My journey with RA has been long. I was diagnosed 25 years ago and the disease was controlled with aspirin and intermittent rest until recently. Suddenly in my early 50s the RA advanced rapidly. I have always enjoyed travelling, starting when I was 10 years old in West Africa and subsequently living and working in Germany, Bahrain, India, South Africa, Zimbabwe, and the US. I used my vacation time to travel to different countries and to find out whether they were places I'd like to live and work. While I was in the US the RA caused my life to change. My health was too erratic to continue with work. I was granted long term disability and returned to the UK. Initially, back in the UK, my main concerns were receiving effective treatment, sympathy, and helpful support that I luckily found. Gradually I did learn how to adapt my lifestyle to my physical abilities. One of the biggest changes RA has had on my life is the limited travelling. I can only fly five hours maximum in aircraft with a decent seat pitch and only in an aisle seat, so I can move about. I cannot tolerate high heat or humidity and have to think about location (steps, steep hills, stony beaches are all unhelpful!). History and cities have always been a big pull for me, but they now have to be absorbed in minibreaks, because I can't walk too far any more. I still travel and intend to do so until I cannot move at all. This requires a lot of forward planning, not least: do I have enough pills to get me through the two weeks?

I believe that my RA first showed itself back in 1994. I was under an orthopaedic surgeon with what was later diagnosed as a brachial plexus injury. My ESR was very elevated, but the information was dismissed as irrelevant. During 2001 I had a variety of symptoms, which constantly changed and moved around my body. These included aches and pains in the muscles and joints of both my arms and legs and constant tiredness. In October I attended a week long outward bound leadership course, and by the end the pain and stiffness was so acute I could not even dress myself or lift my hands to my head. On my return to London my husband took me straight to hospital. There an assessment nurse diagnosed an acute attack of rheumatoid arthritis and confirmed the diagnoses with blood tests for rheumatoid factor and ESR levels.

I made an appointment with my (now ex) GP, who when I informed her that I had been diagnosed as having RA said "Nonsense you probably just have flu." I finally persuaded her to order blood tests, which reconfirmed the diagnosis. However she flatly refused to allow me to keep the rheumatology appointment and insisted that I attend a hospital with a over one year waiting list, even for "urgent" first appointments. I was forced to see their rheumatologist privately. My initial reaction to my diagnosis had been relief as I had privately felt that I had been going mad. I felt that at least I finally had a name and an explanation. However as time progressed and my disease was still not under control I began to feel extremely depressed and desperate to talk to someone.

Arthritis Research Campaign (ARC) (www.arc.org.uk)—this UK charity is funding research in universities, hospitals, and medical schools to investigate the cause and cure of a range of rheumatic diseases and health service research. In addition it provides over 60 free clear and well written information booklets for patients and carers, developed by experts and patients on a wide range of topics—for example, different rheumatic diseases, juvenile arthritis, treatment, lifestyle, drug information, and specific leaflets about body parts affected by arthritis, including the quarterly magazine Arthritis Today

Arthritis Care (www.arthritiscare.org.uk)—this UK voluntary organisation offers a helpline team for practical and confidential support; has a range of useful publications about drugs, treatment, and services, including a bimonthly magazine Arthritis News; runs several self management courses—for example, expert patient programmes and personal development courses; arranges over 500 local support groups; and campaigns for greater awareness about the needs of people who have arthritis

National Rheumatoid Arthritis Society (NRAS) (www.rheumatoid.org.uk)—this more recent established organisation (October 2001) describes itself as a "campaigning voice in the UK for people with rheumatoid arthritis." The website contains useful and clear summaries and detailed information about medical issues—for example, drugs, treatment, and non-medical topics such as emotional, social, and economic difficulties encountered with this long term chronic disease

Arthritis and Muscular-Skeletal Alliance (www.arma.uk.net)—a UK umbrella association that brings together support groups, professional bodies, and research organisations in the specialty of arthritis and other musculoskeletal conditions. The aims are to provide recommendations for high quality musculoskeletal services throughout the United Kingdom at all stages of patients' pathways through the health service, including developing and publishing standards of care for six main groups of musculoskeletal conditions—for example, inflammatory arthritis, osteoarthritis, back pain and others

Employers' Forum on Disability (www.employers-forum.co.uk)—This apolitical and non-profit organisation focuses on the issue of disability in the workplace for employers. Its aim is to provide information about best practice to make it easier to employ disabled people and to serve disabled customers

Disability Rights Commission (DRC) (www.drc-gb.org)—the commission acts as an independent organisation to stop discrimination and to promote equality of opportunity for disabled people generally and around employment specifically. It provides a helpline, casework, and a legal service