How Gender Bias in Medicine Affects Women With Fibromyalgia

It is not easy being a woman with fibromyalgia.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

According to a 2018 study published in the Journal of Women’s Health, “Fibromyalgia is most prevalent among middle-aged women, encompassing 75%–90% of those diagnosed.” As a young woman diagnosed 10 years ago with this disease, I know first-hand the bias that exists against women in the medical field, and the hurdles we experience trying to receive care. This can include refusal to receive diagnostic tests, prescription of unnecessary medications, suggestions that we get therapy rather than continue searching for a physical answer, and dismissal of the severity of our issues.

I once had a doctor openly laugh at me when I requested a disability placard due to trouble walking, because according to him, I “should be doing more walking, not less.” Never mind that I literally could not get myself to my destination some days due to pain, that I had fallen more than once due to hip issues caused by the disease. No, according to him it was “good pain.”

To protect myself and my well-being, I now have two criteria when I select new doctors. First, they must be female. I do this because in all of my experiences of being written off by doctors, it was male practitioners who were responsible. Female practitioners certainly aren’t immune to bias, but I find it helps to have someone in the room who has experienced gender discrimination themselves.

Second, I look for doctors who are younger than 40. I know that the longer ago someone attended medical school, the more likely they were to have been wrongly taught that fibromyalgia is a psychosomatic disorder, not a medical condition. Part of this dates all the way back to 1880, when a psychiatrist labeled fibromyalgia symptoms as “neurasthenia” and designated stress as the cause. Since then, despite continued research and its inclusion in medical journals, there are still some doctors who maintain the belief that fibromyalgia is simply a “fad disease” that is “all in the patient’s head.”

One of the issues seems to be a lack of a diagnostic test that definitively proves someone is experiencing fibromyalgia. There is no blood test, no scans or imaging, no true way to identify the widespread pain and difficulty functioning people with fibromyalgia endure. Sure, there are trigger point tenderness tests, brain scans that perhaps indicate overactive pain centers in the brain, and tests that may indicate some inflammation in the body, but none of them definitively prove that fibromyalgia is the cause. Without a medical professional waving test results that decree fibromyalgia is the culprit, people often struggle to believe that the disease really exists. What if someone is exaggerating how they feel? What if it actually is all in their head?

It is no secret that through time, women have struggled to be believed in their quest for medical and mental health care. Hysteria, which was diagnosed most often in women, was only removed from the DSM in 1980. That’s the year Michael Jackson’s “Don’t Stop ‘Til You Get Enough” was rocking the airwaves. That gender discrimination is also part of the reason why women going to the emergency room during a heart attack are more likely to die than a man with the same condition. There is a long history of women being minimized, discredited, and shamed when seeking help, with their experiences either written off or simply ignored. Add to that the tendency people have to defer to a “professional” over anyone else (see the Milgram Shock Experiment), and there is a lot of room for bias in the medical field.

For me, hope lies in the fact that times are changing. We no longer have to tolerate sub-par medical care simply because that’s the way things have always been done. With the ability to share our experiences with others, review doctors online, and seek care in a larger search radius, we can find professionals who both believe us and want the best treatment for us. If a doctor won’t hear us, we can, and should, find someone who will.

This Women’s History Month, I would like to empower other women to remember that we are the experts in our experience. We live in our bodies full-time, and no amount of medical schooling can replace that expertise. If a medical provider doesn’t provide you with the solutions you need, find a new one! You are a consumer paying for a service, and you have a right to be satisfied. You wouldn’t continue to pay an electrician who insisted the lights were on when they weren’t, so why would you pay a doctor who insists there is nothing wrong when there clearly is?

Gender bias is a well-documented fact, but it doesn’t have to stay our reality. When we learn to advocate for ourselves, we show people how to treat us, and we are more than worth the effort.