What do I say to people that don't understand?

Discussion in 'Fibromyalgia Main Forum' started by conrskin, Sep 24, 2002.

  1. conrskin

    conrskin New Member

    For the last few weeks, my pain and fatigue have been getting much worse and its definately impacting my job and social life (which is non-existent lately). My questions is, does anybody have any good one liners as comebacks when you're being bugged or people are being insensitive or just flat don't have a clue? I'm really starting to feel alone and am beginning to relate to cancer patients when they say how lonely it can get because no one understands what they are going through or people don't know what to say to you? It seems to fall alot into that "But you look ok" category. What do I say back or do I ignore them? Any advice?

    thanks in advance!! :)

    Sheri
  2. conrskin

    conrskin New Member

    For the last few weeks, my pain and fatigue have been getting much worse and its definately impacting my job and social life (which is non-existent lately). My questions is, does anybody have any good one liners as comebacks when you're being bugged or people are being insensitive or just flat don't have a clue? I'm really starting to feel alone and am beginning to relate to cancer patients when they say how lonely it can get because no one understands what they are going through or people don't know what to say to you? It seems to fall alot into that "But you look ok" category. What do I say back or do I ignore them? Any advice?

    thanks in advance!! :)

    Sheri
  3. glendamarie22

    glendamarie22 New Member

    Sheri. I run into that a LOT, too. Especially the comments about not looking sick. I subconciously find myself saying things about not feeling well, in order to prove I guess that I am really sick. It's so frustrating that we have a disease, but it doesn't show up and we don't have proof. I hate to talk about my ailments to people - it makes me feel like a fussy old lady. So i am looking forward to some advice here, too. Anyone?????
  4. JaciBart

    JaciBart Member

    that I have very limited energy and taking care of my family & myself is the most important thing in my life and that my world seems to be much smaller these days, beyond that I drop it. The fact is I really don't care what they think, the important thing to me is the ones I love. I have found that the most important thing on my mind is my health and I know most people don't care to hear it so I just focus my attn on those that understand. Maybe I am strange but a social life is not terribly important to me, I learned a long time ago that not everyone if life is going to like us or understand us & to let it go.

    Jaci
  5. eeyore

    eeyore New Member

    I HAVE BEEN DEALING WITH THIS FOR ALONG TIME I FIRST STARTED HAVING A PROBLEM WITH MY STOMACH BEING SO UNCOMFORTABLE AND BLOATED AND NOT BEING ABLE TO GO TO THE BATHROOM ON MY OWN, NO ONE COULD UNDERSTAND MY DISCOMFORT BECAUSE I WAS SO THIN(TO THEM)THEY WOULD SAY TO ME "YEAH, RIGHT LIKE YOU ARE UNCOMFORTABLE" IT MAKES ME SO MAD.WHEN I TOLD THE NURSE AT THE SPECIALIST I WAS GOING TO, SHE SAID IT WAS BECAUSE MY CONDITION WAS FROM THE INSIDE AND NO ONE COULD SEE IT, NEEDLESS TO SAY I HAD TO HAVE MY COLON REMOVED BECAUSE IT COMPLETELY SHUT DOWN. NOW THAT I HAVE CFS AND FIBRO. I STILL GET THE SAME COMMENTS LIKE "YOU DON'T LOOK SICK TO US" OR "I CAN'T BELIEVE YOU ARE SICK". ONE DAY I HAD A VERY GOOD FRIEND SAY TO ME "AT LEAST MY TESTS CAN BACK POSITIVE" JUST BECAUSE WITH THIS DD EVERYTHING COMES BACK NEGATIVE WHICH IS ANOTHER REASON FOR NOBODY TO BELIEVE US.
    SORRY THAT I WENT ON SO LONG I HAVE A REALLY GOOD FRIEND THAT SAID TO ME TODAY THAT SHE WOULD SEND ANONYMOUS LETTERS WITH INFORMATION ABOUT MY ILLNESS TO ALL THE IGNORANT PEOPLE IN MY LIFE.
    WHEN PEOPLE ASK ME HOW I'M DOING I JUST SAY FINE AND TRY TO CHANGE THE SUBJECT, BECAUSE IT'S JUST TO UPSETTING TO LISTENING TO THE NEGATIVE COMMENTS.
    I DON'T HAVE ANY GOOD COME BACKS EITHER I GUESS WE ALL NEED TO LEARN SOME.
    TAKE CARE.
    [This Message was Edited on 09/24/2002]
  6. domesticgoddess

    domesticgoddess New Member

    As a wife of 30 yrs to a Vice President of A Bank and dx in 90 with Fibromyalgia

    Hubby and I just tell people who inquire about my medical condition "She has a Bad Back"! Which, truthfully is not a Lie.

    I have degenerative disc disease, osteoathritis, bone spurs growing on my spine. We moved from a 2 story home to a 1 story home in 1997. Best move I ever made!

