It's become common for patients and their loved ones to advertise the fact of their disease on clothing and bumper stickers. Some complain that this has turned into a corporate marketing opportunity, but many find it helpful and comforting to be able to identify and swap information with fellow sufferers.
Amy Mickelson, wife of golfer Phil Mickelson, has been battling breast cancer. Her condition has touched many golf fans. This woman was at a tournament in Fort Worth, Texas, in May.
Scott Halleran / Getty Images
The new Showtime series about cancer has an old-fashioned, euphemistic title: The Big C. It's gotten mixed reviews in part because critics find it implausible that the central character, played by Laura Linney, would not disclose her illness to friends and relatives.
"It doesn't seem believable in Cathy's case -- she just seems too smart and articulate to deliberately withhold something like this," Hank Stuever wrote in The Washington Post.
Today, it's expected that people suffering from a disease will make that fact known. Breast cancer, in particular, seems to be thoroughly destigmatized. Patients and loved ones wear pink ribbons, blog about their experiences and participate in races and walks to raise money for research.
Not every disease has become a cause. But it has become common for people to promote awareness of their illnesses and conditions by sporting bumper stickers and wearing T-shirts, wristbands and tattoos, whether they're concerned with Alzheimer's, autism, pregnancy loss or other subjects.
These various emblems are only the most visible symbols of a whole culture of patient information that today gets shared through websites and support groups. "It's a way of making it visible," says Susan E. Bell, a medical sociologist at Bowdoin College, "giving people some way of trying to destigmatize their conditions and to signal and make connections with people who might have or know someone with similar conditions."
No Longer A Dirty Word
This was not always the case. Before women such as first lady Betty Ford and NBC News correspondent Betty Rollin went public about their bouts with breast cancer during the 1970s, cancer was rarely discussed or "shared."
"Cancer used to be a dirty word," says Linda Layne, an anthropologist at Rensselaer Polytechnic Institute. In decades past, doctors "didn't even tell patients about it sometimes. It was withheld."
Several trends converged to make public sharing of patient information common, including the women's health movement, the rise of information technology and a shift in the medical culture itself away from a purely hierarchical system in which doctors were always assumed to know best. Patients, armed perhaps only with what they've read on the Web, now can be counted on to ask questions about virtually any condition.
"There's a sensibility in our culture that you have to meet a diagnosis with a whole set of questions that we didn't used to think we had permission to ask," says Victoria Pitts-Taylor, director of the Center for the Study of Women and Society at the City University of New York.
The Influence Of AIDS
A lot of illness-awareness promotion, though, stems from the way AIDS patients responded to the rise of that disease. AIDS activists were determined to see the syndrome receive attention and research dollars. It became synonymous for a time with red ribbons and the slogan "Silence = Death."
That approach, Layne suggests, may have something to do with the fact that the AIDS epidemic came hard on the heels of the gay-rights movement of the 1970s, which was largely about gay people proclaiming that their identity was neither shameful nor something to keep hidden.
The tropes developed with AIDS -- clothing accessories such as ribbons, displays of commemorative quilts, marches on Washington -- have all since been adopted by groups concerned with other conditions.
"Think Before You Pink"
Not everyone is enamored with this model for open display of disease awareness. Many patients resist identifying publicly with their diseases because they do not wish to be defined by them.
In her 2009 book Bright-Sided, Barbara Ehrenreich complained about the "pink sticky sentimentality" of pink ribbons and breast cancer teddy bears. Confronting the disease herself, she felt isolated by the "universally upbeat tone" of her fellow sufferers who she thought had been distracted from more important matters such as pain and treatment options.
Studies by business professors at Duke and Michigan have found that "cause-related marketing" often profits the companies who participate in disease awareness campaigns as much or more than the charities they are supporting.
"It's now very much transformed into a corporate venture and a merchandising opportunity," says Angela Wall, spokeswoman for Breast Cancer Action, an advocacy group based in San Francisco. "People are buying stuff that's pink, thinking it's going to a good cause, but because there's no copyright on the pink ribbon it can be slapped onto any product."
Breast Cancer Action, with its "Think Before You Pink" campaigns, calls out companies it argues are supporting charities even as their products are contributing to incidence of the disease. Such efforts, Wall suggests, represent hypocritical and misleading attempts by such companies to clean up their image.
"Enough awareness. More action," she says.
Ameliorating Real Pain
The whole panoply of patient awareness efforts -- the T-shirts and the fundraisers and the homemade videos posted on the Internet -- are now a hybridized blur between grass-roots efforts led by patients and promotional efforts instigated by industry groups and, sometimes, researchers themselves.
That doesn't mean patients won't find them helpful. Patients and caregivers often come to recognize each other as their own best sources of information about disease and treatment, says Pitts-Taylor, the CUNY sociologist.
"People who have an illness, or are caring for somebody, are creating these communities, what we used to call a subculture," she says. "They have an awful lot in common. Not just the biological fact of illness, but also the social experience of what that means and how it translates into everyday life."
Making plain the very fact of disease is a way of saying, "I'm not ashamed, I'm proud," says Layne, the anthropologist at Rensselaer. That represents a huge change in attitude and approach from a generation ago, she says, when people who had cancer or women who suffered miscarriages might "feel like freaks, like the only people on Earth this happened to."
"There's no way that losing a baby isn't going to be horrible," Layne continues. "It's at least better that you don't have to be ashamed of it. That's one aspect to the horribleness of the experience that's really been ameliorated."