|Paula Kamen, a Chicago journalist, is the author of All In My Head: An Epic Quest To Cure An Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache.|
Paula Kamen's Blog IntroductionWomen, Media, AND... Women's Health and Sexuality
I'll be interested in covering all kinds of issues about women's health and sexuality through my reign as blogger here. But for now, let's show what fun lies ahead her by talking about pain. And fatigue.
Here are some questions I want to start to answer here and in the months COMING SOON about these problems, and wider health issues:
How is chronic pain (and fatigue) a "women's issue" -- or even a "feminist issue?" How does gender bias, and other bias rooted in sensationalism, help skew media coverage of these issues? What are the common prefabricated health narratives that get in the way of clear science reporting? And how do these issues represent how media coverage of health issues obscures our understanding of these problems?
The answer to the first question is not immediately obvious. In fact, I didn't even start to think about it until I was well into studying this specific topic for my recent book All in My Head, [www.paulakamen.com] -- although I've written on feminist issues for a long time (since the '80s, which officially qualifies as a "long time"). These problems certainly affect men also -and gender is not an absolute determining factor that one will be struck by pain and/or fatigue (which often come together). But women have special challenges in being more neurologically vulnerable to chronic pain and fatigue, in getting adequate medical treatment, and in being taken seriously by the greater society for a disability that is often not seen as a "real" disability.
Some of this gender focus of mine is based in solid statistics about these problems, which have only emerged widely in medical journals in the past decade. Women are more likely to report fatigue, multiple pain sites (pain on many parts of the body at once), intense pain, and frequent pain. Plus, women account for the majority of patients experiencing pain and fatigue disorders, including migraine, TMJ (jaw pain), Irritable Bowel Syndrome, rheumatoid arthritis, osteoarthritis and fibromyalgia. Like others from less "powerful" groups (such as the young, the elderly and minorities), they also face discrimination in medical treatment. Studies from the past decade show that doctors are less likely to take their pain seriously, and are more likely to prescribe women patients tranquilizers rather than painkillers than they are to men.
I think it's important to start framing chronic pain and fatigue as a women's issue for plain political reasons: to encourage more social support, organizing and awareness. The women's health movement, a separate branch of the women's movement that emerged in the 1970s, did wonders for the field of obstetrics and gynecology, such as in transforming a woman's options with childbirth. But we still have a LONG way to go to affect the field neurology, which has been dominated by men and treats problems that are more "invisible" (thus prone to metaphor) in nature to tackle.
One way to start building this awareness is to challenge misleading media portrayals of patients and the roots of these illnesses -- which compound patients' already existing guilt, shame and isolation. Much of the distortion lies in the media need to always create drama and hype, even when none exists.
Here are three examples of these chronic distortions: (I know they don't relate specific to gender bias, but they reflect how women's illnesses, along with all illnesses, are portrayed.)
THE MEDIA AND HEALTH ISSUES: TYPICAL PATHOLOGIES
#1: The virgin/whore syndrome.
This is the world's oldest medical media cliché - which well applies to how new pharmaceuticals are covered (as well as to how Us Magazine portrays Lindsay Lohan or the latest post-pubescent movie starlet). When a drug first comes out, reporters commonly first characterize it as purely good - the totally safe cure-all we've all been waiting for. They often report what the pharmaceutical companies tell them in press releases, almost verbatim, not seeking any outside sources and not looking closely at studies (a problem which, needless to say, is endemic in health coverage). This promise is easy to deliver, and appealing to viewers. So a newscaster introducing a story a new drug is likely to say, "A promising new cure for headaches!" instead of the more realistic message: "Studies done show that this drug will help 5-20 percent of headache patients, but typically causes severe side effects of baldness, obesity and loss of short-term memory."
Then, a few years later, when the drug's natural side effects become more widely apparent, mainly as the result of lawsuits, the coverage totally switches gears to demonize it. The less dramatic reality that gets overlooked, time and time again, is that most drugs have side effects and can help some people, but not all. Most drugs are NOT miracle drugs, and neither are they usually dangerous and useless to all.
Examples of this virgin/whore cycle abound. One of the most glaring is of the rise and fall of Celebrex and Vioxx, known as Cox-2 inhibitors, used for pain relief. A typical example, during the enthusiastic and unquestioning period of the introduction of these drugs, was a 1999 cover story "Conquering Pain" in Businessweek (March 1), which enthusiastically touts these drugs as the ultimate painkillers. Then, several years later, media coverage everywhere turned totally against these drugs, without much discussion of the people they have helped and their positive uses, when lawsuits about their potential harm widely emerged and the FDA limited their use. That included -- among countless other publications -- Businessweek, in several articles related to stock prices, such as one from last January. Another article, from December 13, 2004, quoted a FDA source calling the Vioxx recall "the single greatest drug-safety catastrophe in the history of this country."
I expect this virgin/whore trend only to continue. A 2002 article "Preventing Headaches" in Time (October 7) gleefully heralded the release of the anti-epileptic drug Topamax (topirimate) as a migraine preventive. It did not bother to say that it has the risk of significant mental impairment and, as of that writing, had not yet been approved by the FDA for that purpose. Now that the media has widely touted the virgin side of this highly promoted multi-billion dollar blockbuster drug, I'm waiting for the painted-lady side to emerge with the first lawsuits and public controversies.
