How Bias Hurts Care for Women with Fibromyalgia
Today is International Women’s Day. This year’s theme is #BalanceforBetter because a balanced world is a better world. The day is meant to celebrate women's achievement, raise awareness against bias, and take action for equality.
So why am I at the Fibromyalgia Association of Michigan writing an article on International Women’s Day? Fibromyalgia disproportionally affects more women than men - over 75% of patients with fibromyalgia are women. Fibromyalgia is a chronic pain illness that affects 2-4% of the population -- roughly 10 million Americans. If you are a woman, I would bet it comes as no surprise to you that women are commonly not believed about their pain. Sadly researchers have found that this disbelief begins in adolescence. Science writer Laurie Edwards recently wrote, “Why Are We Still Dismissing Girls’ Pain?,” in the New York Times. Her article included two recent research studies that explored gender bias in the treatment of pain. Both research studies indicated a strong bias that begins in adolescence. Furthermore, she writes “doctors are significantly more likely to dismiss the pain symptoms of young female patients than those of male ones.” If women were believed about their pain I would bet that research would be further along and care would be better for everyone with the illness - women, men, and children.
Don’t get me wrong, there are excellent doctors who do believe women. However, as both a fibromyalgia patient and a leader of a Support & Education Group for nearly 22 years, I can say that I have personally experienced being dismissed about my pain and it’s a common concern expressed by women over the years at my Support & Education Group and affiliated programs.
So what can we do about this? We need more programs in medical schools and continuing medical education (CME) programs that teach doctors about fibromyalgia and the host of common overlapping pain conditions including endometriosis, vulvodynia, and interstitial cystitis. We need people to share articles and information about these illnesses with family and friends. We need to encourage the media to do stories covering the reality of life with these conditions. We need to advocate for more research into these conditions.
Research is another area where women are not equal. A terrific book that investigates this is “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick,” by Maya Dusenbery. Maya writes, “in 2015, Carolyn M. Mazure, director of the women’s health research center at Yale School of Medicine, and her colleague reviewed how much progress had been made over the past two decades to ‘fully represent women in clinical trials and ensure the study of sex and gender in biomedical research.’ They concluded that despite some important steps, ‘progress has been painfully slow—stalling for long periods or sometimes reversing direction—and, consequently, not nearly enough progress has been made.’”*
When it comes to chronic pain research, in general, we are at an overall loss as chronic pain research is woefully underfunded. To give you an idea of the lack of funding for chronic pain conditions, here are the National Institute of Health’s (NIH) expenditures per affected person in the United States for six major chronic conditions:
Heart disease $48 Diabetes $41 HIV/AIDs $2,562 Alzheimer’s disease $97 Cancer $431 Chronic pain $4
Yes, you read it right. The NIH is spending only $4 per person for chronic pain research. This is amazing when you consider that according to the NIH, pain affects more Americans than diabetes, heart disease, and cancer combined.* According to the Institute of Medicine (IOM), chronic pain costs the nation up to $635 billion each year in medical treatment and lost productivity.* It is time for chronic pain research and care to become a priority in our country.
So today on International Women’s Day, it is the perfect day to tell women with fibromyalgia, you are a warrior, you have a warrior family that has your back, and together we must fight against bias in our care! If you don’t have a fibro family please join ours. Get involved. Learn how to take charge of fibromyalgia at our 18th Annual Michigan Fibromyalgia Awareness Day conference on May 11 in Warren, Michigan. If anyone tells you that there is not much that can be done about your fibromyalgia, they are wrong. Click here for event details and information.
Wishing you less pain, more understanding and a better tomorrow!
1)“Chapter 1.” DOING HARM: the Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, ... Misdiagnosed, and Sick, by MAYA DUSENBERY, HARPERONE, 2019, pp. 33–33.
2)“NIH Fact Sheets - Pain Management.” National Institutes of Health, U.S. Department of Health and Human Services, 30 June 2018, report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=57.
3)“Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.” Http://Www.nationalacademies.org, National Academies, 29 June 2011, www.nationalacademies.org/hmd/Reports/2011/Relieving-Pain-in-America-A-Blueprint-for-Transforming-Prevention-Care-Education-Research.aspx.