The Toll of Uterine Fibroids on Black Women
Black women are more likely than white women to have uterine fibroids, and the debilitating symptoms often leave them feeling fearful, depressed, helpless and alone.,
‘I Felt Like No One Truly Listened’: The Invisible Toll of Fibroids on Black Women
Black women are more likely than white women to have uterine fibroids, and the debilitating symptoms often leave them feeling fearful, depressed, helpless and alone.
After years of feeling brushed off by her doctors, N. Jamiyla Chisholm, 45, remembered crying after her first consultation with a Black gynecologist, who diagnosed and later removed her fibroids.Credit…Malin Fezehai for The New York Times
By Patrice Peck
When she was a junior in college, Christie Gaskins, then 20, could barely get out of bed. Her period had become heavier, longer and much more painful, leaving the aspiring broadcast journalist too weak and unwell to excel in school or socialize with friends. Her abdomen had swelled and firmed, making her self-conscious of appearing pregnant.
Scared, isolated and exhausted, she was either in class, asleep or holed up in her bedroom, curtains drawn and lights off. “I think I kinda buried it and didn’t really consider that I was going through a depression,” said Ms. Gaskins, who is currently 37. “But now that I’m thinking about it, I’m like, ‘That was a traumatic situation.'”
After two emergency room visits yielded misdiagnoses from white doctors, Ms. Gaskins said that a Black doctor felt her enlarged abdomen and asked if she knew about noncancerous uterine growths called fibroids. A few months later, surgeons removed a two-pound fibroid from her uterus.
“I felt like no one truly listened,” Ms. Gaskins said of those first misdiagnoses at the E.R. “All they saw was a young Black college girl and assumed I had either an S.T.D. or an unplanned pregnancy.”
Of the estimated 26 million women between ages 15 and 50 who have uterine fibroids, more than half of them will experience related health problems or symptoms. These benign tumors grow in the muscle of the uterus and can range in size from that of a sesame seed to a watermelon. They can cause heavier and more painful periods, frequent urination, abdominal bloating, lower back pain, painful sex and, rarely, infertility.
For unknown reasons, Black women are two to three times more likely than white women to have uterine fibroids, and are more likely to have larger and more numerous tumors and develop them earlier in life. Black women are also significantly more likely to have debilitating symptoms that interfere with work, relationships and social and physical activities — which can leave them feeling fearful, depressed, helpless and alone.
Experts say that these differences, paired with the racial and gendered discrimination Black women already face — in medical settings, schools, workplaces and beyond — can compound the physical and mental tolls that uterine fibroids take on them.
“We know that symptomatic fibroids is causing stress,” said Anissa Vines, an assistant professor of epidemiology at the UNC Gillings School of Global Public Health. And in particular, she said, Black women, as well as people with fibroids who don’t identify as women, experience that stress most significantly.
Feelings of shame, pushing through pain and gaslighting
As a journalist who specializes in Black women’s issues, I’ve long known about the devastation that symptomatic fibroids can bring. But I didn’t fully understand the day-to-day burden until a friend, Khwezi Magwaza, passed out in a Starbucks cafe in June.
The week before, a nurse had warned Ms. Magwaza, 41, that she was extremely anemic and needed to go to an emergency room if she ever felt weak. But after seven years of dealing with heavy periods, anemia and other symptoms linked to her uterine fibroids, my friend waved off the dizziness and spotty vision she endured on her subway commute.
Khwezi Magwaza, 41, has dealt with heavy periods, anemia and other symptoms caused by her uterine fibroids for seven years. A spell of dizziness and spotty vision caused her to pass out in a Starbucks cafe in June.Credit…Malin Fezehai for The New York Times
“I’m pushing myself, even though I know I’m not at 100 percent, and ignoring medical advice because I’m so used to my own well-being coming last,” Ms. Magwaza said. “And I think that a lot of Black women can relate to that experience.”
Susy Oludele, 31, a hair salon owner and celebrity hairstylist who is best known for plaiting intricate cornrows and lengthy box braids, felt uninspired about her career during her two-year bout with symptomatic fibroids.
“When you’re doing people’s hair, you want to be in the mood,” said Ms. Oludele, who works out of her salon in the Bedford-Stuyvesant neighborhood of Brooklyn. “But if you’re not feeling good, how are you going to make someone else feel good? It was affecting my whole experience as a service provider.”
Having to stand for long hours and travel to sets and celebrity clients’ homes worsened her already excruciating stomach and back pains, preventing her from eating and sleeping well. Ms. Oludele found no respite on beach vacations or on dates, as her enlarged abdomen and suffering made her self-conscious and quashed her libido. A round of fruitless doctor’s visits and a delayed diagnosis drained the hairstylist. Surgeons ultimately removed six fibroids from her uterus, one of which was the size of a grapefruit.