#2: It's all ultimately mind over matter. If the newest "miracle drug" isn't the answer, the media then turns to the patient to cure herself or himself through sheer willpower and hard work. It's all just mind over matter - nothing more. Not only does the Protestant work ethic apply to your financial well being and career trajectory, it also determines if you'll be healthy or sick. Some of the intentions, and uses, of this message are good: to give people hope (as well as a reason to tune in to that broadcast on the mind/body connection coming up after the commercial). But while positive thinking often helps patients and avoiding stress is a positive influence, the great majority of chronic-illness cases, which are not curable, then get ignored.
And the diseases that can be cured, such as some forms of cancer, often are also oversimplified as all the same -with the great range of cases being glossed over. The most obvious example is with the widespread simplistic coverage of Lance Armstrong's overcoming an advanced case of testicular cancer. Before I read his book, I had feared that he was going to give simplistic answers, that it's "all a matter of willpower" to cure cancer for all patients. That would reflect how the media portrays him, such as in his commercials for Subaru in which he stares right into the camera and defiantly states: "It's all about what's inside." But, to my surprise, in his 2000 memoir, It's Not About the Bike, Armstrong does give a layered and realistic view of illness, which was lost in wider media reports about his case:
For most of my life I had operated under a simple schematic of winning and losing, but cancer was teaching me a tolerance for ambiguities. I was coming to understand that disease doesn't discriminate or listen to the odds - it will decimate a strong person with a wonderful attitude, while it somehow miraculously spares the weaker person who is resigned to failure. I had always assumed that if I won bike races, it made me a stronger, and more worthy person. Not so.
Why me? Why anybody? I was no more or less valuable than the man sitting next to me in the chemo center. It was not a question of worthiness." (95)
#3: Oversimplified "science" reporting
Related to this lack of discussion of biological limits, which can be a buzzkill for readers, is a greater lack of scientific clarity. For example, the media typically confuses triggers of the illness with a cause. The result is blaming the victim for causing his or her illness through poor self control. Again, invisible diseases, such as chronic pain and fatigue (that mainly hit women), are often the most subject to such treatment. The media commonly makes them into metaphors, such as for an angry personality. You can just skim the headlines of major stories about chronic headaches to get the drift. A widely syndicated story in the July 14, 2003 LA Times explained why "That Raging Headache May be Anger Based." It reported research from St. Louis University that headache sufferers are more likely to hold in anger. That may be true, but the article did not explain that this anger is a trigger, not a root cause, and that the root of such headaches is primarily genetic, or based in neurology.
Likewise, an article in the February 2004 issue of Redbook informed "Why You've Got That Headache," listing "six surprising causes," which range from holding in anger to changing sleeping patterns on the weekends. While the article itself refers to these provocations as "triggers," it does not talk about a genetic predisposition to having them in the first place, the underlying cause. While helpful, such as in encouraging good anger and stress management, reports such as these also compound guilt that headache sufferers are essentially bringing it on themselves and are failing to correctly manage their emotions.
These conflicts with the media & health issues will only become more prominent in the future, as more women feel entitled and emboldened to "come out" with their health stories -- as interview subjects and authors their own articles and books (in the genre I call "sick lit"). I'm part of a new generation raised with less "shame" about a variety of topics, and these women will not make illness an exception for silence.
In the meantime, we need to build awareness of chronic media problems, to avoid a backlash against these emerging messengers. This means insisting on higher standards of science reporting, with facts emphasized over metaphor or prefabricated narratives (mind over matter, etc.). This will involve an investment of time (and money) for journalists to learn more in depth about health issues they cover. They also have the challenge of reporting about what is happening at the highest levels of medicine while clarifying and educating -- and not oversimplifying and misleading -- for the sake of short-term drama and sensation.
Paula Kamen's Biography
Paula Kamen, a Chicago journalist, is the author of All In My Head: An Epic Quest To Cure An Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache. The book, released by Da Capo in March 2005, is a memoir and journalistic report about chronic pain in America, especially how it affects women. Her commentaries and book reviews have appeared in The New York Times, Washington Post, Salon, Ms., Chicago Tribune, In These Times, and more than a dozen anthologies.
She is also the author of Her Way: Young Women Remake The Sexual Revolution, (NYU Press, 2000, Broadway Books, 2002), which was noted as the first comprehensive "big picture" journalistic report of Generation X women's changing and enhanced sexual attitudes and choices. In 2002, the book was also released in Japan by Kodansha. Her first book was Feminist Fatale: Voices From The 'Twentysomething' Generation Explore The Future Of The 'Women's Movement, (Donald I. Fine, 1991), recognized as the first post-boomer feminist book.
In theater work, she has had three plays produced. This includes Jane: Abortion and the Underground -- about the legendary pre-Roe feminist abortion service, which is just beginning to be produced throughout the country on college campuses. The play was excerpted in several anthologies, Including The Best Women’s Monologues '99 and The Best Stage Scenes '99 (Smith & Kraus, 2001).
Kamen is a 1989 graduate in journalism from the University of Illinois. Since 1994, she has held the position of "Visiting Research Scholar" with Northwestern University's Gender Studies Program. In the past decade, she has spoken at more than 70 universities, including the University of Texas-Austin, Virginia Tech, Bates College, Trinity College, Colgate University, and Williams College. She was born in Chicago and grew up in south-suburban Flossmoor, Illinois.