By: Silke Schoch, MA, Director of Research & Programs, National Health Council 

In 1869, Dr. M.E. Dirix, wrote in his book Women’s Complete Guide to Health “…women are treated for diseases of the stomach, liver, kidneys, heart, lungs, throat, etc.; yet in most instances, these diseases will be found, on due investigations, to be, in reality, no diseases at all, but merely the sympathetic reactions or the symptoms of one disease, namely, a disease of the womb.” Although this erroneous theory about what kind of diseases usually affected women was published 150 years ago, a study from 2015 showed that women still had to wait longer than men for a cancer diagnosis for cancers such as bladder, colorectal, gastric, head and neck, and lymphoma. In a 2019 study on the Danish population, “a complete population with free and equal access to high-quality healthcare,” researchers found that “the age at first hospital diagnosis was, on average, higher in women, across nearly all areas of disease.” Even in societies where health care is free, diagnosis still took longer for conditions that affected all genders. 

Diagnosing women accurately appears to be a challenge in medicine that has continued for centuries. This is due to the persistent disbelief in the words of female patients, and it can be compounded and worsened for non-white patients who must content with both sexism and racism when they are seeking care. Research from 2021 shows that when clinicians were shown a video that had a white male actor and Black female actor having a cardiac event, there were “significant disparities in the treatment recommendations given to the white male patient-actor and Black female patient-actor, which…would result in the Black female patient being significantly more likely to receive unsafe undertreatment, rather than the guideline-recommended treatment.” 

What is the science behind disbelief of patients in medicine? Why do perceptions continue that patients, especially female patients, cannot be trusted to know the severity or impact of their own symptoms? As with many issues that are pervasive, the problem goes back to the way research is conducted and who has historically had power in decision-making. 30 years ago, a new federal law mandated that clinical trials using funding from National Institutes of Health (NIH) must include women and historically underrepresented communities. Even before women are included in clinical trials though, they can be left out of research. A 2021 study on papers published by the American Journal of Physiology – Cell Physiology found that from 2013 to 2018, “male bias was conspicuous when rodent primary cells were used in experiments” and that “most of the studies carried out using both male- and female-derived cells failed to analyze the results according to sex.” Approximately 50% of the studies did not note whether they used male or female cells.  

By not using female subjects and cells in testing important drugs, women can also be overmedicated and experience worse side effects from medications. Researchers in 2020 discovered that there were “86 drugs for which there was clear evidence of sex differences in how the body broke down the drug…in 96% of cases, this resulted in significantly higher rates of adverse side effects in women” including in drugs such as “aspirin, morphine and heparin, and widely prescribed antidepressants such as sertraline and bupropion.” Health care providers, or others involved with a female patient’s care, may believe that their patients are being overly sensitive or complaining about side effects unduly when in fact female bodies break down drugs differently. 

Shedding light on how this disbelief can be incredibly harmful to female patients is a current lawsuit that was brought forward against Yale Fertility Center. In 2020, many women at this facility told their doctors they were in incredible amounts of pain when they were getting their eggs extracted for in vitro fertilization (IVF). Due to the pain levels associated with this procedure (as the needles need to go through parts of a patients reproductive tract to retrieve the egg) patients are usually “either put under anesthesia or are kept conscious but given strong sedatives.” The patients in this case were supposed to be receiving fentanyl, but instead were given saline. Although the women told their medical providers about the pain they were in, their concerns were never investigated. Eventually, “despite complaints of pain, the clinic only found out about the diversion after a colleague noticed a loose cap on a fentanyl vial.” A nurse was later found guilty of stealing the pain medication for their personal use before the surgeries. 

It is long overdue for the medical community to suspend its disbelief when women tell them something is wrong. A publication in HealthAffairs on this subject notes that, “many validated scales measure patients’ trust in clinicians, but only one scale measures physicians’ trust in patients.” More metrics like this can discover whether patients are being believed. We need to work together as a community to establish that our first instinct should be to believe women who tell us they are suffering.