You never know what you can do until you try.

Employment is likely to be one of the most important issues for you, particularly if you are less than 65 years old. Work could be essential for financial reasons or because the job is important in its own right or both. Whatever the reason it is often preferable to continue some form of work in order to have a purpose for getting up each day. Work always brings benefits whether it is for financial rewards, job satisfaction, social contact or all three. People often become depressed through the loss of the working role, and they often lose self-esteem and confidence in their abilities. The longer someone is out of work the harder it is to restart and this applies even more to people with rheumatoid arthritis.

THE BENEFITS OF EMPLOYMENT

A study by Reisine et al1 in 1998 set out to test the hypothesis that ‘employment confers a health benefit to women with rheumatoid arthritis’. Four hundred and sixteen women were followed up after being recruited seven years earlier from rheumatology clinics. Women who were employed had significantly better health outcomes as measured by disability, role function (carrying out everyday roles) and clinical status. The women who did the worst were those who had been employed previously but lost their employment during the study. The hypothesis was therefore correct and this study proves that employment confers health benefits.

Many young rheumatoid arthritis patients will be working when they are diagnosed, but according to research many will stop working very early in the disease process. This is in spite of the move to earlier medical treatment.

One study in Norfolk2 set out to establish the rates of work disability in rheumatoid arthritis patients who were all employed at the onset of their disease. It was found that after two years nearly one third had stopped working. A study of 732 at St Albans3 also found that 29 per cent of patients stopped work because of the disease within five years of diagnosis. It is well recognised that work confers health benefits, yet many rheumatoid arthritis patients give up work early on after diagnosis. It is therefore important to know why people stop working, which people are most likely to stop and what can be done to prevent people becoming unemployed. I have looked at research to find out the answers to these questions.

FACTORS THAT HELP YOU STAY IN EMPLOYMENT

The answers can be given in relation to personality and environmental reasons. They can also be given in relation to the type of work and the changes that had been made to the working pattern. Robinson and Walters4 found out that workers who stayed employed usually had inside jobs that they enjoyed and were motivated to do. They had low absenteeism and they usually did not change occupations after the disease onset.

A study in the USA in 20015 found out that the significant factors for staying on at work were being younger, being self-employed, having a higher prestige occupation and having a higher educational level. The workers in this study also tended to work long hours and rarely missed work. These factors are all associated with the type of work and the characteristics of the workers, but some research has focused on the coping mechanisms that help workers to stay employed.

Research by Chorus et al in 20016 found out that adjusting job demands was the most relevant factor in reducing withdrawal from the workplace. The adjustments made included:

• limiting activities;
• pacing activities;
• being offered new training;
• encouraging workers to inform work colleagues of problems that they were having; and
• having an appropriate job.

These are all important ways of encouraging workers to remain in work. The following section outlines suggestions that may help you to stay employed.

How you can help yourself to stay in work

If you can be referred to an Occupational Therapist then he or she can be of assistance if you need an assessment of your general work pattern and work environment. You can then consider energy conservation, changing positions of work and joint protection in relation to your own situation. OTs may also provide working splints to protect your joints. These are useful for reducing pain by keeping the joint protected and stabilised during work.

The therapist may also ask you to consider changing the way that tasks are organised, or changing the work environment in some way. He or she could liaise with your employer if you wish or they may ask you to contact Access To Work (see below) to assist with the funding of alterations of the work environment. It is helpful to have an OT to help if possible, but if not there may be someone in your company who can help you. You need to consider options for change in your work environment, and in the way that you carry out your work and the type of work that you do.

Access To Work

Access To Work is a scheme that was set up to enable people to stay in work. This scheme can be accessed at the Job Centre Plus which is part of the newly named Department of Work and Pensions. It enables people to overcome various problems related to work. Examples of this are transport, equipment in the work environment and the facilities of the workplace, e.g. social areas or toilets. If, for instance, it is not possible for someone to drive to work or use public transport a taxi may be funded. Alternatively if a machine or a computer needs adapting then Access To Work could help with this. They may, for instance, fund a special chair or a different door entry system or an adapted telephone.

There will be an officer specialising in disability at the Job Centre Plus. These officers have training to assist people with disabilities to find a job and they can also liaise with Access To Work.

The Disability Discrimination Act

The Disability Discrimination Act should encourage employers in companies to make reasonable adjustments for employees with disabilities, such as adjusting hours, altering the job description slightly, making allowances for other staff to help out when there is a problem, etc. The Disability Discrimination Act states that people with disabilities should have as equal access to work as non-disabled workers. An employer must try to find an alternative job if the present situation cannot easily be adjusted to accommodate the worker.

CHANGING WORK

Sometimes, after discussion of the working day, it may seem more appropriate for you to change jobs and/or be retrained if this is possible. At the end of the day health is the most important issue and serious consideration should be given to changing jobs if the present one is detrimental to your health and wellbeing. You may then need assistance with completing forms.

Completing medical forms

This can always be difficult for those of us who have disabilities or a chronic medical condition. Many people feel that if they mention the disability or illness they may not stand a chance of getting the job, and if they do not mention it then employers may try to find ways to dismiss them if they find out about it later. I have found that it is best not to mention it until the medical form has to be completed. At this point include the diagnosis on the form but add positive medical information with it on the form or in a covering letter. Obtain a good health reference from anywhere that you have worked recently, either in paid employment or voluntary work, and this will hopefully make up for the illness. Remember that it is possible to have good health when you have a chronic illness. Many people with rheumatoid arthritis do not tend to catch many colds or other infections to which other people are susceptible.

