What do you say?

When I try to explain a little bit of what my illness is like, I always get; "Oh I ache too", "oh I'm so tired i know how you feel".

Isit just me or does it really frustrate you? I just want to say that you have no idea how I feel. Fatigue isn't being tired, and chronic pain is not just an ache.

How do you approach this? I find myself walking away or changing the subject. But also feel like I want to make people aware of how bad it really is.

15 Replies

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  • Just tell them to ......... off x

  • I do understand exactlty what you mean, so i found a few very descriptive phrases to describe local pain, but the biggest revelation to me was when i realised that whether or not most people understood my disease and the extent of the problems it causes was irrelevant, with the vast majority them understanding or not understanding my situation makes absolutely no difference TO my situation so then why did i even bother to explain?, i came to realise that unless it mattered for medical treatment or to confirm that assistance and intervention are needed then to me it really didnt matter. I now rarely bother to explain at all.

    Blessings.

  • Thank you. I just find this so hard. Im still coming to terms with it all myself and finding it extremely hard to accept how different my life is now. I just feel other dont understand what im going through.but i totally understand by it doesnt matter if they know, but i hate people judging and thinking im still the same when they see how I struggle.

  • Ah now that is a very different thing, firstly i have never come to terms with what this has done to me or the turmoil and disruption to my life that it has caused, i think i have a huge problem with that, in that i probably have no real peace or resolution, but the fighter in me says why the hell should i accept it?, i think if i accept it then i will give in and i would rather curse every day that a sandwhich will take me an hour to make, i cant hold the butter, i cant open the cheese, i cant butter the bread or support the weight of a sandwhich on a plate, but if i didnt spend an hour pushing through it and making that sandwhich which looks like a 5 year old tried to do it left handed with frozen butter and a complete mess then what would i do?, i would have to accept im beaten, now i know i cant drive and never will again not least because of my meds and i know ten pin bowling and ice skating on the christmas ice ring wont happen again, i know i will never see my friends crazy chocolate lab trying to scoop leaves in the forest, there are so many small delights that this disease has taken away that if i didnt still try and fight my way through the ones that are just "hard" i would have to accept all of them and im not willing to do that, i spend 20 + hours a day bed bound, so fighting to do what i manage to do in 4 hours with just half a finger and a thumb on each hand is the daily battle that is my everest. So i dont want to accept that this is how it is and i guess angry is still something that means im alive. As regards what others think?, the few people around me know how i am and know that i would rather be in pain than morphined out of my face every day, what the redt of them think i know longer care but i think that is because i am now so evidently physically fissbled that it is no longer an issue.

    I hope you find your place in all this mess and when you do remember it is YOUR place and if that is how and where and why you cope then own that place.

    Blessings

  • Hi dee, I think you put that down perfect , I still wake up initially thinking about my job then wake property and remember that its been about 15 years since I was in the building,

    I agree with everything you say , I have been trying to explain to OH that I know it would take him seconds to do what ever im trying to do but I have still got to feel like I can do something even if like you explain a child may have done better.

    I am now struggling with this oxygen constantly updated my nose and what my we boy calls my tail. Lol we have to keep going and this site is so important for many and even if you have had fibro for years we always learn more about it through poeple who understand.

    Sorry for the long winded thank you

  • On the morphine i never know i am dreaming until i wake up, if im dosing up during a bad flare there can be days pass when i have no idea if i have been awake or dreaming and if i go to sleep with the tv on my dream could go anywhere and fit in with different episodes and sometimes channel changes!

    Blessings

  • I like your positive thinking, Leon.

    Dee_L24 Perhaps having a bunch of leaflets about what fibro is and how it affects you would be helpful to you. Then you don't need to explain anything, just say, 'Read this, it will tell you all you want to know.' xx

  • Hi Dee....I think we are all in the same boat when it comes to an explanation of what is wrong with us...we don't want to be rude/flippant etc. but if anyone has the answer I would love to hear it...x

  • Hi there

    In answer to your question Yes!! It frustrates me intensely.

    The only way I can described it is to say that it's like having severe 'flu permanently.

    I have had many people say to me that they must have it too.

    My only answer to that is that they would definitely know about it if they did have it.

    I've yet to find a way of conveying the pain, lack of sleep etc.

    Like you I just end up walking away, although I am increasingly finding people who have a relative/partner with it.

    You can really tell the difference when soemone knows about it.

    Lu xx

  • Hi Dee,

    I'm fed up trying to explain how I feel to certain people, family are okay, but friends we haven't seen for a while ask 'how are you doing' I always say I'm fine now. Clearing I'm not, but I just can't be bothered with explaining and too be honest do they really care? I think some people ask because it's a polite thing to say when greeting some-one. If they really care, they ask you again, if they don't, they won't.

    I find it's the same as going to the doctors. How are you today! I'm fine I thought I'd wait in your surgery for an hour to see you...Mmmm I don't think so!

    Anyway I find if people really want to know. they ask you again latter on in the conversation to get your real answer. Chin up honey :-) xx

  • I think we all struggle at some time to convey how we are feeliing. Now when anyone asks

    I just say "A little better/worse than yesterday" and leave it like that.

    Unless it is another fibro sufferer, nobody knows how we really are so I don't bother to explain any more.

    X

  • Thank you everyonefor all your help.

    Its lovely to hear others who feel the same, but not lovely that we all feel like this!

    I think it helps to hear from others so i know i am not alone and to remind myself i am not making it uo, as thats how some make it feel!!

  • Oh boy do i understand that last sentiment!!! I have stopped beating myself up now but for a long time held the thought that somehow I was just being lazy.... after all everyone is a chronic insomniac who is is a constant state of flux...... aren't they????????

  • Hi Dee_L24

    I have to admit it really does annoy me when people carry on like that! An Ex-friend of mine (he is now) use to say things like that all of the time. One day I got so fed up of it as he was reading a leaflet I had on my coffee table, that I pretended to yawn really loud and said ''really, is that the time already?'' He did not like it and I have never invited him around again. I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • I can empathise with you. Sjorgrens Syndrome is my main problem. Very prevalent amongst Women and much undiagnosed. And "invisible" too. Only on days when I resort to wearing dark overglasses when I am having a bad photosensitivity day, do folks realise how severe it can be. I have bored the pants off people explaining, but now think it's best to use the words incurable and chronic. That's something that seems to strike a chord. In the UK we have EPP. Expert Patient's Programme. This is available on the NHS, BUT rarely offered. The patient has to ask to be referred to what is a six week group course to try and help one deal with our type of illnesses.

    Do hope you can eventually find a solution. Keep trying. 😃🤗

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