Work still doesn't understand

[gyppyjoo]

Hi guys well I followed the excellent advice given in response to my first post and I attended my meeting with HR and manager but I feel very deflated. At the suggestion of my union rep and citizens advice I typed up a statement about my situation for the past 3 years and how the fibromyalgia has affected my working life. The HR person seemed to know very little about the condition and said my previous 3 sicknesses were not linked to fibro. I was so frustrated every ailment is linked the fibro doesn't go away because you have a chest infection it actually makes the chest infection worse as you have all the aches. pains, IBS and migraines as well as the fibro. The HR person then said they have a legal responsibility to acknowledge fibro as a disability and if I was off sick because of fibro then it would be looked at in a different way. Perhaps it doesn't pay to be honest perhaps when I feel really poorly again I will ring up and just say I am having a bad attack caused by fibromyalgia. I feel quite tearful now and struggling to cope at home. I saw the GP earlier this week and he wanted me to reduce my dose of amitriptyline as I didn't seem so depressed then I reminded him that he had prescribed it to try and help with the fibro. He agreed to keep me on current dose then went on to ask how my husband was!!! Am I wrong to think this appointment was mine? One thing the sun is shining and that makes me feel brighter. Wendy

[lynn17]

It's so hard when you have to work i still do but only 26 hours a week I find that this is plenty for me. I used to on checkout all the time but I'm move onto a new department soon so I'll be moving around more.

Sending you hugs

Lynn xx

[gyppyjoo in reply to lynn17]

Thanks Lynn I have really benefitted from posting on this site I just used to read all the other posts but now I feel part of the group and better still not alone. I only do 2.5 days but I am expected to attend evening meetings on a regular basis. I have suggested that I take a down grade which would mean at least I wouldn't have to do these late meetings. I think they may be considering it as I am always the one that volunteers to do the jobs no-one else wants to. This is because I don't want to seize up and want my mind taking off my aches and pains and I hate not doing something. A few others will pretend they have work to avoid these jobs but they have to be done so I get on and do them. Thank you again for your support love Wendy xx

[carol789 in reply to gyppyjoo]

Hi Wendy, sorry to hear your work like mine are so unaccepting of Fibro. I am enduring a long horrid painful phase, but it is easing, having some good days now.

I got so depressed as I was feel I g hounded as even tho on sick, kept being Invited to back to work meetings and e-mail's, was feeling never being left alone to get better. Some of my family don't understand Fibro, so, I decided to go to counselling and also MIND - as kept getting those type of comments, it's all in the military d, do more exercise, get out and socialise etc.

Well what I am getting at is , there are usually advocacy organisations to help disabled people by attending meetings and speaking up for them, as if like me, during anxiety situations, I lose my wording and forget what to say. Here we have Access to work and Dewys.

You're lucky your union seem helpful, mine wouldn't attend any meetings, said I'd be fine ?

I hope all works out for you, please try not to worry and spoil your weekend. Best wishes, Carol x

[BlueMermaid3]

Hello Wendy

I am so sorry you are going through such a difficult time at work.

So many of us have been in the situation you are currently in.

Is there anyway that you could reduce your hours at work and claim ESA?

Why on earth your GP is asking how your husband is quite honestly is shocking!

Are you able to see a different GP at your practice?

Have you been onto the mother site? You can request that an information pack all about Fibromyalgia be sent to your GP. You will find it here fmauk.org

Good luck and let us know how you get on.

Lu xx

[gyppyjoo in reply to BlueMermaid3]

Hi Lu

Thank you for your reply I only work 2.5 days but I do have to attend evening meetings which really take it out on me as you are sat in one position and as I take minutes its hard to move around. I do feel quite angry with my GP as we have 2 new drs out of 3 and before these started I had an excellent relationship with my old GP. It seems they are under a new regime where you have to stick to your10 minutes and all notes are typed up while you sit there. I have tried one of the other drs but it may be worth me trying the other one. Currently they make me feel like I am wasting their time. The only way I got diagnosed last year was because I wrote a weekly diary for a month and left it with the GP to read. I think your suggestion about getting the information pack is good and I will do this. Thanks again for your support it really does help.

Wendy xx

[BlueMermaid3 in reply to gyppyjoo]

Hi Wendy

You're very welcome my friend.

