I'm an Employment Lawyer and my partner, Jan, has suffered with Fibro for the 8 years I've known her and from her younger years. I've had to work really hard to understand it and support her in everyday life let alone understanding how this affects her working life. So I'm concerned...
The concern is, because Fibro appears to be a "hidden" illness with very definite external consequences, how people are coping with the pressure of work and furthermore how employers are responding to the illness.
I'm interested in understanding this illness from an employees point of view but in particular how they are coping with AND being treated at work. Work should not or ought not to stop because of it and perhaps employers need to be alive to the thoroughly debilitating nature of this condition.
To that end I'm wondering whether you would benefit from a Fibro at work "group"? Is that what you call it? Where people can write and share their experience purely from a "working" view point.
Perhaps you would like to comment.
Kind regards
Steve
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WorkLife67
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your dedication to understand Jan's condition is commendable I have seen and heard of so many partners persecute their wife because of fibro, in there lack of understanding and readiness to grasp the common misconception that it is,
"All in their head"
It seems to be a constant battle for most people with fibro to understand the condition themselves and to this end the present attitude of the medical establishment seems to be at least wanting of a review.
Until this happens I think it unlikely that much will change in the workplace.
Thanks for your reply. I agree being an "expert patient" with this condition is a real challenge and seems to take years to understand. Jan is fortunate in that now she has a regular monthly GP appointment to discuss matters. Additionally, she has a Consultant at the rheumatology department who help to monitor progress and medication. They even have a Fibro wall which you can read. I attend all her appointments and listen with interest and ask questions myself.
But one of the challenges is to ensure the workplace management understand this as a disability and not general sickness. it can be defined in law so that employees can get protection from Employers who may take a hard line or harsh view of it.
I'm have fibro and was only diagnosed last week (suspected for quite a while), my sister also has fibro.
Whereas my sister has given up work and sees everything so negatively I'm the opposite. I'm determine to control this illness and not let it control me.
I work 30hours a week and am going to continue to do so. Last week I told my boss that I have been diagnosed with fibromyalgia and the first thing she said to be was 'let me know if you need to reduce your hours'! I've been gradually getting worse over the past 6 months and managed so not going to reduce them now.
I think a forum for working fibro sufferes would be brilliant. I for one don't know where I stand now.
A forum post regularly about working with Fibromyalgia is a brilliant idea.
Only 2 weeks ago, I was asked to leave my position at work, as my walking, standing was getting worse. Until they can find me another position within NHS local hospital I'm not working or earning any money.
I was never given a contract so worked on Zero hours 😞
I'm glad you have a positive approach to your physical condition. I really believe that helps with coping strategies.
So far as work is concerned it is important Employees understand the obligations an employer are under once they have been made aware of ANY disability. To cut the story short they have a duty to make reasonable adjustments to any person's working environment in order to assist there working life. For example; if there is no or limited access for wheel chair users then they have a duty to make reasonable adjustments in order to assist that employee.
I have heard very mixed stories during my time on the forum. It would appear that employers are very mixed in their reactions and actions toward Fibro.
Although it wouldn't help me I think it would be a good idea. I am now self employed and have the fortunate situation where I can adjust my hours around my pain. There are odd times when I can't get cover but on the whole I work when I'm able. However I used to work for a very large organisation for the last 4 years or my employment I was seconded out to a union as a permanent full-time health & safety officer. The company's management at top line was very progressive and wanted to do the right thing. They paid for my exams and courses and were very supportive. But I spent the majority of my time fighting middle management who just did not get this whole disability v sickness thing. If they could get away with anything they could and trying to teach them the right way was like climbing Everest. So there is a great need out there awareness & education is a real must. Good luck I hope it takes off. Oh I left the job as I wanted to work with my partner & before my own diagnosis. Just for the record.
Hi, as a small business owner with Fibro I see this from both sides. Any illness and absence causes us major problems. In our busy pharmacy the unplanned loss of any employee is very difficult to cope with. We've had absence for all sorts of "hidden" problems over the years and striking the balance between sympathy for the employee and the needs of the business is very frustrating. Fortunately we haven't ever had to dismiss anyone for medical reasons.
I've only missed a couple of days through Fibro but overall it has a huge impact on my performance at work. As many people know being told "you look well" doesn't exactly help!
I honestly don't know how we would cope with an employee with Fibro (or any other long term similar problems) We'd bend over backwards to help but I could see that it may be too difficult to accommodate long term illness in a small business.
im very lucky to be working with physios and OTS. I have kinda become one of my clients so I have a good in site to my condition n how to hopefully manage it.
