Being Carefull About Disclosure Of Illness!

Discussion in 'Fibromyalgia Main Forum' started by techno, Dec 6, 2005.

  1. techno

    techno New Member

    Hi Folks......

    I'm very carefull about to whom I share my illness, as people can discrimate and stigmatise people who are ill.

    Sad but its true!

    Especially at work....

    Some people will try and get you dismissed on medical grounds, just because they're nasty and mean spirited.

    I just do my job and keep my personal medical problems to
    myself.

    Geez...... it's even dangerous to share your medical problems with so called friends and family.....
    As you might be ridiculed amd dismissed as a hypochondriac or worst as a malingerer, or neurotic nut job.

    And there are many Doctors and stories on the Internet etc.
    that invalidate FMS/CFS as a true illness still.

    This illness was only acepted as a true illness in 1990
    and many Doctors who were educated long ago, still
    aren't aware of the true nature of this illness and
    will write you off as an attention seeking neurotic.

    It's no wonder.....

    We walk in to the clinic each time with different
    physical complaints, all symptoms of FMS/CF.
    When we present each symptom separately to the Dr.
    he looks to treat just that part of the body(Ex. sore back) but he doesn't connect the dots.
    He doesn't realise that all these symptoms together,
    represent a whole body, systemic disease called Fibromyalgia or Chronic Fatigue Syndrome.

    It's sad to say that it takes decades for the medical community to reverse the previous incorrect assumptions about this illness.
    The medical profession is SLOW to change......

    Whats your opinions on this subject.
  2. renae1979

    renae1979 New Member

    I agree 100%!! I informed my former employer about my illness so that we could document it in my file due to my frequent absences. BAD move!! Immediately I was treated differently and I came to learn that my supervisor and the office manage would joke and critize behind my back about my illness and my absences. The only support I received was from one of the attorneys in the firm because his wife also has fibro and he understood how miserable it was!!

    I have learned my lesson and when I changed jobs because they were miserable people, I decided to keep my medical business to myself. It has worked out much better that way!!
  3. ilovecats94

    ilovecats94 New Member

    When I was looking for the code on the back of the sheet from the doctor's office, I noticed that the code 729.1 for Fibromyalgia was gone. Only the code 729.0 for Fibrositis was there.

    I couldn't even find a code for CFS. Does this mean things are going backwards for us?

    This fact really depressed me. I thought we were going forward in being recognized for CFIDS and Fibromyalgia, but it just makes me wonder now.

    Hugs,
    Faye
  4. lenaw70

    lenaw70 New Member

    I lost two jobs to missing work. The first one I lost- I wasnt even behind on work, and my boss told me he just needs me there EVERYDAY.

    I have a friend who still badgers me to go everywhere with her and I just DONT want to and then she treats my husband like he is a baby (due to his bad back). I dont mean he doesnt need empathy, its just most of our friends, family,and others can understand his ailments but dont seem to care about mine at all. The worst part is, I have had this problem since 1995 and his back went bad in 2000, yet knowone seems to acknolege my health problems and treat me like I am just lazy.
  5. lovinlifeinAK

    lovinlifeinAK New Member

    not in you all's shoes!! I have had so much more support and understanding from my employers since I told them. They do not question my absences anymore. The people I work with are really nice supportive people. Of course I also live in a small community.

    But if you wind up in the hospital here - it is amazing how much support and help comes. My boss even brought me and my kids lunch one day when I had the flu.

    I am counting my blessing and staying were the people still have hearts. I feel so sorry for thoughs that do not have supportive people in their lives. Hugs to all of you!
  6. Jgavi

    Jgavi New Member

    glad you posted this- i have been a victim of this- many drs dont want to beleive it becuz its a pain in their neck to treat........so they say their is no such thing...


    jgavi
    [This Message was Edited on 12/11/2005]
  7. jake123

    jake123 New Member

    I was diagnosed with a muscle disease about three years ago, polymyositis. I had to take 60 mg. of prednisone every day for quite a while to get my immune system to stop chomping on my muscle tissue. The end result was muscle weakness.
    Well, I was diagnosed with FM,CFS several years before that. So I just say I have polymyositis. Of course, if they have a few minutes I can tell them about my vertebrae fusion and degenerative disc disease and arthritus in my back. And osteoarthristus in my hands and bursitus in my hips although I am going for a bone density tomorrow.
  8. TXFMmom

    TXFMmom New Member

    I was first told that I had nyastenia gravis.

    Then, they switched it to MS.

    Then, finally fibromyalgia and major disk deterioration.

    When any doctor gives me grief about fibromyalgia, I POINT OUT TO THEM THAT AIDS WAS A SYNDROME FOR YEARS BEFORE THEY FOUND THE CAUSE, BUT THAT DIDN'T KEEP PEOPLE FROM DYING FROM IT, AND THAT IF THEY DON'T RESPECT MY DISEASE, THEN THEY CAN KISS MY BEHIND.

    BESIDES, I POINT OUT TO THEM THAT I WAS SICK ENOUGH FOR THE DOCTORS TO THINK I HAD MYASTENIA.

    I am a disabled RN, Advanced Nurse Practitioner,and Certified Registered Nurse Anesthetist and I DON'T TAKE ANY CRAP.

    BEsides, if any of them ever tisk taw it, I TELL THEM THAT THEY ARE THE IGNORANT ONES BECAUSE OBVIOUSLY THEY HAVEN'T READ THE LATEST RESEARCH ON IT, AND THEN THEY LOOK RIDICULOUS AND SHUT UP.