What do tell people your problem is?

Discussion in 'Fibromyalgia Main Forum' started by Sheila01, Oct 8, 2006.

  1. Sheila01

    Sheila01 New Member

    For the CFS'ers, I was wondering what it is you tell people your problem is. Do you say 'cfs'? I am just curious, hoping I can find a better way to explain if people ask me or I have to tell them. I came to the conclucion that I don't have to give it a name, maybe I will just say it is an energy metabolism disorder. How does that come across to you? For me it seems the viral aspect is long gone, and am left with the post exertional 'fatigue' aspect of it.
  2. Granniluvsu

    Granniluvsu Well-Known Member

    Hi All,

    I agree with Angela. I just tell them Fibromyalgia . They may not have a clue but I guess it sounds bad enough tht most people will act concerned about you. As she said, CFS or Chronic fatigue sounds like a load of - - - -. Most will say or think to themselves and so do I or big deal !!

    If they keep asking about it after you tell them fibromyalgia I just tell them that you have alot of pain & have other weird symptoms. That usually is enough for them for awhile.

    Hugs,

    Granniluvsu (Marilyn)
  3. Hope4Sofia

    Hope4Sofia New Member

    I tell them I have dysautonomia. It leaves them confused enough to legitimise it. They don't understand it so they just figure it's over their heads. Well, it probably is.

    I do have dysautonomia, most of us do.

    Sofi
  4. shar6710

    shar6710 New Member

    To me it depends on the situation or even the vibe I get from them.

    Some people don't necessarily deserve anything other than "I have a chronic medical condition". If questioned further it is not rude to politely refuse to elaborate.

    If I have the energy to get into a whole conversation about it I'll tell them CFS. But I've learned not to be upset if they "don't get it".

    Of course family and friends deserve a complete education.

    Looks like your pretty new here, so welcome! And if you would like fill out your profile so we can get to know you better.

    Shar

  5. Roseblossom

    Roseblossom Member

    I tell people "I have a chronic illness that sometimes flattens me completely".

    If they enquire further, I tell them "I have CFS - Chronic Fatigue Syndrome."

    If they ask more I say "It's a multi-system illness involving the neurological, endocrine, & immune systems." (I practiced saying this til I could say it without stammering :)

    And that's it.

    I never say simply "chronic fatigue". Lots of other illnesses have chronic fatigue as a symptom.

    Chronic Fatigue Syndrome is a real illness, so always refer to it using the full name or the full acronym - CFS.

    There are already too many misconceptions about us, so you could look at any inquiry as an opportunity to do a quick little education & advocacy that benefits all of us.

    Best,

    Roseblossom
  6. wkirk87

    wkirk87 New Member

    I always say CFIDS/Chronic Fatigue Immuno-Deficiency Syndrome. I find once you add in the Immuno-Deficiency part it gives it the credibility it needs. ;)

    With other people that have CFS/FM I call it CFS/Chronic Fatigue Syndrome to save time/energy because I don't need to say the full thing, but I've found that CFIDS/Chronic Fatigue Immuno-Deficiency Syndrome works quite well. :)

    The CFIDS/Chronic Fatigue Immuno-Deficiency Syndrome comes from some national organization, I forget exactly which/what one. I didn't just make it up out of nowhere, thus credit for the name goes to that organization, whichever/whatever one it is. Darn brain fog. ;p
  7. Roseblossom

    Roseblossom Member

    That's actually Chronic Fatigue and Immune Dysfunction syndrome... not "deficiency" syndrome like AIDS (Acquired Immune Deficiency Syndrome).

    The CFIDS Association of America got me started calling it CFIDS too, like you; but recently I've switched back to CFS because it's a shorter sound-bite and people seemed to "get" it quicker.

    And no one says "ohhhh is that like AIDS?"
    blergh...

    Roseblossom :)
  8. hermitlady

    hermitlady Member

    And then I usually have to give a brief explanation of how it makes me feel.