    Our Society is quite 'ignorant' to the fact of Fibromyalgia, Chronic Fatigue Disorder and Me. We just find it easier to say 'bad back' as most people can relate to a bad back.

    Gentleness
  7. sb439

    sb439 New Member

    I'd love some one-liners as a response to: 'but you look well'. Someone on the list must have some suggestion?

    I sometimes say things like: "in fact, I'm quite often in pain and feel terrible, but on those days I - perhaps understandably - never go out, so you only ever see me when I'm reasonably well."

    There is a leaflet from the Amer.Assoc.for CFIDS, which is quite good, so perhaps one could carry round some of these at all times and just hand them over silently?

    Susanne
  8. Sunshyne1027

    Sunshyne1027 New Member

    I know how you feel. When others say you loook well.

    I am glad I look well. Most think I am younger looking than my 36 years. Inside I feel like a hundred years old.

    I am not doing that well either, got a flu.

    I havent told anyone at my new job that I have Fibromyalgia. I am afraid I guess that they would fire me. Or that they wont be understanding of it. I want to be treated normal too I guess, like everyone else. I dont want their pity, and dont want the sarcasm of you look well, you dont look too sick. I dont want to have to go through the whole thing of explaining what it is I have either.

    Anyone got just a few sentances to describe what FM or CFS is?
  9. KLynn

    KLynn New Member

    it is appearant you dont understand what im going through.....and i am glad you dont.....to know what its like would mean you were living with it also, and i wouldnt wish this on anyone....


    ~KLynn
  10. KLynn

    KLynn New Member

    how bout this taken partly from my favorite song in the whole world....

    well thank you! I might be barely breathing but im glad i dont look dead....


    ~KLynn
  11. Sunshyne1027

    Sunshyne1027 New Member

    You got some good comebacks there.

    :)

    Making me laugh.
  12. Rene

    Rene New Member


    Booklet,  The title is used solely as a "pen name" for the author, only to signify her desire to educate others about disabling illness. Thanks!
    "But They LOOK So Go
     
    This article contains excerpts from:
     
     
    "But You LOOK Good:
    A Guide to Understanding and urprisingly, more than 125 million Americans have at least one chronic condition. Nearly half have more than one. An illness or injury is considered chronic, when it lasts a year or longer, limits activity and may require ongoing care.
    Not everyone with a chronic illness has the same symptoms or degree of symptoms. Some have mild complications and with a little adjustment in their diets or schedules, they can lead a pretty "normal" life. Some have to make bigger changes, sacrificing various activities or their work situations in order to contend with their conditions. Others become so ill they are unable to work at all and struggle just to meet life's daily needs.
    Just about every one of us has experienced being so sick we had to stay home from work or school, because we were too sick to go. We hate being sick, because the time ticks by, the work piles up and we cannot do anything about it. We gripe and moan that we "don't have time to be sick!" even when it has only been a few hours. It is just plain miserable to be sick, in pain and debilitated - nobody enjoys it.  
    Often when we come across someone who says they have been sick and in pain for a long time, we might think they are either exaggerating or they are not doing something about it. After all, when we got sick, we got some rest, took some medication and were soon back on our feet. Moreover, when we were sick, we were pale and droopy, but they often look "perfectly normal."
    The truth is, most chronic conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew. For instance, a person can battle extreme fatigue, even though they may appear healthy and well. Just the same, a person can have spinal damage and excruciating pain, despite the fact that to the onlooker they may look strong and able.
    The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they "look good." Sadly, this makes the person feel as if they are being called a liar or a wimp. This can cause great strains on relationships between friends, family members and spouses. Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to. 
    Regrettably, a travesty occurs when the person not only has to contend with no longer being able to do what they love to do, but also has to battle for their loved one's belief, respect and understanding. While the person with the illness/pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering.
    We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing their situation or trying to pull the wool over our eyes, because to us they "look fine." After all, when we rebut what they are telling us with, "But you LOOK good," our friend really hears, "But, I don't believe you, because I can't see it."
    Frankly, it is impossible for us to be compassionate, until we have acknowledged there is a situation for which to be compassionate! In other words, how can we say, "I am sorry you are sick," when we are always saying, "I do not believe you are sick, because you don't look sick?"
    People with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their painful disabilities seem invisible to us.
  13. ali-may

    ali-may New Member

    Hey, you're lucky that you look good! Most of the time I look terrible - dark circles under my eyes - I quite often look really tired and not healthy at all.

