Today, little more than a dozen years after the artist and model Matuschka exposed her mastectomy scar on the cover of the New York Times Magazine, pink ribbons have become ubiquitous.
There are Pink Ribbon parades, races, and golf tournaments. There are Pink Ribbon Tic Tacs and Pink Ribbon Shower Gel. It’s easy to forget that breast cancer was once mentioned only in a whisper.
In fact, just a generation ago, almost all women’s health issues—but particularly those involving the breasts and reproductive organs—were forbidden topics for conversation.
“Breast cancer, menstruation, menopause—even breastfeeding in public—were taboo,” recalls Nancy Raymond, MD, director of the University of Minnesota’s Deborah E. Powell Center for Women’s Health. As a result, many women felt confused and isolated when they developed health problems.
The women’s health movement that began in the late 1960s and early 1970s changed all that. “There’s much more emphasis now on empowering people to control their own health,” says Lynne Shuster, MD, director of the Women’s Health Clinic at the Mayo Clinic in Rochester
Many women now talk openly—at least with family and friends—about heavy menstrual periods or annoying hot flashes or how best to prepare for a colonoscopy. And today, when a woman undergoes treatment for breast cancer, her friends are likely not only to talk to her about it, but also to provide her and her family with emotional support and plenty of hotdishes.
Yet some health topics remain off-limits, or at least uncomfortable, for women to discuss with their friends or physicians. No hotdish brigades, for example, are started for women who go into a medical institution to be treated for substance abuse or mental illness. Nor do women tend to discuss with their book group buddies their inability to have an orgasm or to control a leaky bladder.
Some of these latent health taboos have to do with society’s denial of aging. “It’s socially unacceptable to admit that you’re older,” says Raymond. Two unmentionable topics, sexual dysfunction and incontinence, she points out, are associated with getting old. But, truth be told, mental illness, substance abuse, sexual problems, and even incontinence affect young women as well as older ones.
If women talked more openly about these issues, they would know that. They would also learn that medical help is available. Ongoing research has led to new and more effective strategies for treating all of these conditions.
Women don’t need to whisper anymore.
Taboo Topic No. 1: Mental Illness
When Beth, a 43-year-old former laboratory scientist, was hospitalized for bipolar disorder in 2000, she told only a handful of friends. She feared people would respond as her sister had, with a brisk, “Why don’t you just snap out of it?”
Three years later, when she was hospitalized a second time, Beth expanded the number of people she told, with mixed results. “I found I have many fair-weather friends, people who talk to me only when I’m stable,” she says. “They’re just too overwhelmed to be around me when I’m depressed.”
Misconceptions and Stigma
Although mental illness is no longer considered a sign of the devil (as it was in America’s Colonial days), it continues to carry a mark of shame. In the media, people with mental illness are usually portrayed as unstable and dangerous—yet research has shown that less than a fraction of violent episodes in the United States were committed by someone with mental illness and, in most of those cases, the perpetrator also had a substance-abuse problem.
Other popular (and equally inaccurate) media stereotypes of the mentally ill include the “rebellious free spirit,” the “violent seductress,” the “narcissistic parasite,” the “mad scientist,” the “sly manipulator,” and the “helpless and depressed female.”
No wonder people who cite television as their main source of information have the least tolerant attitudes toward people with mental illness. And no wonder women with mental illness are reluctant to discuss their condition.
The stigma surrounding mental illness discourages women from seeking treatment. Although women are often better at reaching out for help than men, as many as two-thirds of those with depressive disorders, for example, do not get the treatment they need.
The good news is that in recent years the public has gained more knowledge about depression, which affects about 12 million women in the United States annually. Many women are now quite candid about their struggles with depression, Raymond says.
Postpartum depression, a type of major depression that occurs in about 1 in 10 new mothers, has attracted significant attention from the media. In the past few years, actresses Brooke Shields and Courteney Cox, model Elle Macpherson, and singer Marie Osmond have all gone public with dramatic tales of overcoming this illness.
But the public remains less understanding and accepting of mental illnesses that involve psychosis, such as schizophrenia. In fact, studies have shown that attitudes toward these illnesses have actually worsened in recent years.
“There’s still a lot of stigma against people with psychotic illness who experience hallucinations and disturbances of perception of reality,” says Raymond. Women with such illnesses feel the social rejection acutely, and they express an overwhelming sense of loneliness and isolation.