    I usually just say that I hurt all over like a bad flu and I am always extremely fatigued. Thats the plain and simple truth!
  9. suz45

    suz45 New Member

    I have been fairly selective about who I choose to tell about my FMS/CMP. First if it is I get any sort of feeling that they would think I'm a "hypo" forget it. Also I feel its on a need to know basis, I told n=my family early on, only because at the time I was dx I was attending a family function and everyone had expressed concern due to my appearance at that time.. However, because the majority of people in my family work in the medical professions I really didn't need to expalain.

    As far as work is/was concerned I was very cautious, as few people really understand. Just think about the way many in the medical community react. It's almost like you can see them rolling their eyes.

    I use n=my "guts" on this subject and feel as though I need to know the individual before I talk about it. Afterall it is a personal matter that each of us has to feel comfortable about disclosing.

    I have found though that people with other chronic disorders are more accepring and easier to talk to.

    suz45


  10. wkirk87

    wkirk87 New Member

    Me too. I never tell anyone by choice. I think I'm a little fortunate in that way. Being pretty much bedwridden at 19 makes it blaringly obvious that something's wrong to pretty much everyone, so no one ever gives me the old "Yeah, I get really tired too." I'd never thought of that, but that must be pretty annoying to deal with. :(

    And thanks Roseblossom! :)
  11. monicaz49

    monicaz49 New Member

    I have FMS & Chronic Fatigue.
    I prefer to say both and in that order.
    First Fibromyalgia because its the more legitimate sounding
    and then Chronic Fatigue cause I want them to know why i'm always exhausted.
    Sometimes even I feel like they are bogus names.....so i can imagine how others feel.
    I told someone once i had fms and he's like....."ohhh ya i had that in my leg. its like a name doctors give ya if they dont know whats wrong with u. mine actually went away."
    that pissed me off...he made it seem like its a name doctors diagnose you with only to PACIFY you cause they really DONT know what is wrong with ya.
    I dont even think his leg pain was fibro anyways.

    i wish there was a new name that covered both issues.
  12. boltchik

    boltchik New Member

    If I say chronic fatique syndrome, people just don't get it. Some have even said, yeah sometimes I get fatique really bad also. To tell you the truth, I don't tell very many people at all. When you feel crappy on a regular basis, I guess I just don't want to seem like I am complaining all the time. Only my closest family knows. But if people inquire, fibromyalgia works best for me. If you don't have fibro, then adding immune dysfunction syndrome might help to encompass more symptoms than just the fatique. Kim :)
    [This Message was Edited on 10/08/2006]
  13. Erotika2

    Erotika2 New Member

    I've had CFS (post-viral) for a year and a half now.... and I am just learning now how to deal with 'outsiders' on this issue. I am getting all the time "oh yea, I had that last year, I was really tired too" or "I think that's what I must have!" Its REALLY making me mad....and I don't know how to react. The other thing I am getting 20 times a day is........"Oh you have CFS, well I've heard that this (fill in the blank) pill will fix that right up!" or "You have CFS, well I've found that (fill in the blank) pill worked great for me when I was tired"
    I know that all the advice comes from a good place and from people who really do want to offer help and advice....but they really have not a clue what i am going thru or how severe this really is. I am a very strong person and I do most of my suffering at home, by myself. I know this is part of the problem, but I just can't stand even answering the phone or answering the dreaded question "how are you feeling or what is wrong with you" because I know Im going to get a half hour of self help, random dr names and this and that activity to help cure me. It is very exausting....... (sorry for the venting) but yes, this is a great question !
  14. Beadlady

    Beadlady Member

    at my new job that I have an illness and I hope it stays that way. I just do not want to deal with being sick at work anymore. Its just too much of a hassle.

    Besides we're all busy making phone calls ourselves and there doesn't leave much time to chat.

    I don't know if my former employer said anything or not. But I do know that my personal refernces were not called.

