Discussion in 'Fibromyalgia Main Forum' started by healthywannabe, Apr 23, 2003.

  1. healthywannabe

    healthywannabe New Member

    Hello. It makes me so mad when peple tell us that were faking or that study were they said that 35% of us are. and when people we talk to they act like were faking!!! What would we have to gain!! I meen who would fake a disease that no one belivies in??? it's ridiculuse! any way,,,, thats just my thought on everyone telling us were faking it!!!!! peace...ZOe
  2. bejo

    bejo New Member

    I know what you mean.((())) bejo
  3. evileva

    evileva New Member

    I had a 34,000 dollar a year job that I loved. Why would I want to go from that to penniless and like you said, pick a DD that no one believes in. My disablility, if I get it will be 548.00 a month! I'll sure be able to live high on the hog with that won't I? I would love to be able to go back to work.
  4. Hocking

    Hocking New Member

    If the American Academy of Family Physicians, the Centers for Disease Control, the American Board of Neurology, and a host of other AMA accredited institutions have diagnostic guidelines for fibromyalgia, why do you seem to think
  5. Hocking

    Hocking New Member

  6. Hocking

    Hocking New Member

    Anyway, I'm getting really fed up reading
  7. Hocking

    Hocking New Member

    what are we, a bunch of Tinkerbelles? Insurance companies pay for treatment and meds. Who cares what anyone else thinks? Enough!
  8. ForeverFlaring

    ForeverFlaring New Member

    Please understand that many people here have fragile self esteems because of what this DD has done to our lives. Many have lost our jobs, our marraiges, our homes...if someone were to say to my face right now that I am faking it, I would probably scream. Yes...insurance pays a portion for our care but that doesnt mean that I am willing to sweep the whole stigma of fibro/cfs under the rug. I want the world to know what we are going through. I want them to know what fibro is! I would give anything to be able to share my secret without fear of being judged.

    For you, it may be easy to not care if people believe you or not. For others it means everything in the world.

    Just some food for thought. I am not trying to argue, just shedding some light on how some people may feel.

    Sandy (FF)
    (I'm a tinkerbelle and I'm proud!) :)
  9. stickley4u

    stickley4u New Member

    Oh yeah faking and the other "all in your head". There was this one lady that said I was faking and it was all in my head and I just recently found out that she has fibro. The proverbially 'what goes around comes around?'
    [This Message was Edited on 04/23/2003]
  10. ozgran

    ozgran New Member

    getting "het up" over faking it. I know I'm not and thats all that matters to me. If anyone else thinks that of me then that is their problem. I had to give up a job I loved and hadn't intended to retire until the end of this year, but resigned 2 years ago. I gave up good money too when I left work, but my health is more important to me. Didn't know what was wrong with me then, but everybody knew I wasn't well. And tho' I look well as most of us seem to, most people are now showing genuine interest in my wellbeing and also have concern for me. Just take care of yourself and let the doubters go. Love Ozgran
    [This Message was Edited on 04/24/2003]
  11. kerrymygirl

    kerrymygirl New Member

    The bad part of this type of publicity hurts our care and docs perspective on helping us. Also delays research for our future and hope to be sooner than later. On t.v. not that long ago abc special or something.Of course I can`t remember when or where?? I do remember it was on fm and neurologist room full of docs were asked if they believe in fm/cfids only 2 docs out of all these docs wearily raised their hands. These things hurt us. Just as cdc giving our funds to others. Also Arthritis foundation has most of their calls about fm, yet get the least amount of funding, 1 yr. no more than $1500 went for fm. So I do care because end result is delay in our treatment or poss. cure. I truly believe this is a neurological encocrine disorder and there are few docs yet that will help us in this field.

    Are you ok Hocking?????
  12. baby-bear

    baby-bear New Member

    Have you stopped and considered that ZOE might have been really ambushed by SOME ungreatful, slimmy you know what and it really made her fed up and hurt that they did not even have the decency and care to consider her feelings of what she battles from day to day????????????? What's wrong with you????????????????????????????????? THAT WAS JUST A PLAIN RUDEUNSKY POST YOU POSTED!!!!!!!!!!!!!!!!!
    [This Message was Edited on 04/24/2003]
    [This Message was Edited on 04/24/2003]
  13. sijka

    sijka New Member

    I found this and sometimes give it to people who REALLY just don't understand--like some of my family!!
    It would be easier if we wore an ace bandage somewhere on our body or cast--then we would have a "visible" disability!!
    I have another letter to those who don't understand but can't find it!

