1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

New article "The Incredible Power of Ignore"

Discussion in 'Lifestyle Management' started by Jody, Oct 24, 2009.

  1. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
  2. Snez

    Snez Senior Member

    Messages:
    160
    Likes:
    6
    Tasmania, Australia
    Jody, so eloquently put.
    Your article stirred up many intense emotions, almost close to tears in fact. You see I have a friend who has CFS and is in the same predicament that you mentioned. Her family is in denial- there is no real help.

    She cried out for help and I feel so helpless! How can the drowning help those who are drowning?

    She needs practical help- her kitchen floor hasn't been washed for months, her freezer hasn't been defrosted for years, her sheets haven't been changed for weeks. What can I do?

    Most people think she exaggerates, is paranoid and "talks too much" to be really sick. They talk about assessing her for care and putting her in a home. They know nothing- it would kill her.

    When I talked to a friend about this I said "This could be me- it scares me that the chronically sick can be abandoned like this."

    I am so disappointed and heart-sick... but....

    Write on Jody!

    Snez
     
  3. caledonia

    caledonia

    Messages:
    3,036
    Likes:
    1,708
    Cincinnati, OH, USA
    Great article - I got little tears too. Reminds me of a situation where a friend of mine got an award for starting and running a music competition. Well, the real story is, I started the competition and ran it for the first two years myself, (then got sick), then handed off to this guy and had to babysit him through running the competition for the next two or three years until he got the hang of it and could run it himself.

    I was feeling pretty low, thinking everyone (including my BF!) had totally forgotten all about my many contributions, when another friend of mine came up and said "I remember who really got the whole thing started". It saved the day for me, to know that there are still people who remember and appreciate what I did (even though some others seem to want to rewrite history).
     
  4. Nina

    Nina Senior Member

    Messages:
    220
    Likes:
    14
    Jody,

    thank you so much for putting into powerful words what many of us are going through, yet cannot express in the same way.

    It says a lot that we need articles written by other people to try and explain those closest to us how we feel. Or that in fact, how we feel is not abnormal.

    The pictures of the burning house and the drowning describe exactly how I feel like most of the time.

    There are moments when healthy friends experience just a glimpse of the isolation we know all too well: My sister had to stay on her couch for the last 2 months of her pregnancy and she fell into a mild depression for not being able to go out for "such a long time". There was one day when it hit her that this was what I had been going through for so long, with no end in sight and she got all sympathetic and scared. The moment passed, and she now hardly ever calls to ask how I am.



    Snez, I am so sorry to hear about your friend. I can really relate to how you feel about not being able to help while knowing exactly how much she needs it!

    It is my worst fear that one day there will be no one left who is able or willing to take care of me. I couldn't even buy me food then, let alone have any money. It is so depressing, but all the more reason we have to fight this with what (little) we can do and make sure there is a better future ahead for people with chronic illness. I know we can.
     
  5. Lisa

    Lisa Senior Member

    Messages:
    446
    Likes:
    15
    Western Washington
    Nina,

    Sounds like that two month walk in your shoes really freaked your sister out. I'm guessing it was a bit too much of your reality for her which is why she doesn't call anymore. If she ignores you then she can ignore that reality because the ideal of it coming to life once again is too much for her.

    I think this is why so many people ignore us (course there are plenty of other reasons too). But the very thought that this can happen, that life can go so very wrong with no support system out there to say its ok and acceptable, it just freaks them out. And so they go about life ignoring us because through that, they can pretend there are no monsters lurking in the dark.

    Lisa
     
  6. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,128
    Likes:
    3,398
    N. California
    Thanks Jody, for writing this article. Nice job.

    I know this invalidation reality so very well. When I first got sick, my mother and sister treated me like an embarrassing inconvenience. I could barely stand up and walk to the bathroom, so my mother threw a hissy fit about how bored she was because I wouldn't go shopping with her for "a new outfit." And my sister used to yell at me, "I just want a NORMAL sister!" :eek::eek::eek: It's almost comical to me now, in that bizarre dark humor I-can't-believe-I survived-that-insane-family nightmare kind of way.

    At this point I have a zero tolerance policies for invalidator alligators. :p;):) If you don't believe me and can't respect me, then there's the door, and don't let it hit you in the butt!