    [This Message was Edited on 10/08/2006]
  15. maedaze

    maedaze New Member

    Yes, it's still a big question even after 12 years! It was always knowen as M.E over here and carried a fair bit of weight to it, but then along came the good ole USA and started the chronic fatigue syndrome. And some how got it out into public perception that M.E was really JUST chronic fatigue syndrome which is a psyciatric disorder etc etc..

    That name has done alot of damage over here as far as credablity of an illness goes. So even if i use I have M.E most people are - isn't that just chronic fatigue syndrome? Always a just in front of it. Like saying theres nothing wrong, just get some sleep and get over it!

    I just tell people now that i am chronicly ill. If thats not enough and they want to know more, i tell them I suffer daily headaches and migraines, my hips and back are always in sever pain, i have food allergys and intolorences to light sound strong smells.

    I havn't had a good nights sleep for 12 years but sometimes can sleep for 20 hrs out of the day.. and still feel like i've had no sleep, then there is the other body pain i get in my legs, shoulders arms etc.. Usually by this time there eyes have glazed over - they are usually not interested in the first place.

    Now and again i do get a response like. gee you sound just like my sister, she has M.E and fibromyalgia!!! And they are like why didn't you just say that???

    Some days you can't win. But i do like the 'chronic immune dysfunction syndrome' one though. Might use that, will leave out the fatigue part, it's the fatigue part that everyone ridicules it for.
  16. Suzan

    Suzan New Member

    It shouldn't be..but it sure is! Often I don't tell people anything at all...it takes way to much energy to say Fibromyalgia..and then so many people don't even know what it is still..or haven't even HEARD of it which just amazes me...and so you have to explain...and it is way to goofy sounding to them..and then in the end they end up forgetting that you even ever said you were sick to begin with!
    Now..the people that I am close to..they know..and are somewhat sympathetic, but except for a couple of very close friends and family...most of them don't really understand what I go thru every day...and after several years...I am getting the "you are still sick????" sort of looks and responses...So..IF someone bothers to even ask how I am doing...I tend to just say.."ok" and leave it at that.
    EXPLAINING just takes up too much energy!

  17. mollystwin

    mollystwin New Member

    I like Roseblossums answer. I'm going to try that technique for a while. I also used to say CFIDS, but it was too long to say. And I have had people ask me if it is like aids.
  18. reeny64tang

    reeny64tang New Member

    Hi All,

    Just wanted to say I have Fibro, and I get the same kind of replies you all get when I tell someone I have fibro.
    "Oh, I heard you just have to exercise and you feel better."
    "Oh, just take antidepressants, you will feel better."

    "Oh, just take ______, oh just do ______ and you will fee better."

    Or.....

    "I had fibromyalgia and my dr. gave me muscle relaxers and I have been fine for months."

    Even saying you have fibro invokes alot of sarcasm responses.

    Just thought you would like to know.

    I don't think any of us should have to explain to people. I hate feeling like I am lying or making something up.

    And I too am so sick of hearing that someone else had fibro and now its all gone.

    If they did....god bless them and share the secret.
    But my feeling is, they probably didn't have fibro to begin with.

    Thanks for letting me share.

    Hugs to all.
    Reeny
  19. Marta608

    Marta608 Member

    Just catching up here...

    It depends on the people and kind of on a "need to know basis". If it's someone I may only see occasionally I don't even mention that I'm ill. If it's someone I will see often (as often as I see anyone...) I will tell them that I have CFS - at which point I may launch into "You've probably never heard of it or you've heard that it's depression but it's not... I've had it for 12 years and I've learned that there are some days that I can do more than other days." Then I stop there.

    Or I may simply say I have some restrictions because I have a chronic illness (I hate saying that.) If they've (gasp!) actually heard of CFS and (double gasp!!) know something about it, I might say more but usually not.

    I believe that one reason we avoid social situations - other than the fact that they deplete us - is that we may have to explain ourselves.

    Marta
  20. millennia

    millennia New Member

    I think it's interesting that people with CFS tell people they have FMS. I only have fibro and when I try to explain to people what is wrong with me I tell them it is like chronic fatigue, but with chronic pain and fatigue. At least most people have heard of cfs.