How can you get your employers to understand what its like to have Fibro and how you don't know how you are going to feel day to day?

My Fibro pain is getting worse i also have arthritis in my knees and in the last month i was also told i have type 2 diabetes. I work 16 hours a week but i cannot get my employer to understand how much pain i am in, somedays i find it hard to walk and to even hold a pen but they just don't care. If i call in sick i get questioned about why i can't go in and is my pain that bad because i don't look in pain. I feel that maybe the best thing would be to give up work but then i think why should they get away with treating me like this. Has anyone got any ideas how i can get through to them?

12 Replies

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  • i find this problem reachers further than work most people who havnt got fm just dont understand i get , well u look alright ,i cud scream i think ur floggin a dead horse with work ,ive taken redundancy but iam in a position to do that .like u say why shud they get away with as long as uve got yr doctor on yr side theres nothin they can do .take care hun xx

  • Have you had an official dx of FM? If you have you are coverd by the DEA, disibility equality act. It might be an idea to have a read through it. Its easy to find on line. Once you have a little more knowledge you may find it easier to deal with them. You could always print out a copy and ask that it be kept with your employment recoard in HR. My employers attitude changed completely once I was dx and therefore coverd by the act. Hope that helps a little. x

  • Why not print out the details of FM and ask your employer to read it, perhaps then they might understand but as I've sadi before the only person who will understand FMS and how you feel is another person with FMS !!!

  • I tried that one and she threw it in a drawer right in front of me!!!!

  • i agree with ebonny i was advised to do this by my supprot group leader who is fantisic.

  • Hello pamg, If you go to FMA UK - Information - Patient Booklet, you will have found a really useful document for anyone you want to understand what FM is like. You can print it straight off. With a bit of luck it should make your employers understand that they are b lucky you can still come to work at all. You may have to register with them, if you haven't already, to access this.

  • I agree with what the post have said herei was diagnosed 7-8 yrs ago and when i had my first really bad flare up had to fight with work over but after i gave them permission to contact my doctor etc the hr medical dept side brought me examined me and listed me the side affects i had and the occup health advised them to be care with how they treated me as i would be classed as disabled and they would expect me to be covered by disablity discrimination act. so have to more understanding when my sickness is really bad and times i need to take time off to recover.

  • also pamg if theere is a local fms group nearby you they could give you leaflets and advise to help and give you information about your illness that you could supply your employer with. hope this helps. I uderstand where your coming about them saying but you look fine because alot of the time its hard for people to see how much pain we are really in and alot of us tend to try and hide it from people.because we don`t want them feeling sorry for us.

  • hi - look up - 'The spoon theory' on the web. It is ones ladys story of how she was getting a friend to understand what its like to have lupus. But its used for FM situations too. Its really good!! xx

  • hi - look up - 'The spoon theory' on the web. It is ones ladys story of how she was getting a friend to understand what its like to have lupus. But its used for FM situations too. Its really good!! xx

  • Thanks for all your replies I am going to try and get as much info as i can together and book an appointment with HR and pass it on to them.

  • I printed out an faq for my work and it's been put in my work file. I'm lucky to be working in a really supportive working environment which is also a mental health organisation.

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