    I am an invisible disability

    The problem is that I don't believe a distinction between visible and invisible disability is useful, or even meaningful.
    It takes practice, I guess, for other people to understand the ways disability affects my life. Some experience with me, or at least with people who are like me in some way, will give you a much better handle on what I'm going to have trouble with, and why.
    In other words, as you come to know me, you'll get better at spotting the barriers I face when I want to participate in the life of my community, my society, my world. You'll learn to spot the strobing fluorescents, to catch the verbal constructions that trip me up, to notice when I cannot recognise the people and objects in front of me and the speech and other sounds around me.
    Spend enough time with me and you'll understand not only that I need to have expectations and anticipated events laid out for me, but why. You may be surprised at first that I can manage in one situation and not another, but eventually you'll probably learn to tell the difference.
    As I watch wheelchair users' different problems with the same curb cut, I am reminded that it takes practice to really understand how disability affects any individual's life. Every so often I am surprised when someone is stopped short by a curb cut I thought she could navigate. But my failure to see the barrier doesn't make it invisible.
    In the disability community, we speak as if some kinds of disability were visible, and others weren't. Let me suggest a different approach: think about the ways different kinds of disability have become more familiar, and more visible, to you as you've gotten to know more disabled people.
    When non-disabled people look at "the disabled," they see wheelchairs and picture-boards. They see helmets and hearing aids and white canes. With a few exceptions, they don't pick up on how individuals differ from one another; they notice the tools we use. And these tools, to the general public, equal "disability." Venture out without a well-known tool, and your disability is "invisible" or "hidden."
    But the tools are only the first step to visibility. The second step is the behavior that is expected, given a particular set of tools. The person who uses a white cane when getting on the bus, but then pulls out a book to read while riding; the person who uses a wheelchair to get into the library stacks but then stands up to reach a book on a high shelf; the person who uses a picture-board to discuss philosophy; the person who challenges the particular expectations of disability that other people have is suspect. "I can't see what's wrong with him," people say, meaning, "He's not acting the way I think he should." "She's invisibly disabled," they say, meaning, "I can't see what barriers she faces."
    Why, you might ask, do I even bring this up within the disability community? Although we may understand disability differently than others do, we have not, as a group, abandoned the suspicion of people who may not be "really" disabled, who may be "slacking" or "faking" or encroaching on "our" movement and our ideas of what disabled people are "really like" just as non-disabled people do: with suspicion.
    We also have developed a fixed idea of what "accessible" means, and when "invisibly disabled" people complain of barriers we can't pick out, it's too easy to dismiss them as unimportant distractions from the "real" issues -- the issues that "visibly disabled" people are concerned with. After all, the "visible" barriers cannot be ignored.
    But a meeting in a room with a ramped entrance isn't accessible to everyone if the meeting is held in a language not everyone understands. It isn't accessible to everyone if the rules are complicated enough that not everyone who wants to participate can figure out how to do so. It isn't accessible to everyone if the information that will be discussed wasn't available in forms that everyone could understand.
    Because "the invisibly disabled," like all who defy expectation, are suspect, people ask us why we need accommodation rather than what accommodation we need. "What seems to be the problem?" they ask, when we point out barriers. "Everyone else can do it," they assure us. "It's already accessible." And while, for example, wheelchair users no longer accept being carried up a flight of stairs "as a favor," we are too often expected to smile gratefully and accept favors instead of rights.
    It goes beyond that, though. Even other disabled people who rankle at the question, "What's wrong with you?" will turn and ask me the same question -- and expect a detailed and deferential answer. Even other disabled people, when faced with an accommodation request they regard as strange (for a disability they regard as invisible), defend barriers. "You have to understand," they say as we struggle for access. "You have to be patient."
    And to that I respond, "Why should some disabled people get to demand justice now, while others are expected to be patient and understanding in the face of injustice?" Why should some people's reasonable accommodation requests be treated as assertions about disabling barriers and others' merely as statements of personal preference?
    Every person is unique -- though the defenders of the non-disabled status quo would like to believe we are all the same. Even within the disability community, we vary: we have different things we cannot do, or do as long as or as well as or in the same way as non-disabled people. And this means our experience of disability varies: different aspects of the way society has arranged things are barriers to different people.
    We will always need to learn from one another about the barriers each of us faces, and barrier removal will need to be an ongoing process, not an accomplishment we can safely put behind us. Dismissing that which is unfamiliar to us as "invisible" (and suggesting that it cannot be discerned rather than that we have not learned to discern it) is another way of throwing the responsibility for social justice back on the individual who carries the burden of injustice.
    I am invisibly disabled -- or so I'm told. That means my access is my problem. I disagree.
    The disability rights movement is based on the conviction that varying from one another doesn't mean we have to face ableism, to deal with environments and interactions that are designed for some -- and not all -- of humanity, to experience the injustice of being left out because there
    is something we cannot do.
    So let me challenge all of us: among ourselves, let's give up belief in "invisible disability. “Let's work as a cross-disability community in a way that acknowledges all disabled people -- all people -- as individuals. Let's agree that no-one should face ableism either inside or outside the disability community, and let's act on that agreement.

