guess what? CFS isn't real

Discussion in 'Fibromyalgia Main Forum' started by ILM, Feb 12, 2007.

  1. ILM

    ILM New Member

    I'm sure you're all relieved to know, we're all just lazy and crazy.
    My dh told me yesterday that he doesn't believe in CFS and there is no way that it or Fibromyalgia is real.

    People with CFS and FM are just lazy and lack the gumption to pull up their bootstraps and get on with life.
    And that if I didn't "sit on my a$$" so much I wouldn't feel so bad all the time.
    I have 4 kids btw, so obviously I don't just sit arouind all day.

    This was after I told him about what I had read about CFS possibly being contagious.

    He does however believe in endometriosis and IBS so I am allowed to have those.

    CFIDS however is just a fake illness made up by drug companies and millions of lazy people, so they can have a reason to do nothing.

    Afterall we know someone that took chemo and then went to work afterwards, so obviously CFS and FM are a load of crap.

    (his mother has FM and I have CFIDS)

    I told him that he was an idiot, I hoped it was transmittable and that he would catch it and that I wanted a divorce.

    Seriously, how I am supposed to get through this and get better when my HUSBAND of all people think this isn't real and i'm sick b/c I don't do enough?

    FWIW, I eat very well and do as much Yoga as I can stand, but have been in a lot of pain with this flare.

    I am always sick, I catch everything the kids bring home and end up bedbound for a few days with each illness.
    Yet that is all my fault.

    Like *I* control my immune system.

    I told him that I no longer believe in back pain.
    He was on pain meds for "back pain" last year.
    So I told him that back pain is just something lazy people make up to get out of doing things and to get drugs.
    The next time he mentions back pain i'm going to ridicule him for being lazy and a liar.
  2. roge

    roge Member

    Sorry to hear your husband is not supportive

    There is a lot of scientific evidence of abnormalities in CFS and FM that cannot be disputed, Just try and gather a list and give it to your husband.

    I like your take on the back pain. Also, as he is a male as I am, maybe he is a sports fan, well there are many hockey and football players who get concussion syndrome and who have to stop their career, careers they love and these are top athletes, so I guess they are faking as well and want to get out of playing a sport they love.

    There is no test or marker for post concussion syndrome (apart from a spect scan) which would could show reduced bloodflow I suppose). Migraine is another one, I guess the person who is vomitting and who feels like their hard is going to split open is faking as well. I could list of many many more syndromes that are as real as Roge writing this post that at the present moment science has not been able to nail down the precise pathology, that doesn't make them any less real. Science is overated, likely knows 10% of what is out there.

    peace

  3. bewell4

    bewell4 New Member

    i just wanted to share that i am so sorry. of course, you are outraged... what a tough situation. i have similar deal; i am living with a family member who is actually hostile. not only do i not get compassion or comfort..but i have to try and protect myself which is so hard when i am feeling sick! anyway...lol..i somehow turned this into my sob story. hope it helps in some way...
    another thought, just a thought, (can't remember if it's okay to post websites? i hope so)..this is a communication technique i've studied for a few years. its no magic cure, but it can give you a different way to see things, and maybe a better chance at seeing the love through the garbage...if you want, check it out... www.cnvc.org
    take care of yourself.
  4. Kellyslaw

    Kellyslaw New Member

    Dear IFM; I am so sorry that your dd hurt you. I recently have been diagnosed with FM, and I have been taken off work for 3 months, from a job that I love, so that I can get the symptoms under control. I was wondering if maybe you could take your dd to your doctor appointments with you? Sometimes when a person hears it from a professional, it becomes real. My dd has gone to every doctor appointment with me, mostly because I cannot drive myself because of the pain meds I am on. He has sat in the doctors office and heard one NP say that it was "all in my head" and he held me while I cried. He also sat in the doctor's office when I was officially diagnosed with FM and the doctor read the diagnosis to us from her medical book, he again held me while I cried. I truly think that making him a part of my life with this disease has helped our relationship. Men, for the most part, get angry when they cannot "fix" us. I know that my husband truly hurts because he cannot make the pain go away.

