Dr. Bell on CFS and guilt for being tired

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Mar 31, 2011.

  1. mbofov

    mbofov Active Member

    ProHealth posted this article on March 30. I was blown away by Dr. Bell's canny observation of the guilt that goes along with having CFS - I hadn't realized that feeling guilty or ashamed for not being able to do things was a huge part of me - I feel embarrassed for not being able to do things even though no one overtly condemns me, etc. Anyways, it's really worth a read. Here's an excerpt:

    "The November Factor": Dr. Bell on ME/CFS & the Flu that Isn't Flu

    This ME/CFS patient case history is excerpted from Dr. Bell’s book Faces of CFS - Case Histories of Chronic Fatigue Syndrome, published in August, 2000 (downloadable free at www.davidsbell.com). Each case illustrates a different aspect of the illness that he has studied in patients affected by the ‘Lyndonville Outbreak’ over the years. And the detective work continues. There will be a public webcast of his summary of up-to-the-minute findings on XMRV & other investigations on Saturday, April 16, for example; and he will present a 25-year research follow-up on Lyndonville patients at the Invest in ME International Conference, May 20 in London.


    If robbery is taking without permission, CFS could be the greatest thief of all.

    Certainly much has been stolen - the energy to go to work, to play with your children; the ability to enjoy reading a book; the luxury of a refreshing sleep. And, like true, great crimes, the victim sometimes does not even realize that a robbery has been committed.

    It is as if the thief in a department store steals the surveillance camera along with the jewelry. The thief of CFS steals not only energy, it may rob the victim of the ability to perceive loss. And the mechanism is simple: Energy is quietly replaced with guilt.

    Because the victim feels guilty about experiencing fatigue, the robbery goes unreported. Is it any wonder that this is a controversial illness?

    The gift of human nature is the perception of who and what we are. We see ourselves either accurately or inaccurately dependent upon personality and the myriad of factors we call life. We see and feel, relating these experiences to our image of who we think we are. Because fatigue is something to be ashamed of in our society, it may go unreported.

    The thief makes off with the priceless essence of our life and replaces it with a plaster statue of guilt. CFS becomes a thief of identity as well as activity. It is possible to say “I am an athlete,” or “'I am a devoted parent.”

    When CFS has crept out the back door with energy and hope in a burlap sack, these statements are no longer possible.

    [I would disagree with his last statement, that one cannot have CFS and be a devoted parent at the same time, but I think he merely phrased it wrong - because he strikes me as a very compassionate man, I am sure what he meant to say was that a parent with CFS cannot do all the things they long to do as a parent, but that does not mean they are not devoted]
  2. heapsreal

    heapsreal New Member

    i dont know if its being a male with cfs but i feel guilty for not being able to work fulltime, or being antisocial during times of flares or spending money on medications and supplements etc for cfs or just not being able to spend quality time with the kids. There going to remember their dad as lying in bed, maybe reading and not doing much else. feeling guilty for that ground hog day existance. I think guilt is very common and speaking as a male, bad for our ego. Im also not saying it doesnt happen to women but maybe for different reasons.

  3. kch64

    kch64 New Member

    Yes, I feel guilty at times for being sick. How stupid is that? Like I asked for this crap? No, but the outside world that doesn't feel our pain, tries to make us feel as if we are liars.

    I have really tried to change my perception of myself. I was diagnosed in 2004, after years of suffering, spending thousands of dollars trying to feel well. I'm trying very hard to love myself, and to not feel guilty over something I have no control over. I wouldn't want anyone who is sick to feel guilty, so why do I feel this way? Especially when I have to call in sick to work. I really feel it then.

    We must have compassion for ourselves. If others don't agree, then that is their issue. Be kind to yourself. You need the love.
  4. shaz73

    shaz73 New Member

    This diagnosis can so easily make you feel guilty, which is really stupid as if you had cancer you wouldnt feel guilty for taking it easy, would you?! Its because it is a "hidden" disease and people can't see fatigue, can't really KNOW how that person is actually feeling. I havent always told people as I feel that most wont or dont understand. However, since recently finally getting a diagnosis after many years I am now telling some people in my life and have come across several people who not only understand but in some cases have it themselves or something similar that I didnt know.

    I think us in the Western world are made to feel that if we are not doing anything, or striving to work harder and harder that we dont actually have any value as human beings. How awful to live in a society that thinks this way... But we can and should fight against this - seems to be a lot of fighting with this condition! Fighting to get recognition that our condition is actually REAL, fighting to get up everyday and live, fighting our relations, co workers etc etc. No wonder we are so blinking worn out.

    And yet... I still feel guilty! Madness, isnt it? Am trying to be kinder to myself and to not worry what others think. My faith in Christ helps - he alone accepts me and loves me unconditionally.

  5. dumdum

    dumdum New Member

    Just today I was experiencing the guilt and becoming depressed at the thought of not being like everyone else, wanting so badly just to get on with things. Then I remembered after years of living with cfs the best advances I have made was when I accepted that I have cfs and need to live with it the best I can, and that means letting go of the guilt.
  6. mbofov

    mbofov Active Member

    The guilt for being sick. Yes, we wouldn't feel this way if we had cancer, or heart failure.

    I do think as someone else mentioned that the invisibility of this illness is a huge part in causing the guilt. I generally don't tell anyone new about CFS because I have learned from experience that most people don't want to know about it. A couple of times when I start to explain, they jump in and tell me about their heart surgery (but they're still working and having a full life while I can hardly get the bare necessities done). One woman was still recovering from chemo 2 years after the fact but she was able to go swimming for 2 hours (!) to try to lose weight and walk around a lot as well. I'm lucky to be able to splash for about 15 minutes in the pool if I don't want to risk a crash.

    So it seems that just the fact of keeping a secret causes feelings of guilt and shame. I mean, we can't even explain to our doctors what's going on! or be taken seriously by them.

    I was telling my sister I wish I had a meter like a fuel gauge in a car which shows my level of energy so it's very evident.

    I agree with you all that we have to be compassionate with ourselves. But the guilt is insidious - it sneaks up without warning and without realizing it I find myself feeling apologetic, etc. all over again.

    Yeah, letting go of the guilt is essential - even if you have to do it over and over and over again.


  7. MsE

    MsE New Member

    Recently had to meet with a major group of oncologists and a surgeon in top hospital in Seattle. Their disbelief in CFS was obvious. In fact, one doctor asked what the initials "CFS" stand for. Aaargh!

    It is hard to keep the faith when the pro's in the business don't have any.