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The Fibromyalgia Magazine. Year 15 Issue 10 August 2015.

My Personal Story - by Karine Chevalier-Watts

Too often, in support groups or in the press, we hear of FM sufferers being too tired or depressed to work and it becomes a vicious circle; the FM sufferer has got to quit their job because they’re genuinely too exhausted to stick to its pre-set requirements, bosses are not particularly sympathetic to their needs and are reluctant to bring any meaningful changes in the workplace to accommodate their sick employee who finds himself/herself feeling undesired, a “burden” to their company and being more or less unceremoniously discarded as they are no longer seen as befitting the structure of the company. It then becomes terribly hard for the middle-aged FM patient to find new employment, especially in a recession when so many young and healthy people are looking for first-time jobs and employers are after cheap labour.

I would very much like to encourage people with Fibromyalgia not to give up on work completely; it may be devastating at first to realize that you can no longer do a job that you have been doing for years due to your new condition and it might indeed be difficult to get back into employment with many obstacles in the way but it’s certainly something worth aiming at. You may not be able to do exactly the same job, for the same company, at the same place, at the same hours and you may indeed need some adjustments to your work and lifestyle but instead of thinking that your career/life is over as I once though mine was, consider it as a welcome chance to try something different that will fit in better with your new requirements. It is just like the saying about one door closing and another opening…

Faced with the difficult predicament of changing jobs, you will need to question yourself honestly about what it is exactly that you can no longer do so easily and ask yourself what it is that you could still happily do if the circumstances were right. If the perfect job is not already out there for you, then it might be a question of inventing it yourself to suit your own requirements. This is the route I chose.

Of course, I still suffer from Fibromyalgia on a daily basis and take adequate medication for it. I used to rely a lot on Tramadol and Co-codamol tablets to keep me going but recently, I have started Butrans skin patches which are morphine replacements and easier to take with my hectic lifestyle. I couldn’t find much improvement to begin with but after a month, I have started to feel much better and not having to take so many painkilling tablets now. My rheumatologist believes I am still doing too much and I should learn how to pace myself as I’m still working very hard and often long hours but at least, I love my job and am not stuck to fixed hours of work; I am able to work from home a lot of the time, so don’t have to rush in the mornings to get ready to go to a work place far from me; I can choose my days and hours of work and can alternate between different jobs so I am not physically stuck for hours in one position only (either standing or sitting). It has improved my social life as I’m able to get out of the house and meet clients or associates and has dramatically improved my self esteem and mental well-being. I no longer have to disclose to anyone that I am disabled (unless I wish to) and people are usually stunned when they find out the truth as they see me being so active, happy and successful.

I think that there are unfortunately not enough role models for people with Fibromyalgia…There are no famous people, actors, singers, politicians or business people with the condition to openly speak out about it and break the taboo. We are implicitly told to keep quiet, not to make a fuss and there are still so many people who don’t know about the condition or are mistaken about it. We have been called “lazy”, “weak”, “neurotic” and it has been progressively distilled into our brains that the likes of us are not necessary to society, that we are a bunch of “spongers”, “moaners”, “benefit seekers” and “parasites”…I have also lost track of the number of times that I have been confronted by able people about parking in disabled spaces with my Blue Badge (the only “benefit” that I get from my disability). They see someone who looks fit and presentable, driving a nice car and they automatically assume that you are a fraudster. There is still too much prejudice and misconceptions about Fibromyalgia sufferers and I think it’s time to speak out and make a stand for ourselves to hopefully see some real positive changes in society and especially in the workplace to accommodate us at last.

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