I have had to cut my working week on half but determined not to give up...as u know it's about pacing and managing the condition so even though it's still difficult I have to get up n work 3 days but then get a lot of help from my daughter at home so that I can get back some energy for next day work...on the days that I don't work I do find I'm exhausted and rest a lot...hope this helps....im quite new in the journey so I'm following instructions to manage so that I hopefully don't get worse...I also take regular pain relief to be able to function..
This would be an excellent idea and one I would subscribe to. Having being diagnosed with Fibro and Undifferentiated Connective Tissue Disease last October (although possibly had it for years) my biggest challenge so far has been my job. Although I have not had a single days absence with the issues Fibro brings up and an impeccable personal development review record in the nine years I have worked for this employer I know find myself fighting for my job. Only since telling HR and my boss have issues been raised about 'my performance', I am at my wits end and getting really paranoid about every piece of work I do, expecting it to be scrutinized and commented on, this is no way to have to work. I have been a secretary now for over 40 years and never has my work been criticized. HR wrote to my GP to see if they could help with any changes (with my consent), my doctor wrote a very fair and balanced report and had not suggested anything I had not been receiving already (i.e. work from home occasionally) but to my amazement HR and my boss has trawled over the report and picked up on Fibro fog and seem to want to make reference to it over and over, my boss has now made suggestions that I cut my working week back to three days, saying that the job could be done in three days a week, which I feel would negatively affect my work and earnings, whilst not significantly improve my health. I have never asked for a 'get out of work' card and never will and feel very disappointed that I am being treated this way.
I don't think there is enough information out there for people who are trying to keep on working whilst dealing with this truly awful condition.
Any advise anyone can give will be gratefully received.
So far as work is concerned it is important Employees understand the obligations an employer are under once they have been made aware of ANY disability. To cut the story short they have a duty to make reasonable adjustments to any person's working environment in order to assist there working life. For example; if there is no or limited access for wheel chair users then they have a duty to make reasonable adjustments in order to assist that employee.
In your case the question of reducing your working week would need to be reasonable in the circumstances. Firstly, are they right, can it be done in 3 days. Secondly, is that a reasonable solution given its financial effect. There is a legal framework that needs to be followed and if they don't you can begin the process by raising a grievance.
Thank you for responding and I have taken onboard your comments.
If I can explain further, for the past 9 years and until very recently I have regularly been working overtime. Only when the mention of Fibro the 'opportunity' to work 3 days instead of 5 was mentioned to me. The way it was put is that the company is changing and there are going to be consultations, if I were to go down to three days now, it may exempt me from consultation. Of course all this was said 'off the record' by my line manager and was told to consider it and we would discuss later.
I don't want to make waves by raising a grievance, I just need some semblance of order to prevail, I have not taken a days illness and have not asked for anything that wasn't in place already (i.e. occasionally working from home) it really is 'business as usual' on my part, and as I said in my post earlier three days a week working would only mean cramming in 5 days work into 3, which has the potential to affect my work, stress levels would soar affecting more of my symptoms and I will have less money to boot!
My initial point was that once they found out about Fibro fog they have 'picked it up and ran with it', it seems like everything I do is being scrutinized just waiting for me to make a mistake (which last time I checked everyone does at times) and then take that opportunity to pull the rug from under me.
I fear that Fibro strips you of many things, but I will fight as long as the fight is in me to keep my independence. Reading many a blog on here has shown me the options of not working and it's not a road to go down until I absolutely have to, and that should remain my choice I feel.
So you must of read my post regarding being asked by occupational health to do a full report on where I was working which was a building falling apart, steps that were so badly worn that when O.H. Submitted their reports to my manager, 5 months later! I was called into the office and told it was too dangerous for me to work there and had to leave immediately. Being on no contract even though I'd been working on the bank for 4.5 yrs it was on zero hours.
So im at home, increased my antidepressants and cry all day long.
I loved working, only 52yrs old, and felt I was treated like a criminal.
Fibromyalgia is my worst friend in the whole world.
Plus if life couldn't any worse, my daughter has mental health problems and I'm due to have a colonoscopy on Tuesday so bowel prep on Monday. If you've never had it you wouldn't understand.
Thank you for taking the time to respond to my first post.
No I don't work for NHS, I work for a large construction company Zero hour contracts are something else, mainly a smokescreen for government statistics. My heart goes out to you for what you've endured. I can also empathies with you regarding colonoscopy, I had endoscopy and colonoscopy together and the prep is an absolute nightmare. I will be thinking of you on Monday.
Don't see it as negative, just realistic - it works for me.
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