why dont people believe you have fibromyalgia? upset frightened

Just had conversation with some ladys explaining my current cumstances of leaving work, then coming off jsa of which shouldnt been on.... ect ect,

never again will i say anything....it was a charity knitting group i attened just for a short burst i really make the effort to go

up went there eyes

feel very very alone, and frightened

jackie x thankyou

18 Replies

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  • I think part of the reason is its so erratic and affects people to different degrees when I was firs diagnosed I worked full time and had a normal life then the symptoms increased in frequency and I had to give up work... Then of course you have the famous people like Morgan Freeman who have it and people see them making films ( when they are well) and don't understand just what an impact it makes on people's lives ,

    Please try not to get upset by people who don't understand and in my opinion has no right to roll their eyes when You had turned up to a charity knit.... Where was their charity?????

    Never feel alone. I know here is virtual but you are amongst virtual friends here who understand how you feel perfectly

    VG xx

  • bless u, thankyou so much xx

  • Hi Jackie,

    You certainly aren't alone - I think we've all been in this situation at one time or another!

    Just remember that it's no one's business but yours - you don't have to tell them anything, nor do you have to explain. It's sufficient to say that you are ill.

    If they show an interest you can tell them about fibro, but most people aren't interested in anything that doesn't directly affect themselves - sad but true!

    Take heart - we are all here for you - and we DO understand!

    Moffy x

  • thankyou so much bless u xx

  • I have given up you just know by the way there face changes

    That most people, but not all, think there is nothing wrong with

    You I just say that I have soft tissue arthritis must easer.

  • thankyou so much xx

  • Hi

    So sorry you are feeling upset. As Grumpy said there is a lack of understanding with a great many people. This is always the case with variable illnesses. There may be no real cure for fibro, but unfortunately there's not a universal cure for peoples ignorance either - whether they are ignorant of the facts or just plain ignorant.

    I only found this site a few weeks ago and it has already helped me so much.

    Remember charity begins at home, look after yourself and your own needs. You'll eventually find people who understand then you can give your time where it is more appreciated.

    Please take care of yourself

    xx

  • thankyou so much xx bless u

  • Generally, when people ask after noticing a wincw or groan, I tell them I have FB. Their usual answer is " what's that?" My response is to say it has lots of symptons, the main one being constant pain everywhere, stiffness, lack of sleep and mental confusion but there are so many its difficult to describe. I then advise them that if they are really interested to look it up, I then have to spell it , as lots of people can't, and leave it at that. Some do some don't but in a small way it's spreading the word.

  • I agree with others. My approach is to keep educating people about it.

    The saddest thing is my mother never quite understood what I was going through and why my income had dropped so much - sad because she died 18 months ago. Thankfully those closest to me where I live do understand, which is what matters. When it comes to people I work with/for when I'm having a bad patch I tend to tell them I have a migraine - which is a copout I know but as am self employed I don't want them to stop employing me out of ignorance of the illness and people understand the idea of a migraine.

  • Hi Jackie, Peoples short mindness is really hurtful, although you would expect a bit of understanding from a charity group. I am sure we have all come across this at one point or another. Please ignore people like that I think its just because they cant understand it and also because we look well even though we are not.

    All that matters is that this is real and hope you have support from friends and family. You are not alone.

    Take Care jo xx

  • bless you and thankyou x

  • Hi Jackie, poor you, but I so understand how you are feeling, I sometimes think I should go around with a flashing neon sign over my head saying " I'm in pain ". Part of the problem, certainly for me, is that people can't see the illness, yes, you may move very differently, you may have to change position to relieve pain etc......but I think I've said in other posts, I have broken bones very frequently and people are always so concerned and want to help, and I want to yell at them, telling them "I'm just FINE in a plaster but the rest of me hurts like hell, which you never notice or do anything about". Eeeek that probably a bit selfish, but what I'm trying to say is that fibro is unseen so people do not make allowances or recognise that we have the problems we so do. Oh dear, I've probably made no sense at all, but do know you are not alone, this is a wonderful place to come for support, understanding and at times some lighthearted fun on the blogs, which help. We are all here if you need help.

    Gentle hugs. Foggy x

  • Thankyou gentle hugs x

  • Hi Jackie, like you, I am feeling a little lost and confused at the moment very scary. Not sure what to do! Take care. Ali x

  • I hope you feel positive soon and you have my support your not alone, much love x

  • I know just how you feel.Its even worse when its your own mum though.My mum lives in Aus so i only see her once a year. Last year when she was over we went out for lunch and i happend to ask the waitress if i could use the disabled loo, as to climb stairs was unbearable pain for me. My mum response upset me so much. She turned round to me ans said"your not disabled theres nothing wrong with you". I then showed her my swollen red inflammed knees as i have osteo arthritis in both. She then uttered "oh your just like your nan and she was a hypochondriac too" I was gob smacked to say the least!!

    I find it hard too even though i ask my partner to help around the house, i still end up doing 90% of housework. I also run my own business and work from home.

    I don't know how i do it sometimes. I sit down at night in so much pain its hideous!!

  • I totaly understand....I believe you...wish people wether family or not just accept your good word.......again you have a friend who believes you...Keep in your own power Much love xx

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