“When I told one woman about my illness, her mouth dropped open and she didn’t talk to me again for months,” Beth recalls. Many people, including physicians, don’t know how to act around those with mental illnesses, she says, which is why she now works as a volunteer with a mental-health advocacy group, educating policymakers, physicians, and others about mental health issues.
Raymond suggests that women who are uncomfortable talking with their doctor about depression—or any health issue—bring a newspaper or magazine clipping about the topic to their next office visit.
“Use the article as an icebreaker,” she says. “Mention that you have similar concerns.”
Above all, adds Beth, make sure your doctor takes you seriously. If not, find one who will.
“I was sick and tired of the stigma attached to my illness,” Beth says, “and of not being taken seriously by the community and by my doctors.” Attitudes are changing, albeit slowly, she says. “I still get some cold stares when I bring up the topic,” she says, “but in general people are becoming much more open about it.”
Taboo Topic No. 2: Sexual Problems
Last year, a new—and pink-covered—edition of the feminist health classic Our Bodies, Ourselves was published. The public’s reaction was ho-hum—not anything like the excitement that greeted the first edition of the book in 1970.
But back then—when Mary Richards never appeared in bed with a boyfriend and long before Sex and the City became a gleam in some producer’s eye—female sexuality was a highly taboo topic.
That meant talking about sexual problems was also off-limits.
Our Bodies, Ourselves (and other sexually explicit feminist books of the early ’70s, such as Erica Jong’s Fear of Flying) transformed many women’s sex lives. Barb, now a 62-year-old Twin Cities dental hygienist, recalls, “I had been married several years, but I wasn’t having orgasms, or only infrequently. I would just fake it.” Then she picked up a copy of Our Bodies, Ourselves and learned—for the first time—precisely how female orgasms occur.
“For me, the problem was lack of knowledge,” she says. She had never thought to talk with her mother or any of her four sisters (“too embarrassing”) or with her doctor. “I didn’t think of it as sexual dysfunction,” she says.
Sex in the Media
Today, sex is no longer a taboo topic. Turn on the television, particularly in prime time, and you’re likely to hear some kind of sexual reference. According to a 2005 Kaiser Family Foundation report, 7 of 10 television shows (excluding news, live sports, and children’s programming) include sexual content, with an average of five sexual scenes per hour. That’s nearly double the sexual content on TV since 1998.
But talking about sex and talking about your own sex life are two different things. Many women are still uncomfortable doing the latter, partly because, ironically, of how sex is portrayed in the media.
“In movies, on television, people talk about how great sex is,” says Beatrice “Bean” Robinson, PhD, a licensed psychologist and associate director of the University of Minnesota’s Program in Human Sexuality. “You don’t really get a sense that it can be a struggle. So people with problems think they’re the only one. They don’t know that there are other women who struggle with the same things.”
A Controversial Study
And women do struggle—usually silently—with sexual difficulties. In a much-cited 1999 study published in the Journal of the American Medical Association, 43 percent of women (compared to 31 percent of men) ages 18 to 59 reported that they had experienced some sort of sexual problem—mostly low desire, difficulty with arousal, or pain during intercourse—during the previous year. Interestingly, problems were most common among younger women.
“Low desire is an epidemic right now,” says Robinson. “Everyone is trying to figure out why that is. Some of it is we’re just too damn busy, and we don’t get enough sleep. Sex is like dancing, you need to be relaxed and have time for it.”
The 1999 study has its critics. Some researchers say the study was flawed because it didn’t ask women if they were distressed by the symptoms they reported. Others denounce sexual dysfunction studies in general, calling the term highly misleading because it implies the existence of a medical condition—and thus the need for medical (drug) solutions. Low libido, these critics point out, can be a natural and healthy response for women who are stressed, tired, or in a troubled relationship.
For women struggling with a sexual problem, however, it doesn’t matter how many other women are affected or what it’s called. They just want help. Asking for that help can be very difficult. Robinson recalls one woman in her forties who was too embarrassed to answer “yes” when her ob-gyn asked at her annual checkup if she had any sexual concerns. The woman didn’t want to talk about her sex life in front of a young resident doctor who was shadowing her ob-gyn that day.
“The woman waited until the next year, when she was scheduled for another Pap test,” Robinson says. Only then, when the doctor asked the woman the same question without anyone else in the room, did she open up about her worries and concerns.