    Ali
  14. diggity

    diggity New Member

    "but you look good"

    "well I hear good too, sure wish I felt well"
  15. garyandkim

    garyandkim New Member

    said, You look good today. I was winded by walking up the stairs slowly and my back had been spasumming like crazy since yesturday when the Chrio decided to kill every muscle in my back. But, I did my work out and said I felt the way I did. I told them I felt like crap and the spassummings and all. I never knew that they wrote down what you say as fact so when I use to say fine or okay. I was lieing. I don't do that any more, I say how I feel and if they say what I explaine in detail and as when was the last time you felt this symtoms or pain or bad Flu. then I said well thats how I feel everyday and I can do it with a smile most days. We have learned how to put on a mask and be someone we arn't just to mask the pain and exhaustion. Well. our neighbors are great and the docs in my area are under some kind of spell because they believe in FMS and CFS. This is so ammasing. I saw a neurologist last week who understood and was very helpful. Wow, The tides are starting to turn.

    Next go to the post at the top of the board for the FMS/CFS guide and order up to 99 at a time and hand them out. It's a great start for others to understand.

    Good luck, Kim and Gray

  16. darlamk

    darlamk New Member

    I recently had a disability hearing with a judge. He stated several times that I looked like a perfectly healthy women and that he had a hard time believing that I was disabled. The social security consultant (hired by them)stated that after reviewing my medical records there was no job I am capable of doing and my attourney did her best too. I wanted to tell him how my looks have changed over the past few years as my physical status has plummeted! Maybe I should have told him I am just "high maintence" and it takes a lot of time in front of the mirror to keep looking my best! LOL! I have to wait for his decision but I am not too hopeful. It is so frustrating to hear those words...but you look good...so I usually say a joke like "You bet! I'm still kicking!" Anyway looking my best is important for my self esteem and I will continue to do whatever it takes to "look good"
    [This Message was Edited on 09/24/2002]
  17. nathan

    nathan New Member

    I know exactly how to deal with people who like to resolve any conflict or problem, like me still being sick, in their own head. when they say, "Well, you look good. Or, "Oh I thought you were really sick, but your up and look fine."
    I say,
    "Thanks for the compliment, I hear how handsome and intelligent I am all the time, I have to beat the women off me. YOu see, it is a muscoskeletal illness so it works from the inside out, GET IT! It's not like I can get better either, there is no cure. Thank you for your understanding and support though, it feels so good to be called good looking. Oh by the way, I have an engagement I have to go, see you later."

    In fact, I use it best in confrontations from people that are my customer's in my pottery and art gallery. I somehow manage to keep up with all of the caca they throw at me, but I'd rather they talked about the weather. However I won't let them get my goat. I hope you can use this. Take the comment "you don't look sick or bad" as a compliment on how good-looking you are. Trust me, it eats them up, but carry on in telling them it is very bad and there is no cure, that there are very few helpful medical practicioners who treat it and you have a date or a fun thing your doing now, even if there isn't and leave without letting them say another word. It makes you get in the sweet last word with out their reply, which by the way is going to be another stab, because their first attempt wasn't successful. Trust me, it is human nature to get someone worked up, even if it is subconcious it is there. Try it out. Good luck, I hope you remember it when you need it. GOd Bless You all, Peace- nathan "the fibrokid"
  18. Girlof41

    Girlof41 New Member

    "Thank God I do because I feel like hell" (say it with a smile, we don't want to be accused of being grumpy, too!)
  19. dlj2002

    dlj2002 New Member

    How fortunate you are to look good! I always hear,
    "you don't look well today". I know I don't, I feel
    awful, but I really don't need anyone telling me
    how bad I look! Hang in there, and I hope your good
    healthy look stays with you!!
  20. flo

    flo New Member

    I tell people I have neuro muscular disease that they cant see that cause chronic pain 24/7 from head to toe. That pretty much sums it up. I leave out the fatigue part because even thought hat is a big issue the pain is the bigger one and I think people can relate to that better. Everyone gets tired so they dont get that a nap just isnt the cure. but when i tell them I have chronic pain 24/7 head to toe they can understand better.I tell them imagine having a super bad toothache feeling all over your body all day they can relate to that too.
    Do people really understand the impact it has on my life NO but I dont think they really can unless thay can live it like we do 24/7 they really wont get the life stealling impact it has. Today i am in horrible pain and am feeling very alone.I have been in tears all morning because of the pain. I am going to have to cancel plans i had today and rest.I hate it!!!Thank God i have a great Husband. He is drawing me a bath right now.But he needs to get to work. Our finances suffer because he has the extra burden of caring for me and the kids and I know he feel alone in this too because people dont understand the impact it has on his life and he raraely will mention it and never complains.I am truely blesed with him I cant sit stand and even laying down only gives me a little relief. I feel so guilty because my husband has to do so much for me and I feel like Im not the mother a wife I want to be.I'd like to go hiking & bike riding like I use to.I try to walk through the pain every day and put on a smile and try to go on the best i can. I alaways get dressed,even try to put on makeup to make myself feel and look better.
    Well I hope this helps someone out there feel so not alone. It always helps me when I here the honesty from you all about what we experience. It gives me strength to go on to know im not alone.I am so thankful for all of you and for your willingness to share and care.
    Blessing all~ Flo
    [This Message was Edited on 09/25/2002]