It was always a burning ambition of mine to enter the world of paid employment. However, developing fibromyalgia at the tender age of 19 did not leave me much opportunity for a career before experiencing my first symptoms. At first, nobody knew what was wrong with me so I stubbornly ploughed my way through university waiting for this miraculous recovery the doctors kept promising.
Four years on, I was eventually given my diagnosis and had to come to terms with the realization that the miraculous recovery would not be forthcoming in the near future. My degree, in the end, took me five years to complete, due to having to drop out twice to spend time in hospital. By the time I graduated I was physically and mentally exhausted and took my doctor's advice to have some downtime for a year.
During this time I had many conversations and received much advice on what type of career I could consider pursuing. However, my family and I could rarely come up with practical solutions for how employment could actually be achieved and maintained. I kept asking myself: who would employ somebody who requires so much sick leave? Can I seriously consider applying for a job when just dragging myself out of bed in the morning seems a task in itself? The pain and fatigue of fibromyalgia can be overwhelming, and at the time, I could simply not imagine what job I could do that would not irritate my symptoms further and be flexible enough to allow me the time off I knew I would need.
Research studies carried out to assess the importance of work for women with fibromyalgia seemed to indicate that I was not the only one with these thoughts. In the year 2000 Swedish researchers Dr Henriksson and Dr Liedberg interviewed 176 women with fibromyalgia regarding their symptoms, sickness benefits, work situation, work conditions and adjustments, opinions regarding their own work ability, and satisfaction with the situation. These women reported the classic symptoms of fibromyalgia: pain, poor quality of sleep, abnormal tiredness, muscle stiffness, and increased pain after muscle exertion. Twenty-three percent gave fibromyalgia as the main reason for not working, which seemed very justified to me.
However, to my surprise I read that 50 percent of these 176 women were employed, 15 percent full-time. How did they do it? Fifty-eight percent of these working women went on to explain how their work situation had had to change due to their symptoms; they were obviously having to make modifications and perhaps move from full-time to part-time work. The study concluded: "The majority of women with fibromyalgia have limitations in their ability to work. The results indicate that individual adjustments in the work situation need to be made and that women who have found a level matching their ability may continue to work find it satisfactory."
A follow-up study by the same researchers was carried out in 2002 and reached similar conclusions: "The ability to remain at work depends not only on limitations in work capacity, but also on the capacity of society to adjust work environments and work tasks. More individual solutions are needed to allow women with fibromyalgia to maintain work roles."
These two studies clearly indicate that employers need to be prepared to be flexible and to allow people with physical limitations to work within their own capacity finding individual solutions to the various problems they encounter. Of course, working with an employer is always going to be tricky to some degree: they want someone who can get the job done on time and may only be prepared to compromise on certain issues. However, employers are beginning to realize the value of workers with physical limitations (encouraged by the Disability Discrimination Act) and are becoming more open to providing solutions.
Being realistic about my own physical abilities and trying to find solutions to the many obstacles in my path set me on the road to finding employment. One of my main issues is not being able to type, due to the repetitive nature of the actions involved causing severe pain in my hands, wrists and elbows. To overcome this obstacle I have learnt how to use voice activated software and have discovered great satisfaction in learning how to control my computer completely by voice as well as dictating the words I wish to get onto paper. Despite this obstacle being overcome I still lacked the confidence to launch myself onto a career path. My solution was taking up voluntary work.
The marvelous thing about voluntary work is that you are totally in control; you are the person giving up your time and you can experiment with how many hours you can work in a day, in a week or in a month. I started working a few hours a week for the Fibromyalgia Association UK, writing science articles for their quarterly journal. Since it was a quarterly journal, I had ample time to do any research I wanted and to work creatively as and when I felt I could—without a deadline hanging over me. Producing these articles gave me great satisfaction and I gradually grew in confidence and agreed to take on further responsibility. I took over coordinating their Medical Advisory Board and running a local support group, and eventually agreed to become a Trustee.
These progressions took place gradually over about five years, by the end of which I had enough confidence to believe that I could look for paid employment at a part-time job, working about 16-20 hours per week. The thought of having an employer still troubled me as I still woke up some days knowing that that day I would get no useful work done, and the thought of having to keep to somebody else's time schedule worried me.
In the end I decided that the obvious solution was to become self-employed: I would then be able to organize my own time which could be as flexible as I could wish it to be. I could rest in the morning, work in the afternoon or reverse the schedule whenever it suited me. Also, it would mean I could work from home and not have to travel, which I knew would use up quite a bit of my energy. Self employment is not an absolute ideal because you aren't paid when you can't work and you have to go out and find the work. However, these considerations seemed to be worth the flexibility I would be gaining. So far, things are going okay and I am enjoying a new independence. However, I know that if my symptoms flare really badly I may have to step down for a while and go back into the benefit system. For me, it is worth the risk and gives me a great deal of satisfaction. Also, I am in a position where I can take risks, having no family as yet to provide for.
But women with fibromyalgia do not need to enter paid employment to gain satisfaction in life, as another study, published in 2004 by American researchers, revealed. This study compared employment and the quality of life between women with fibromyalgia and healthy controls. They discovered that the employed women with fibromyalgia reported a better quality of life than those with fibromyalgia who were not employed, but only relating to their physical health rather than their psychological well-being.
This indicates that women who choose not to work or who are simply too ill to work do not have a diminished quality of life. So often in society we are defined by what we do rather than who we are, and people fret when they can't put us in a defined box. I struggled with this following my graduation, knowing that all my friends had jobs and the first question somebody always asked me was: "What job do you do?" I began to dread this question and would either choose to ignore it or make some kind of joke about not having decided what I wanted to do yet. It made me realize that it was very important to value myself for who I was, rather than what I did. Also, some people who blithely ask this question do not seem to appreciate that voluntary work is as valid a job as paid employment, and that bringing up a family and keeping a house is a full-time job in itself!
Deciding whether or not to enter paid employment or to remain in your present job when you have fibromyalgia can be a very difficult decision. Many factors can come into play—not least, the severity of your symptoms and the impact they have on your daily life. Some people have no choice but to continue working. In this instance the best solution is to modify your job in any way you can suit your needs better, whether that be more flexible hours, better equipment for posture and comfort, or learning new techniques to perform common tasks. If you have a burning desire to work like I did, but lack the confidence, voluntary work is the ideal solution. If you decide you simply can't or do not want to do paid work, then this is business but your own.
Don't let other people's expectations define you. You are who you are—whether you are busy doing or simply being.