A wide variety of physical and psychological factors cause or contribute to sexual dysfunction in women, including diseases such as diabetes that reduce genital sensitivity; medications that diminish libido; lack of vaginal lubrication, particularly after menopause; yeast and other infections that can make intercourse painful; and depression.
Treatments are as varied as the causes. They range from learning new sexual techniques to medications to surgery. “You just have to find doctors who know something about proper diagnosis and treatment,” says Robinson.
And you have to be willing to talk. Barb makes a point of being available to her grown daughter for frank discussions about sex. “My mother and I never had those kinds of talks,” she says. “I wish we had.”
Taboo Topic No. 3: Substance Abuse
Betty Triliegi, a Minnesota real-estate agent, has always talked openly about her past. “I was a drug addict and an alcoholic,” she says. “I’ve never been in the closet about it.”
There was a time toward the end of her 12 years of addiction (to barbiturates, mostly), when she was much more circumspect. “At the end, you’re pretty much alone,” she says. “You don’t even hang with a bunch of other addicts, because you’re protecting your supply. You get pretty isolated. You’re hiding. You’re ashamed.”
Sober since the day in 1970 when her mother forced her into treatment, Triliegi worked for many years as a chemical-dependancy counselor and remains an outspoken advocate for better services and treatments for addicts. She’s discouraged about the public’s current attitude toward substance abuse—an attitude that she thinks is sweeping the problem back under the rug.
Gendered Double Standard
“Everybody wants it to go away,” she says. “Nobody wants to think about it.”
People particularly don’t want to think about the women in their lives—their mothers, wives, grandmothers, sisters, best friends, or themselves—as struggling with an addiction. “There still is a stigma against women having a drug or alcohol problem,” says Sheila Specker, MD, medical director of the Substance Use Disorder Treatment Programs at the University of Minnesota. Women who drink excessively tend to be viewed as promiscuous, for example, while men aren’t. (It’s a fact, though, that drinking does increase a woman’s risk of being sexually abused.)
This double standard (which goes all the way back to first-century Rome, when drinking by women was considered a crime) wreaks havoc on marriages. Men are much more likely than women to walk out on an alcoholic spouse.
Denial can’t erase the fact that substance abuse is one of the most serious—if neglected—women’s health issues in the United States today. According to the U.S. Department of Health and Human Services, about 6 percent of American women have a drinking or drug problem. Although that’s half the rate for men, the gender gap is narrowing and has actually closed with teenagers. A 2004 government survey found a statistical dead heat in substance abuse between teenage girls (9 percent) and teenage boys (8.7 percent).
The risk of developing an alcohol or drug problem diminishes for women after age 25, but it doesn’t go away. Women are at greater risk than men of developing alcoholism late in life. About half of all cases of alcohol abuse among women begin after age 59, compared with one-quarter of cases in men. In addition, older women are almost twice as likely as men to become addicted to prescription drugs.
Studies have also shown that women of all ages tend to become addicted to alcohol and drugs more quickly than men—a process called “telescoping.” This means that women also tend to develop related health problems faster—and with more devastating results. More alcoholic women die from cirrhosis of the liver than do alcoholic men.
Shame and Hiding
Because of the shame associated with substance abuse, women often try to hide their addiction from families and friends, and they can be very clever at it, filling an empty vegetable-oil bottle with alcohol or stashing a prescription pill bottle in a roll of toilet paper stored on a basement shelf. Women, Specker adds, are also usually more successful than men at “doctor shopping”—going from doctor to doctor to get multiple prescriptions for the drug they abuse.
“Before I went into treatment, I was seeing 11 different doctors,” says Triliegi.
Unfortunately, women are less likely than men to get help for addiction. Shame, embarrassment, and denial are all factors. So is fear—the fear that seeking treatment may cost them their marriage or, worse, their children. And they worry about the financial impact treatment could have on their families.
But the personal cost of not getting help is huge. Fortunately, Minnesota offers addicts many treatment choices.
“Here in Minnesota we humorously say we’re the land of 10,000 treatment centers,” says Specker. Many programs focus specifically on women, with an emphasis on group therapy. “Having low self-esteem, not being assertive, and not having coping skills—these are all things that, for some women, are easier to deal with when they’re in a group of other women,” Specker says.