I have experienced something very similar myself. Whilst working in my last job I had several very severe traumas happen to me, but my boss called me into his office and said if I didn't "get back to work immediately" that there would no longer be a job there for me.

I contracted Pneumonia and had only been off for 5 days when he said he was sending me to Occupational Health! At my age (56) it can take over a year to recover fully from Pneumonia.

I couldn't handle the bullying that was going on and the stress and in the end I just left.

I worked my whole life (for 34 years) and have ended up through no fault of my own having to rely on benefits. I hate it and the "label" you automatically get that you must be a scrounger.

Finding a supportive GP is half the battle with Fibromyalgia.

I used to have a brilliant GP until I moved to a new area.

I have been asking for blood tests for nearly a year. I finally had them a couple of weeks ago and I am severely anaemic. Well what a surprise, I could have told them that!! No wonder my fatigue has been beyond control.

You can have that pack sent anonymously or say that it has come from you.

I'd see a different GP. What do you have to lose?

Lu xx

[Hidden]

To know the doctor is asking about your husband doesn't seem right I would take a look at FMAUK.org as BlueMermaid3 said the information with definitely help with your Manager. I do hope you manage to relax and get some pain free time good luck

[Little-e]

When you book sick can you not just say Fibromyalgia Flare as the 'illness' and not elaborate any further?

[furgus]

I take a different view about your GP asking how your husband was. I think it depends why they were asking. It's possible they were concerned about how your husband's health might be affecting you. This will only be relevant if you have either mentioned your husband's health in your own appointments or if you've attended appointments with the same GP with him. Obviously confidentiality is important and if your husband has attended appointments alone and you've never mentioned him in your appointments then I don't think the GP should have asked about him during your appointment.

My GP often asks me how my dog is during my appointments. I know she's not concerned about my dog's health. She's aware how much my dog means to me and knows it would impact my mental health if I was worrying about my dog for any reason. Just looking at the bigger picture I suppose.

[rosewine]

This must be so upseting for you. I've been there and worn the T shirt as they say and when you are so low it seems so difficult to fight them. I find evenngs are when I feel so tired and achy and I can imagine having to attend evening meetings would be the last straw.

I am just wondering like furgus whether your GP was asking about your husband for a different reason than you thought but of course I don't know what your personal circumstances are. I had been with the same GP for about 30 years and my OH was also his patient. I had never had great health but had always worked and at a job I loved so he knew when I actually accepted a sick note without any resistance that I was really ill. He used to ask how my OH was for two separate reasons, one was that he had been extremely ill with severe anxiety and depression and he wanted to know the true facts about whether I thought the treatment he was having was helping and two to ascertain whether the strain of trying to work to bring in the money and also caring for my husband on top of trying to help two of his family members who were also sick was contributing to my illness and for no other ulterior motive. If there were no reasons like that then yes I wouldn't be best pleased either and if that is the case I would see if you are easier with the other GP. Good luck with it all.x

[TheAuthor]

Hi gyppyjoo

I really am so truly sorry to read of how you have been left feeling my friend. I would ring in work from now on and say it is Fibro related when you are not well? I am also so truly sorry to read about your GP visit, it did not sound like it was any help at all. Try and make the most of the sunshine, I think it is the best medicine we can have!

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[Al10]

Isn't it splendid that people with no knowledge get to have a say in your condition? Having a cold is nothing hey? Ask people here if that is so, they may say different. Sure, I can manage a cold. . . right up until my ribs and tum are aching so bad with coughing, I'm scared of the next bout, or worse my intercostals are tweaked and painful too making it painful to breathe and how long will those pains last? Getting headaches with my cold might mean that I've tweaked a neck muscle coughing. How long will that last? Any condition can arise separately from Fibro but does that mean it will stay separate? We have no way of knowing. Certainly your HR dept cannot judge. It was foolish and insensitive for them to think they had a right to. Your Fibro is not absent when you get otherwise ill, rather it is your constant and fluctuating companion.

