When the Symptoms Don't Lead to Easy Answers

Discussion in 'Fibromyalgia Main Forum' started by ephemera, Apr 5, 2006.

  1. ephemera

    ephemera New Member

    The article is long but worth it.

    The New York Times, April 4, 2006

    When the Symptoms Don't Lead to Easy Answers

    By JANE E. BRODY

    When I was given a diagnosis of breast cancer in February 1999, many friends and readers wondered: "Why did
    you get breast cancer? You take such good care of yourself!" The same sort of remarks followed the surgery
    I underwent in December 2004 to replace my badly arthritic knees.

    It seems that many people believe that if you do everything "right" (which is not to say that I did everything right, just most things), bad things won't happen. But bad things can and do happen. And they happen to the "best" and the "worst" of us. Lisa Kron, the author
    and star of "Well," a very provocative and entertaining play now on Broadway, says: "People tend to think we're
    all the sole authors of our own fate. But life is more complicated than that.

    "If you're blessed with good health, you can say, 'I did it.' But if you lose your health, you know that
    external forces beyond your control can get in your way."

    Healthy people tend to act as if beneath every sick person is a healthy person trying to come out — that, as
    Ms. Kron put it in an interview, "people who are sick are just not trying hard enough." Those afflicted by
    serious depression are often told by others to "pull yourself together," "snap out of it," as if they
    deliberately choose to suffer.

    She added: "Empathy on the part of people who are well is very hard to come by. When you're sick and get better,
    it's hard to remember what it was like to be sick."

    Growing Up Sick

    Ms. Kron's play is autobiographical: about her mother, Ann, who has been plagued since childhood with unexplained
    bouts of extreme fatigue and lethargy that she attributes to allergies, and about herself, similarly afflicted as
    a child but who then recovered once she left home.

    Was Ms. Kron's illness "real" (as the allergy clinic she checked into insised it was) or were her symptoms, so like
    her mother's, a morbid form of identification with a mother she loved for her caring ways and admired for what she
    was able to achieve despite her illness?

    "I come from a family where everyone is ill," Ms. Kron explains in the opening scene. "It is the norm. The presumption of illness is so strong that it's how we keep time. People in my family say things like: 'Now I know for a fact the warranty's not up on that dishwasher. I got it the winter I had congestive heart failure seven times.' When I fill out forms with family medical history sections where you check off the little boxes, I check them all."

    In the interview, Ms. Kron conceded, "To some extent, my illness could have been learned behavior. Part of the reason I could leave the family culture was that my mother completely encouraged me to do that. She wanted me to have a
    different kind of life than she had."

    Ms. Kron said she recognized that she needed a new identity. "When your identity is wrapped around being a sick person, you see a need to keep saying, 'I'm really sick.' Who will I be if I'm not sick anymore? But that's not to say you caused yourself to be sick or that you don't want to get well."

    And as far as Ms. Kron can tell, her mother is really sick, even though no doctor she consulted could ever put a proper
    label on it. One doctor told her on six occasions that she had mononucleosis. Another labeled it "tired housewife
    syndrome," and still another thought she suffered from boredom and challenged her to get out of the house and find
    something she's interested in.

    All of these labels were laughable to her daughter, who described her mother as "an incredibly curious, engaged person who is unstoppable on the days she has energy. But a lot of the time she has bone-deep physical lethargy that she can't overcome."

    Ms. Kron tells her audience: "My mother is a fantastically energetic person trapped in an utterly exhausted body. It's
    very confusing. Her energy level has two settings: all or nothing. Most of the time, it's nothing, but when she has a
    burst of energy, it's awe inspiring."

    In the interview Ms. Kron said: "I could look at my mother and say she can do X, Y and Z and make herself better. But
    she may not have the same resources I have. Individuals can act upon opportunities, but not everyone has the same
    opportunities."

    In the play, Ann herself says: "You blame yourself. Wasn't it Susan Sontag who pointed out that whenever the cause of
    an illness is mysterious, it's assumed to come from psychological problems or a moral weakness? And once science finally figures out the medical root of the illness, that assumption disappears."

    Will we one day have a better — that is, more scientific — understanding of ailments like chronic fatigue syndrome,
    fibromyalgia, Gulf War syndrome, multiple chemical sensitivities or any of the other current "wastebasket" diagnoses that many medical and lay people consider psychosomatic?

    I certainly hope so. After all, we now have scientific explanations for past "mysteries" like depression, post-traumatic stress disorder, fainting spells and attention deficit hyperactivity disorder. And we now know that autism, migraine headaches and transsexuality are not caused by bad mothering.

    Psychology's Role

    This is not to say, of course, that psychological makeup plays no role in people's propensity to develop certain diseases,or their ability to overcome illness when recovery is at least a possibility. People who are pessimistic or fatalistic, for example, may choose behaviors — like smoking, overeating or drinking heavily — that reflect their belief that they are doomed no matter what they do, so they may as well do what they like.

    Likewise, optimism doesn't hurt even when the decks seem clearly stacked against people. Dr. Dan Shapiro, a clinical
    psychologist and associate professor at the University of Arizona medical school, a determined survivor, somehow
    weathered two bone marrow transplants. The second transplant enabled him to beat Stage 4 Hodgkin's lymphoma and subsequently marry, become a father and make a career of teaching doctors that patients are people, not "the pneumonia in Room 12."

    However, optimism is clearly not a cure-all. The most optimistic person I know is being treated for her seventh recurrence of chronic lymphoma. Christopher Reeve, paralyzed from the neck down in a horseback riding accident in 1995, lived nine more years fostering research on spinal cord injuries, convinced he would walk again.

    What is the bottom line? We should not be too quick to dismiss symptoms that seem to lack a physiological basis. A little empathy can go a long way while medical scientists continue to uncover physical explanations for what may now seem to be be psychosomatic symptoms.

  2. EllenComstock

    EllenComstock New Member

    Thanks for the great article. While it's true that sometimes people can bring on their own health issues, it often is not their fault. Although positive thinking may not necessarily cure us, it certainly can make our lives more worthwhile.

    I believe that in time FMS, CFIDS and other illnesses that have often been considered "wastebasket" illnesses or psychosomatic, will be considered real, debilitating illnesses. Already, since I've been diagnosed with FMS in 2000 (although I believe I've had it most of my life), there is more information on FMS and related illnesses and more doctors and other medical professionals who believe they are legitimate. We have a ways to go, but I believe that there are some positive changes happening.

    Thanks again for the article.

    Ellen
  3. Cromwell

    Cromwell New Member

    Make that play into a movie.


    I have thought for years that many of my health nut friends(I am a health nut too) often will blame someone for their illness-as in well what does she expect when she doesn't eat whatever fad nutritional thing they are currently on, even thought he person may have actually led a healthier life in general than they did(prior to becomming health nuts

    There is always an element of blaming the person. It is true that some people do outrageous things like drugs, alcohol or smoke and bring some illnesses to themselves, but I do think that so many people have it flung at them.

    I cannot tell you how many people have actually told me it is my fault my son is autistic as I was over 40 when I had him, without any evidence at all to support that. What do they expect me to do anyway, punish myself?

    So I would LOVE to see this play and loved the article.


    Love Anne C