How do you deal with the ignorance and accusations of others?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by isiselixir, Apr 24, 2013.

  1. isiselixir

    isiselixir New Member

    This morning I was sleeping in late as usual and I overheard my Grandfather answer my Grandmother's nurse's question. She said "How is your Granddaughter doing?" Basically my Grandfather opened up to her and said that he doesn't believe my illness is real, he thinks it is a way for me to get out of working, and that I am lazy.
    It shocked me how ignorant the person I live with is. Not only that but he thinks I am a liar. He thinks I am "faking." I cannot fathom how a once healthy woman would just suddenly want to stop dancing, doing martial arts, working a fulfilling job, etc. all of the sudden to mooch off the system. I always enjoyed working and now I live mainly like a shut-in. IF I were well would I really be living like this? Would I really sleep 13 hours, take a stimulant just to stay awake, and sit behind a computer most of my days? It is so hard for me to understand this man's logic.
    I don't know if I should discuss this with him or not. I have considered writing him a letter. I really don't want the person I am living with to think I am a lazy liar. I am going to discuss this with some other family members. I know there are people who think this of our invisible illnesses and they do not understand, but when it is someone so close to home it is really disturbing.
    My good friend who was hubcap_halo on here, Patrick, committed suicide last year due to his illness. These illnesses are hard enough due to the physical challenges. It is very sad that we get so little support from those who are not ill.
  2. ameilie73

    ameilie73 Member

    I have the same from my family. I left information around their house, like the toilet or the living room table, as if it was for me and id been reading it. Things like the latest research, what it is, things that say that the healthcare system recognises it. He may read it he may not.

    My father was never interested, my brother didnt believe in it, my mother had been to appiintments with me, my sister didnt take any notice, i think they were all more put out that i couldnt do the things i did for them before i got sick. Its not nice to find out you are only accepted when your useful.

    I live on my own now, i stay in touch with people who have the same condition as me, thats so important as not to feel issolated. My struggle is never seen by others, to them i look normal. None of my family could tell you anything about my illness and ive had it years, and yet i know about theres, even if its a cough a cold, a sore elbow. Any way thats what i did, it may or may not work but worth a try.


    I hope whatever you decide to do works out for you.
    Stay in touch,

    Ameile x



  3. isiselixir

    isiselixir New Member

    Thanks for sharing your experience. Sounds like your family really doesn't get it! I am really sorry to hear that. How were you able to move out? I can't afford it at the moment.
    There is not really much literature on what I have. I have idiopathic chronic fatigue and aerobic exercise intolerance. I don't have CFIDS.
  4. Saoirse3

    Saoirse3 Member

    Okay, let me clarify that. There will ALWAYS be ignorant and accusing people as long as you are ill. But it's up to YOU how to deal with it. I know it's very difficult when it's family, and heaven knows my own family (minus my husband and oldest daughter) only care because I'll take my credit card with me when I go to the other side. All the crying, begging and trying to educate will not work on a closed mind. And it only upsets you and stresses you out. The more you stress, the more it hurts - nothing was ever gained or solved by stressing yourself out over it. Guilt is a wasted emotion, as is anger and resentment. Instead, free yourself and your mind. Be good to yourself! You didn't ASK to be sick, it just happened! The fact that you are writing means that you still have your mind, and as long as you have that, just think of the endless possibilities. Don't cry because you "lost an ability". Be happy because you DID it! (Trust me on that one, I was a pilot!) Sending out warmest wishes and

    Soft hugs,
    Stacey
  5. ameilie73

    ameilie73 Member

    Yes, i did look up what you have,and you are right it is difficult to get info, but there is some so try and use it. A number o f forums with people who have what you have too. Even if you have to copy and paste info on to paper. Sadly it does say the lack of information and help for you is one of the main difficulties. I have fibro but that does have fatigue as one of the main symptoms. I can relate for me it can be overwhelming to.

    What tests did they give you isis? What triggered yours. As you like me describe a pre-illness experience. Have you had your thyroid tested? Its hard because your doctor wouldnt diagnose you with something you do not have, yet your grandfather doesnt believe it, but its very much the same for fibro/cfs/ ME, in their generation bracket they can be that way.


    Have you ever asked for a second opinion, even when i was diagnosed since its a diagnosis that has no cure, i did seek to find out if it could be something else bacause i didnt want to be lumbered with something i couldnt cure. I still have problems accepting it today because of having a comparitable pre-fibro life. So it is hard when others dont believe you. I moved out many years ago of my family home. But the goverment did help me as living with my parents wasnt helping me. I live in england so i dont know if our system for that type of thingvis different. Im hoping others will read your post and help contribute as they may know more on that side of things, it isnt easy living on your own and being sick, but it can be done. Try and do what you can first though.



    Yes, so try and get together as much info as you can. Dont press it on him just leave a few bits around. My family especially father and brother had a tendency to want to read when on the loo, (although i do to lol) so thats why i left some info there.

    But if he doesnt accept it still have to become your own best advocate despite it.


    Let us know how you get on.

    Ameile
    x





    [This Message was Edited on 04/25/2013]
  6. kchase77

    kchase77 Member

    When I was diagnosed with a mental illness, I found a great book for my family to read and try to understand and help me deal with it. Gave a copy to all of them....not a single one read it. One day in the car I was trying to tell my mother about it and she just turned around and told me to shut up. What a mom, huh??!!

    So I have mental and physical issues to deal with and no family support at all. I have discovered than no one really cares if they have to do the caring in person. It's one thing to support someone online and we can all do that, but anytime I have ever actually asked for that care in person....forget it. I was even looking for a live-in caretaker to help me and give them a free place to live in exchange...no luck there yet either.

    I am to the point where I just don't care what they think anymore. It's their problem, not mine.

    Take care,
    Jody