If your employer and colleagues are not 100% on your side; wanting you to stay, to understand and help you remain productive and happy in your job, it will not be easy. Would their lives be better if you left? We ourselves struggle to understand the vagaries of our own conditions, so any outsider is likely to be truly baffled. Worse, all these Benefits progs seem to have found some 'lazy fatty' who claims to be poorly but are shown as being 'fit as a flea' and each time, it turns out they have some vague condition called 'Fibromyalgia' which as everyone can see, is actually a euphemism for 'Can't be Arsed Syndrome.' Grr, it really annoys me that they can film with no explanation that the pain and fatigue fluctuates, and even at it's worst, it is invisible!

Yes Fibro may be recognised as a disability, but to most employers it is a red flag.

'Danger, your employee is now a financial liability.' And you just told them that! Oh dear. You are easily injured and recovery is slower. If you hurt yourself, will you sue? I've been turned down for even voluntary work because of insurance issues.

Many people with fibro, work at some level until injury and then it becomes impossible as the injury or pain or both fail to heal. No-one warns you about that. But Employers seem to se it coming a mile off and want out.

If you look at the fibro treatments, people are often on almost lethal cocktails of drugs that can affect their ability and judgement. Possibly bringing these drugs into the workplace? Are they locked away? The CBT and GET offered lead us to question the validity of the condition. Clearly working from the premise that Fibro is all in the head and laziness? And then there is Pacing, which, even when done correctly can be a real problem for employers because in order to manage this condition, we have to listen to our own bodies and rest when we are tiring and work once we are recovered. And this keeps changing. My pain laughs at timetables.

Working through fatigue and pain just drives the condition further. How many employers can defer deadlines to take account of their Fibro employee needing a snooze? How many will want to designate a quiet restroom with somewhere to lie down and relax for their workers? How does pandering to a fibro look to the rest of the workforce who are still expected to work hard no matter what?

We all know there are times when a 20min break or a half hour lie down, will perk us up, others when the pain and fatigue has set in for days. Can you tell which it is? I can't and I've had this condition now most of my life.

I wish you the best of luck with your employer. Maybe you can have further discussions? Share any literature that might help. At best, A diagnosis of fibro means you have a poorly managed, poorly understood condition, with no effective treatment and no cure likely in the near future. Will your employer be reassured to hear that? But that is what you are battling with daily.

You are your own best expert on your condition. The problems you have, are likely to be ongoing although you may have remissions, long ones even! Or you may get worse. Stress won't help. You can ask your employer to provide special equipment which may or may not help. How can you tell? You may destroy your remaining health trying to please your employer in hopes of clinging on to your job. I hope you don't. You may feel you have no choice. Regardless of what you do from now on, your employer knows your diagnosis and it will be what he sees when he thinks of you. Can you spin fibro in a positive way? I think that will be your best ploy.

My experience was once I'd said I had Fibro, I was less. My contribution was seen as less. I'd said it when I was struggling and foolishly thought I ought to be honest about it. My output was still mainly on a par with others or better, but the idea was planted. The fact was, from that point, my employer was fearful and wanted me out. They made allowances but let me know at what inconvenience and cost. I ought to be grateful because most employers wouldn't. My colleagues resented where they had to pull up the slack, when I couldn't. They felt put upon I suppose because, if I couldn't do my job, they had to, there was no allowances made in providing extra staff to cover, or overtime given. They just had to work harder when I was poorly. It was a toxic way to work. All the times I covered, while others took time for family or short term conditions was forgotten, and besides, those things were part of normal life. But now, somehow I had crossed over from being normal like them, to something other, and, likely out of fear, they resented it.

All I can recommend is to play to your strengths and refuse to be bullied or made to feel a burden. Can you work flexi time or from home sometimes? Redefine your job to make it fit your current state. You should have a right to your job and to earn your own living. Having to rely on Social (in)Security (if you can get it) or 'Handouts' as the media like to call them, is no way to live.

As for ringing work sick, always best to be honest, "I have a cold and now my Fibro is flaring. I'm really struggling, sorry". (Maybe they will think twice before breathing germs on you next time!!!) Our job with this horrid condition, that is so misunderstood, is to bear witness and tell it like it is so others can learn.

[Onedaymore1]

I agree, if it's Fibromyalgia that's stopping you from being at work, the fit note can just say Fibromyalgia. I learned the hard way not to list the specific symptoms of Fibromyalgia. I have learned not to confuse my Employer \H R