    I hope this helps both of you. Counseling has helped me a lot. I have been seening a psychologist since I was diagnosed almost a month ago. Again, my dd has taken time off work to drive me to my appointments and he sat in the waiting room for me. I am 45 years old, we have 2 teenage sons, and we have been married 18 years next month. My dd was and is my best friend.

    I hope I don't sound to preachy. I just want to help.

    Good luck and God Bless,
    Kelly
  5. CleverName

    CleverName New Member

    I wonder how you manage with all the stress in your household/marriage. I wish you the best. And tell your know-it-all-husband that he needs some counseling on how to treat the people you are supposed to love.
  6. Slayadragon

    Slayadragon New Member

    I was thinking about this question yesterday.

    The entire time I've been ill, I've had thoughts like this from time to time.

    Anytime I get a little bit of energy to do anything of substance, a thought in the back of my head pops up saying:

    "Well, you're really not very sick. Nobody has unlimited energy, and so it's not surprising that you don't either."

    This is despite the fact that I know I don't have enough energy to hold a full-time job, and that my husband reminds me frequently not to push myself, and that if I don't take my 40 or so pills per day my health immediately collapses.

    It's only been in the past year or so that I've become really convinced that I am sick. The thing that keeps reminding me is:

    1. When I used Provigil for a day, I recalled what it was like to feel really well. Apparently that memory had gotten so distant that living a life where I was able to do stuff for 4-6 hours a day and then spent the rest of the day in bed seemed normal.

    2. Antiviral drugs make me herx like mad. Nobody who's well has this many viruses in their body!

    And yet, still, sometimes when I get a bit of energy (as I have since decreasing my antiviral dose a bit this week), I _still_ question whether I have a serious illness.

    Traditionally, grieving is supposed to be a straight-line path: denial, bargaining, anger, depression, acceptance.

    For years and years, I accepted my illness (for the most part). Occasionally I would get angry or depressed, but not very often.

    With the advent of antivirals, I have moved back into bargaining. We will see if it does me any good.

    The amazing thing is that denial keeps popping to the surface, even for me. I guess there's a psychological reason for hiding one's head in the sand.

    Anyway, I guess I can't blame people who love us and want us to be well to go into that denial mode. The alternative---my wife/husband/mother/child/sibling is really sick and I can't do a damned thing about it---is pretty upsetting.

    That doesn't mean that their denial isn't really annoying, though.

    Best, Lisa

  7. gidgetsmom

    gidgetsmom New Member

    You have my TOTAL SUPPORT!!!

    My dh has alot of documented (x-ray, mri)neck and lower back pain.

    I have FM and, don't get me wrong, he does help me alot. BUT I have learned NOT to discuss my pain with him because he takes 400mg of ibuprofen every 4 hours and if he can do that, I should be able to also! NOT!!

    If I get sick, I am a wooss. If he gets sick, call the ambulance!!!!

    I just take my meds (lortab, flexeril, amitriptyline), function as best I can, and let him think what he darn well likes!!!

    More power to ya!!!

    Shelley




  8. cct

    cct Member

    Is your DH saying that the Center for Disease Control is lying?

    You may want to direct your husband to the website for the Center for Disease Control (CDC). They have web pages that are dedicated to CFS.
  9. bunnyfluff

    bunnyfluff Member

    lets face it. we have nothing *better* to do. :)
  10. sick~kitty

    sick~kitty New Member

    Shades of "yuppie flu" It seems like CFS has been around so long now that attitudes like this should be past, but of course they aren't.

    Does your husband believe in MS? It was once referred to as "Slacker's Disease" because there was no physical evidence of any disease process. Those people just -wanted- to stay in bed or stagger around! Of course the "lack of evidence" was just because people didn't know where to look or have the technology to do so.

    Has your husband read all the available studies that show abnormalities in people with CFS? Maybe if you bombard him with those it would help - or not.

    FWIW, my Mom never really understood either. Her attitude hurt me a lot, but I didn't live with her every day.
  11. ILM

    ILM New Member

    He thinks the CDC is in cahoots with the drug companies, even though there is no drug spedifically for CFS.
    He said he didn't care what the CDC said, he still doesn't believe in it.

