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Not Sexy, Just Crazy

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Probably every single person who reads this will have made use of at least some of positive psychology’s tenets and recommendations at some point or another: visualize success, believe in yourself, take charge of your life, think good thoughts and good things will come. All fine to a point.

When it comes to discussions of health and illness, though, this makes me crazy. Not sexy, just plain crazy. Yes, there is much we can do to positively affect our health. No, we cannot cure illnesses with positive attitudes and wheat grass, not unless they are psychosomatic.

One of the purveyors of the idea that we can cure ourselves and defy illness is a woman named Kris Carr of Crazy, Sexy Cancer fame. This woman is a charlatan, and yet she has been trotted out by all kinds of experts as an example of a cancer patient who cured herself with her positive attitude and alternative therapies including a vegan diet. She started off with a documentary film about herself and followed that with three Crazy, Sexy Cancer books. She has become a New York Times bestseller, lectured at universities and medical schools, and, I presume, made a killing. She has a huge following as a cancer lifestyle guru.

On Carr’s website she calls her illness merely “a rare and incurable stage 4 cancer.” This sounds dire indeed and is the one and only credential that has given her the right to tell millions how to live. Yet, after the original film, we find in her work very little discussion of the cancer she has: epithelioid hemangio-endothelioma. Her focus is all on nutrition, yoga, support groups, and can-do attitude. However, H.E.A.R.D., a support group for this and other vascular cancers, notes on its webpage that, due to the variable rate of tumor growth in this cancer, “Some cases are totally asymptomatic (no adverse symptoms) for more than 15 or 20 years,” and “some cases … have been known to go into spontaneous remission.”

I don’t mean to say that receiving such a diagnosis would not be daunting and that it wasn’t a meaningful moment in Kris Carr’s life. I don’t object to her writing or making films about her experience. I have done so about my own illness experience, and I have read many truly wonderful and insightful memoirs about people’s illness and disability experiences. It is quite true that illness can be a wake-up call and can affect the life choices we make.

But for her to claim that she cured her own cancer, and for her to note that, “I created the ultimate blueprint for a healthy and happy life, and I want to share my secrets with fabulous you!” is a grotesque trickery. Her blueprint for life dumbs down illness experience and panders to the desperate masses over any kind of integrity and truth-telling. In the film, her own father tells her that he caused her cancer by putting stress on her during high school. Who can take this seriously? It is magical thinking, no matter that there are even physicians, supposed men and women of science, who participate in it.

The variable progression of Kris Carr’s disease has little if anything to do with whether or not someone takes up a macrobiotic diet and takes to meditating. It is simply a variation in the disease. If I can find this out with a few Google searches, why don’t the journalists and physicians who promote this woman bother? How can they not know that this woman is a sham? Or do they know and simply decide that her “positive” message is more important than what ails her or doesn’t? Why would that sort of misrepresentation seem worthwhile to them?

We have a strong social impetus these days to believe stories like this. It’s all part of a highly scripted “reality” TV that has nothing to do with real life and that casts us into a highly social Darwinian universe. Maybe it’s one thing when it has to do with the supposedly democratic selection of the next American Idol. Even when it’s the loonies in Landmark Forum convincing people to pay to be told that they create their own destiny, I can laugh and roll my eyes. The ideas that we live in a meritocracy and that talent rises magically to the top over the advantages of power and wealth seem to be part of the American fabric. I’m used to that.

But when they start talking about health that way, I get angry. Barbara Ehrenreich has noted about her own experience with breast cancer how she became disturbed by the constant celebration of survivors, as though they were somehow better people than the ones who died. David Rackoff, after a second type of cancer before age 50, published Half Empty with an anti-positive psychology twist, and noted, “It is the duty of society to take care of its individuals, plain and simple. We will never be healthier than our sickest member.” Years ago, in a wonderful book called Teratologies, Jackie Stacey noted how the discourse around cancer was designed to make people feel responsible for their own illnesses. As far back as 1978, Susan Sontag’s Illness as Metaphor noted how the discourses around cancer often harm patients further. So, I am not alone, but we are shouted down by the people who want us to believe that it’s all a matter of will power and positive thinking.

