How Do You Explain...

Discussion in 'Fibromyalgia Main Forum' started by KittyCat, Jul 23, 2006.

  1. KittyCat

    KittyCat New Member

    How do you all deal with family and friends that just don't seem to understand why you are too tired at times to do certain things? I recently got approved for SSDI, for which I am very thankful. It just hurts so much when I tell a friend or relative I'm too tired to go here and there with them and they say oh you are too young and your a lady of leisure. You shouldn't be tired. I don't want to start explaining my condition so I just say nothing. How do you cope so folks don't think we are just lazy. Thanks for reading this.
  2. kriket

    kriket New Member



    Well, I don't even try to explain to people that are unwilling to understand. Usually, it takes them hearing and witnessing other people that they know with fibro. (maybe) before they will think back about rude remarks they have made to you. Most people that have made fun of me have learned the truth the hard way that fibro. really is real. Don't waste your time on people that don't waste their time on listening and believing you.

    Kriket
  3. AnneTheresa

    AnneTheresa Member

    A few weeks ago my niece took part in a citizenship ceremony. We were invited to the ceremony and then to a barbecue afterward. It would have made for too l-o-n-g a day for me so my partner and I opted to just go to the barbecue (which in itself was pushing my limits).

    My father-in-law wouldn't speak to me and my mother-in-law (in the snarliest voice I've ever heard) said "What's wrong? Didn't you *want* to go to the ceremony.? I told them that going to both occasions back-to-back made for too long a day for me. This was met with silence and I was given the cold shoulder for the rest of the day.

    How can they not know I'm sick? They know I use a walker, had to leave work and presently receive disability benefits. I visit once and a while for an hour or two but that's all I can do on that day - I need to rest before and after just to get there. I guess they just see me during my 'outings' and how good I look (cosmetics can do wonders) and assume I'm like that all the time.

    Being understood is an ongoing battle, isn't it? How do I cope? I don't cope too well after an event like the one outlined above (causes me stress) but I do promise myself that I'm going to educate them whether they want to be educated or not. Now that I know how naive my in-laws are about my condition, I'm going to make it a project to paint them a more accurate picture of my life. It may not do a wit of good, but it will be a help to me to know I've tried to enlighten them.

    It seems to me the people who understand the most are people who are close to someone with FMS/CFS. They will something like "oh my sister/aunt/cousin has that illness and so I know how awful it is." I say thanks to the sister/aunt/cousin who shared their life and challenges to educate another.

    As far as my in-laws are concerned, I'd like to be that person who educates them so that the next person they encounter with these illnesses will be met with understanding.

    'You're too young and a lady of leisure'. egad, that's a statement that must make you very frustrated. I hope these people wise up at some point and begin to understand. In the meantime, try not to take it to heart.

    God bless,
    Anne Theresa
  4. nanna4550

    nanna4550 New Member

    ...What I would like to say is "haven't you read about FM yet?" "you can google fibromyalgia and find several sites that explain the symptoms". Maybe then they will understand.
    When I was first diagnosed my family kept telling me about all of the "cures" that they found. I tried a few, but they didn't help and so I think they think I just want to be sick or something.
    I am actually very much better since taking Cymbalta, Lunesta,stress vitamins, prometrium, estriol and testosterone. The warm weather helps, too and I am usually better in the summer except when I do too much.
    I learned a while ago that I can't control what other people think, so I do what I need to do to take care of me.
    Best to you, Nanna
  5. KittyCat

    KittyCat New Member

    I really appreciate your replies and suggestions. It is hard to be misunderstood. I think I will have them read up on FMS/CFS. That might help.
  6. Lolalee

    Lolalee New Member

    I have a dear friend who calls me when I miss church or Tuesday bible study. She knows I've been in a bad flare for a while. She knows that I have had a week filled with doctor visits, lab work, ultrasound, ecocardiogram, Thyroid biopsy and more. Today I missed church because I wanted to attend a luncheon at the home of one of our church members. I could relate with AnneTheresa's post because I knew I couldn't go to church and then attend the luncheon afterwards. As it was I was really pushing myself to do the luncheon.

    Anyway, sorry I'm rambling here...my point is that at the luncheon I sat next to my friend and she asked if I was going to eat. I told her that I really didn't think I could (I was so shaky). She said "Why aren't you feeling well? Is it the weather?". What do you say to that? I really thought she understood what I go through. People just don't know.

