Trying To Explain Our Illness

Discussion in 'Fibromyalgia Main Forum' started by MJJBunny, Aug 17, 2003.

  1. MJJBunny

    MJJBunny New Member

    Have you ever gone through a whole lot of explanation about our illnesses to someone you knew, only to realize that you wasted your time cause they have no idea what you were talking about.

    You'd think after 15 years I would know better. But I did it again, expecting a miracle I guess. When I thought about it later, I realized how foolish I was to have even bothered.

    Anyone else still do that?
  2. Shirl

    Shirl New Member

    Bek is so right, it is frustrating to try and explain this illness to just about anyone. I have had people say;'oh I can't sleep sometimes too', or 'yes, I get backache like that', the worst is; 'Fibro WHAT??'. Then there are those who say; 'well you don't look sick??', that one I have a pat answer for, I will tell then that I do not have a problem with my LOOKS, its my body that hurts :)

    I have learned after twenty years of these kinds of stupid answers that I simply say no to whatever anyone ask me. Its easier than trying to explain why you can't do this or that or go here and there.

    I have learned to simply not mention my illness to anyone other than my immediate family.
    At least they try to understand even though I realize that anyone that does not endure all these crazy symptoms can't possibly understand how we feel.

    We all make the mistake sometimes, don't let it get you down, people who are healthy just can't imagine anyone having sickness that changes from day to day.

    Shalom, Shirl

  3. PhoenixRising

    PhoenixRising New Member

    In trying to explain to friends why I dont feel like going to a movie, or picnic (ewww, that sun!) or other function I made the mistake of trying to explain. After a couple of times when I explained for 10 minutes and got the response "I know how you feel...I have days like that too but you need to just shake it off and have some fun!" Or "What you need is to get out and relax". Thats when I realize that they think I am just in a funk. They really dont get it. So I have decided that I wont explain unless really pressed to and at that point I will whip out my literature that I downloaded/printed for Companions and Friends of FM/CMP. It explains better than I can and establish from the start that FM/CMP/Lupus etc are real illnesses and not just "the blues".

  4. hollie9

    hollie9 New Member

    Even when my husband has given family and friends printed copies of articles on this illness repeatedly...when I say I can't do something they say "why?". They don't remember even when it's been explained to them many, many times.

  5. todayisagift

    todayisagift New Member

    Yup definitely, I have friends, not great friends but friends who still tell me I need to go out and exercise more often which I did join a gym and do little yoga dvd's at home now! I had a big mishap with my soon to be mother in law which I used to be very friendly with when I used to visit her in IN. She acted very strange to me these past two times I've been there, I think there are other things involved besides my having FM that are for another day but one thing that my fiance mentioned to me was that they were discussing the differences and she mentioned to him don't you get tired of constantly getting things for her. He said no I love her and that's what you do for people you love. She didn't ask to be like this. I was so proud of him for saying that. She is a respiratory therapist too, she should be ashamed for not understanding enough, and plus I've talked to her about it quite a few times. I get so frustrated and angry with people
  6. Lexied

    Lexied New Member

    when you TRY to explain to someone why you can't "go on a vacation" or "get out more" and they just give you that blank stare!! Or worse when your closest friends and family (that you THOUGHT understood) say "What did you do to feel so bad?" or when you have a flare up say "That's what you get for over-doing it!" AHHHHHH!!!! When they say that you KNOW it won't do any good to tell them that all you DID was unload the dishwasher!!! Like it's MY fault I am hurting!
    As I'm posting this I realize what a waste of time it is to get so angry & upset about what people THINK. I just have to stop and remember how I was before I got this awful disease... even though I always thought of myself as VERY compassionate, I didn't REALLY know how bad people hurt or how sick they REALLY were. I had never even heard of Fibromyalgia before I got it! I used to hear my grandmother talk about her arthritis flaring up or say "I can tell it's going to rain" when she couldn't get out of bed. Now that I think back on the things she used to do, even though she was in so much pain, it makes me feel so awful that I didn't understand how hard it was for her. I guess my point is that, as a previous post said, unless you HAVE FM you really can't understand all the crazy things it does to you.

    Praying for Understanding -

    Love, Lex
  7. kmj47

    kmj47 New Member

    Hi mjjbunny, Yes ive been there done that.It seems like a hundred years ago though.
    I dont waste my tme on it anymore.I feel like i have to keep it secret. Iam living my life away from my family because they choose not to accept me for how i really am.

