Ashamed of Chronic Fatigue Syndrome?

Discussion in 'Homebound/Bedbound' started by gb66, Aug 23, 2014.

  1. gb66

    gb66 Active Member

    I have had chronic fatigue syndrome for over 35 years and I still cringe when I hear the name. I have to wonder, is it just me being overly sensitive?

    When I first realized that what I was suffering from had a name, I was so relieved. It was in the 1990's when that happened. The first 10 years or so, I didn't know what was wrong.

    Unfortunately, not much has changed in all these years. I'm still ill, still having to convince any doctor that I go to that the condition is "real" and still have some people look at me as if I'm from another planet.

    In additon to this, every new doctor wants to find another reason for the symptoms so I have to take repeated tests. There have been times when another condition shows up in addition to the CFS, but doctors tend to believe that what they discovered has been the cause of the problem all along. Of course, I was just as ill before these conditions ever developed, but that doesn't seem to matter.

    Now, I'm reluctant to even mention CFS to anyone. I wonder if others have similar feelings about this. I was just reading my 32 year old grandson's blog online, and he was talking about his sleep reversal problem. He prefers to sleep days and is a night person. Always has been. So have I.

    He mentioned in his blog that his maternal grandmother (me) has chronic fatigue syndrome and sleeps most of the day and is up late at night. He also mentioned that his other grandmother had been a night owl also. I don't mind that he addressed the sleep problems, but when I saw the words Chronic Fatigue Syndrome, I felt sick inside. My first thought was that some of his friends, who comment on his blog site, would make fun of me. I fully expect jokes about the CFS, but maybe I'm just way too sensitive about it.

    I first thought that I would ask him to remove the CFS reference, but maybe not. Why should I be ashamed of being sick? I'm going to leave it on there. Any thoughts on this, anyone? GB
    Last edited: Aug 23, 2014
    cgrbuff likes this.
  2. hangininthere

    hangininthere Active Member

    Everyone has different reactions to things, depending on their own individuality.

    I've tried to educate my parents and siblings about my CFS and they've never once said a word in response, not even an "Oh." Same with extended relatives at family reunions I've told, feeling the need to explain my exhausted brain-fogged behavior. Not one word. Which leads me to believe that they don't believe me.

    So I, on the other hand, would be thrilled if one of them mentioned I have CFS. That would represent acknowledgment to me.

    Some people are private though and don't like personal things mentioned in public. I'm the opposite of a private person. I wear my heart on my sleeve. So I can't help but blab it from the rooftops. That's just me.

    We've talked before about how doctors don't believe we have CFS, or believe CFS is real. They'd sing a different tune if they contracted it. Or else they'd do like my ex-mother-in-law did. She has CFS, yet still called me a hypochondriac. Weird.

    Patti
  3. rockgor

    rockgor Active Member

    Hi GB

    I can't remember when I first heard of CFS. I know I'd been ill for several years.
    Don't think I've ever heard a joke about CFS. Doubt if most people have heard of it.

    Anyhoo, to me there are two good things about being old. I don't have to work
    anymore, and I don't care what anyone thinks about me.

    On the few occasions when I said I couldn't do something because of health reasons,
    and people wanted more info, I didn't use the term CFS. I just mentioned a symptom
    or two. "Oh, not much energy; insomnia. You know. Just feelin' poorly."

    Hi, Patti, we were posting simultaneous. (Quoting from an old 1940s radio program
    wherethe "ly" was never attached.)

    'Course CFS could mean a lotta things:
    Can't Find the Salt. Combat Flight Simulator. Certified Figure Skater. Connie
    Francis Society. Cantaloupes For Sale.

    Hugs
    Rock
  4. gb66

    gb66 Active Member

    Patti, I know that silence you're talking about. It's worse than somone making a remark. :) At least they acknowledge you with a reply!

    I do know I am way too sensitive to what people think about me where CFS is concerned. I am so afraid they'll think it's "all in my mind". I need to develop a thicker skin.