    Lolalee
  7. 69mach1

    69mach1 New Member

    i will need to cancel going to her house...she is going thru some marital problems...;looking like divorce...well anways we have been friends for like 17 years...


    i feel embarrassed at my age of 41 yrs. to have to tell men or women meet...what do it do for a living....

    should i say i have had the good fornatune to be able to retire early....

    well anyways people i know personally i tell them the truth...i really am having a bad day....and let it go....
    i feel it is their problem if they can not understand...

    if they get snotty or snide...tell them i pray youd dont' get this and if you do you will be there to help them out as much as possible because i know how painful and fatigquing this is to have...

    i've done that to my 16 yr. son...last year...and of course he has tested positive in all of is back area...for fms...
    so the drs have a watch on him///


    jodie
  8. Susan07

    Susan07 New Member

    You could say, "Did you mean for that to sound as rude as it did? I thought you knew I have FM!"

    I often relate stories of other people on this website so people will know I am constantly trying new things and learning from others.

    Most of my family has seen my decline and sort of understands.

    I am going on long term disability and I think my mother is not happy about it - her problem not mine.

    It scared my daughter when she heard because she thinks I'm going to die, now that "I've given up". She also thinks I can just exercise to get better, LOL!

    In other words I think we are all rowing the same boat!

    Take care,
    Susan
  9. lostmisty

    lostmisty New Member

    I let my husband inform them. Maybe that makes me a wuss but he's the one that made my mother get a clue and she's one tough cookie. She's now very supportive. :)

    We could buy "Fibromyalgia for Dummies" in bulk and pass them out like pamphlets. :D

    *holds the philosophy of don't let them get you down, feel sorry for their ignorance and lack of compassion*
    ~Katie~
  10. Linn3

    Linn3 New Member

    After having my pain and fatigue dismissed time after time, I now explain my illness only once. After that, if I am unable to attend a function or have to cancel an outing, I simply tell whoever it is, that I am very sorry to cancel but my fibromyalgia has flared and I don't feel well enough to attend. I am so sorry that I won't be able to spend time with you like we planned. If they care about me, they will accept me in spite of my limitations. Others......well I just answer snide comments by telling the person, " That comment was very hurtful, did you mean it to be that way?" That usually gets them stuttering <G>
  11. Fibrolady37

    Fibrolady37 New Member

    so hard trying to educate family & friends.
    When i told my family i had been diagnosed with ME & FMS it was a living nightmare.
    My father said pull yourself together & stop crying you ve got depression & thats all.
    I was so hard because he refused to let me educate him.
    My older sister also really hurt me.
    She said i was crazy & it was all in my head.
    I was in hospital on & off for 4 months for tests none of my family & friends came to see me.
    The 1st time i was in was mothers day 2 days after & i was so depressed & sad that my girl didnt come to see me.
    Keep your chin up huni i will pray for you & yours.
    Fibrolady37.
  12. Fibrolady37

    Fibrolady37 New Member

    kittycat i forgot to say that before i moved i started going to church & made lots of new frends.
    We all went out for meals,to the pics & did allsorts of things.
    Whenever i was asked to go out i had to say no because they did a lot of walking & i couldnt walk any distance without being in crippling pain.
    They got really nasty & said stop shutting yourself away.
    We are your friends & we love you we will help you.
    Id stay at home because i was to ill to go anywhere.
    Fibrolady37.
  13. Aleida178

    Aleida178 New Member

    Some people just don't get it. I want to scream every time they say, "but you look so good". Most of the time my husband is good but then there are times that he hears me say that I'm not well so often that he actually becomes numb to it. I do feel bad because I know he really wants me to hang out with him and saids that others always ask for me but people often don't realize that we would love not to hurt or be tired. Sometimes I don't even remember what that is.
  14. gingercat77

    gingercat77 New Member

    My mum is having friends round this afternoon and because I'm signed off work sick for 4 weeks, she asked me did I want to come round and visit. I said no, I was far too exhausted to sit and chat(just managed to drag a diagnosis of CFS from my GP after 6 months of complete misery! ), then I got a text message from my sister saying "For goodness sake pull yourself together and make some sort of effort!!". I was stunned....after the initial anger I tried to explain what it was like, but I dont think she or my family will ever really understand, my father thinks it is "all in the mind"!! So I totally sympathise with you all!

    Gingercat
  15. barbinindiana

    barbinindiana New Member

    I like the comment about being rude. Or maybe we could say "I'm sure you didn't mean to be as hurtful as you were." You know, I know that in my healthy years I was guilty of judging some people. I'm not perfect, but I was never rude to anyone, and I always tried to be sympathic. At least I had enough sense to know that I could be wrong.

    Barb