Adjusting to rheumatoid arthritis (RA) may not be easy, but sources of support abound. Most people we interviewed received support from family, friends and neighbours. Parents, children, partners and others gave practical help with cooking, housework, shopping, transport and personal care. A partner gave both practical and emotional support but was distressed at seeing his wife in pain.
A supportive family and teamwork as well as mutual support between him and his wife help them…
Her parents helped her with the housework, shopping and childcare.
Gives practical and emotional support but finds it distressing to see his wife in pain.
She met her husband only six months before becoming very ill and he has become her carer.
Some people found the change of roles difficult. For example, a 78 year old woman found it hard to accept help, and thought her daughter was over-protective (see also Social life and social relationships).
Her children offered help, which she needed, but sometimes she found the role reversal hard to…
One woman said her mother found it difficult to accept that roles had been reversed and that her adult daughter couldnt do things that she herself still could.
Although very supportive, she thought her mother felt sorry for her due to the role reversal.
Many people didnt like having to depend on others for help. For example a young woman found it very hard being dependent on her parents. In particular a broken leg, at the time of interview, meant she had to wait until they came home before she could go to the toilet. One man said that he and his partner, after a few years, had learnt when she needed help but he also recognised her need to still do some things independently.
Family, friends and neighbours offered to help but sometimes she wanted to be independent and…
Depending for help on her parents was hard, especially having to fit into their timetable.
Has learnt over the years when to help his partner and when to accept she wants to do things…
A few said that other people didnt really understand what it was like to have RA – the pain involved, the mood swings or the changing nature of the disease. People wanted others to understand their problems, to help when necessary, but not to fuss too much.
Sources of support outside the family
Help and support came from other sources too. For example for one woman these included members of her church and of the local Rotary Club. If anything was going on, such as a social event, someone from the Club would pick her up and take her.
Arthritis Care, a UK-wide voluntary organisation, also provides support and information through self-help groups, a help line and a website. It has changed in recent years to be inclusive and provides services for all ages and at all stages of the disease (see Resources section).
One woman found Arthritis Care empowering because articles in the magazine helped her to understand that the problem of disability doesnt lie in the individual but with society.
A few people had joined support groups and had found them helpful. A 45 year old woman liked the support group because when she talked to other members she didnt have to put on an act pretending that she was stronger than she felt. It was good to talk to others who understood the condition.
She liked the support group because there she could be a ‘real person and ‘let her guard down.
A 38 year old woman particularly recommended support groups for younger people. She joined a group of people who went on outings together. They also invited people to talk about various aspects of the disease. She remained in the group until she reached the age of forty, the age limit at the time, and moved to a group for older people. Although some people found the support groups invaluable, many others didnt want to join a support group.
She attended a support group for others with rheumatoid arthritis but didn’t like it.
She joined a Young Arthritis Care support group which helped her greatly.
Some worried that the conversation might be depressing. Others wanted to try to lead a relatively normal life and didnt want to be defined as disabled. A few had been to a local support group but had not enjoyed the experience. Some groups seemed to be full of elderly people, which didnt appeal to those who were younger, with careers and young families. One woman tried two such support groups, before moving again, when she joined a group which helped her accept her RA and make new friends.
She made friends at the support group and felt it was the best thing she did as it helped her…
Several people wanted to give support to people with RA (and other disabilities) so they knew they were not alone in dealing with the disease. One woman felt it was important for people newly diagnosed with RA to have positive role models. One man had volunteered to join the National Rheumatoid Arthritis Society Support Network, which offers mentoring and support via email and telephone to other local people. Others helped set up and run support groups and one woman volunteered at the local hospital, working with parents and children with juvenile chronic arthritis.
Arthritis Care Challenging Arthritis courses, usually run by people who have arthritis themselves, the programme is a weekly workshop of 2.5 hours over 6 weeks. Such a course did one man the world of good because he could express his feelings and talk about his experiences. Another man also attended this course in his locality. The people who attended enjoyed it so much that after the course finished they decided to meet regularly at the local pub.
The six week Arthritis Care course called Challenging Arthritis did him ‘the world of good.
Two women described attending an educational course for people with arthritis at their local hospital. Various people led sessions, e.g. a consultant, a physiotherapist, a chiropodist and a ward sister. The course taught them about many aspects of RA, including how different painkillers worked, which one of them found really beneficial despite having had RA for many years.
She attended a five weeks course organised by her hospital about the practical side of living…
The local social services department may also offer financial and practical help. Peoples needs can be assessed to see if they are eligible for help. Social services may be able to arrange for care workers to help with cleaning, shopping or other personal tasks (see Financial benefits and help from social services).