There Really Is A Book Here

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Mar 24, 2007.

  1. joeb7th

    joeb7th New Member



    Just reading these responding postings, there really is a great book here.


    The lady who has had fibro ( or whatever immune system destroying or compromising disease this is ) for 14 years and who at the same time has had to deal with and defend her own sense of sanity much of that time is a story that is just so incredibly powerful, dramatic and emotionally sad. And it's all true!


    To think that someone could suffer that much for 14 years and at the same time have to defend their sanity constantly to the medical community as well as family and friends is truly a horror story. Where is Louis Fletcher?

    And then to be vindicated after all that but still be left with an unyielding pain filled life for the rest of her days.

    Whew, like I said, there is a book here.



    Many of my postings have also tried to expose what I found to be this same shocking and scary fact of down-playing and psych-pushing in my search for diagnosis, treatment and care in my middle sized and medically limited community.

    I have repeated my story and this message enough times now that a few responders here are so tired and irritated with it that they have actually asked me to accept the fact that maybe ( to some degree ) I "am" mentally "not right." And that maybe accepting chemical treatment for this wouldn't be a bad idea.

    Obviously, this works up my sense of sanity survival and right and wrong and trust in my own common sense and of who I am and have been after 50+ years of living in this ole body of mine.

    Sorry, but I'm going to continue to speak up about what I see as a widespread American medical community injustice here; The spirit crushing down-playing and disacknowledgemnent and the humiliating psych-pushing. And if I don't it sure doesn't look like too many others will...and it will just continue on.

    And sorry again, but I am personally not bi-polar and I am not taking anything other than anti-anxiety meds thank you. And I wouldn't take these except that I find no other way to relax my unbelievably tense body when my daily attacks occur and do this to me.

    My point over and over in my postings has been to highlight not only my nightmare experience with a disease so much more painful and exhausting and scary than I ever dreamed ( beyond anything I ever imagined before I ever got this ) but more importantly to expose the over-all bad and unethical treatment and care I have received from the medical community I live in when I have gone to them to help me diagnose and deal with this disease. And the treatment like this of too many others with these same physical conditions.



    As I've mentioned so often and I feel I should, that the worst part of this treatment and care is when the doctors start down-playing what you have and are complaining about, quit looking for physical reasons to explain and treat you, and your own mental health and sanity are suggested more and more as a much bigger factor in your complaints and ailments than "they think" you want to believe.

    When you are being down-played and pressured to question your own sanity while at the same time desperately suffering, trying to cope and looking for help with these painful, emotion draining and effecting and life changing diseases, this turns a sad experience into a nightmarish one.



    This psyche-dumping of immune system diseased patients is so flat out unethically wrong and so common, it is a shocking, tragic and bad sci-fi horror movie injustice in my view.

    It goes so against the ethical codes and oaths doctors are asked to honor when they receive their licenses and degrees, it's an almost criminal cop out. A cheap, irresponsible one that just adds even more incredible stress and suffering on to patients already suffering greatly from these diseases.

    And an injustice that is begging to be exposed!

    What person, who suffers often the kinds of complete body pains and other torturous ( yes, at times truly torturous and scary and exhausting ) symptoms that we do...would not eventually break down emotionally from all of this?

    What person in this situation wouldn't feel anxiety and depression on a major scale after going through this for years and also feeling as if real cures might not be there for them?

    And what person after being treated like a mental case by doctors who have a rushed factory assembly line business practice and just want cases like ours to go away and who are about as compassionate as a car mechanic, wouldn't finally show some anger from all of this?

    More and more my postings and all of yours are clarifying a scary scenario that is real and has taken place far too long and often in this supposedly ethical and greatly advanced medically educated country of ours.


    And that is the widepread mistreatment of people who come down with these torturous immune system damaging diseases.

    And I will fight to speak out against this and to defend my sanity in any way I can whether it be by posting here or writing letters there or calling in to radio talk shows here and there.

    To tell people in our society as much as I can, that these diseases are that bad, they appear to be increasing, and that those people who acquire these are too often wrongly down-played or dismissed or being told they suffering more from psychological problems than physical ones.

    But you can take your bi-polar and any other psycho-babble excuse diagnosis's and shove them.

    It's time to quit purposely pushing Fibro, CFS and other similarly diseased people into the psyche-gulag which is essentially a version of the cold war Soviet Union Gulag. Complain too much and too strongly and you are gone.

    If we can't find out what is wrong with these people, and they complain too much and they act too anxious and emotional and depressed and demanding ...lets just get them over to the psych people. Maybe they can make them see they they are mentally more out of it than they want to believe, and we can drug them into a more tolerable less complaining state.

    So often this what it boils down to. And if you don't see the tragic truth of this happening, you just don't want to face reality.

    I understand helping victims of these diseases with pain meds and even anti-anxiety meds, but when these doctors shove your treatment almost completely into the psyche area like this and " do it out of their own personal frustration and irritation" and in a condescending even insulting manner to boot ( look, you're crazier than you know!" ) it's time to get outraged and courageous, it's time to get mad and speak out.

    And it's definitely time to take a whole new look at victims of these diseases and how we as a country view and treat them.