    We can talk about it and I can go to the dr though, he just not going to lie to me and say he believes in any of it.

    He and our older dd have dyslexia, he said that was a result of laziness as well.
    Yes when she was 4 she learned to write mirror image backwards so she could run this huge dyslexia scam on us all (drs, therapists, psychologists). It was her grand plan to stay out of public school and fake 5 LD's so she wouldn't have to read until she was 9 and get to go to occupational therapy every week.



    Needless to say I am not speaking to him. He came home last night and asked where dinner was at (the kids and I had a big lunch so we had sandwiches for dinner)
    I told him I didn't believe in dinner.
  12. elliespad

    elliespad Member

    Huh. Gee, has he read over the notes from the IACFS Research Presentations ? These were posted by Mezombie titled, A Physicians Notes on the IACFS Research Presentations? Hard for a doctor to argue with these findings.

    P.S. I LOVE that you don't believe in DINNER. HA! TOO FUNNY!
  13. California31

    California31 New Member

    Unfortunately there are doctors out there who feel the same way your partner does...it is beyond confounding....I hope you find a supportive health care professional...allopathic or alternative....who understands pain relief...and can help you discover ways to boost your immune system. I used to work in an office with a lot of college students...they'd bring a cold to work...be off for a day or two...and I'd be in the throes of a severe cold for 10 days....very draining...as of course...you know.

  14. u34rb

    u34rb New Member

    ILM,

    "I told him I didn't believe in dinner."

    Nice one!

    You could always tell him that you don't believe he's hungry. Tell him to prove it!

    Better still, tell him that he doesn't look hungry!!!

  15. Bruinz

    Bruinz New Member


    That is a real good one, "I don't believe in dinner".

    There is no proof he is hungry. lol

    Very clever, I must say.

    Sorry you have to take this garbage from your hubby.
    We believe you.

    It sounds like you have a great attitude.

    Gentle bear hugs

    Bruinz

  16. pearls

    pearls New Member

    I loved, "I don't believe in dinner" too!

    It is bad enough to have to deal with professionials who don't believe in our illnesses than to deal with spouses who also give us crap. I hope his problem is simply that he feels powerless to help and is afraid of what's been happening. That's a pretty bad place to be in, as well. I hope he can learn to give you the support you need.

    Pearl S.
  17. cct

    cct Member

    Oh my gosh! I love it!

    "I don't believe in dinner."

    What a great comeback!

    And I think that your DH should have to prove, scientifically, that he really is hungry everytime he says that he is hungry. Then, once you are satisfied with the hard scientific evidence, you might consider preparing a meal to support him with his hunger problem.

  18. tandy

    tandy New Member


    NOT to read it.
    :)
    because I knew it would just piss me off, yet again.

    I don't understand at all how or why people would think that we chose this way????? That we prefer NOT to work or have a real social life???
    I loved what I did before FM took it all away.

    I've had my fair share of sarcasm and disbelief about Fibro,...and I never really know how to put em in their place.?? This DD is so unfair.
    It makes us feel like total hell,..and robs us of everything,..
    yet nothing proves our misery is real.

    ggggrrrrrrr!

    Dinner?
    prove your hungry!!
    that was so cute!! lmbo
  19. diva42597

    diva42597 New Member

    My doctor tells me that it's all in my head...my fiance/boyfriend/x-boyfriend (that's another subject) tells me I'm lazy and my friends tell me to snap out of it. I just do what I can. I know that it's not in my head. I wish I had a support system, but we've got to be our own support system.
  20. sues1

    sues1 New Member

    If drug companies are behind this......just what medicine or pill do they advertize for us?

    There is no one thing that we all use or take.

    When I started getting like I am I was hesitant to even tell the Dr. all. I never heard of this before. If I never heard or read about it, just how did I figure out what I should say is bothering me? We sure did not get together and hatch this up. No one put this in my head.

    I did not want to quit working. I do not enjoy staying at home all the time. Nor not hardly being able to walk. Yet I also have times of denial and try to snap out of it. Does not work! Just gets worse.

    Blessings.......Susan