It is my feeling that the Disability Discrimination Act may be very positive in enabling people to stay on working for their present employers, but it may not be so helpful when new positions are required because employers could be afraid of the responsibility of employing someone who could turn out to be a liability. This is why you need the good health reference.

DISABILITY BENEFITS

Workers Tax Credit

If you are unable to find appropriate full time work and you have a disability then you could be eligible for the Workers Tax Credit. This can top up your income if you have to work shorter hours because of a disability. However this benefit depends on your financial situation. If you have a partner who is working, or if you earn an average or higher rate of pay, then you are unlikely to qualify, even if you do work part-time. If you are single or on a low rate of pay or both then you will probably qualify.

Disability Living Allowance

Another benefit for people who are under 65 is the Disability Living Allowance (DLA). This benefit has two parts, a care component and a mobility component. There are three levels of care and two levels of mobility. Levels for the care component are decided according to the difficulties that you have with daily personal care tasks and meal preparation. The mobility component is based on the extent of walking disabilities, both inside the house and outside. DLA is only awarded to people under the age of 65 although the benefits will still be paid after you have reached 65 if you remain eligible for them after you are 65. People aged 65 and over may be able to claim Attendance Allowance. However there is no mobility part included in this. Neither of these benefits is means tested. People under 65 who are unable to work can claim an Incapacity Benefit (ICB) too.

Pros and cons of benefits

The problem with benefits is that once you start them and stop working it is difficult to restart work, because the benefit system is so cumbersome and slow. If you take work and have to reduce hours or stop it can take a very long time to sort the financial benefits out. The amount of benefit claimed (if it includes ICB, DLA, Housing Benefit, Council Tax Benefit and Income Support) may be more than you can obtain by working. This is not ideal as it discourages people from trying. The only answer in this case is to claim benefits and do voluntary (ie unpaid) work that is stimulating or useful and take up leisure pursuits instead.

There are websites on the internet for voluntary work and it is amazing how many options there are. However funding transport can be a problem if there is no car available or you are not able to use public transport. You could also find out about voluntary work at the library or at the Council for Voluntary Work (CVS).

A PERSONAL SCENARIO

I have never claimed any ICB because I prefer to work and luckily I have always been able to do so. I mentioned that at the time my rheumatoid arthritis began I was at teachers’ training college. During the next three years I worked in a children’s home and then went to college to take my ‘A’ levels. While I was at college I worked part-time in various jobs.

During the next 12 years, whilst I was a full-time mother, I had four further flare-ups but I always intended to resume a career when the children were all at school. I never thought about giving up on work because of the arthritis.

Before my career break I had worked in many office jobs and also as a computer operator, as well as being a housemother in the children’s home. I had not been satisfied by these jobs and wanted to change my career pathway. In order to help with this I had studied ‘A’ levels and whilst I was at home with the children I studied for an Open University degree.

The actual diagnosis of the rheumatoid arthritis happened when I was studying for this degree (although by then I had had the rheumatoid arthritis for about ten years). Luckily for me I attended occupational therapy at this time and decided that this was probably what I wanted to do for my future career. I set about achieving this by obtaining any job that would give me some experience in the right sort of setting. It turned out to be a job in an activity centre for adults with learning disabilities. I also visited my local OT departments and found out as much as I could about the work and the training. A vacancy for a therapy assistant was advertised in one of the departments that I had visited so I applied and was accepted. I really enjoyed this job so I decided to train full time.

All the time I worked as a therapy assistant I was careful never to take time off ill if I could possibly help it. I worked part-time so this made it easier. I needed to show that I had a good health record because I was afraid that I would be turned down for future jobs or courses if it was known that I had rheumatoid arthritis. I was able to obtain good references concerning my health when I applied for university, and also when I eventually qualified and applied for jobs.

Occupational Therapy was a good choice for me because it suits me better in every way than the previous jobs I have had. I find the work satisfying (most of the time) and it also allows me to do a variety of different tasks. This is good for my joints. I drive to clients’ houses to carry out the assessments. I work in the office doing a fair bit of telephone work. I also use a computer, fill in forms, look up information and carry some equipment too.

Changing pastimes

In my leisure interests I have probably had to make even more changes. I have always loved music and used to play the piano. Early in my life I lost a lot of hand function and soon had to give up the keyboard. I then learnt the clarinet, but after 15 years I had to change again and now I sing. Hopefully my jaw will not seize up! I also used to enjoy wine-making for quite a number of years but now the demi-johns are too heavy and, because I used natural ingredients, this became too difficult because of all the chopping, lifting buckets etc. Sewing and knitting puts too much strain on finger joints so they stopped many years ago. I also used to love sports and was good at athletics and racquet sports. I did keep up badminton until about seven years ago even though I was never amazingly good, because all the time that I played I had little or no wrist movement! I used to play by tactics and I could run quite fast, though I did not play competitively but only for fun. I have always swum regularly and although I am now not a fast, strong swimmer any more I do still enjoy gentle swimming as well as stretching out all my joints in the water.

AVOIDING THE DOWNWARD SPIRAL

It can be depressing to have to stop doing things that you enjoy and are good at but it is really no use continually getting upset about what you cannot achieve. It is necessary to find another way forward because basically you do not have any option. The alternative is to get more and more depressed and do nothing at all. It is then that you will enter the downward spiral (see Figure 17).

People with rheumatoid arthritis can very easily enter this downward spiral. This is because the experience of pain and loss of function can quickly reduce the activities and roles that people usually undertake. Loss of roles and activities can then lead to muscle weakness, loss of

movements at the joints, depressed mood, loss of selfesteem and self-confidence, less social contacts and reduced income if they lose their job. It is therefore essential that RA patients learn to adapt and find ways of achieving a fulfilling life and escaping the downward spiral.