I have to keep repeating this to believe that it’s true: in the U.S., people believe that if you are sick it is your own damn fault. If you can’t cure your own cancer with yoga and spinach, then there’s something wrong with your character as a human being, not just your body. If you can’t cure your diabetes (my illness) with herbs and exercise, then you are weak. If you have cancer, you must have brought it on yourself. If you are obese, it is because you are lazy and worthless.

Part of this has to do with our desire to understand causation. Think of the biopic Erin Brokovich and how the title character set out to uncover the poisoning of a California community by Pacific Gas & Electric. The Chromium 6 they had allowed to leak into the ground water had caused rampant cancer. Think of Terry Tempest Williams’ Refuge that outlines the increased risks of cancer to those living in Utah when the A-bombs were tested. Even in terms of responsibility that has a personal (as opposed to corporate and governmental) element, think about cigarette smoking: the National Cancer Institute attributes 440,000 premature deaths a year to lung cancer and other diseases caused by smoking. There are indeed cases where blame can be cast legitimately, though in the case of individuals that may not be a helpful strategy.

One U.K. study I read, for instance, conducted on cardiac patients, showed that many of them blamed themselves for their illness, said they got what they deserved based on their bad smoking and eating habits. They even avoided medical care because of fear that doctors would be disgusted by or dismissive of them and would blame them further. Perhaps most telling, the study found that these attitudes were more common among the economically disadvantaged.

When Kris Carr suggests that you interview your doctor as you would someone you were hiring at your corporation, she breezes over the fact that many health care plans don’t allow such options. I’m all for patients being active participants in their own care, but those who don’t have top-of-the-line insurance and a ton of money in the bank can’t turn their cancer into a full-time “self-transformation” project.

Nor does her story point out that what has turned many cancers into survivable illnesses is not mainly the lifestyle stuff she promotes, but actual new or newly refined detection techniques, medical treatments, and drugs. In the hands of positivity health gurus, causation becomes a twisted story of personal overcoming.

Part of the reason we are so drawn to the overcomers among us may also be that illness has become more complicated, more long and drawn out, more chronic, the causes more complicated. With the advent of antibiotics and vaccines in the 1940s, and the development of effective vaccines in the 1950s and 60s, many long-term lethal scourges—TB, polio, mumps, measles, smallpox, chickenpox—were knocked so far back as to become almost irrelevant in most people’s lives. Nowadays the raging (yet identifiable) germ that comes out of nowhere is a rarity, and contemporary illnesses stem from vague and multiple sources. And they have more variable outcomes. The doctor has no simple cure, so the cure is put on the shoulders of the ill.

Chronically ill people also can be a long-term burden. I myself have been living with Type 1 diabetes for nearly 40 years. It’s understandable that people around me get tired of taking care of me. I get tired of taking care of myself. My illness won’t end until I’m dead, and that could be another 40 years down the road. Recently, in my different kind of medical experience—a brain hemorrhage that fortunately turned out to be benign—I had cause to think about the different kind of care I was getting. The attitude toward this acute illness was heroic and sympathetic—I got round the clock care, myriad expensive tests, a plethora of support from friends and family. But the chronic illness gets boring.

The cost of treating a major illness, whether acute or chronic, is enormous in our current medical system. (My own recent brain event cost well past $100,000, and I and my insurance providers have spent thousands on my diabetes, too.) People who are ill sometimes can’t work or otherwise contribute economically. Sometimes they can’t support themselves. As far back as 1951 (in The Social System), Talcott Parsons pointed out that because of the “privileges” of the sick role, ill people also have the “obligation” to try to get well as quickly as possible, even though Parsons notes they are not held responsible for their condition.

