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10 things not to say to some one with a chronic disease

Posted , 8 users are following.

kaz_40
kaz_40

10 you dont look sick, you look so well

9 Its all in your head

8 It must be nice not having to go to work.

7pull yourself togeather

6 no pain no gain

5get a grip sort yourself out

4 Its all in your head.

3 stop being lazy get a job.

2 It cant be that bad.

1You cant be in that much pain. Ugghhhmad

What have you had said to you? any thoughts ladies gentle hugs take good care of yourselves. xx

0 likes, 66 replies

66 Replies

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  • hazel70459
    hazel70459 kaz_40

    Posted

    Hello Kaz,     Just laughing at that, yes i have had pretty much all of them over the years. My husband is a classic he always says " I want you to give up work as i know you are struggling " but then in the next breath says " we can manage on beans on toast , dont want to loose the house , we wont have any holidays" . Its hard to take comments like its all in your head ect ect. I think thats the biggest challenge with this condition getting people to understand and accept its bl**dy painful and dibilatating. I have found the more people i chat to have actualy heard of fibromyalgia and its a relief when they know someone who has it and understands. The people you know and love understand.Thats why this forum is great , its helped me alot. cheesygrin

     

    • kaz_40
      kaz_40 hazel70459

      Posted

      Hi hazel this forum is just great its helped me know end. Ive struggled trying to get people to understand Ive given up now. my husband  understands, its  great to have you ladies to talk to and that fully understand what your going through and how your feeling.Im so thankful I found this site take care gentle hugs smile
  • loxie
    loxie kaz_40

    Posted

    spot on Kaz - number 11 would also be 'its all in your head' - I'm like....yes it is - MY BRAIN - my brain sends pain signals, my brain fogs up, my brain tells me i'm exhausted.  The most annoying response I find I get when I try to explain a particular symptom on a given day, eg my leg hurts today and I'm having trouble walking - they reply that yes they understand because they bruised their knee last week and it aches 'a bit' - oh brother, swap my collapsing body please for your bruised knee any day!
    • Maggers
      Maggers loxie

      Posted

      So true - I reckon my sprite removed part of my brain - the bit that controls what comes out of my mouth. I can think one thing but the words that come out are certainly not what i am thinking.   There must be quite a collection of brain bits somewhere on a shelf!    

      joe public has no idea what fatigue means.  A colleague of mine thinks we all get tired and cannot understand about the crushing fatigue and finding it difficult to put one foot in front of the other.  She suggests I stop going out so much - if only!

    • kaz_40
      kaz_40 loxie

      Posted

      Hi loxie if only we had a bruised knee to worry about people have no idea the best was when a friend of mine said I think ive got fibromyalgia, I said what makes you say that she said I have a pain in my hand. I said is that it, I said if you had fibromyalgia believe me you would know about it honestly best of it is shes a social worker and has dealt with people with fibr plus she knows what Im rolleyesgoing through 
    • kaz_40
      kaz_40 Maggers

      Posted

      Hi maggers I have no control over what comes out of my mouth what ever Im thinking at the time isnt what comes out of my mouth. my husband said to me last week youve put your foot in mouth again my brain is haggled Im forever putting my foot in it brain is stuck in reverse instead of 1st gearrolleyes
  • Bee70
    Bee70 kaz_40

    Posted

    I think the worst one for me was from my GP.....It's all in your head !! rolleyes
    • hazel70459
      hazel70459 Bee70

      Posted

      Bee i remember that feeling when i got told that. God it stung because i new that once upon a time i never had pain soooo long ago and now its daily today 10 out of 10. So when someone who cant figure out whats wrong says that, its a horrible feeling, i mean who would want to suffer. Why give medication if it is in our head !!!!.
    • kaz_40
      kaz_40 Bee70

      Posted

      I cant believe your gp said that to you omg thats terrible and unproffessional wheres the compassion strikes me your gp is in the wrong job shame on themmad gentle hugs
    • Bee70
      Bee70 kaz_40

      Posted

      This was over 20 yrs ago. I'm no longer at that practice. I just broke down into tears in front of him when he said that. He said carry on with the meds and come back and see me if you are still in pain. So I went every week for months he was then convinced meds were not working and I insisited on being referred to other specialists, thats when all hospital appointments started.....and so it went on and on and on....

      I'm still here 20yrs later and living the best way I can without meds. Herbal is all I have and I will be reporting back soon to all with my findings.  All good so far but early days. wink x

    • Bee70
      Bee70 hazel70459

      Posted

      Hazel, yes it does sting but it's made me a stronger person over the years. I'm fighting the fibro and NOT allowing the fibro get the better of me.

      One day at a time.....wink x

    • kaz_40
      kaz_40 Bee70

      Posted

      Hi bee I cant take meds Ive had a very bad reaction to each every 1 ive taken. I just use a hot bottle ibruprophen and grit my teeth try and focus on something to help distract the pain. It took me 10 years to be diagnosed and countless tests different specialist loads of blood test mri scans ct scan heart tests lung tests I was exasperated with it all. the last specialist said sorry cant help you so went back to my gp told her I just could not take no more so refered me to a rheumatologist more tests done then finally a diagnosis.let me know how you get on with the herbal stuff anything is worth a try. we cant let fibro gwt the better of us we have to keep fighting easier said than done some daysrolleyes 
    • kaz_40
      kaz_40 hazel70459

      Posted

       I felt relieved when I got told I had fibro it had gone on for 10 years I finally got an answear to what was wrong with me as I felt at 1 point I was loosing my marbles gentle hugs
  • TeresaJS
    TeresaJS kaz_40

    Posted

    Perk up !
    • kaz_40
      kaz_40 TeresaJS

      Posted

      I hate it when people tell you to perk up its not that simple. its surpriseing what people say to us if only they could be in our shoes for 1 day. they wouldnt say perk up thenmad
    • TeresaJS
      TeresaJS kaz_40

      Posted

      It's really useful advice isn't it, "perk up"? rolleyes You really need people to tell you that, you feel so much better hearing "perk up" when you feel you were run over but a lorry... perk upfrown!
    • kaz_40
      kaz_40 TeresaJS

      Posted

      makes me so mad when I hear perk up and the other day some one said to me it cant be that bad mad 
    • kaz_40
      kaz_40 TeresaJS

      Posted

      I think we will need a bigger book Teresa  maggs poems our advice and the things people have said to us like perk up get a grip its all in your head and many moresmile
    • TeresaJS
      TeresaJS kaz_40

      Posted

      Yeah, "it's great actually.. want some"? 
    • kaz_40
      kaz_40 TeresaJS

      Posted

      It certainly would be and from some great authors me thinkssmile 
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