Rheumatoid Arthritis

Finding information about RA

People who had had RA for many years often noted that in recent years information has become much more accessible and that doctors seem more willing to discuss treatments. A few of the older people we talked to happily relied on their doctor for all their information but most wanted to find out about their disease themselves, even if they trusted their doctors completely. In one older woman's words 'If you've lived with something for years you're bound to ask questions about it, otherwise you're a bit wrong mentally'.

Many people had received informative leaflets about RA from the rheumatologist, or picked them up at the GP surgery or Rheumatology clinic. Others read magazines such as Arthritis Today (Arthritus Research UK), Arthritis News (Arthritis Care) and other publications for people with disabilities.

Many people had read books about RA, which often detailed dietary or other complementary approaches. Personal experiences of living with RA were also popular. One woman had been pleased to discover a book about Arthritis and Sex and another noted that many second hand bookshops and charity shops had books about RA.

A recently diagnosed young woman, commented that most books on RA tend to come from the USA and therefore information about charities and support groups are irrelevant to a UK-based patient. She has also found  that there is a lot of confusing information about diet and exercise. 

Some were wary of information and worried about discovering 'scary' things about the disease, but others found it reassuring to learn that new treatments can avert much of the disability people associate with RA. 

Because RA involves long-term medication, many wanted to know more about the possible side effects, including how common these are.

It can be difficult for health professionals to judge when to give people information about their illness. Leaflets about aids and adaptations alarmed some people who were at an early stage of the disease when they hoped they would never need them. However, others were amazed that they had not been given invaluable information about voluntary organisations, benefits advice, disabled parking schemes or Access to Work (see 'Financial implications and financial support').

Access to the Internet has revolutionised some people's ability to find out about their diagnosis, what the various tests are for, learn about new research, what to expect from surgery, find descriptions of treatments and side effects, complementary and dietary approaches. People also searched for the personal experiences of other RA patients wanting to find out   how others  have coped with the disease. Many people without access to the Internet had a friend or relative who searched for information on their behalf. Partners looked for information on the Internet to help them understand what their spouses were going through and to enable them to ask doctors questions. One man found information that was particularly helpful after his wife was first diagnosed. Several respondents indicated that in their experience it is better to visit recommended websites rather than just 'Googling' the term 'rheumatoid arthritis' because some of the information on the net can be scary or just too commercial.

Newly diagnosed people can benefit greatly from one-to-one information from health professionals. One recently diagnosed woman found that her meeting at the hospital with a multidisciplinary team consisting of a practitioner, an occupational therapist and a physiotherapist was much more valuable to her (and less depressing) than searching the web for information.

Doctors and other professionals can help guide people to reliable sources of information, voluntary organisations and good websites. Although some people said that their doctors had warned them off the Internet, others had doctors who would help them to interpret what they found. However, it wasn't always easy to raise questions in busy clinics, nor to know who to ask if the doctor seemed too busy. Some people felt they had slipped through the net and not been given the information they needed. One woman described finding important information on the Internet about how she should take her methotrexate and others had searched for useful information about their surgery.

The Internet can provide enormous, sometimes overwhelming, amounts of information. Useful websites people mentioned included Arthritis Care, Arthritis Research UK, The National Rheumatoid Arthritis Society.

Charity websites often provide ‘chat rooms’ where people with RA can communicate online with other patients in an anonymous way. People who have used charity run chat rooms found them a useful way to shared information but also to learn from the personal experience of others.

However, some said that many of the medical charity sites were rather dry and wordy or contained nothing that they hadn't already seen in leaflets or books. Some people searched sites like the British Medical Journal to find the latest published medical research. One woman had used the Internet to 'flesh out the headlines' after reading newspaper reports of so-called 'miracle cures' (see also section on 'Resources'). Sometimes people doubted the reliability of information they found, especially if it was from American websites that were trying to sell unconventional remedies.

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Younger people indicated that there is still need for more information that is relevant for their age group. Some of the issues that young people find hard to find information about are' traveling abroad, living abroad and healthcare for disabled citizens in the European Union. Several young adults said that a lot of the information in the media is targeted to older people with RA which reinforces the 'myth' that RA is an illness that only affects old people. (See also our young people's experiences of long-term conditions)

Their consultants had suggested one of the new biological drugs to some people we interviewed. Those who wanted to know more about them found the manufacturers' websites useful. 

E-mail was used to keep in touch with friends and family and to make contact with other people with the disease. One woman liked being able to e-mail her GP's surgery to arrange repeat prescriptions. Another had bought aids and gadgets to make life with RA easier. The Internet is also used for support and to learn about other people's experiences, but some regretted the need to visit so many different sites to find everything they wanted to know. One woman had used a patient health community website to reach other people around the world with RA. Another had been encouraged to take part in the Healthtalk project because the Internet had made her realise that she was not alone in her experiences of RA. Two men had attended an Arthritis Care course, Challenging Arthritis, which had introduced them to other people with RA (see also 'Sources of support').

Last reviewed August 2016.

Last updated August 2016.

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