Also because of these privileges, there are many scam artists of an even greater severity than Kris Carr. Every now and then someone without any diagnosis whatsoever is discovered claiming (usually) cancer and putting on a show to borrow money from family and friends and collect donations in public places, including on the web. In an ironic twist, many of these, including Ashley Anne Kirilow, Ann Crall, and Dina Leone, have now been labeled as having mental illnesses rather than physical ones and are still considered in need of help.

And since the ill take so much from the healthy in the way of financial support, emotional succor, and attention, we want them to get better in miraculous ways. If we believe that people can visualize themselves healthy, then there’s a theoretical way for everyone to improve their lives. There is no limit on health—not based on wealth, not based on health insurance availability, not based on health insurers paying for needed treatments, not based on chance.

There are even many so-called political progressives who believe that we are individually in control of our health (and by association to blame if it goes bad), and I wonder how they can fail to see the radical-right implications of that. Oprah Winfrey, one of the biggest promulgators of positive psychology (and one of Kris Carr’s promoters) has also conceived of herself as a crusader for social justice. For Oprah, it seems to be all about “empowerment”—giving people tools for improving their lives. Yet, she doesn’t seem to see that taken to an extreme the implication is that if an individual can’t triumph over illness it’s a personal failure. In other words, it’s a blame-the-victim stance that doesn’t take into account the myriad circumstances that can contribute to failure. I have a great deal of respect for Oprah—anyone who could keep the country reading books for so long has my admiration—but this aspect of her storyline is a huge disappointment to me.

The crux of the fundamentally conservative layer of assumptions in positive psychology is the delusional belief that we humans can control our own fates, not just to some extent, but virtually completely. Perhaps in a world where more and more seems beyond our control, it’s understandable that some people need to feel as though we can determine at least our own bodily fates. And no doubt it’s good to do what we can do for ourselves—I exercise regularly and eat fresh foods, too. But to be a true “liberal,” even just to be a person who is not living in a dream world, we need to remember that, do what we can, illness will come. The body does not last forever. People do not always get what they deserve. It would behoove us not to condemn the truly ill and not to celebrate those who turn their triumph over illness into a claim of personal achievement.

I wish that instead, we could offer support and encouragement to ill people without offering snake oil. I wish that tales of overcoming could be tempered with honoring those who don’t overcome. I wish that the media in our culture would practice some responsibility and not promote shallow, pretty people who have turned illness not so much into insight, but into a business opportunity.

I would rather stand with the people who have died of cancer instead of remaining in spontaneous remission for seven years with no sign of a symptom anywhere. I stand with those vomiting into the basin from their chemo, who don’t look so great with their hair falling out in clumps from the brutal treatments that will extend their lives. I stand with the ones who make meaning out of their experiences and appreciate the good days they have even though they know that cancer is not a gift, that even if a person with cancer sometimes can be sexy, the disease itself never is.

11 responses »

  1. A most excellent piece. Keep it up, Lisa!

  2. I half agree with you and half disagree. 😉

    I’ve seen the film you describe. While I do think it begins with the positive psychology zaniness and obsession even—I think by the end of the film she does make some realizations that it can only go so far. She does seem to question some of the methods used at the crazy retreat she attends for instance.

    Yet by the end of the film I don’t feel like the intent is positive psychology in the usual crazy sense. She seems to come to a moment of peace where she makes the realization she cannot put her life on hold in hopes of “some day” getting well. She finds love and ends up getting married in what seems like a genuine celebration of life. Now, on one hand the way I’ve just described that it might sound like blissful delusion. On the other hand, as I’ve been a chronically ill patient of a disease that is not well understood by any means (I’d say cancer is better understood actually), it is so easy to allow yourself to put yourself on hold to ever live again. There are many Dysautonomia patients waiting for a cure and A) not actively seeking out a method to help themselves get better and B) putting their happiness on hold until they can get better. To put the latter point in better words—Kris Carr figures out the mentality that just because she has a deadly cancer doesn’t mean she is dead *yet*. Thus she doesn’t have to live like she’s dead.