    I am so glad I got in touch with my anger, :) or I would still be begging mean people for the help that they were never willing to give.
     
  7. Nina

    Nina Senior Member

    Messages:
    220
    Likes:
    14
    Lisa,

    I guess you are right. See: We even try to understand why people don't try to understand us ;-)

    Still I can't accept it. If I were the healthy one I KNOW I could never be that way.

    Dreambirdie: I now use the "zero tolerance policy" too. You really made me laugh, although the subject is definitely not a funny one. We may be sick, we may be depending on others, but we are still strong.
     
  8. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    My heart goes out to your friend and to you, Snez.

    I know that feeling, that this could happen to me. For a period of time -- a little while ago now -- I was consumed by that feeling. That I could go all the way down and just disappear, and nobody with the means to prevent it would bother to do so.

    If I had no people out there, what was to keep me from ruin and bankruptcy and homelessness and starvation?

    I'll keep writing, Snez. I do it for me -- I need the therapy :D -- and I do it for you and the rest of us in this mess, and I do it for the ones out there who want to know about us and who will act on it if they know.

    Thanks for saying everything you said.
     
  9. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    Caledonia,

    I can only imagine how very frustrating and infuriating this must have been for you. I'm glad you had a friend who remembered, who knew AND who was smart enough to tell you they remembered. :D

    I have had to step out of many things from being sick. Some of them just went poof! and others were taken over by someone else and are still going. And it is very hard to be side-lined and not be the one to do these things anymore. I understand how this can make you feel.
     
  10. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    Nina,

    LOL

    Yes it does say something about how flattened we are by this illness, when we need someone else to speak for us. I remember a time when I was incapable of telling someone how I felt, what it was like. I was physically, neurologically, unable.

    And it is a sad commentary that the gap between us and others can be so big that it takes an "interpreter", or an outside party (like me or another writer) in order for people to listen and consider that things really are this bad. too bad they can't just believe you. Really listen to what you are saying, absorb it and act on it. But so many don't so I'm happy to try to be an interpreter or a facilitator or a negotiator or ... whatever the hell it takes, eh?:rolleyes:

    Whatever any of us is feeling is not abnormal. It may be uncomfortable, and certainly not politically correct :D but it is normal. And I think that is part of why I write too. Because it helps to hear that someone else feels that way. That someone has had that symptom and that reaction. And that they are angry. And not feeling too grateful for crumbs. And that we are aware that we are not treated with civility, decency or compassion so much of the time. And that it grates us intolerably.

    Oops, started writing another article. :D

    The burning house and drowning have been my mental pictures of how I feel for many years now. See? Nothing abnormal here. Perfectly normal reactions to heinous long-drawn situations.

    Terrible, the situation with your sister. I have seen some of this myself with family members and one friend who just ... disappeared. It's the opposite of what you'd expect, I know.

    When we are all better (I need to look at it like that, I DO look at it like that. I do expect to get all better) I hope that all of us will remember what kind of hell we've been through and that there are thousands -- millions? -- still going through it. And that we won't do what would be natural I guess, taking off as far from cfs as possible. That we will stay for our brothers and sisters and do what we can to bring them something better.
     
  11. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    dreambirdie,

    It's amazing the types of reactions you can get hit with isn't it.:eek: One would hope that this wouldn't happen with family, but so often it does.

    I agree, sometimes you just have to cut your losses. Be realistic about what someone is like -- not just what we wish they were like -- and make decisions accordingly. Step away from the things -- and people -- that drain us.
     
  12. mezombie

    mezombie Senior Member

    Messages:
    324
    Likes:
    20
    East Coast city, USA
    This hit too close for comfort.
     
  13. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,128
    Likes:
    3,398
    N. California
    Yeah Jody, I think you know exactly what I'm talking about.

    During the first years of my illness, my ideals about family seriously interfered with the reality of who they really were, which seriously interfered with my peace and sanity. I kept grinding away about it, wishing and hoping that THEY would just BE DIFFERENT. I would have done better screaming at the wind to stop blowing.

    It took me seven long years before I finally accepted the reality that family are just the people you happen to be genetically related to.
    It's amazing how liberating it can be when you admit the truth to yourself and just let go. ;););)
     
  14. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Hi Jody
    You're such a good voice for us! thanks yet again.

