SAN FRANCISCO (WOMENSENEWS)–Cynthia Toussaint was at the start of a promising ballet and acting career when, at age 21, a simple hamstring injury changed her life forever.
The small injury cascaded into a life-threatening disease and a decade-long struggle to convince one doctor after another that she was in terrible pain.
“Every moment was torture,” Toussaint recalls. “I knew there was something very, very wrong.”
After the initial injury, searing pain in her right leg soon spread to her other leg, then to the rest of her body. Over the years that followed, she was reduced to unemployment and spending much of her time in the fetal position unable to think because of the pain. She fell into a deep depression.
“I felt like I hated everyone and every thing for 10 years,” she said. “When you’re in pain, everything turns so dark.”
She said doctors her that the pain was “all in her head.” They told her to take aspirin. They thought she was making it all up, or that she had stage fright. One doctor described her condition as “tendonitis from Mars.”
When she asked another doctor what to do for the pain, he told her to shoot herself in the head, she says.
Amplifying Pain Receptors
After long years, Toussaint received a proper diagnosis. A Southern California physician who specializes in pain treatment told her she has Reflex Sympathetic Dystrophy Syndrome, RSD, a debilitating chronic condition where pain receptors fail to shut off after an injury or illness and instead amplify.
Now, though she still suffers from pain and is in a wheelchair, Toussaint is raising awareness about gender bias in pain management, through her lobbying efforts and Web site, womeninpain.org.
It’s a small but growing movement, which includes other pain sufferers, such as Susan Matsuko Shinagawa, a cancer survivor who is co-chair of the Asian Pacific Islander National Cancer Survivors Network. Jane Goodall, the noted primatologist, serves on her advisory council and California State Sen. Liz Figueroa serves on her board of governors.
Pain in both men and women is under-treated. More than 75 million Americans suffer from chronic pain caused by disease, disorder or accident, according to the Chicago-based American Medical Association. About two-thirds of these have lived with chronic pain for at least five years. A 1999 study by the American Pain Society, in Glenview, Ill., found that more than 4 out of 10 people suffering moderate to severe pain were unable to find adequate pain relief.
Recent studies suggest that women receive even less adequate treatment for pain than men. And researchers are just beginning to explore the roots of gender bias in pain treatment and how physiological, cultural and psychological factors converge in pain response and treatment for women.
Women in Pain Viewed Anxious
A 1990 study by Karen L. Calderone of the University of Rhode Island on postoperative coronary artery bypass graft surgery in men and women found that men were more likely to receive narcotics and female patients were more likely to receive sedatives, suggesting that female patients were more likely to be viewed as anxious rather than in pain.
And a 1994 study of 1,300 patients with metastatic cancer by Charles Cleeland of the University of Texas found that 42 percent of patients were not adequately treated for pain. Women were one and a half times more likely than men to be under-treated.
Kathryn Padgett, executive director of the Sonora, Calif., American Academy of Pain Management, said other studies show that women feel pain to a greater degree than men yet their pain is often marginalized.
“Our society views men as more stoic, so when they complain they are treated more seriously,” Padgett said.
Toussaint said when women express emotion around their pain, they are even less likely to be treated seriously. “When women talk about pain, they’re viewed as complaining,” Toussaint said. “When men talk about it, they tend to say they are going to lose their job or their house if they don’t get relief. They talk about it in much more concrete terms.”
Attractive women could face even more barriers to pain care. Toussaint was often told that she didn’t look sick and even said the word “attractive” appeared in her medical records. “We equate being attractive with being healthy,” she said.
Accepting That Pain is Subjective
The problem with treating pain is that pain is subjective, said Dr. Scott Fishman, chief of the division of Pain Medicine at the University of California at Davis.
“We can’t prove anyone does or does not have pain,” Fishman said. “Pain is a mind-body phenomenon. Saying the pain is all in your head is ironic because you can’t have pain without a head.”
The American Medical Association’s continuing medical education program for primary care physicians states that the “best indicator of a patient’s pain experience is a patient’s self-report.”
Fishman said that too often, patient complaints about pain are ignored. He also said that because there is gender bias in society, it is natural there is gender bias in pain management, as well as a racial and economic bias.
Stigmas around painkillers and high-profile cases of abuse–such as those of radio talk show host Rush Limbaugh and Vice President Dick Cheney’s former physician–aren’t helping people in pain get relief. Physicians become fearful of prescribing medications, and patients sometimes become fearful of taking them, Padgett said.
“People say, my family is afraid I’m going to become a drug addict,” Padgett said. This can be especially true for women, Padgett added.
Treatment Strides Led by Patients
Making strides in pain treatment for women must come from patients, much in the same way patients organized around breast cancer and depression, Padgett said.
“Cynthia is a classic case,” Padgett said. “Women in the pain movement need to really give voice to those who suffer pain so we all understand the magnitude of the problem.”
In February, Toussaint and State Sen. Figueroa, and the California Senate Health Committee held a hearing on gender bias in pain management, and declared February women-in-pain month. California is first state to require pain treatment continuing education when physicians renew their licenses to practice medicine.
Part of the scope of the hearing was to raise awareness on the issue of gender bias and raise support to, among other things, require that these refresher courses include information about gender differences in pain treatment.
Speaking at that hearing, Dr. Diana Adams, a pain management psychologist and professor at Palo Alto’s Stanford University, said there is little understanding in how other factors, such as female hormones, influence pain.
“We desperately need psychiatrists who are trained in understanding pain, understanding women’s issues, understanding women’s hormonal issues in terms of prescribing medications,” Adams told the committee.
In the meantime, Toussaint is taking her fight for more equitable pain treatment national. She spoke to the Women in Government, a bi-partisan educational association for women in state government, at their western regional conference in Honolulu in June and is lobbying for each state to enact bills that improve pain.
“Women have spoken loud and clear and I believe we have only scratched the surface of an issue ready to boil over,” she said.
Rebecca Vesely is a health writer in the San Francisco Bay Area.
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