Fibromyalgia and working

[PVYXAAEI]

I am considering telling my employer that I have Fibromyalgia. I was not going to tell them as I do like to keep some things private , also I am newly diagnosed and only just understanding my condition myself .I wondered from other people's opinions did you tell your employer? What was there reaction ? And what reasonable adjustments did they put in place that has helped you ?

[CheetieCat]

Hi

Fibromyalgia does come under the Equality Act so making your employer aware, in my opinion would be sensible. With regards to reasonable adjustments it very much depends on your role and your personal needs.

An occ health assessment is usually a good start and their focus is very much on keeping you employed in your role while finding small adjustments to make it easier for you to continue. Nothing to worry about, they're really nice and very positive.

Personally my job is very much hands on and can be quite physically demanding so my working hours are reduced with more rest days between shifts. It's exhausting but so far I'm still managing.

Whereas an office worker may require adjustments to their work station, more breaks to move away from sitting at their desks too long, parking closer to office, different working times to avoid rush hours or Flexi working etc ... All depends on how you are, how you are coping.

Hope some of this helps x

[PVYXAAEI in reply to CheetieCat]

Thankyou very much for your reply . I do struggle on some days but tend to keep my struggles to myself . I think you are right though it would be sensible and makes sense to make my employer aware of my condition

[Yoyo2024]

I definitely recommend telling your employer as even if you feel ok at the moment they’ll be aware of you have a flare up or need extra resources down the line. This also means they can put in relevant recommendations for you based on occy health or other similar departments who can make recommendations to support you while at work and reduce the stress of working (where possible)

I told my head of school a few weeks after I was diagnosed as a just so they’re aware and they were amazing about it. They sat me down and we talked through what the symptoms I have are and how they as my boss can help me in the workplace. She listened more than I thought and got me special equipment that can help reduce stress on my joints (ergonomic mouse and a more comfy chair than the standard office issue along with a standing desk so I’m not sat all day). I’m free to take as many breaks as I need and don’t worry about the impact it has on my hours as I always have a lot of time owed back. They also adjusted my work schedule so I can work from home or do a few hours at home and come in later once traffic is not as bad so I can sit down on the bus.

If there’s one or two people you really trust in your job, maybe tell them and they may be able to help you a little when you’re struggling without others noticing too much if they have capacity to? It can be hard to tell people but it does make the world of difference. I’m here if you want to talk about anything!

[Dinkie]

Please tell your employer, they can't help if they don't know. Colleagues are more likely to be sympathetic if they know something is affecting you.

Your employer may ask for you to see an occupational health specialist. I fought against it but it was the best thing that could have happened. My employer was more than happy to put in reasonable adjustments as recommended and I am still in work now, even after reaching state pension age.

[Berryzzz]

Definitely!!! tell your employer, I unfortunately didn't have a good time when I told mine earlier this year. I work in a school and had to get my union involved as they were trying to make my job harder in the hope that I would quit. It has definitely put a strain on my working environment. They have never sat with me and asked what I need or how they can help. On a positive note, as a protective disability I do feel better protected when I have time off, I was in a car accident a few weeks ago. I wasn't hurt but the stress caused an almost instant flare up. I did go to work later that day but nobody asked if I was OK, this development into full widespread pain and migraine, I took a day off to reset and didn't worry what they would say as I now know I have the law on my side. They have made one improvement thanks to my union environment which has benefited my fellow workers, for anyone who works in a primary school they will know that grown adults shouldn't be forced to sit on chairs built for 5 year olds, we all now have a much healthier option that is helping myself and others.So... Definitely tell them, everybody doesn't need to know, maybe a few close trusted colleagues. Good luck!

[PVYXAAEI in reply to Berryzzz]

What do you mean when you say "protected disability " ? Thanks

[Berryzzz in reply to PVYXAAEI]

Have a look at the equality act 2010, fibro is now recognized as a disability, protecting you from discrimination, meaning your employer should make reasonable adjustments to your workplace and sickness levels.

[PVYXAAEI in reply to Berryzzz]

Thankyou very much I will take a look

[Gulfstream_Maggie]

TBF I haven’t had the best experience telling either prospective employers, when applying for jobs, or employers, when in work. However I will continue to tell them as it affects me and them in the long run.

At the moment my current job is in retail sales and I’m finding it really tough. Although only 20 hrs a week I’m on my feet for the total shift.

By the time I go home I can hardly move out bend I’m so stiff and painful. Mentally and physically exhausted, not really sure it’s for me. So still looking for p/t office job.

Sorry I can’t be any positive help but so far my experiences haven’t been that good!

[luckylou52 in reply to Gulfstream_Maggie]

I work in retail for a big supermarket and they have no sympathy at all. Just discipline people for being ill. They know I suffer with fibro but have made no adjustments and occy health were just useless.

[Entela15]

I let my employer know when it first started and they have been understanding. There have been ups and downs along the way and I have reduced my working hours as I can’t work full time anymore.

It’s traumatic enough to live with it and they should know and make necessary adjustments for you.

