(NewsNation) — Women’s health care has made strides in the past 30 years, but glaring disparities continue to hinder women’s well-being.

The death of 36-year-old YouTuber and beauty influencer Jessica Pettway has resurfaced concerns voiced by generations of women who have tried, unsuccessfully or with misdirection, to navigate their personal health care. 

Eight months ago, Pettway snapped a photo of herself in a convertible under a blue sky. Her locs tumble down from an effortlessly put-together bun and frame her face, expertly made up with shimmering blue liner, her brown eyes popping. A young child sits in a car seat behind her.

It was her favorite photo of herself at the time, she wrote in the Instagram caption below. There, she described the fear and pain she experienced in the previous year and thanked God for her seemingly improving condition. 

“Every testimony begins with a test. And God is still beautifying mine,” she wrote.

Pettway died last week of cervical cancer after doctors originally said her symptoms were “normal.” She leaves behind a husband and two young children along with an online community that is collectively grieving. 

For some, Pettway’s experience highlights the disparities in health care for women and Black women in particular. Comments from people revisiting the post after Pettway’s death encourage other women to advocate for themselves, seek second opinions, and listen to their bodies. 

Funding, social disparities

Women’s health research is still budding. It wasn’t until 1993 that the United States required the inclusion of women and under-represented people in research and clinical trials backed financially by the U.S. National Institutes of Health.

A March 2023 report commissioned by the non-profit Women’s Brain Project, however, found that women remain underrepresented in clinical trials in oncology and neurology.

Funding is part of the problem. Diseases that predominantly affect women, including migraines, anorexia and endometriosis, have historically received a “fraction” of funds that are awarded for diseases that predominantly affect men, according to an editorial in Nature.

Chronic Fatigue Syndrome, for example, receives some of the least NIH funding, compared to the amount of life years impacted or claimed by the condition.

Additionally, low-income women and women with less education have nearly double the rate of disease, according to the American Heart Association (AHA).

Life expectancy can also differ by more than 20 years for people who live just five miles apart, given the limited care options in neighborhoods with lower economic stability. 

“It’s kind of like a never-ending battle to be taken seriously for many women,” said Maya Dusenbery, journalist, editor and author of the book “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.” “And there are a lot of pitfalls or Catch-22s that you fall into.” 

Hysteria, racial bias

Pettway went to the hospital for severe vaginal bleeding twice in the preceding year, and twice doctors sent her home, calling her symptoms “normal.” It was a fibroid, they said — something they couldn’t surgically remove, and recommended a biopsy after nearly five months.

“When I woke up from the anesthesia, he casually said, ‘Yep, you have stage 3 cervical cancer,'” Pettway wrote.

The disease was once one of the most common causes of cancer death for American women, according to the American Cancer Association. Screening and prevention have helped reduce the death rate by more than half since the mid-70s, though it remains about 65% higher in Black and Native American women.

Race can be an early health care barrier. While a wealthy white woman might be seen as anxious and spending too much time on WebMD, a Black woman is more likely to be seen as malingering or seeking painkillers, Dusenbery said.

At a loss for an explanation, professionals might rely on outdated concepts.

Hysteria was a formally studied psychological disorder listed in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders until 1980.

Theories changed over time, but hysteria remained a catch-all explanation for “everything that men found mysterious and unmanageable in women,” according to a McGill University historical summary.

“Obviously, we don’t write down hysteria as a diagnosis on medical charts these days, but there are these new euphemisms, other labels and concepts of psychosomatic illness that…continue to be attached to women and wrapped up in these stereotypes of women’s emotionality,” Dusenbery said. 

Advocate, educate

Getting sick didn’t feel like an option for Marian Dancy, a mother of four and AHA volunteer. When she temporarily lost her vision at work in 2019, however, she used her first sick day.

Dancy was six months post-partum and experiencing fatigue and swelling. Up to that point, her concerns were met with insistence that she was young and healthy with no family history of anything that might explain her symptoms.

All the while, her muscles grew increasingly sore and fatigued. Congestion built as she tried to sleep. Dancy eventually went to the emergency room, where doctors told her she had pneumonia but the treatments they gave her only made her feel worse.

“By the time I dragged myself to the for the final appointment, I couldn’t bear my symptoms anymore,” Dancy said.

After being told she had a virus or was otherwise healthy, Dancy was surprised to learn she was in heart failure.

Peripartum cardiomyopathy is a rare form of heart failure that causes the heart chambers to enlarge and the muscles to weaken, restricting blood flow. It’s usually diagnosed during the last months of pregnancy or in the months immediately after giving birth, making Dancy’s case somewhat of an outlier.

“There was this assumption that I had no family history, I have a pretty clean bill of health, I’m young… So there’s no problem with me,” Dancy said.

New research is underway. The AHA recently published findings that highlight heart disease as the leading cause of death in women. Emerging evidence has also identified gender-specific risk factors, including complications during pregnancy and menopause.

“As a person experiencing any symptoms, it is your right to continue to press on and ask for more help or different help if you need to,” Dancy said.

Dusenbery says women can support their health needs by bringing an advocate to appointments, seeking second opinions, and educating themselves on the history of women’s health care and research.

“The biggest danger is that it is so easy for individual patients interacting with medicine to start to distrust their own sense that something’s wrong when they’re faced with a doctor who’s saying it’s just stress or nothing’s wrong,” Dusenbery said.