    Cal Montgomery lives in Chicago. An earlier version of this article appeared in the newsletter of Progress Center for Independent Living in suburban Cook County, Illinois

    Copyright 2001 by The Advocado Press
  14. lagm31

    lagm31 New Member

    I am not FAKING MY CONDITION and so does my FAMILY....
    You know I would not wish this DD on my worst ENEMY..For what we have to endure on a daily bases a NORMAL PERSON Probably would not be able to last. I had to give up a 48,000 a year job that I really enjoyed and that I was good at. Now I am Getting NOTHING...Why would I fake this...Insurance Companies only pay so much. But then some insurance companies won't even touch you cause you have an existing condition. So why would a person Fake this DD.

    Zoe hang in there and know you are never alone in the world. You have many FRIENDS out here that are STANDING with you and along side of you all the time.
  15. Dorothy45

    Dorothy45 New Member

    I have a dear friends who was diagnosed with fm. I use to think it was from all the stress in her life. I just thought she needed to reduce her stress. Well, now I have it, and can hear my words I said to her. Yes, she has a very stressful life, and it does not help the way she feels, but she would be in pain no matter what. As Stickley4U said, "payback is hell". I love her, for she is like a sister to me, and I wish I had understood earlier. Thank God she loves me no matter how stupid I can be.
  16. scoop

    scoop New Member

    It really fires me up when people say we are faking it. For seven years i have been through this with doctors, so called friends among other people.

    Recently i had a friend tell me the guy she just started dating who is becoming a doctor told her to watch out for those fibromyalgia people they are physco, to stay away from me and that the medical community doesn't believe in it. She says she doesn't feel that way. If i ever meet the man i think i am going to hand him a article on it! (I guess that would be better than decking him!!)Luckily more information is out there to support us. He is the one that is physco and if he had half a brain he would educate himself properly, because unfortunately he will come across many fibromyalgia patients in his career.

    It boils my blood when people put that label on us they don't realize how hurtful it can be. I have realized though that unless they can jump in our bodies and go through everything we go through they will never understand.

    I have learned to pray for them because they are just being ignorant.

    Well i guess enough venting. I hope i didn't get all of you more fired up also this just is a subject that does get me going that is for sure!

    Have a good night everyone,
  17. ssMarilyn

    ssMarilyn New Member

    Well I know that I can't be faking it, because I had never even HEARD of FM until I was diagnosed by a neurologist and she said "you have FM..." I said, "what the heck is that???". (how can you fake something you know nothing about?)

    Marilyn :)
  18. ReallyTired

    ReallyTired New Member

    Yeah, I guess I'm faking! Had a successful career with a well-known international consulting firm, making a six-figure income plus bonuses, perks and benefits unmatched by most companies. Found myself getting sick for no apparent reason, stopped sleeping, started getting joint pain and back pain, horrible fatigue, memory problems, fog…..etc. Started failing at my job that I had know for 21 years, putting high profile million dollar projects at risk. Went out on company paid Short-term-disability, 3 months past and was unable to return to work, the company kept me on the payroll for another 6 months and pleaded for me to return but I had not the ability to get back on my feet. The company reluctantly terminated me after nine months of leave. …..and for what??? Well, I guess I wanted a slower pace of life where nothing matters, no income except for the meagerly amount I get from SSID, which doesn’t pay the bills nor put my kids through college, nor allow my family to enjoy the things we use to do or have. I have two young sons, that I’m no longer able to spend quality time with. Yep! I’m faking it all right; really love this life of mine now. The truth is, I have loss everything and live a blight of a life now and wouldn’t wish this on anybody except for maybe Sadam and his followers. This DD would have put a stopper on their terror sometime ago.

    I can see a lot of you have loss just as much. This disease is real as hell, we know that, and we all need to continue to press forward until we get some answers and get the recognition we all deserve. I’m not going to give up, not until I’m well again. We will find an answer and a cure!!!!
  19. Aisling13

    Aisling13 New Member

    Every day I push myself to the limit. I hurt and ache and I am so tired just from doing housework. The stairs alone kill me and several times I have skidded down the last few and once I truly started to fall from the top but caught myself on the rail. All of this I bear in silence because no-one will listen to me. For years I have had unexplainable pain and illnesses. The Doc's scoffed at the idea of me having FM but they did acknowledge that I have Epstein-barr. I fianlly got a DX from a Rhuematologist. And I said "kiss my butt" to the all the Doc's that rolled their eyes at me and told me to get counceling. So when you say that someone thinks you are faking I feel for you. I think the only thing that pulls me through is that one of my friends has FM worse than me and she BELIEVES in me. She understands everything I feel and every thing I forget. (like to call her once-in-awhile). I say forget the non-believers but sometimes I wish I could ask for help and someone would help me and not think I am being lazy or a Drama queen. Sometimes when I have Fibro fog so bad that people think I am on drugs or stupid I want to ring their little necks but I just don't have the energy :)
  20. malysa

    malysa New Member

    [This Message was Edited on 04/28/2003]