Rheumatoid arthritis: Isabelle's story
Isabelle* is 53, with a background as a registered nurse, and has had rheumatoid arthritis (RA) for most of her life. Rheumatoid arthritis is a type of inflammatory arthritis characterised by pain, swelling and stiffness of the joints, tiredness and mobility limitations. The presence of RA has not been attributed to a single factor, but is thought to be influenced by genetics, individual immunity and, at times, a prior viral or bacterial infection. Here, Isabelle tells myDr what it’s like to live with RA, and how she has overcome many obstacles to achieve her goals.
Being diagnosed with arthritis
Isabelle first experienced joint problems as a 19-year-old student nurse, when she contracted a viral illness, originally thought to be glandular fever.
‘When the test was negative for that they really didn’t know what it was,’ said Isabelle.
‘Shortly after that I was getting sore joints, and a rheumatologist suggested that it really was the start of rheumatoid arthritis. It wasn’t until I was 22 or 23 that the tests for RA came back positive’.
Isabelle admitted she had her own preconceptions about the condition, courtesy of a family friend with RA whose condition she saw deteriorate as a child.
‘When I first found out I had RA, I was devastated. I had this mental picture of a lady in a wheelchair, and I was wondering what was going to happen to me,’ she said.
‘It was frightening for me, and sometimes when you have a little bit of medical knowledge, it’s worse.’
Related conditions
As well as dealing with RA, Isabelle also has lupus (systemic lupus erythematosus) and Sjögren’s syndrome. Lupus is a chronic autoimmune disease—the symptoms can include fatigue, fever and skin rashes and a reduced capacity for exercise or activity.Sjögren’s syndrome is an autoimmune rheumatic disorder. People with Sjögren’s experience tiredness, aches and dryness of the eyes or mouth.
‘My niece also has lupus, but that side of my health problems is quiet now, and my biggest problem is the RA,’ said Isabelle.
‘There’s obviously a genetic connection in our family, but something else obviously has to be involved.’
Medical support
Isabelle said that she believes it is imperative for people with arthritis to get the support of sympathetic medical staff they can confide in and trust.‘Working in a hospital when I was diagnosed, I had fabulous medical support from the doctors, physiotherapists and occupational therapists. With their help and encouragement, I was able to continue working,’ said Isabelle.
Working with arthritis
Isabelle has a Masters in Education, and has spent the majority of her career in staff development. Until September 1999, she worked full-time at a Sydney hospital, but was forced to retire due to her RA.Isabelle now works part-time with the Arthritis Foundation of NSW (now Arthritis NSW), providing telephone counselling and advice to people affected by arthritis, and plans to move further in patient education and public speaking.
The ability to stay in the workforce has provided Isabelle with added motivation to control her arthritis.
‘It was really important for me not to give in to it, to keep going, so that’s why I moved into education,’ she said. ‘I was very lucky.’
A day with arthritis
Isabelle lives in a single-level house, which has been set up to facilitate accessibility and function. The house was made 'Isabelle-friendly' after having her knees replaced in 2000—which she describes as a miracle—shoulder replacements and hand and foot surgery.
‘A typical day for me involves planning my day and doing as much as I can without getting too tired,’ said Isabelle.
‘When a ‘flare’ occurs, it’s completely different. You don’t feel well, it’s like the energy plug has been pulled out. You lose your enthusiasm to do things, and though it does involve sore joints, it’s also that you’re not feeling well inside.’
During a ‘flare’, Isabelle is forced to take medications to help her do everyday activities, such as having a shower. Although she avoids complete bed-rest, Isabelle does rest more during a flare.
‘The sooner a ‘flare’ ends the better, because more damage is done to your joint every time it flares,’ she said.
Isabelle said that arthritis can affect everyone differently, so it’s important to identify how to help yourself.
‘I know that if I go out too much, and I’ve been busy during the day, that I am really leaving myself open for a flare. Because when I get tired, I am more prone to get more activity from my arthritis.’
Treating arthritis
Isabelle stays informed about medication choices, with the assistance of resources from the Arthritis Foundation (now Arthritis NSW), and stresses the importance of educating yourself about your arthritis treatment.‘You’ve got to have a combination treatment, some drugs are short-acting, some are long-acting, some turn off your immune system so you don’t get the same inflammation. You’ve got to know what you are taking, why you’re taking it and what side-effects it might have.’