    As for your statement:
    “When Kris Carr suggests that you interview your doctor as you would someone you were hiring at your corporation, she doesn’t acknowledge that many health care plans don’t allow such options. Patients who don’t have top-of-the-line insurance and a ton of money in the bank can’t turn their cancer into a full-time ‘self-transformation’ project.”

    While, yes, I have to agree most patients don’t have the luxury of great insurance (though I could have sworn she did point that out in the film)—there are small steps patients can take to be active in their wellness and treatment. I can’t tell you how many Dysautonomia patients I’ve met online who are—as I put it—waiting for a savior. They are passive in their care and treatment. They are expecting a magic pill and are unwilling to put in the effort to help themselves. I’ve also met a lot of patients who are willing to take whatever crap their doctor dishes out and never get a second opinion. I have to applaud Kris Carr for her active involvement in her own health and her “corporation” view about doctors. I often tell patients, “Your doctor is working for you; you are the customer. Ask for better care. Demand better service.” I can’t tell you how many times I myself experienced and have heard from others the same—not being able to get a hold of simple medical records and lab work results. Some doctors’ offices (particularly 5 years ago) had the mentality that a patient should not be allowed to see their records. It should be secret code kept between doctors. A lot patients I know who were going along with this B.S. finally demanded they be allowed to view their records and lab results, only to find their doctors had not been telling them everything—stuff they could have used towards a proper diagnosis and better treatment. There are also a lot of Dysautonomia patients who end up with doctors (myself included at different points in time) who are willing to let them stay sick and at the status quo because they are not willing to try something new or look outside the box. That makes me mad. Just because some researcher in Switzerland hasn’t written a paper figuring out the cause and the cure, doesn’t mean we shouldn’t actively participate in the process in the here and now. So many doctors are willing to wait until *someone else* comes along with a better answer. (After all “Pots” Postural Orthostatic Tachycardia Syndrome is a diagnosis of syndrome not a direct cause; why can’t doctors actively seek out causes in their patients? Why aren’t they willing to think outside the box?) So when Kris Carr wants patients to be scrupulous and not view their doctors as Jesus walking on water—Amen to that I say!

    That said, a lot of what Kris Carr does throughout her film is an act of obsession and she doesn’t always practice what she preaches. She’s not as scrupulous as she could be. And she substitutes doctors with flat out quackery. What I try to get patients to do is research biochemistry and educate themselves on factual medical data in order to be their own advocates. I really cannot stand the ones who don’t bother to do this but instead go to expensive places that give liquid grass enemas. That’s just flat out crazy without really looking into the science.

    What I can take away from Kris Carr is to allow myself to enjoy my life (or parts of it) even though I am chronically ill, which I think is a very important lesson. And the second thing—is that patients can in fact be active participants in their own care.

    • Gen,

      Thanks for your always-thoughtful comments. You’re probably right that many people need encouragement to be active participants in their own health care, and I am certainly glad to see that. In forty years of diabetes care, I too have experienced plenty of bad healthcare and have frequently questioned my physicians. I do and have done many of the things that Carr recommends doing, and I believe that many of them are psychologically beneficial for chronically ill people and people in general. No doubt many alternative therapies and less chemical-laden food is good for the body as well, but they are just not producers of simple cures.

      What I object to in Carr’s presentation of herself is that she claims to have cured an incurable cancer with self-help and alternative therapies. I just don’t believe it, and even if there are many who take short-term comfort in the idea that they can do the same thing themselves, I think they will end up disappointed. As my mother said to me on the phone today after reading my post, the ones who don’t triumph aren’t around to write books. My mom is in her seventies, and she’s had several friends by now who have undergone cancer diagnoses. I remember her telling me years ago that at a high school reunion, they noted that the only one who had opted for purely alternative therapies was the one who was dead.

      And a dear friend’s sister, who had no health insurance and opted for a shaman to treat her breast cancer, died a slow and painful and terrible death.

      Maybe Carr is at points a little more subtle than I give her credit for, and I apologize if I oversimplify. But, yeesh, watch the Oprah clip or just the trailer for her film. They are straight from la-la land.