    It does bother me to a certian degree.I have acceped my illness. This Illness didnt break up my marraige but it didntkeep it togather either.
    I am coping with this thing on my own, i have agreat GP who helps me with my meds and any thing i my need hes been there thus far for me. Iam truley lucky to have found him. I did struggle for a long time to find a good gp, that is one of the keys whith this dd.
    Sorry Iam getting long winded here.

    I just wanted to ackonagle this post it is a Great point Bunny!
    The other thing that helps me sooooo much is having this board for support...I have a few friends close to me here that have chronic problems.
    I used to go over to the local hospital for support mettings, it became difficult to get out each week,especilly during the winter months.

    Take care Bunny


  8. ksp56

    ksp56 Member

    It's been four months since my diagnosis. I have found out, QUICKLY, who support me and try to understand and those who can't or won't. I rely on my wonderful husband, a few friends, and this board. I am very close to my Mom, but she tends to make comments which are very counter productive. After talking with her last night and telling her how I feel after some of her statements, it really sunk in that she isn't a 'safe person' in regards to fibro. For other issues, but not this.

    I'm with Shirl, I tend not to mention it to others outside of the above people. It just isn't worth it........

    You're in good company Bunny. I think we've all been there!


  9. keeponsmiling

    keeponsmiling New Member

    Can I ever relate to this thread!

    My whole attitude about people has changed because of this disease. As a home health RN, I listen more now when my patients tell me their symptoms and how they're feeling. I let them talk now, instead of offering up suggestions. Like me, sometimes you just need to vent.

    I can't tell you how many times someone has said to me, "Have you tried exercise?" or "You'd probably feel better if you lost some weight" or "You know, sometimes it's a mind set... you just have to shake it off and stay busy."

    **feels blood pressure rising**

    I swear, I am not a violent person, but my hand just itches to slap someone in the face when that happens. LOL

    I don't try to explain anymore. My husband and son try to be understading, but even those people who are closest to you can't really know what we're going through.

    I've come to the realization that you cannot control what other people think or say about you. It's out of your hands. And I feel an enormous sense of freedom in that realization.

    So what if the neighbor next door sees you still wearing your pajamas at 1:00 in the afternoon?

    Who cares if dinner gets served on paper plates? Sitting down to watch television with my family is more important to me than wearing myself out with a sinkful of dishes.

    So you went to the library or the supermarket in sweats that have seen better days and your hair is a mess and you have no makeup on. Big deal. At least you were able to run an errand and find a good book to read.

    :) :) :)

    I've found that this disease is a private one. And that at least for me, it's better to just keep it that way.


  10. Coll29

    Coll29 New Member

    Explaining CFS/Fibromyalgia is a no win situation. My family prefer the "she's just nuts" explanation. Friends are sympathetic initially but then, "get over it" comes into play. I cannot believe how many doctors told me to get "psychiatric help." Thank goodness for pets. My bunny rabbits love me no matter what. If I have energy and if I don't, they are quiet, affectionate and entertaining. They are my support system. I am appreciative for this computer venue. My doctor, whose wife had CFS/Fibro told me playing solitaire on computer helped cognitive functioning as well as crossword puzzles. He was right. If you don't use it you lose it. Sometimes the simplest of things can enhance your day. Coll
  11. Chrissy3

    Chrissy3 New Member

    I can relate to this. Just the other day I was explaining to my Manager why I cant do things and he thinks Im thinking about it too much - he said alot of it is in my mind. "positive mental attitude" is his favourite expression. I normally laugh it off outwardly whilst gritting my teeth, but on this occassion I said "I am not going to waste time worrying what you think"

    Coll I just love bunnies, I used to have 2 - they are incredably intelligent and you are right the simplest things can make your day.
  12. Pindooca

    Pindooca New Member

    It's really rough when even your husband thinks you are a major hypochondriac!
  13. JP

    JP New Member

    it is so difficult to explain. I don't even try it with my doctor. I will usually tell her of a new symptom or if one is getting really bad.

    Sometimes I think I will sit down and try to write a day in my life and add some of the stange attacks and other assorted things that many of us deal with. I can describe my autoimmune thyroid, widespread arthritis and the mechanicals problems in my spine.

    Describing FMS is a hopeless cause for the most part. I find that I don't talk about my health much at all. When people ask I usually tell them that I am adjusting to my new life. Even though I have had this stuff for years. This is the first time I have been unable to work in the world. That comment seems to be good enough for most.

