How can they possibly understand?

Discussion in 'Fibromyalgia Main Forum' started by tawnyjade, Sep 8, 2006.

  1. tawnyjade

    tawnyjade New Member

    So... Is there some way to explain how a person with CFIDS feels, and how it just isn't possible to do what we used to do?
    My boss thinks CFIDS is synonomous with depression, and I'll be okay in a week or two(although, I believe it takes longer than that to get over depression). I can't even make it through a normal work week without taking a day off because I feel it isn't safe to drive due to my extreme fatigue.
    What are some things to emphasize to employers, co-workers, friends and family so thay can try to understand?Tawny
  2. Marta608

    Marta608 Member

    Sorry, Tawny, but in a nutshell, they can't.

    No one; not doctors or nurses or other health care professionals or family or friends or TV show hosts.... no one can understand if they don't have CFS. Even here on the board I occasionally read a post from someone with FM who has very little fatigue - and they don't understand CFS.

    I've gotten to the point where I understand them not understanding. While I have the utmost compassion for someone going through chemo, for example, I really don't understand because I've never, thank God, gone through chemo.

    Unfortunately, this lack of understanding is what sends many of us to our rooms to appear only like the icon by this post. When a person is so tired that they're sure the next step must be death, avoiding explanations becomes preferable - and the only true way to avoid explanations is not to be with people. I repeat, unfortunately. Because not being with people is lonely and people often have paycheck for us if we can do a job.

    Can you imagine how much easier it would be if you could just slide through the door in your bunny slippers and jamjams, do your work in peace with no interruptions, no sense of concern about what people think, collect your pay -and then go home?

    I don't know many if any jobs like that unless they're jobs that can be done at home. I really believe that more of these types of jobs must become available as more disabled people want and need to work. (I'm also sure there's a wonderful, money-making idea here for someone with energy.)

    Meanwhile we do what we can, what we have to; we bless the unbelievers and move on if possible. When we can't, we hold our heads high and pray for awareness to come to the mainstream.

    Good luck!
    Marta
    [This Message was Edited on 09/09/2006]
  3. homesheba

    homesheba New Member

    i have tried for ten years or longer to explain.
    but all the time i am re asked ' why cant you do this?"" or blah blah - you dont look sick""...

    . i could actually have a nervous breakdown from it and sometimes with the constant pain and weakness i feel like i will....even family members still seem to have trouble believeing it!!

    sometimes i have to literally beg god to help me get dressed,
    i sometimes am so weak i dread trying to make it to the toliet...
    its the most incidious sickness i could dream of...
  4. tawnyjade

    tawnyjade New Member

    Wow!
    You guys are great! I think I will not only print -ouch-'s reply, but I will print this whole thread!

    Thank you all so much.

    Tawny



  5. Lendy5

    Lendy5 New Member

    The Letter To Normals

    Hello Family, Friends, and Anyone Wishing to Know Me,

    Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

    I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

    You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....

    Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

    Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

    I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

    Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

    And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

    On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

    So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

    Thank you for spending your time with me today. I hope we can work through this thing, you and I.

    Please understand that I am just like you.
  6. pepper

    pepper New Member

    You have some really good, thoughtful replies here, Tawny. I have tried for almost 14 yrs to explain this to people and they just can't get it. This is what brought it home to me:

    I have a friend with severe CFS/FM, much worse than mine. When I am having a good spell (lets say at 35 or 40 according to Dr. Bell's disability scale), I find it very hard to empathize with what my friend is coping with at 25 or 30 per cent!

    Now, if I have to struggle to remember how I was a few short weeks ago and how I couldn't do x, y and z because of the exhaustion, how hard must it be for someone who has never in their entire life experienced it?

    When I first came down with CFS, I couldn't believe that a person could actually be this exhausted and still be alive. I had been tired a lot because I led such an active life but to actually wake up in the morning more exhausted than I had ever been is just beyond the "normal" person's comprehension.

    Pepper