Tori Dixon, a licensed professional counselor who works with Black women experiencing symptomatic fibroids, said that Black women have historically pushed aside their feelings of pain and discomfort, and sometimes express feeling ignored and unheard — especially in health care spaces. One survey from October 2020, for instance, found that of more than 1,700 adults polled in the United States, one in five people who were Black said they had experienced race-based discrimination in health care settings within the past year. Black women in particular, the study found, were most affected.
These and other types of discrimination can have lasting ramifications on health. One study published in 2013, for instance, found that Black women who experienced racism got fewer pap smears because of the discrimination they felt. Another study, published in 2013, found that Black women with high blood pressure who did not trust their health care providers were less likely to adhere to their prescribed treatment plans than those who did.
N. Jamiyla Chisholm, 45, a writer in Brooklyn who dealt with unpredictable, heavy bleeding, anemia and fainting spells over two decades, said that the white doctors she saw throughout the years always seemed to imply that nothing was wrong, recommending birth control or opioids to manage her symptoms.
Ms. Chisholm remembered crying after her first consultation with a Black gynecologist who diagnosed and later removed her fibroids, because the doctor told Ms. Chisholm that she did not have to live the life she had been living.
“When I asked her, ‘So, I’m not crazy?’ she replied that I wasn’t and was also shocked that no one had properly helped me before,” Ms. Chisholm said.
Dismantling stereotypes and asking for help
Dr. Erica Marsh, chief of the division of reproductive endocrinology and infertility at the University of Michigan Medical School, said that it’s common for Black patients to feel like their doctors aren’t listening to them. According to Ms. Dixon, it’s also common for Black women to project themselves as indestructible in the face of societal and personal challenges.
“When it comes to reproductive issues, you can sometimes gaslight yourself or even other people kind of gaslight you into thinking that what you’re going through is not as serious as what you’re experiencing,” Ms. Dixon said.
Certain tropes and catchphrases specific to women of color — “strong Black superwoman,” “Black girl magic” — can also be as harmful as they are empowering, Ms. Dixon added. “We have all of the superlatives that speak to almost superhuman strength, that there is this need, sometimes, for Black women to push through,” she said. But it’s important to dismantle those stereotypes by learning when and how to say no, embracing self-compassion over perfectionism and scheduling time for yourself to recharge.
It’s also important to ask for help, Ms. Dixon said.
Start by learning to recognize the signs that your mind, along with your body, has been affected by a fibroid diagnosis. Ask yourself: Have your social activities or preferences changed since your diagnosis? Are you sad or depressed, having trouble concentrating or sleeping, or experiencing crying spells, drastic appetite changes, weight changes or suicidal thoughts?
If so, you may want to consider talking to a mental health professional, Ms. Dixon said.
Getting a therapist changed the life of Tanika Gray Valbrun, a 43-year-old journalist who was diagnosed with fibroids at 25. Counseling helped eliminate the shame she used to feel about her fibroids. She recognized that therapy has a stigma in some parts of the Black community and recalled being discouraged by her Jamaican mother from publicly sharing her experience with fibroids.
“I don’t blame my mother because she’s only teaching me what she was taught,” Ms. Valbrun said. “But at some point we have to change that narrative.”
Having friends, family or romantic partners who understand and validate your physical and psychological pain can help you better manage any strong negative emotions, and help you feel cared for and supported. They can also attend in-person and virtual doctor’s visits with you to take notes and help contextualize the discussion.
“You need that person, so when you walk out the doctor’s office and feel like you’ll never have children, your girlfriend will be like, ‘OK girl, she didn’t say that, but she said we had to do XYZ,'” Ms. Valbrun said.
Dr. Marsh added that it’s important for health care providers to explain all available treatment or preventive care options with patients, which they sometimes don’t do. Ask your provider to walk you through the established treatment guidelines he or she used to develop your treatment plan. It can also be helpful to jot down questions before an appointment, or explore second or third opinions.
Seeking out fibroid patient and physician communities, from organizations and groups like The Fibroid Foundation or The White Dress Project (a nonprofit Ms. Valbrun founded shortly after having her own fibroids surgically removed), can give patients a place to discuss their experiences, connect with caring providers and find events and educational programming.
Ms. Dixon emphasized that uterine fibroids do not mark the end of a life worth living. And sharing stories can help foster hope for yourself and others, she said.
“I just want to be clear that there is hope,” Ms. Dixon said. “This is not a doom and gloom situation.”
Patrice Peck is a journalist and editor based in Brooklyn and Los Angeles, who focuses on the intersection of race, culture and identity. She covers topics like representation in Hollywood and media, race-based hair discrimination and the coronavirus pandemic.