Tired of hearing "Oh I know someone with Fibro"

Discussion in 'Fibromyalgia Main Forum' started by Suzan, Jan 21, 2006.

  1. Suzan

    Suzan New Member

    since I live in a rural area...and have had FMS (dx'd at least) for 3 years...it has been a long stretch of not very much interaction with a lot of people. But, just lately , I have had 3 different people tell me about someone that they know that has fibro...and how SUCCESSFUL they are at , working, running, raising their kids...BLAH BLAH BLAH. And this has happened at other times, from other people the last few years too. My own father , when he heard that I had been dx'd, called me to see how I was, and the first thing he told me was he has a neighbor in Florida with FMS, and she is a drug addict, taking all sorts of pain meds...and he hoped I wasn't going to be taking all sorts of drugs. ARGH!!!

    Anyway...I guess today , I am finding that I am tired of people telling me "how to be sick". I feel like I am doing the best I can do, and it seems like these people- the "friends" and family who are supposed to care about me...really aren't behaving in a very caring way. Having read these boards for a while...I know this has been written about before, but this morning, I am just feeling "less than" because of this darn illness I guess. Part of that is the fact that people really think we are mainly "ok". That if only we - exercised- ate better- got out more- slept less- slept more-took the right pill- on and on and on...Then we could just be normal again.

    I understand that it is a long while since these people have seen me be well...and that they don't understand the illness...But, I guess I am annoyed at the fact that they don't really trust ME to do what I can about my health!

    I am tired of being on the sidelines too! I got movie passes for my birthday in July...and still haven't had a time where I felt good enough to go! If I go out...I pay for it by not doing things at home...if I do things at home...I pay for it by not being able to leave the house. This sure isn't something any one would ask to have...but HOW do I deal with people that really do seem to care about me....but have to keep saying things like..
    "oh, I know someone with fibromyalgia....."
  2. bpmwriter

    bpmwriter New Member


    casually mention that one of the most interesting things about fibro is how everyone experiences the illness differently. i think this is the idea that most people find so hard to grasp. since there's few outward signs and modern medicine has no set protocol for treating fibro, normals simply can't get their minds wrapped around it. they view it from a distance based on their own past experience and biases.

    my mother is always questioning the autonomous decisions i make regarding medications, dosages, etc. as she's used to strictly following a doctor's orders. i have a hard time explaining to her that my illness doesn't work that way. it's all guesswork and intuition.

    well, at least we have this message board where we can share our common journey with other understandin souls. imagine where'd we be without the internet!

    be well,
    eddie
  3. Alyndra

    Alyndra New Member

    It's all the same, all the time.

    Someone ELSE with it is always an example of miracle health; yet the people that see us everyday still don't understand. It's disgusting.

    Last person who I heard "Oh I know this person who has Fibromyalgia and they're doing great!" I caused a little trouble and decided to turn their arrogance against them and replied with "oh.. and they never told you it's highly contagious?"

    Such a PLEASENT look on their faces!

    ~Amanda
  4. Shannonsparkles

    Shannonsparkles New Member

    ME!!!!! And ya know what, I'm not doing great!!!!!

    Elliespad, good for you to check up on these people.
  5. nanna4550

    nanna4550 New Member

    Some people I know say "they have FM too." Just because sometimes they are exhausted and their muscles hurt or they are achy. IT DOESN'T GO AWAY AFTER RESTING FOR AN AFTERNOON WHEN YOU HAVE FM!!!!

    Well, if you look up Fibromyalgia in the dictonary, it refers you to Fibrositis; a chronic disease syndrome marked by debilitating fatigue, widespread muscular pain and tenderness at specic points on the body. Myalgia; is defined as pain in the muscles; muscular rheumatism.

    Some of us seem to be doing fine on the outside, because we are still trying despirately to keep up with the expectations imposed on us by husbands, children, bosses,churches and we struggle through the day in constant pain feeling exhausted day after day after day as if we weren't hurting. Then we go to sleep at night only to wake up after 4-5 hours (if we're lucky) and do it again for another day.

    Here is it Sunday, and instead of resting all day, I prepared dinner for tonight and for a few nights during the week so when I get home from work I wouldn't have to spend another 2 hours standing in the kitchen. It sounded good when I planned it.

    So, I was hurting too bad to sit through bible study and sent my husband off by himself and I feel guilty. Why do I feel guilty?? I worked all afternoon while he watched football!!!

    OK, I'm ranting when I should be encouraging. I think my point is that those people that look like they are coping well with FM probably aren't doing any better than the rest of us.

    I know our friends and loved ones don't understand, it's so frustrating. People have asked me if I still have FM, as if it was a flu bug that I've had for 5 years. They just don't know anything about it, I guess.

    Hang in there, Suzan. I totally know how you feel.
    Nanna


  6. Bailey-smom

    Bailey-smom New Member

    "Oh, I had that once"

    I just smiled and did not answer.

    Loser

    Kelly
  7. Suzan

    Suzan New Member

    A CLEVER ANSWER!LOL
    I think that I am a pretty up-front sort of girl. If I feel crappy..I will often say just that. But, really people don't know how to deal with someone being sick I guess...it makes them uncomfortable..and they don't know what to say...
    So, if YOU have a great answer for..

    HOW ARE YOU FEELING?
    or
    I KNOW SOMEONE WITH FIBRO...

    Post it here..and hopefully I find one that clicks for me.
    Although I will probably have to write it down..and then put post notes all over to remind myself that I have something clever to say!LOLOL
  8. AnneTheresa

    AnneTheresa Member

    I've been fortunate because the last few times people have said that to me('I know someone with fibromyalgia') they've gone on to tell me that they understand what a horrible illness this is, and that they're sorry I have to live with this condition.

    One woman went on to tell me that her sister has fibromyalgia and when she (the sister) wakes in the morning she's unable to walk to the washroom, therefore starts each day by crawling to the toilet. (Boy do I know what that's like!).

    Another went on to tell me that his aunt had to retire with a disability from a teacher's position because the pain and other symptoms were overwhelming. Another told me his mother who has fibromyalgia spends much of her time housebound and needs to use morphine to function.

    So, I think the tide may be turning. As more and more of us 'come out' and let the world know the severity and extent of our issues, (some) people may be getting the message.

    To your family, friends and acquaintances, you ARE the person they know who has fibromyalgia. So, if you're able to educate and convey the severity of this illness to them, then perhaps the next person they meet with fibromyalgia and say this to ('I know someone who has fibromyalgia')it will not be received as an insult, rather the person will be the fortunate benefactor of their understanding.

    I don't mean to sound too Pollyanna - I do recognize the problem and have been on the receiving end of some pretty ignorant remarks. I just wanted to let you know about some positive experiences that followed the statement 'I know someone with fibromyalgia'...

    God bless,
    Anne Theresa
  9. treelady

    treelady New Member

    I want to reply too, I really enjoyed this thread, it brings up a problem that I have, knowing how to talk about my fibro. I usually say that I'm ok when asked. And after reading your answers I see that I should be doing some teaching along with my remarks to friends. I wish I had some numbers to toss into the mix, for example ________ Americans are now on disability due to FM or the CDC and other fed agencies such as ________________ recognize FM as a disorder: things like that. Anyone have any facts I can include in my "lectures"?