Injured Dancer Fights Bias in Pain Treatment

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Injured Dancer Fights Bias in Pain Treatment

Run Date: 08/03/04

By Vesely

WeNews correspondent

Pain is generally under-treated in the U.S., but women's pain, in particular,

gets neglected, according to studies. One woman with a severe and painful

disorder that went undiagnosed for a decade is working to change that kind of

gender bias.

SAN FRANCISCO (WOMENSENEWS)-- 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 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 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

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.

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.

Fishman, chief of the division of Pain Medicine at the University of California

at .

" 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.

" 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. , 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, " 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.

Vesely is a health writer in the San Francisco Bay Area.

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For more information:

Women in Pain:

http://www.womeninpain.org

For Grace:

http://www.forgrace.org

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