Isabelle discusses her medications with her rheumatologist, including new developments that she could try.
‘Of course I am very attuned to the medications that I take, so I know when to get medical advice as to when I have to alter the drugs or what I have to do.’
Exercising with arthritis
Isabelle said that exercise is absolutely imperative for people with arthritis, and many people don’t realise how quickly muscle can disappear if mobility is limited.‘I’ve found that with my knees, I need stronger muscles to get the most out of my joints, so it was very important, before and after the knee operations, to build up the thigh muscle through exercise,’ she said.
According to Isabelle, exercise is a long-term proposition that should be done regularly.
‘You have to be a ‘patient patient’, and not expect a magical response just by doing a few sets of exercises,’ she said.
Complementary therapies and arthritis
Isabelle admitted to being a sceptic, attributing it to her background in Western health systems, but she has tried acupuncture. She has not been convinced by any dietary claims regarding arthritis, although she eats a well-balanced diet and avoids putting on weight.Arthritis and your social life
Isabelle’s arthritis forces her to plan her activities carefully.‘A lot of things that people take for granted, I’ve got to think about them before I do them. I’ve got to think if there’s going to be a lot of stairs, and where am I going to park my car, as I can’t walk great distances,’ said Isabelle.
Isabelle admitted that arthritis can be a socially isolating condition, particularly as her mobility has been more affected in later years.
‘My RA isn’t as active anymore, but I’ve been left with the damage that has been done to the joints,’ she said.
Isabelle said that, although she is lucky to have the support of family and friends, the Arthritis Foundation (now Arthritis NSW) is an important part of her support network.
‘I turned to the Arthritis Foundation to get information. You can talk to people about your problem without them making a judgement—they understand,’ she said.
Isabelle said that people had become more helpful and understanding since her symptoms began to become obvious to others.
‘In the earlier days when I was in a lot of pain, when you couldn’t really see much, people start to think it’s all in your head,’ she said.
‘Now when the deformities are out and I go to the shops, and people see that I have trouble getting the money out of my purse, and that I can’t carry things, generally they are more understanding and helpful.’
Arthritis and travel
In 1998, Isabelle travelled with her husband and 2 friends to Europe. She was experiencing knee and ankle problems at the time, so was forced to wear supports and bandages, and use a wheelchair at airports.‘I still did it, but it’s not easy. It put a bit of a strain on everyone, even though my husband and travelling companions were fabulous; it’s still hard, and it’s socially isolating,’ she said.
Arthritis and self-esteem
Having arthritis can batter your self-esteem if your joints become deformed or medications such as cortisone change your appearance, so Isabelle stressed the importance of building up your confidence with activities you’re good at.‘We all have talents we can use, regardless of the chronic illness we have. For me, it’s coming to the Arthritis Foundation and putting my energy into doing something constructive about the disease, so that I feel good within myself,’ she said.
Educating the community about arthritis
As a person who has arthritis, and tries to educate the community about the condition, Isabelle admits to frustration at the widespread misconceptions about arthritis, and the lack of government support for the cause.‘It is so frustrating for me, as I know how devastating this is to a person’s life. It really does affect the quality of your life, and it is so important that people in the community understand what arthritis is all about,’ she said.
According to Isabelle, one problem is that people tend to disregard arthritic conditions that don’t have the word arthritis in the title, such as gout.
‘People in the community don’t think of them as arthritis; that’s part of the problem.’
Isabelle’s advice
Isabelle said that she advises people newly diagnosed with arthritis to find out as much as possible about their condition, and tells them that it is quite normal to be frightened by the diagnosis of arthritis.‘Sometimes people go into denial; they start rationalising rather than trying to find out as much as they can about the problem,’ she said.
Isabelle stressed the importance of taking control of your arthritis.
‘It’s important to use all the resources available to you, but you also need to think about how you can problem-solve things for yourself, so that you are managing the disease rather than it managing you,’ she said.
‘I take my medication, I use assistive devices, I try to keep as active as I can. But sometimes you’ve just got to problem-solve it for yourself.’
The future for Isabelle
Isabelle is philosophical about her condition, and thankful for the opportunities she has been presented: ‘I’ve been very fortunate in that I’ve led a very full life: I’ve got a family, I’ve got a career, I’ve studied 2 degrees. I’ve really done quite well under the circumstances.’*Name has been changed.
Last Reviewed: 07 February 2001
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