Taboo Topic No. 4: Urinary Incontinence
It’s been almost 20 years since Ann Landers first wrote about urinary incontinence (UI) in her syndicated newspaper advice column, thus breaking a long silence in the major media. That same year (1987), Time published an article about incontinence titled “The Last of the Closet Issues.”
Although it’s no longer an unmentionable topic (after all, “protective pads” have since been peddled on TV by none other than America’s former sweetheart, Debbie Reynolds), UI is still essentially ignored by the media—except perhaps as a joking reference to getting old.
As bioethicist Arthur L. Caplan has noted: “It is hard to imagine J. Lo or Jennifer Aniston leading a march on Washington to demand more research on urinary incontinence.”
Yet UI (officially defined as “the complaint of any involuntary leakage of urine”) is a very common—and often debilitating—condition among women, including young women. Just how common is a matter of debate. Estimates of the percentage of American women with UI range from 2 percent to 50 percent, depending on how UI is defined. A recent government report estimated that 75 percent of women have some urinary leakage, and as many as 10 percent may have a severe problem.
No one knows the precise numbers, partly because women don’t like to talk about incontinence, even with their doctors. “People feel very embarrassed about it,” explains Jean Wyman, PhD, clinic director of the Minnesota Continence Associates at the University of Minnesota’s School of Nursing. “There’s definitely a stigma attached to it.”
It’s not only embarrassment that keeps women from bringing up the topic with their physicians. Many women tend to think (mistakenly) that the only treatment for UI is surgery. Or they believe (again, wrongly) that incontinence is an inevitable part of growing older.
And so they suffer. Unnecessarily, says Wyman.
Incontinence can be so severe that a woman becomes reluctant to leave home, fearing that she will have an “accident,” or that, if she wears an adult “diaper,” she will smell of urine.
“Many women won’t even tell their husbands,” says Wyman. “They may avoid sex, because sex can trigger leakage.”
Causes and Kinds
UI has many causes. Often, the cause is temporary, the result of taking a medication that interferes with bladder control, for example, or drinking too much caffeine (which acts as a diuretic).
Persistent UI, in contrast, usually involves an underlying physical condition—weakened pelvic muscles, nerve problems, or an obstruction in the urinary tract—and doesn’t have a quick fix.
Childbirth, particularly vaginal delivery, has long been considered a major risk factor for UI because of the damage it can do to the pelvic floor, the network of muscles, ligaments, nerves, and tissues that support the uterus, bladder, and rectum.
UI has also been blamed on the hormonal changes associated with menopause. But that idea was debunked last year when a major study found that postmenopausal hormone therapy (estrogen with or without progesterone) actually increases a woman’s risk of becoming incontinent.
Being overweight is a major risk factor for UI, and so, surprisingly, is being depressed—although whether the depression or the UI comes first is not quite clear.
Wyman recalls a woman who became extremely distressed when she became incontinent after the birth of her first child. “I’ll never forget her because of her anger,” she says. “She was furious with her doctors, furious that no one had told her that this could happen to her.”
That woman eventually had corrective surgery, but there are other treatment options, says Wyman, including behavior therapies, bladder training, pelvic floor muscle training, and a variety of new medications.
Karen Dunlap, RN, who works on the faculty of the University of Minnesota’s School of Nursing, was able to cure her incontinence without surgery. In 1998, at age 34, she had a hysterectomy to remove several precancerous tumors. Her recovery went well—until she returned to aerobics class. “That’s when I began leaking,” she says.
Dunlap was devastated. The hysterectomy had been traumatic enough. Now she was incontinent. “I felt my life was over,” she recalls. She returned to her surgeon, who referred her to a nurse practitioner who specialized in incontinence in women. The nurse taught Dunlap how to work on tightening muscles deep within her pelvis. “After just three or four visits over the course of four weeks, the problem was completely gone,” Dunlap says.
As Dunlap’s story shows, women shouldn’t be afraid to seek help. Often, the first step toward a remedy is a visit to a continence nurse specialist, a urogynecologist, or a urologist who specializes in the treatment of women.
“You don’t have to suffer,” Wyman says. “There is help out there.”
Susan Perry is a health and science writer whose latest book is Taking Charge of High Blood Pressure: Start-Today Strategies for Combatting the Silent Killer (Reader’s Digest).