding for the disabled, which she enjoyed, despite the pain it caused. Another woman continued 10 pin bowling but had to use the lightest ball. Someone else said that she could still sail, but only as a member of the crew. Mobility problems often restricted shopping and sightseeing on days out. One woman helped run a branch of LArche UK, for people with different disabilities, including wheelchair users, so that all their social events were accessible.
Many younger people were keen on travelling. One 25 years old woman has already travelled in Asia and is busy organising her one year stay in France. She was initially concerned about healthcare but went to a Social Security office in France and also made an appointment to see a doctor and get some medical advice (also see our section on young peoples experiences of long-term conditions).
She will either teach English or study at university in France. Says that her big concern was…
Travelling abroad with anti-TNF medication requires some planning ahead; in particular to make sure that there will be a fridge to store the medication for the duration of the holiday. Also, and because patients will be travelling with pre-filled syringes, they need to take with them a letter from their doctor explaining their medication.
Sandra is on Cimzia and explains what she has to do when travelling abroad.
Leisure activities at home included various types of needlework, playing instruments and using a computer to surf the Internet, play games and communicate with friends. One woman joined an art club in the village hall. Others found they could still cook quite easily, so entertained at home. Visits to theatres, cinemas etc. were still enjoyed where venues were accessible.
Once a week she goes to a craft club and she loves it. She has made new friends and says that it…
Social and Family Relationships
Rheumatoid arthritis can at times put a strain on social relationships. Pain and loss of independence can make people feel frustrated, angry, and depressed, which can in turn affect other members of the family.
Pain can make him depressed and ‘grumpy’ at times, which can affect relationships with other people.
Family members may find it difficult to cope with changing roles. Most people we interviewed said that their partners had been very supportive; that they willingly helped with domestic chores and took on caring roles (see Sources of support). However, a few said their partners hadnt offered enough physical and emotional support and that they had been less understanding. One woman said it helped to educate family members about the disease. A recently diagnosed woman says that RA can affect relationships. In her experience, she feels that her husband has become more understanding and involved after he accompanied her to a hospital appointment.
She says that RA can affect relationships because it is difficult for others to ‘see’ how the…
One woman had heard that RA could wreck marriages. However, she said that as her arthritis had developed over the years her husband had become a much more caring person. Another woman said that although her first husband had left her, partly due to her arthritis, her second husband offered constant support.
One man found that his arthritis and associated depression put extra strain on his wife and, although she was very supportive, it eventually led to their separation.
A 28 year old woman was adamant that her RA had affected relationships within the family. She was concerned about her parents, and concluded that RA had made life immeasurably difficult.
Rheumatoid arthritis has affected family relationships, and made life ‘immeasurably’ difficult.
Young people and relationships
A woman who had RA when she was 21 recalled how one young man had left her when she became ill because he couldnt handle her disability. This made her wary of starting new relationships. On the other hand, a 27 year old woman met her partner of the last five years after she was diagnosed with RA. Another woman recalled her youth, and described how men had rejected her. At the time she had felt that with arthritis she would never find a boy friend. People also chose friends carefully to avoid being hurt and said it took time to become close to others. Another girl says that friends or boyfriends do understand her limits but up to a certain degree and hopes to meet someone who will be able to deal with the limitations that result from her condition (also see our section on young peoples experiences of long-term conditions).
When she was very ill she felt unattractive, guilty and ‘a burden. Telling her partner how she…
In her experience boyfriends and friends do understand but up to a point. She would like to think…
A woman, nevertheless, whose RA was diagnosed at the age of nine, suggested that because she had developed the disease before she was a teenager her friends readily accepted it. Her boyfriend was supportive and didnt mind pushing her wheelchair. When she met new people she usually mentioned that she had RA. In general she felt relationships were very good. She went out with her friends and said she had fun despite not being able to partake physically, because they were having fun.
Although some people said that sex had not been affected by RA, others said that sex was difficult or even impossible. One man explained that RA had affected his marriage and his sex life because after work he had to go to bed by 9pm to rest. However, a 45 year old woman said that by being creative it was possible to have a good sex life. She said that it was very important to discuss sex with your partner. One partner said that, due to his fianc√©s pain, they had stopped for a while which was frustrating for them both. Pearl was advised by her nurse to take a couple of Panadols before sex.
She thinks that she couldn’t have a sexual relationship and thinks that RA ‘killed’ that part of…
Rheumatoid arthritis affected his marriage because he had to spend so much time resting.
She suggests it is important to talk about sex, to be ‘creative’, to use humour and to have an…
His partner’s pain had interrupted their sex life, which was frustrating for both of them.
Several of the younger respondents said that their sexual life has been only temporarily affected during those times when they were experiencing a flare up, when ill but before diagnosis, after surgery or when a particular medication was not controlling their RA. One woman in her 20s said when you feel rubbish you are not going to jump into bed with your partner, but you make up for it when you feel better One young mother said that sex life can also be affected by other factors apart from rheumatoid arthritis – such as having small children (also see our section on young peoples experiences of long-term conditions).
At the hospital they emphasised the importance of contraception when on methotrexate to which…
Her sex life with her boyfriend was difficult for some weeks after a hip operation. Otherwise she…
One woman, when she was younger, had found a really useful book called Lovemaking and Arthritis for younger people. Others said that it was a pity that consultants and other health care professionals didnt talk raise the issue of RA and about sex.