an invisible life?

Discussion in 'Fibromyalgia Main Forum' started by tamsyn, May 26, 2008.

  1. tamsyn

    tamsyn Member

    Is it just me or do other people feel as though they are living a sort of invisible life? My friends are sympathetic yet they really know very little about CFS/ME and have almost no idea how this illness has shattered my life. I've developed so many coping skills that other people don't even realize I'm leading a life so completely different to the one I planned on having. My family are loving and supportive, but they have no idea what this illness is all about. I don't think that one person in my life has ever read any literature about ME.

    And how can one keep sharing one's true life (the invisible life) without turning into a boring whiner? So when people ask how my day was, I don't give the true answer: " My hands and feet are burning, I have elctric shocks running up both legs, I'm so tired I could cry, I'm so depressed I could cry, my back is in a hundred knots, and I have waves of weakness and nausea." No, that's all my invisible life. Instead I say "Pretty good. How was your day?" and smile at them.

    Maybe everyone with any kind of chronic illness feels this way: there's the invisible world where they live with their illness, and the public world where they try to seem 'normal' to everyone around them. Sometimes I wish there was one person on the plant to whom I could just have a big honest moan about what I really experience every day.

    I write (type) for a living; I've just realized that not one single person in my life even knows that the illness has affected my co-ordination to the point that I can barely type. About six words in every sentence will have to be caught by the spell checker and retyped because I have mis-typed it. So every day, I get up and do something that I have a struggle doing -- and not one person even knows this fact!

    Oh well, just wondered if other people on this board have this experience of lonliness and isolation, and how you deal with it.
  2. sharon5650

    sharon5650 New Member

    Oh Yes..can I ever relate, I feel this all the time.

    I am usually lonely and isolated from within.

    I can't not be bothered anymore to explain my condition to anyone, because no matter you do or say, none of them care to even care to listen. They just keep pushing me to do things, then get so angry when I can't.
    It is surely an invisible disease for sure, unfortunately no one can tell if we're sick or not, unless we are bedridden for awhile.

    LEFTYGG Member

    im laying here crying with pain . i hate to feel so weak

    my family is supportive too but they dont have a clue.

    its memorial day and my feet hurt so bad its not worth walking.

    i put on happy face too but not today im crying my eyes out.

    i wish i had a friend who really knew .

    love gail
  4. momof27

    momof27 New Member

    [This Message was Edited on 05/26/2008]
  5. tamsyn

    tamsyn Member

    Hi, so sorry to hear you had such a rotton Memorial day. At the end of last summer, I looked at the log I'd kept of crashes and I realized that I had crashed right aftr every single long weekend of spring, summer and fall. Wow; that told me a lot -- too much entertaining, cooking, going out, and extra expectations. So this year I'm going to slow down on holidays instead of speeding up. This May, for example, I managed to crash right before the long weekend instead of after it lol

    Anyway, I hope you're feeling better today and the pain levels are lower H
    hugs tamsyn
  6. TeaBisqit

    TeaBisqit Member

    Yeah, that's my life, too. No one understands and I don't look sick, so everyone just expects me to be able to do stuff, and I can't. I go out only when I have to. Once in awhile, I'll feel a bit better and then I'll go out and do stuff, but I always pay in spades for it.

    Being alone sux. But I'm not well enough for alot of social stuff, so I stay home.

    I deal with it by being online and doing computer hobby stuff. Things I can do from home. But it's the same story, no one understands that if I could be out having a life, I would be. Everyone thinks it's just oh so fun to be home watching tv and playing video games all day, and it's not. I'm well aware that my life is passing me by. But I can't do anything about it.

    You aren't alone. There's alot of us stuck like this.
  7. landra

    landra New Member

    and that really helped - and is helping now that I cannot work and are almost housebound. But I sort of had to ...

    I have CFS which apparently came on gradually with me getting "a cold" or "a virus" or "the flu" more and more often. So I had to take time off work. Supervisors began getting edgy - esp. since I was an office supervisor myself. So I Documented all the Dr. visits, all the medications, all the different consultations.I told my staff how I was feeling, took calls at home to keep things moving along, and got hooked up to do some data base work from home.

    I also missed family events, support group meetings etc. My family has a long history of allergies, so we are all more prone to illnesses. One sister-in-law had FM, which is much imroved, another SIL has asthma and is now on oxygen frequently. And being older, some friends have arthritis, etc.

    So when I crashed, I found a 2-page article. I sent that to all family members, and to support group members, and even to a few ex-coworkers.

    Neighbors know I get sick a lot, and now they know these are flares.

    When people ask how I am, I tend to use the Bell scale - I'm 30 on energy, but pain is high. Or I don't hurt too badly and energy is about 50 today!

    I would urge everyone to disclose a little about how you are doing. How will "normies" ever know how many there are of us if we hide it? ... Of course be careful at work to not give them enough to force you out [before you are ready at least.]
  8. tamsyn

    tamsyn Member

    Thanks to everyone who replied to my post. This board is always amazng!

    sutherngrl, I had Lyme testing a few years ago -- spent many hundreds of my own dollars on it. The tests came back negative as have other tests so I accept that the ME/CFS diagnosis fits me. I hope your Lyme treatment will bring your relief.

    landra, sounds like you found a good way to deal wiht this; I have started being more pro-active now about tellin people too. I find that they are usually supportive even if they don't quite understand. I guess I first had to accept myself before I could risk other people not accepting me as being sick. Thanks for your thoughts.
  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I agree that our challenges are unique and difficult for others to understand.

    But I think we need to recognize that every chronic illness has that to a certain extent.

    I can think of others that cause changes that people without the illness may not full understand: Multiple sclerosis, dwarfism, diabetes, just to name a few.

    We have one that makes us appear well and limits our activity, making us less social. But, by accepting this, we move on to coping and focusing on what we have instead of what we don't have.

    Would anyone want to exchange places with someone with multiple sclerosis, or diabetes, looking at the future as being blind?

    I will keep my problems, which I know and have learned to cope with, and every one else can keep theirs.

    I used to think that losing my energy would be the worst thing that could happen to me, I would have rather a limb be cut off than have to spend days in bed, lose the ability to hike and canoe. But I have let it go and found other pleasures.

  10. zenouchy

    zenouchy Member

    I agree with another poster that there are lots of other invisible illness out there, including mental illnesses (that's another one that no one can see), but that doesn't take away from the frustration of what we go through.

    It's the feeling of not being able to be honest with people because if we are, it will annoy them or put them off. So we have to put on this constant cheery act when we feel the exact opposite. I feel like I'm not being authentic. I guess there are many others who have other illnesses who have to do the same thing. It stinks doesn't it? You could write a book called "The Invisible Life". Shed some light on ME.

    All well to you,

  11. Debra49659

    Debra49659 New Member

    oh...absolutly, can i ever understand. the only friends i have left are here and my family.

    but, when asked how i feel i don't hesistate to tell. i do save my self the headache of discriptions though and leave it at;

    oh, its a bad day...
    tired today...
    not so bad...
    on the edge...

    whatever the case maybe, then everyone has a idea, but i haven't left them wanting to bash their heads in a wall for asking:)

    hang in there, and remember we are always ready to hear the truth because we understand and can certainly relate. this board is my lifeline and i wouldn't know what to do without it.