[Paleopsych] NYT: In a Judgmental World, She Was Ashamed of Getting Sick

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The New York Times > Health > Mental Health & Behavior > Cases: In a
Judgmental World, She Was Ashamed of Getting Sick
http://www.nytimes.com/2005/04/12/health/psychology/12case.html
April 12, 2005


    By GRETCHEN COOK

    My mother died of emphysema a couple of years ago. I was there when
    she died and the image of her gasping for breath will not go away.

    But what clings to me even more is the grief I feel about what she
    felt about her death, which was shame.

    She had been a heavy smoker, and I believe she suffered as much from
    that knowledge as she did from her painful physical condition.

    I tried once to alleviate her torment by telling her that I sensed her
    shame, and wished she wouldn't pile it onto her other sufferings. She
    acknowledged what I said in some small way, and I can only hope that
    it helped her absolve herself.

    But I am my mother's daughter, and I know too well that shame is a
    lonely affliction that only self-forgiveness can cure. I do not think
    she ever had that kind of compassion for herself.

    One small comfort is that near the end my mother, ever the political
    activist, was able to rail against the tobacco companies that got her
    addicted.

    But when the symptoms of her illness first appeared, her shame sent
    her into such deep denial that she insisted her respiratory problems
    were from breathing in dust mites or from some childhood disease. That
    denial lasted years.

    I've always felt I have not grieved sufficiently for my mother,
    perhaps because I focused my sorrow on her shame rather than on my
    loss.

    Today we know that lung and heart diseases, diabetes, hepatitis C and
    organ damage from eating disorders and addictions can be prevented or
    controlled by changes in the way people live.

    You can quit smoking, exercise more, eat better, adopt rigorous
    medication regimes or enroll in 12-step programs. Does this mean that,
    in a world that seems increasingly obsessed with assigning blame,
    those who have these illnesses will be judged harshly by others - and
    by themselves?

    There are no hard statistics on how widespread such blaming is, but
    Dr. Aly Rifai, a psychiatrist at the National Institutes of Health,
    told me that about a third of his patients suffered a good deal of
    shame about their illnesses.

    Dr. Rifai believes that there is a link between the shame a patient
    feels and the course of an illness. People with H.I.V. or hepatitis C,
    he said, may fare worse if they are depressed when they begin
    treatment. Dr. Rifai has also found that shame leads to such deep
    denial that some patients initially refuse treatment and thus lose
    valuable time.

    My mother once said that she did not want to do her respiratory
    exercises because it would make her emphysema "too real."

    Sadder still, Dr. Rifai says, "There's a percentage of people who just
    don't want treatment and see their diseases as just punishment for the
    bad deeds they did in their lives."

    Public attitudes only fuel this self-condemnation. The way someone
    contracts a disease can influence how much other people sympathize.

    One study, for example, found that there was a widespread belief that
    people with drinking-related liver damage should not receive liver
    transplants.

    Last week, I had to admit that it mattered to me, too.

    When Peter Jennings announced last Tuesday that he had lung cancer, I
    immediately scanned the news stories to see if he had been a smoker.

    He had.

    This should not come as a surprise. Like my mother, Mr. Jennings was
    raised on the notion that smoking was harmless, even glamorous.

    My mother loved smoking like no one I have ever known. She once
    described to me the wonderful tingling sensation of her first drag on
    a cigarette and how she loved it just as much decades later.

    Smoking seemed to be her greatest pleasure, one of the few things she
    could control in her life.

    She was so addicted that, like many others, she even smoked for a
    while after her illness was diagnosed.

    Dr. Rifai said that at the National Institutes of Health, doctors did
    not always try to determine how patients with diseases like hepatitis
    C - which is spread through blood transfusions, intravenous drug use
    and sexual contact - became infected.

    Sometimes, he says, "there's no gainful purpose" in knowing.

    "It will just serve to make it worse and increase those thoughts that
    this is something they did to themselves and they should just succumb
    to the illness," Dr. Rifai said.

    Obviously, educating the public about how infection occurs is
    essential in preventing disease. And people need to know that smoking
    causes lung disease. Neither Dr. Rifai nor I would dispute this.

    But I have to admit that I wish my mother could have hung on to her
    dust mite theory to the end.