    It seems to me that sometimes I'm just not capable of explaining, of marshalling my thought, of opening my mouth, let alone higher order things like thinking about who I'm talking to and how they see the world and how xxx would be best put so that they'd get it..... It sometimes takes me years to develop a strategy on some element of communiation.

    But, I also think part of the huge impact your writing h as for us is that when those around us read it, it's 3rd person. It's sort of like a couple needing a marriage counsellor - the 3rd party can remove us from our buttons, preconceived ideas ......... and provide objectivity. And somehow we tend to respect the 3rd person more than we do those close to us. I think it's the lack of clseness that permits this.

    you definitely have - looking forward to it!


    hi dreambirdie - you have become so strong and clear

    I hope I can express my ideas clearly here. I think maybe you were lucky in some ways that your family was so honest - at least then, as awful as it was, you knew what you were dealing with and could move foreward to changing things. It reminds me of when I went out for dinner with a friend who was gay right after the HIV / AIDS info started coming out. It was a chinese buffet. My friend'ss sister yelled - don't touch the food - now none of the rest of us can have any". A misinformed nightmare, but because of the frankness could be dealt with and (over time) they are very close. Maybe the honesty is a level of expressing love, closeness even if it's in a selfish, negative way. They miss being able to be with the person they love in the way things used to be and are afraid of facing how things are now for you. I've found that with the people who are honest, we either come to a better place or we cut ties if I don't have the energy or think it's not worth the energy (or they just leave). It's the ones who aren't honest, that aren't showing their fear, aversion etc, that it is/was much more difficult for me to achieve a healthy relationship with.

    yikes - I could (as in possiblility, not ability) write for miles here - I've missed so many of the ideas I'd like to explore

    one last one is about the fear this disease brings. The possibility of being left alone with nothing and not being able to survive is so real it's palpable, I can almost touch it. I'm so lucky that I have some amazing family and friends and am able to survive financially. When people do talk about ME/CFS, I've said "If I weren't able to survive financially, I'd be living on a couch in my mother's small condo or dead". They squirm and don't want to take it in.

    :):(:confused:
     
  15. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    dreambirdie,

    Yeah I know what you're talking about. It's a tough thing to do but worth it.

    You know, I still couldn't do the letting go properly (and still have to do it over again when I forget and go back to old patterns of thinking) until I knew some other people, through being online.

    Then it was, in a way, simply turning my own back on the people's whose backs were all I saw ... and faced a new direction where I wasn't alone. where I felt valued and cared about.

    So very hard for those who don't have anyone else to turn that attention to.
     
  16. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    Marie,

    I know what you mean.
     
  17. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    islandfinn,

    If something I write helps somebody see you with more credibility I am all for it. There is something about the written word at times -- someone who knows you who finds the limits of their minds stretched because of your illness, may find some confirmation to what you say, in reading an article.

    Let's hope.

    The fear of this disease, the bigness of this disease -- ironically may be part of what makes people act like it is trivial. Because it IS so big, it is a colossus. beyond what they can take in.

    We will just have to do what we can to help them take it in. :)
     
  18. dannybex

    dannybex Senior Member

    Messages:
    2,279
    Likes:
    579
    Seattle
    This sentence is GENIUS!

    Another great piece Jody!

    Just love this sentence:

    "Ever notice that the term "invalid" is the opposite of "valid"?"

    Very powerful.

    I would love to post a link to it on my puny blog, but am afraid some who read it might try to think I'm trying to make them feel guilty. But if the shoe fits...?

    Thank you.

    d.
     
  19. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    Danny,

    I'm thinking if you would like to post a link to it on your blog (and I refuse to call it puny, I don't care what size it is, it is your blog and that makes it significant, yes?:)) I think you should feel free to go ahead and do it.

    It's your blog, and your thoughts ... I think it would be okay. Unless your concern about some possible reactions is making you uncomfortable about the idea. You don't need to go through that kind of anxiety, so if posting this would stimulate that kind of uneasiness for you, then I can see not posting it.

    Whatever is going to make you feel best, that is what I think you should do.
     

See more popular forum discussions.

Share This Page