      Anyway, I hope we get to keep up this useful sharing about health issues. You always have important observations. What struck me the most was your next-to-last sentence–that Kris Carr taught you to enjoy your life (or parts of it) even though you are chronically ill. Isn’t it amazing that we have to be taught that? It really makes me wonder about how chronic illness is dealt with in medical settings. It also reminds me of a short memoir by a physician that was posted to an email magazine I subscribe to called Pulse. It was a reminiscence of the guy’s early days as a doctor-in-training and how he’d looked over a woman’s chart before going to see her. He thought that because she had numerous chronic illnesses, she would be on her last legs. He envisioned a grumpy, pathetic, miserable woman but found a young, vibrant, and exciting person instead. It’s too bad that such assumptions get made. And I’m all for saying no to them.

      Just not to pretending that our vibrancy and spirit can cure our illnesses. The two co-exist, just like tears and joy. So thanks for helping me draw out that line of thought.

  3. A great, thoughtful post—longer than your average blog entry, but it gripped my mind as it scrolled all to the bottom. The research and the insights were keen.

    While I do think almost everyone in this High Fructose Corn Syrup Kingdom needs a radical reorientation in diet, so that they eat things that are actually, umm, food, the miraculous claims of some nutritionists needs to be called out. They need to be debunked or else proven, but our media has lost the Will to Truth a long time ago.

    When every major news outlet would quote the Bush administration without ever fact-checking the president’s claims, I am not sure we can have ANY expectations, really. The assumption (“argumentum ad temperantiam” is the name of the logical fallacy) is that the truth is somewhere in the middle. Be fair and balanced and the truth is right there. Right.

    But back to health: in an interview once, Chris Rock pointed out how when his father got a disease (before Rock became a star), his father died. When his mother became ill after he became a star, she lived. That health care is SO measured by social class indicates that we in this country do not really see it as a human right.

    The least we can do is not make a lioness out of someone who would have the sense to modify “cancer” with “sexy”—if for no other reason than literary decency.

    But let’s not settle for the least we can do.

  4. Update: I’m not going to take credit for this, but suddenly Kris Carr is being a little more public about her actual condition: Which is one of natural long-term remission. I’m glad she’s being more honest now that her guru position seems unassailable.

  5. Wow,

    you should really drop the hate, I am sure that would help a lot with whatever you are battling. I just can’t believe that you would ridicule someone like this… who gives you the right? “she claims to have cured an incurable cancer with self-help and alternative therapies” – I have never heard her say that, she is well aware that she has cancer still, but if she believes that her diet is keeping the cancer inactive, then let her be. She doesn’t force anyone to go after her. Oh you got me so mad because you throw such hate… Not healthy!!

    • Hi, zmayonee,

      I am not a hateful person. (In fact, I’m really rather nice, pleasant, fulfilled, and much beloved in my life.) I do get angry about certain issues in health care, including the idea that if you’re ill it’s your own fault. But what I am participating in here is not hate, but critique.

      If you want to believe what Kris Carr is selling, that’s fine with me. But I believe she is taking advantage of a lot of people with something that is not true and that I doubt she believes is true. Of course, we cannot see inside the motivations and hearts of other people, and so perhaps Carr really does believe what she says–that “her diet is keeping the cancer inactive.” (What, I might ask, is keeping it inactive in all those others who go into remission from that kind of cancer?) In that case, I believe she is fooling herself.

      What gives me the right is the same thing that gives her the right. I am a person with a long experience of chronic illness and much time spent thinking about it, trying different strategies to deal with both my physical and emotional health. While Kris Carr claims to have all the answers, though, I claim to be a continuing and life-long seeker who understands that there are no easy answers.

      Best of luck to you.

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  8. Glad someone finally called this lady out, her body language on oprah screams, “I am a phony”. She is a failed actress playing the part of “survivor”, IMO.

  9. I truly believe In her just like “Chris Wark” It’s the same with the same. If you don’t think so then sure go for your chemo you are killing your immune system. Plus If she was really faking It you think It would be more out In the open but It’s not.


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