    I do believe my grandson has some understanding about it though because his sister had mono when she was about 12 years old and her doctor said she may have CFS. She had stayed ill a lot longer than most people do with mono. As it turned out, she did recover completley. She went on to finish college and is now married and working for a historical society. Thanks for the reply. GB
    Last edited: Aug 23, 2014
  5. gb66

    gb66 Active Member

    Rock, I can remember hearing a couple of jokes on tv a few years back. And I heard one of the news guys make a very insensitive remark about people who 'claim' to have multiple chemical sensitivity. He said it's a non-illness, or something like that.

    That's a great list for CFS! :) How can I join the Connie Francis Society? Oh, and what do you charge for cantaloupes? (Now I'm trying to think of more of those.) Hey, it could be our next game! Thanks for the smiles.
    GB
  6. Soul*

    Soul* Active Member

    Candy Free Society
    Care For Self
    Careful Freaky Smiles
    Couldn't Find Something
    Constantly Forget Syndrome
    Caring Friends Sponsorship
    Clowns Faking Sickness (yeah right :p)
    Carrots For Seals
    Can't Find Spellchecker
  7. rockgor

    rockgor Active Member

    Clever, Funny Soul!

    Rock
    Soul* likes this.
  8. jaminhealth

    jaminhealth Well-Known Member

    Get rid of the shame thinking....and guilt and fear and and and...

    I've worked on this all my later adult life....You are you and It Is What It Is...my daughter reminds me of that statement a lot.

    THere is a CFS member talking about Licorice Root and how it's helped him for 3 yrs....he says he's dealt with CFS 30some yrs....

    Check it out gb...
  9. Soul*

    Soul* Active Member

    Careful with licorice root, it could possible raise your bloodpressure a lot even when only taking a little. I used to like it as a sweet or in tea but have to be very careful with using it.
  10. bct

    bct Member

    I just tell people I have Myalgic encephalomyelitis! That shuts them up pretty fast! :D.

    Barry
  11. TigerLilea

    TigerLilea Member

    I say that I have a chronic illness and leave it at that.
  12. jaminhealth

    jaminhealth Well-Known Member

    I agree totally with Rock, I don't care what anyone else thinks of me....it's NONE OF MY BUSINESS what they think of me....

    That was pounded into me when I started on the Religious Science "new age" path in the 80's..... I grew up with "what will they think"..

    Glad I'm rid of that stinkin thinkin....
  13. rockgor

    rockgor Active Member

    Hi Kids

    Thought of another CFS. One that folks commenting on the news frequently
    post. Often in response to something young people have done. CFS
    Can't Fix Stupid.

    Jam, mayhap you had a mother like mine. Her guiding principle in life was
    not something like: what would be good for me and my family. It was
    "What Will the Neighbors Think". (My father's guiding principle was,
    "Nobody gets between me and my liquor.")

    Barry, I'd forgotten all about Myalgic encephalomyelitis! Used ta be I cud
    spell it. Not any longer.

    Hope you're all having the best day possible.

    Rock
  14. TigerLilea

    TigerLilea Member

    Rock, I grew up in a "what will the neighbours think" house. It took me years to lose that mentality and not care anymore. And I'm sorry about your dad. That never makes for a happy household. :(
  15. gb66

    gb66 Active Member

    Rock and Soul, Have mercy, we can turn anything into a game! :)

    I am truly going to take all this good advice and work even harder on not being so sensitive. I know it's a lifelong reaction of mine. I was never a people pleaser type but inside I felt like everything that went wrong in my family, both my growing up family and my own kids, was my fault.

    This was reinforced in so many ways that I won't go in to. But the bottom line is that it's not. I have come a long way since I've been participating on this board but I still have a ways to go.

