Why Women with Serious Mental Illness Receive Worse Care
Serious mental illness is more common among women than men — but women with serious conditions are often overlooked in psychiatric research, treated less effectively with psychiatric drugs, and face discrimination and stigma by medical professionals who diagnose them and oversee their care.
The pandemic likely made a bad situation worse.
Health disparities, including mental health disparities, span race, class and many other aspects of people’s lives and identities. While the spread of COVID-19 and related fallout such as closures and economic stressors affected many people, emerging research suggests women are facing unique pandemic-related mental health consequences. Women played an outsized role in caring for children and elderly parents, dominated high-stress professions such as nursing and education, and subsequently, were more likely to report worsening mental health concerns compared to men.
“It was brutal for women, particularly for working women,” said Dr. Marcela Almeida, assistant professor of psychiatry at Harvard Medical School, who works exclusively with female patients and saw a surge in demand for psychiatric treatment during the pandemic. “It just puts women in a difficult position when it comes to mental health and mental illness.”
Pandemic-era data on most individual mental health conditions is lacking. But a report published this week from the national nonprofit Treatment Advocacy Center offers some insight into the experiences of women with the most serious mental health conditions, and suggests barriers to care persist, including delays in diagnosis and a lack of access to inpatient psychiatric beds.
The Seattle Times spoke with two experts in women’s mental health — the report’s lead researcher Elizabeth Hancq, and Almeida — and combed through research on what is known about inequities in how women with mental illness access care, how stigma and discrimination affect their life outcomes, and what can be done to help them get equitable treatment and other support.
What is “serious mental illness” and how common is it?
Serious mental illness is defined as a mental or behavioral health condition that seriously disrupts a person’s ability to function in day-to-day life, according to the federal Substance Abuse and Mental Health Services Administration. Conditions that often fall into this category include bipolar disorder, schizophrenia, major depressive disorder and eating disorders.
In general, serious mental illness is more common among women than men, with about 7% of women and 4.2% of men in the U.S. experiencing serious mental illness, as of 2020 data from the National Institute of Mental Health. This represents a slight uptick from 2019, when 6.5% of women and 3.9% men experienced such serious conditions.
Differences in prevalence vary by diagnosis. Major depressive disorder is nearly twice as common in women than men, for instance, and in studies examining disordered eating, women are significantly more likely than men to report behaviors like fasting and vomiting. Many studies suggest that slightly higher rates of men than women experience schizophrenia. However, the fact that schizophrenia generally appears earlier in men than in women — and how it presents in men versus women — raise questions about whether prevalence rates are truly different.
How have women with serious mental illness been treated historically?
In general, women have long-faced stigmatizing, discriminatory and dangerous attitudes about their mental well-being — a reality that has made them susceptible to being overdiagnosed with serious mental health concerns during certain periods of history, and underdiagnosed at other times, said Hancq, director of research at the Treatment Advocacy Center.
Such attitudes have had a range of practical consequences: From the mid-1800s through the early 20th century, for instance, societal norms, male expectations of how women should act, and limits on women’s rights led to forced institutionalization of women. For example, symptoms of epilepsy, depression or lacking a menstrual cycle might have instead been labeled as “insanity.”
Despite these historical roots, in the 1907s and 80s women were left out or underrepresented in many clinical trials of psychiatric drugs that promised to end such institutionalization. A lack of inclusion in these studies has made prescribing the correct doses for such drugs more difficult, has put women at greater risk for negative side effects and has delayed clinicians’ understanding of how psychiatric drugs could interact with medications a female patient has been prescribed for other health conditions.
What does the new study add to our understanding?
In the new research, Hancq and her colleagues focus on “severe” mental illnesses, a slightly narrower definition than “serious” mental illness. This category focuses on conditions that include psychosis, such as schizophrenia, severe bipolar disorder and major depression with psychotic features.
In January, the researchers spoke with 12 women through small focus groups, an intimate setting that allowed them to speak freely about their lives as patients, mothers, daughters and friends. The data builds on findings from larger studies and adds insight to the picture of women’s lived experiences.
“So much of research generally is about people,” said Hancq. Most research doesn’t include them “in a way that can allow their stories and individual experiences to shape the way that the research is conducted, and therefore, the policies that are established.”
In what ways do women with serious mental illness still experience systemic bias or stigma?
Women report that they aren’t taken seriously by clinicians who evaluate and treat them for mental health concerns, according to research, including the new report from Hancq. This is true even when their symptoms are severe.
For instance, some women report that doctors dismiss or misattribute their symptoms. Others perceive health providers as making stigmatizing diagnoses.
This gender bias can result in a delayed diagnosis of a serious mental illness, and consequently, a longer path to treatment.
Women are also sometimes misdiagnosed, a possible consequence of the fact that some mental illnesses present differently in women than they do in men. Among women with bipolar disorder, for example, about 75% of the time their first episode manifests as depression (versus mania); in men, 68% of the time their first episode is depression. This difference may help explain why clinicians sometimes misdiagnose women who have bipolar disorder with depression.
Said one woman with bipolar disorder quoted in Hancq’s study: “I have a lot of mixed episodes. And it took a long time for that to be heard and understood. And sometimes I wondered if that was because I was a woman — was it because my symptoms didn’t match up exactly?”
Hancq also found that women have internalized stigma about their own treatment experiences. Several women said they don’t think their gender played a role in their care. But when asked to share specifics about their experiences, it became clear that being a woman did influence their treatment.
“That was one of the most interesting findings,” Hancq said. “Because of this long-standing, ingrained inequality and stigma about being a woman and having a serious mental illness that really was deep, it wasn’t even rising to the level of consciousness.”
What biological factors influence women’s symptoms and treatment?
Symptoms of serious mental illness in women — and how they should be treated with psychiatric medications — can vary depending on their age, whether they experience a menstrual cycle and other hormonal changes, Almeida says.
For women with a menstrual cycle, their mood or symptoms of depression might fluctuate as their hormone levels increase and decrease throughout the month. Such variation, Almeida points out, is important for clinicians to understand as they consider a patient’s symptoms.
For women experiencing menopause, a decrease in certain hormones like estrogen might affect the way their body metabolizes a psychiatric drug they have been prescribed; the drug can either be metabolized faster or slower, Almeida points out, in part because of sex hormone levels.
Unfortunately, she said, most psychiatric drug data is from studies involving men, making it difficult to draw firm conclusions about gender differences.
What policy changes could make care more equitable?
Hancq offers these suggestions:
- Make research on psychiatric drugs and other treatments more inclusive of women and people of color, and expand funding for research dedicated to women with serious mental illness.
- Improve social services for women with serious mental illness, and for their family members, including children. Hancq sees a need for more residential care programs that accept both women and their children, allowing parents to continue to care for their kids during treatment instead of placing them with a relative or Child Protective Services.
- Build a mental health workforce that focuses on gender-specific mental health care, especially for anyone who identifies as a woman. Professional training programs should include lessons that help prevent provider bias based on gender.
