No wonder I never tell people about my illness

Discussion in 'Fibromyalgia Main Forum' started by Marjidoll, Jul 25, 2006.

  1. Marjidoll

    Marjidoll New Member


    I got so tired of the comments... but I took leave of my senses the other day while buying paint. I have chatted with this lady several times where she used to work and now at the local hardware store.

    We were talking about painting and I told her that I had to be the go-fer as I cannot do things like paint any longer. She asked why... I was dumb enough to tell her the truth. I explained a bit about the pain and how I can no longer do heavy housework like push a vacuum cleaner.

    She looked at me for a moment and then said "what do you call that illness again?" I thought maybe she knew someone with it. I told her "fibromyalgia."

    Then she scoffed and said, “I think I will tell my husband that I have that and then I can get out of doing the housework too."

    I simply looked at her and said, "No dear, you most definitely don't want this, be thankful that you can work."

    She gave a disbelieving look; I thanked her for the paint, smiled at her and left.

    I've had people tell me that they envy me as I get to stay home all of the time now. I usually remind them that also means no travel, concerts, vacations and fun things too. Even a trip to the mall us usually enough to set off a nasty flare.

    I know I look perfectly healthy, so I am going back to just telling people that I have "health problems" and leave it at that. I don't want to sound like I have a chip on my shoulder, because I don't, but I would NEVER be insensitive to someone who tells me that they have an illness, wonder what makes people think the way that they do?

  2. glenda2

    glenda2 New Member

    this also makes me mad.there are alot of people i know that have it worse than i do but for the most of the human race alot of them would not be able to stand the pain we are in.
    so many people tell me they have never heard of fibromyalgia like they do not believr you. i know we need to have awareness and i do wear the fibro awareness braclet ans so do my husband and kids.
    but sometimes i would just like to say when someone ask you what you have i would like to MS because people understand that.
    my dr. said it wouldn't matter if i had fibro or ms she treats them the same way. but i still continue to say fibro because we need the awareness. i am just getting real tired of it. sorry to vent. but i will soon say it like you just to go on. good luck.

    glenda
  3. TAM

    TAM New Member

    HI,

    I will never understand people like that either, it just doesn't make any since. I would NEVER be insensitive either to anyone who said they were ill.

    Thats does get on the nerves when people say "oh you look good feeling better" or "oh you look healthy". And i can't believe that lady who told you maybe she would tell her husband she had that so she didn't have to do housework. Could you imagine if she lived just with an hour of the type of chronic pain we live with daily how horrible she would feel about what she said not only that but she would realize that she dearly missed doing housework. I like you i'm sure would love to sweep and mop the floors and feel normal and pain free agian. Oh well there will always be people like that around what can ya do.

    At least here people know how you feel and you will be understood so just come here when you have a bad day instead of letting a "normal" person know what your illness is.I don't have a chip on my shoulder either i just got upset for you knowing what that lady said to you, that was a perfect comment you gave her when she told you that you handled that well, good for you sweetie, your very kind. Take care, Tammy
  4. Marjidoll

    Marjidoll New Member


    Everyone for the support. Sometimes I tell people when they ask that I have a central nervous system disorder that causes chronic and often dibilating pain.

    If they are truly interested and care then I will go into a bit of detail about fibro, but more often than not, they are simply curious as to why I am on disability or why I have a handicapped placard and parking place in front of my house.

    It will always amaze and baffle me that people are envious of my situation. I worked for 30 years before I had to succumb to the limitations this illness places on all of us. I love to work, love people and miss being out in the work force, I always worked from the age of 16. I also love painting and fixing up around the house, travel, singing in a group and so many other things. I do the very best that I can now and remain positive and thankful to God every day for what I have.

    It's good to be able to come here and rant a bit and know that everyone understands, I feel better now!
  5. lovethesun

    lovethesun New Member

    If you tell then you cannot watch TV somedays or read books they start to lose you.I think that they couldn'y conceive of something like this.Could you ,before you got it?Linda
  6. cjcookie

    cjcookie New Member

    AN IDIOT. I'd swear she was my neighbor.
  7. jadibeler

    jadibeler New Member

    Back when it was called Myofibrositis nobody ever heard of it and friends never had it. Family understood because my mother was so ill all her life - but was diagnosed in 1945 with MS. Frankly, I was glad to have any diagnosis to tell people, finally. I was sick all my life but wasn't diagnosed until I was 35.

    But I soon learned that a diagnosis nobody ever heard of wasn't good enough. I still got looks that said "yeah, right. . ." People still thought I was just lazy.

    Now days when I say I have Fibromyalgia people seem to know what it is. The name pops up in a lot of commercials for pain relief products and I've had people say they have it, too, or know someone who does. I haven't encountered any rudeness or disbelief for a long time. I don't know if location (and the difference in how people treat each other) matters but in PA, where I lived most of my life, I got the disbelief and scoffing. Here in East Texas people are much nicer, more sympathetic.
  8. I learned a long time ago never to tell anyone, no one cares anyhow and they just look at you or say I think I have that too.
  9. Marjidoll

    Marjidoll New Member


    Yep.. Pennsylvania. Strange eh?

    The people who know me know that I am sincere. As for the others who don't, I guess it would be very difficult to imagine such an illness and so many limitations.

    I have good friends who are in much worse shape than me. I think of them and pray for them every day. Several have MS. one being wheelchair bound unable to move anything below her neck. Makes me wonder what the connection is, is it environmental? There were so many large steel manufacturing companies here for many years. Is it the inoculations we all received? I don't know, but I for one would rather feel like sisters than envious adversaries, I think everyone here would agree!
  10. dononagin

    dononagin New Member

    it gets pretty old doesn't it! I had a visit with my dermie this week.. Cortisone shots into the scalp for lessions.. She aparantly doesn't believe that CFS has anything to do with your immune system and thinks Fibro is depression.. I'm so sick of uneducated people!
  11. blessedmom2four

    blessedmom2four New Member

    i have an immune disorder, that makes me sick with severe pain, exhastion, and many other symptoms...

    and leave it at that
  12. erfula1

    erfula1 New Member

    There is too much negativety associated with Fibromyalgia. They should give it a new name now that there is a better understanding of what it is and define it as what it is. An autoimmune disease that affects all the muscles, joints and organs. I don't even like to say I have fibromyalgia much less chronic fatigue. I mean chronic fatigue, how lazy does that sound? It isn't fair!!!!!!
  13. sisland

    sisland New Member

    I knew a lady that i used to work with and she has FM also . and she said that when people tell you that your looking great that you should say. "thats just another symptom of Fibromyalgia"!!..........................................and i have to agree!...................................blessings ..................sydney