September 15, 2022

Women with Severe Mental Illness Need Our Attention

Guest blog by Elizabeth Sinclair Hancq, Director of Research, Treatment Advocacy Center.

Severe mental illness, including schizophrenia, severe bipolar disorder, and major depression with psychotic features, impacts 8.8 million adults in the United States. Approximately half of these individuals receive no treatment in a given year.

There are important sex differences between men and women with severe mental illness. Women tend to have a later age of onset of the illness, developing symptoms for bipolar disorder or schizophrenia in their late 20s, compared to early 20s in men. Symptoms of the disorders, such as hallucinations, delusions, or flat affect, which causes people to not be able to express emotions or understand emotions in other people, may present differently in women compared to men, and women may have different side effects from the medications that are used to treat severe mental illness. Additionally, having a severe mental illness has important implications for women’s health issues, such as in reproductive health, where symptoms of schizophrenia and bipolar disorder may change over the course of a woman’s menstrual cycle, during pregnancy, or after menopause.

In 2016, Treatment Advocacy Center published the report “10 Ways Women with Serious Mental Illness Are Overrepresented. Underserved,” which presented the ways in which women with serious mental illness disproportionately experience negative outcomes compared with men with the same disorders and women without serious mental illness. However, missing from this research base is information about how women themselves feel about their illness and how it impacts their lives. Too often, research is conducted on and about people, rather than inclusive of the people being studied.

Treatment Advocacy Center remedied this research gap by conducting focus group interviews to hear directly from women with severe mental illness about the unique experiences, challenges, and barriers they face in achieving the lives they want. A graphic recorder was present for the focus group discussions to create a visual representation of the results and capture the conversations in a way that simple data representations and other qualitative methods cannot. The result of these interviews, “Listen to Us: The Unique Experience of Women with Severe Mental Illness,” was published by Treatment Advocacy Center this week.

The results of the study indicate that women with severe mental illness face compound marginalization because of their gender, mental illness and the stigma, social isolation, and disparate treatment that comes from belonging to a marginalized group. There are larger barriers to treatment for women with severe mental illness than for men with the same disorders, due to women’s symptoms being taken less seriously as well as system capacity disparities, such as less access to inpatient psychiatric beds. Additionally, social isolation and relationship challenges are very common problems for women with severe mental illness and are often ignored. There is much to learn by listening to women; their experiences can help inform solutions that address these disparities.

Based on the research report, identified below are three research areas deserving the most priority:

The full “Listen to Us” report can be accessed here. Learn more about Treatment Advocacy Center’s work at www.treatmentadvocacycenter.org.