    Thanks also Tigerlilea, Barry, and Jamin. (I'll have to check out if licorice root is okay for diabetics.) GB
  16. gb66

    gb66 Active Member

    Cats, For Sure
    Canes For Seniors
    Control Freak Syndrome
    Chocolate Fudge Sundae
    Chocolate Fudge Sundae (That one needed to be repeated in protest to Soul's Candy Free Society!)
    Can't Feel Sensitive
    Craving For Sleep
    Chloroform For Surgery
    Cute Fuzzy Slippers
    Cosmic Flying Saucers
    Cunning Feline Stealth
    Country Fried Steak
    Cold Fruit Salad
    Calorie Free Soda
    Craving For Strawberries
    Can't Find Shoes

    So then, could M. E. (Myalgic Encephalomyelitis) stand for Miserable Existence'? Just wondering! :)
    Last edited: Aug 26, 2014
  17. Soul*

    Soul* Active Member

    Sorry GB LOL Chocolate Fudge Sundae is TDM for me :p (three day migraines) Ooooh I bet migraines could fit in the ME game :p

    Migrainic Excellence :D
    Multiple Errors
    Mayor Excesses
    Mostly Exhausted
    Must Eliminate
    Mighty Evil
    May Evacuate
    Man Expelled
    Maintain Enjoyment
    rockgor likes this.
  18. mbofov

    mbofov Active Member

    I think people with CFS are in a weird predicament. I don't know of another illness which is so devastating and yet when you go to the doctor, the very person who is supposed to help you, you are treated as though you are delusional. "don't react - you might encourage her in her delusions" - that's the feeling I get when I tell doctors about crashing. They don't say, how awful! or anything to acknowledge its reality. Instead their face remains carefully blank (like hanginthere described). once in a blue moon I get an uncensored reaction from someone (a chiropractor once) when I described crashing after minimal exertion, and I saw a look of horror on his face. That was the last time I saw that.

    Anyways, yeah, we're not supposed to care about what others think about us, but if no one validates your experience it can get difficult to believe in your own reality. Did you ever see Gaslight with Ingrid Bergman and Charles Boyer? It's a great movie, and I remember thinking, oh, that would never happen to me, I would never doubt myself - hah! How often do we ask others what they think of something, or say, is it just me, or is this really happening?

    So for the most part people with CFS I think are operating in a vacuum. We don't get validation or acknowledgment that we're even real! I think this situation has all the ingredients for creating shame.

    Having said all this, yes, I agree with everyone we're not supposed to care about what others think of us, I can't depend on others for my self-esteem, etc. But this isn't just an issue of getting approval from others, it's getting confirmation that what we experience is real, that we're not nuts.

    So I think it's a difficult situation and that's one reason this board exists, to get validation and confirmation that we're not crazy or defective. Because it just is very difficult when almost the whole world (and especially the people - doctors - who are the ones designated to know what's going on) denies your experience, to maintain belief in yourself and not think there's something wrong with you.

    Remember when CFS was called the yuppie flu? If that's not denigrating, I don't know what is. I read in Osler's Web about patients who were sent to the Mayo Clinic and saw posted on someone's board there something that was supposed to be funny, something like, "you know you have CFS when ..." and then a bunch of sarcastic tag lines.

    So I've learned in general not to mention CFS unless it's someone I trust very much or has a legitimate reason to know. For everyone else, if the issue of why I'm not working, etc. comes up, I just say I have some health problems. But I think having to hide what's really going on all by itself creates shame (sort of like living in a CFS closet? hope I don't offend anyone with this analogy!)

    BTW, I like the CFS word game! maybe next time I go to the doctor I'll just say I have cunning feline stealth! :)

    Mary
    Soul* and gb66 like this.
  19. jaminhealth

    jaminhealth Well-Known Member

    Yes, all I heard it so much "what will the neighbor's think".....took a lot of hard work and some yrs to get rid of all the tapes programmed in me from day 1......

    If I had CFS......I would call me: cute funny smart.......

    GB, it takes work to learn how to shake loose of the ties that bind.us....

    One exercise I loved in my Religious Science principles was a word game on what we have learned...going around in a circle and waiting for my turn...it came to me FREEDOM.....jam
  20. jaminhealth

    jaminhealth Well-Known Member

    I also don't like to OWN the stuff I deal with....I'd rather say I deal with or I'm challanged with...owning it makes it more powerful...

    Words can be strong.
    Soul* likes this.