    What we need actually are seperate clinics and treatment centers where people like us can not only get the specific care we need without having to go through 20 doctors and years of exhausting seperate piece meal tests...and most importantly, that we can be treated by staff members who have been educated in our diseases and who not only believe us whole heartedly about our complaints but that also "want" to work in these environments because they truly care about patients like us and truly feel and share compassion with us.

    Someday, someone is going to write the right book about this whole sad and even scary experience of being a victim of these diseases and the too often horrible treatment one can experience in seeking caring help for these from our American Medical community.
  2. dononagin

    dononagin New Member

    there is a book here..

    it's a sad book, but full of courage..

    hugs..
  3. Cinlou

    Cinlou New Member

    I hear you Joeb7th. We sure need the separate treatment centers. We suffer and they say we are crazy......these chronic DD's can make us suffer over our suffering....Does that make any sence? It makes me want to cry:[
    Cindy

  4. GigglePoet

    GigglePoet New Member

    Joeb,
    Heres your first order and I am encouraging you to write that book! You are so blessed for your mind to work so well and to be able to put it down. You go girl!
    I myself have MCS-EI I am not sure when my body started reacting to things exactly, but I do know that I have also suffered major depression for a long time, way before my life totally gave way. I went 10 years without getting any help for it and tring to do diet etc and other controlls. Finally I sought help and must say that the anti depressants are the one thing that has really proved to help all of these years, but agreed...to be sick all the time, isolated, misunderstood, unexcepted etc can easily make someone depressed!

    Hugszzzz and get that book goin!
    ~ Dee
  5. 545

    545 New Member

    When I think about how surreal everything I've gone through is, and then I think about this forum, sometimes I'll just start to cry.

    Looking over the posts I often think to myself that only the most imaginative exestentialist author could even begin to fathom such a predicament - a cluster of physical symptoms, almost (?) impossible to recognize through most medical tests, often confused for something psychological, then sometimes even becoming something psychological - it really blows my mind. It's all so twisted - and the part of it that you really have to wrap your mind around is that, no matter how frustrated we might be with medicine / certain institutions, how CFS / FM has been treated does, *to a very limited degree*, make sense - that is, the same medical / decision-making paradigm that's harmed & frustrated us is not just inconvinient or arbitrary - it's the very paradigm that tends to best treat most people in the past; it's just that somehow we're stuck.

    I remember, as a teenager, when I first got the internet, not really being sure what "forums" were good for; I couldn't have imagined one as absolutely essential as this one. I don't have much experience in other forums, but I've never seen one so busy as this one, and where everything said seemed so perfectly relevant.

    And I'm absoltuely astounded by how emotionally warm & accepting people are - you can spend hours trying to explain this sort of stuff of friends, on top of tons and tons of $$ seeing doctors, and you'll never get half as much warm understanding or sheer helpful tips as you'll get here; I really have to hand it to all of the members who have kept this up so well so warm for so long.

    The world is filled with amazing things beyond our scope - things to understand & wrap your head around, and things to marvel & contemplate and enjoy being baffled over - but somehow we're all stuck absolutely forced to grapple with something that's above & beyond us (Camus' The Plague anybody?) - and all of this has been spilled out in so many different ways on these pages: panic & frenzy, warmth & acceptance, let-downs & lows, advice & intellectual debate. Worthy of a book? Certainly; and it has the ripe potential to teach people more than just about medicine and the government..
    [This Message was Edited on 03/24/2007]
    [This Message was Edited on 03/24/2007]
    [This Message was Edited on 03/24/2007]
  6. coolma

    coolma New Member

    Where I live, (Toronto, Ontario) they were in the process of working with doctors, specialists and others to try and open a "one stop care" place for fibro. It was the greatest idea but did not come to fruition. Banding together with enough people in these conditions (which are very real) isthe best way to organize and get the help and support systems in place that we need. Unfortunately, the person spearheading this new type of care system had to move away and it never took place - but almost, for a brief moment, I saw a light shine for all of us. And if it shone,once, it can shine again. Negatives don't work however. Positives rally people together. This type of care centre (phycial, mental and spiritual) all in one place would be a Godsend. Eventually, someone somewhere will try it again and succeed!
  7. Fmandy

    Fmandy New Member

    Joe, as I was reading your post, the thought or memory went through my mind of when I have sit on the exam table waiting for the doctor and reminding myself to not forget to tell the doc the most important (worst) symptoms I have been having.

    When he/she comes in, and at the appropriate time, I start with my symptoms. As I am talking, I realize that what I am saying is so hard for anyone to believe. My mind just drifts off into bewilderment and I struggle not to show it. It is an unreal feeling that you cannot communicate with your doctor when you are aware that what you are saying doesn't sound possible.

    It's like I should have crawled in, all bloody and at death's door to be describing my worst symptoms. Instead, I am sitting there clean and shaven with my best clothes on, and trying to be a pleasant as I can be. No one likes a grumpy complainer. I feel your pain man.

    Andy
  8. obrnlc

    obrnlc New Member

    hi all--
    i have to agree with Andy, when people read it they would think it was a fictitious(SP?) Steven king novel!! Thats why no one can believe us, we look so normal one minute, and the next are hanging on to a shopping cart for dear life.

    no one can or does believe the complex multitude of symptoms that we have! I can't believe it myself half the time when i try to write it down or explain it, this is such a good post!
    have a great day--L