    Hope you are having a good day...Jan
  14. Hinemoa

    Hinemoa New Member

    the comment, "At least you GET to rest," Auuuugh!

    It's not funny, but you just gotta laugh,

  15. kmj47

    kmj47 New Member

    You have the correct idea, as far as edutating folks on our DDs. But ive found that most people dont really want to know.
    Ive often wondered why , when somone says to you Hey how are you, do they really care enough to to ask. Its just out of polightness to ask how someoone is.
    I guess the truth hurts, only if its true.
    Any ways i will tell someone how i feel if i think there is any remote possibility they can understand or really want to know.
    I just tell them to think of the worst flu that thay ever had, when they can imagine it i tell them to multipli it by ten. Most times people can understand it. My family knows iam sick a lot for whatever there reason(maybe they want to fool themselfs) I just dont know, but i have to just keep on living evry day the best i can.
    Just battling everyone tends to frasil me i try to keep my chin up.
    sorry so long winded, i saw what achybraky had mentioned and i wanted to respond because that is a great anology likng (fm) to the flu.
    Just My Take on it guys
  16. Shirl

    Shirl New Member

    Maybe we should just tell them all; 'We had a big night out on the town and we are suffering from a Giant Hangover!'

    Shalom! Shirl
  17. IgotYou

    IgotYou New Member

    Before I had FM - when I was on the outside looking in - I thought both it and CFS were probably in large part hypochondria, but that certainly they were beatable if people would just eat right, rest, and exercise. Now that I have been diagnosed, I realize that I was wrong. But that leads to other realizations, such as the worst one: that no matter how hard I try, or what remedy or exercise/diet plan I go on, I will probably not ever be rid of it, and that I'm destined to a lifetime of being viewed as a hypochondriac by a whole lot of good people out there who mean well and who I wish would understand me, but also hope never will! There's a whole psychology out there about us, and unfortunately I have adopted a lot of it myself, so it's very hard for me to overcome it and face my own illness.
  18. LABullard1212

    LABullard1212 New Member

    My symptoms began over 20 yrs.ago. Ten years ago,physical and emotional stress began taking its toll. Six years ago, radiation from breast cancer,took what was left of my immune system. I was hit with Ebstein-Barr, came down with mono and the Fibro came on full force. Even though I went back to work, it was a struggle. I got so tired of co-workers telling me how good I looked, when I hurt so bad inside. My family couldn't understand either. My friends would only get angry with frustration if I had to cancel plans. They can't comprehend why I've become a recluse. My daughters, ages 25 and 23, are very attentive to my husband, who is diabetic, and not taking care of himself. so, they are always checking on him. Lecturing him about taking care of himself.And defend his total lack of helping me maintain our home. My oldest never asks how I am doing. My youngest seems to be grasping what my condition is like.But if my oldest stops by and sees me laying on the couch, I'm just relaxing, or being lazy.She has yet to try to understand and accept that I have a serious and sometimes debilating condition. Her total apathy towards me is heartbreaking. I could go on, but I think you get the picture.
    My thoughts go out to all that are in this situation.

    We need support and its hard to find.

    [This Message was Edited on 08/19/2003]
  19. Aabit

    Aabit New Member


    I pray for you, I dont know what I would do right now if my huby wasnt supportiv of me, and my kids are young but the 4 yr old already tries to help mommy. I feel for you and wish you and everyone else that has a bad experiance the will and grace to rise above it like we all always do. My worst person is my mother in law. She acts concerned and then talks real bad about you behind your back. I am finally to a point with her that I halfway dont give a darn about what she thinks.

    Loves of soft hugs and big prayers for us all
  20. LABullard1212

    LABullard1212 New Member

    Forgot to tell you how life can take a turn. A dear friend became very critical of the narcotics I was on, about 3 yrs.ago. She was also one who lost patience with me alot, when I would have to cancel plans.We were very close. I was Godmother to her child, but our communication became nonexistent until I saw her about 3months ago at a memorial service. We began talking over the internet. I saw her 2 weeks ago at my oldest daughters graduation from the police academy. She came over and sat down with me for a few minutes and told me she had to be tested for MS. Turns out she doesn't have MS, she has Fibro. Looking back, I believe she has suffered from CF. She had to go out of town, but when she returns, she wants to get together. Gee, I wonder why?