[Mires]

I told my employer, I was wanting to reduce my days but as a coordinator you shouldn’t do less then 3 days, I wanted 2. They said they would rather have me 2 days than not at all, my staff have also been amazing. I hope you get the understanding and support you deserve.

[2hot]

I recommend telling your employer. Sometimes you won't be able to work at all. I know my fibro progressed quite gradually but towards the end of my employment I was having to take quite a lot of time off (for me as I always went in no matter what) to recover when we had stressful weeks. As they knew I had the condition there was nothing they could do about it with regards sanctions. My employers were actually very good at the end but initially they weren't and there was some unpleasantness resulting in the Union getting involved. I had that back up because I had declared it. If I hadn't It would have been worse.

I understand you want to keep things private. Your employer has to keep the information private from the rest of the workforce but it really is better if you let them know. Good luck.

[KraziekLou]

Hi, there’s no harm telling your employer, I did that five years ago as Fibro made a massive change in my life, but it made a lot of sense. Lots of adjustments were made, part-time etc. Fibro is a disability. If it’s affecting you ability they need to understand why.

[PVYXAAEI]

Thankyou so much everyone for your replys and you have all made my mind up that I will speak to my employer . My thoughts are that initially they will be supportive but it will become tricky or difficult if I need to take any more time off . They won't want me taking time off work

[Yassytina FMA UK Volunteer]

Hello and welcome , helpful replies from members here. I hope you find the forum helpful, take care x

[PVYXAAEI]

Just so I understand this correctly . Usually if we are off sick at work we go through different stages of sickness e.g stage 1 , stage 2 , stage 3 etc etc this would include warnings and eventually dismissal .So because Fibromyalgia is classed as a disability and comes under the Equality Act does this mean that when I am off sick due to Fibromyalgia flareups my employer can not give me warnings and put me through those stages of sickness that they usually would ?

[Puptours]

I got diagnosed in feb, started a new job in may. I wasnt going to tell them until i couldnt help with the heavy delivery! My boss was/is fine & understanding. The guys lift the heavy stuff. I also have back issues.

[Hazel_Angelstar Administrator FMA UK Staff]

Please have a look at our employment booklets at fmauk.org/publications

There are 2 - Employee and Employer and can be accessed online or a printed copy can be sent out from the office

[PVYXAAEI in reply to Hazel_Angelstar]

Thankyou

[Bliss19 FMA UK Volunteer in reply to PVYXAAEI]

Beat me to it Hazel 😀

[PVYXAAEI]

I have just had a read through the information sheets on those links . They are brilliant and explained things really well . Thankyou so much

[TanzT]

Definitely think you should tell them. My previous job role within the local County Council did not understand it all but my current line manager is brilliant.

Honesty is the best policy.

[Al10]

A while ago now, but I wasn't ready for everyone to suddenly feel they could have an opinion on my health and give advice.

I wasn't ready for how it would make colleagues feel both resentful and threatened. Resentful, on account I would get adjustments made, how others would feel put upon that I was 'slacking' not always having to do certain duties. Also threatened because when I wasn't 'Slacking', and doing just as much or more than others, they could see, they should be doing more because I had limitations and they didn't. It made for a difficult stressful working environment.

What ever I did, it upset some of my colleagues.

My employers also found it irritating. I just had to ask for what I needed (being reasonable, of course, with an eye to costs etc) but of course, I didn't know what might help. What would help you mid flare? It was as though any adjustments were expected to be a cure. Eesh, imagine if fibro was that easy? They soon resented money spent on adjustments that didn't 'work'. (Is it working? How do you feel?) At that time, there was no advice to be had over what might be helpful.

Of course as everyone got caught up in their own anxieties and issues about how my health affected them, so I got more and more stressed. The atmosphere became toxic and I couldn't fix it.

I was told that a decent person, unable to do all the duties the job demands, ought to do the right thing and leave, gracefully. Presumably, I could live on fresh air once I was unemployed? As I flared more and more, possibly due to the constant stress, I couldn't see my way forward to a better job that I could manage. It was silly because on the whole, my job was a job that suited my fibro. I just needed a few adjustments, without all the attitude.

If you tell your employer, just be ready for them to be human and feel threatened. They will likely think, 'Oh God! What does this mean for my bottom line and getting the job done.' They may feel they have a right to discuss your medication and other protocols, and think it OK to insist you stick to them (as though anything actually works?) or make recommendations. If you are unlucky, they will look at your packed lunch and have an opinion on the food you eat and so on. You kinda owe it to them to do all you can to be well? We all know everything we eat these days is a problem, esp if you are a fibro!

I was accused of not trying and not wanting to get better. My Fibro was seen as a defect and weakness in me. Better people, stronger decent ones, would never weaken like I had done and if they did, they would get treatment and get well. People with fibro are just ones that don't want to get better!! All that is needed is a PMA...

Most job applicants know to big up their good points and skate over the rest and there is a reason for that. Most employers have had experience of useless employees and don't want any more. Telling your employer you have become their worst nightmare should be done with care. Be ready for people seeing you very differently.

Likely things are better now as Reasonable Adjustments have been around for some years, but I wouldn't be the farm on it. People are still people.