The invisible toll of fibroids W

Black women are more likely to have uterine growths, experience debilitating symptoms that can leave them feeling fearful, depressed, helpless and alone

hen 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 her 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. “I think I kind of buried it and didn’t really consider that I was going through a depression,” said Gaskins, now 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, 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,” Gaskins said of those first misdiagnoses at the ER. “All they saw was a young Black college girl and assumed I had either an STD 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.

Black women are two to three times more likely than white women to have 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. In particular, she said, Black women, as well as people with fibroids who don’t identify as women, experience that stress most significantly.

The week before Khwezi Magwaza passed out in a Starbucks cafe in June, a nurse had warned 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, Magwaza waved off the dizziness and spotty vision she endured on her subway commute.

“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,” she said. “And I think that a lot of Black women can relate to that experience.”

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. An October 2020, survey found that of 777 Black adults polled in the U.S., 1 in 5 said they had experienced racebased discrimination in health care settings within the past year. Black women in particular, the study found, were most affected.

Certain tropes and catchphrases specific to women of color — “strong Black superwoman,” “Black girl magic” — can also be as harmful as they are empowering, Dixon added. But it’s important to dismantle those stereotypes by learning when and how to say no, embracing self-compassion over perfectionism and scheduling time to recharge.

It’s also important to ask for help, 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, Dixon said.

Getting a therapist changed the life of Tanika Gray Valbrun, 43, who was diagnosed with fibroids at age 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,” 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 supported. They can also attend 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,’ ” Valbrun said.

Seeking out fibroid patient and physician communities, from organizations and groups like The Fibroid Foundation or The White Dress Project (a nonprofit Valbrun founded), can give patients a place to discuss their experiences, connect with caring providers and find events and educational programming.

Dixon emphasized that 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,” Dixon said. “This is not a doom-and-gloom situation.”

MALIN FEZEHAI FOR THE NEW YORK TIMES Khwezi Magwaza, 41, has dealt with heavy periods, anemia and other symptoms caused by her uterine fibroids for seven years.