Women’s* biology and symptoms are often misunderstood in medicine, which leads to difficulties in diagnosis and treatment. Maya Dunsenbery, a journalist suffering from rheumatoid arthritis (RA), recently wrote a book, Doing Harm, about medical gender bias, which she discussed in an interview on Fresh Air that has been transcribed at kasu.org.
Maya was diagnosed with RA in her 20s after she began to feel pain in her fingers, which quickly spread to other joints. RA is an autoimmune disease that occurs when joints are chronically inflamed, causing stiffness and pain. It has a worldwide prevalence of 1-2%, with 200,000 new cases being diagnosed each year. Incidence is higher in older age groups, and three quarters of RA sufferers are women. Maya describes herself as fortunate in being diagnosed relatively early in the disease progression, leading to faster and more effective treatment. However, many other people with RA report feeling like doctors trivialized their symptoms, and found it difficult to reach diagnosis.
The underlying cause of these issues, argues Maya, is a broader pattern of gender inequality in medicine that has historical roots, but which is an ongoing problem. Medical knowledge is often based on research using male bodies, causing sex differences to be frequently overlooked, even now. Women have only recently participated in drug trials and medical observational studies. In the 1970s, there was concern that female participation in drug trials could affect fetuses if the women were unknowingly pregnant, and so the FDA prohibited fertile women from participating in any drug trials. For less clear reasons, women were also left out of many observational studies around the same time. One longitudinal study of aging that was carried out from the 1950s to 70s did not include any women, despite being a purely observational study. This historical sidelining of women in medical research limits doctors’ understanding of women’s health, and therefore the treatment that women receive.
Although legal and social changes mean that women are generally included as research subjects now, it’s still uncommon to break down the outcomes of studies by sex. Furthermore, pre-clinical trials using animals rarely consider the effects of gender. Generally, only males are studied, although this is hoped to change as the NIH brings more attention to issues associated with this practice. The lack of females in studies historically, and in many pre-clinical trials, and the standard practice of ignoring gender in results analysis, means that our knowledge of gender differences in health remains limited.
There are many instances where gender plays a significant role in how a patient should be treated. One common example is in drug dosage. Drug dosages tend to be standard for all adults, but the amounts that people need actually depend on many factors, including hormones, enzyme levels, and body fat. Probably the most important of these is body weight, and since the average sex difference in body weight is rarely accounted for, women are likely to be, on average, over dosed.
Gender can also impact how certain diseases present. Current knowledge of heart disease is largely based on studies of men, rather than women, but recent evidence has shown that women tend to experience symptoms that are ‘atypical’, or different from that of males. These can include nausea, lightheadedness, shoulder and neck pain, and fatigue. This deviation from what are considered ‘normal’ symptoms means that heart disease is more frequently overlooked in women, with one study finding that women under 55 are seven times more likely than average to be turned away when having a heart attack. Examples like these highlight the problem with overlooking gender in medicine, and treating female bodies as equivalent to male ones.
These differences are particularly acute when treating ‘subjective’ symptoms, which are often associated with long-term poorly understood autoimmune diseases like RA. Women make up three quarters of the 50 million US citizens affected by autoimmune diseases, and two thirds of people with chronic pain. These diseases often cause symptoms, like fatigue and pain, which are difficult to measure. Doctors therefore make judgments based on discussions with patients about how severe these symptoms are. However, Maya says that women often feel dismissed, being told by their doctors that they are just stressed or tired. Some women also feel as though descriptions of ‘subjective’ symptoms will be more effective if they take a male partner or family member to the doctors with them to support their story. Maya argues that there is a danger that female patients reporting the effects of their chronic conditions will be seen as hysterical and may be dismissed if they describe their level of pain, but that the other option is to underreport symptoms, which would also prevent proper treatment. Unconscious biases about women, and their descriptions of pain, therefore interfere with proper diagnosis and treatment.
Women’s diagnoses and treatments continue to be affected by gender biases, with many finding themselves having to fight for their symptoms to be taken seriously. Greater efforts to include females in pre-clinical trials, and results analysis, as well as raising awareness about unconscious gender biases doctors may have, would help reduce these problems. For more information about this and similar issues, you can look at Maya’s website, Feministing, or her book about gender inequality in medicine, Doing Harm.
*For the purposes of this article, gender and sex have been equivocated.
