This is part one of “Dismantling Dismissal” Word In Black’s patient advocacy series, exploring the ways Black Americans navigate the health care system and what equity leaders are doing to make health care more accessible. Read the series.
Cynthia Guest is 57-years-old and has never had a Black doctor.
And it’s not because she doesn’t want one.
As a sergeant in South Bend, Indiana, Guest didn’t pick the primary care doctor she was assigned more than 20 years ago. Like many Americans, her health insurance dictated what providers she could see within a network.
Guest describes her doctor as a nice, country, white woman with a Southern drawl like Reba McEntire. The old school physician often asks how she’s doing and what concerns she has. The problem isn’t how polite and respectful her doctor is, it’s the fact that concern after concern is dismissed and labeled as something to keep an eye on.
Since 2020, Guest has experienced a lot of sweating, insomnia, weight gain, and blood pressure changes, likely due to menopause. But, she says, her doctor never prescribed her anything to help with the uncomfortable and debilitating symptoms.
“She is a really nice lady, but I’m not there for that – I need help,” she says.
The American Cancer Society recommends women start routine colonoscopy screenings at age 45. But Guest didn’t know, until a white woman her age recommended the test. Other preventative care tests and treatments are often waved off by her primary care provider or not brought up at all.
When she first started seeing this doctor in the early 2000s, Guest didn’t have too many health concerns. Now in her late 50s, she has higher blood pressure and fears that something serious will happen because she didn’t get enough preventative care.
“I’ve always noticed that (providers) look at you like you’re just trying to get drugs … or you’re not in that much pain or exaggerating,” she says about the health care facilities she’s gone to, where most of the nurses and doctors are white. “When they see you, they’re just kind of dismissive because they’re raised in America too. And all the stereotypes that they have heard is what they believe.”
Related: The Horrifying Reality for Black People With Chronic Pain
A report released this year by the Pew Research Center found Black women are more likely than Black men to say the health care system holds people back. In part, because Black women ages 18 to 49 are more likely to say they’ve experienced negative health care experiences. For example, 30% of Black women 50 years old or older and 45% of younger Black women felt their pain was not taken seriously.
Mark Hugo Lopez, director of race and ethnicity research at Pew, says it’s important to continue gathering this kind of data to tell the story of how Black Americans engage with the United States health care system. “This report was meant to build on some of the pieces we found earlier about a push to rebuild the U.S. health care system,” he says.
Unfortunately, these experiences are not new or limited to interactions with a primary care doctor. Guest will never forget the experience she had around 2016 when she took herself to the emergency room for chest pain.
After waiting nearly two hours in the waiting room, her boss, the sheriff, called and asked if she was OK. At that point, she hadn’t even been seen. He hung up. Three minutes later, nurses rushed her to be seen.
The nurses followed up with ‘Who do you know?’ Unbeknownst to Guest, the sheriff called the hospital and told them one of his officers needed to be seen. The nurses told her they didn’t realize she was a police officer.
“I said I had chest pain, like what difference did that make,” she says. “I didn’t feel like I had to say (I was an officer) for them to give me care. If I hadn’t been in these positions, I would’ve gotten the care everybody gets.”
The Burden of Advocating For Yourself
These kinds of incidents are common among Guest’s friends who are Black. Catey Traylor, 31, also of South Bend, Indiana discovered she had hormonal imbalances that caused an irregular period.
“I was lucky to have a care team of doctors who were willing to listen to me … but it was me who had to initiate it,” she says.
Traylor admits to doing a lot of her own research to figure out what was going on in her body. Like many women of color, speaking up, asking questions, and advocating for oneself is a common experience in health care settings.
Additionally, Traylor’s OB-GYN and primary care physician are from two different hospital networks. This made communication between the two doctors difficult and forced her to play the middleman – making sure that both providers had her updated medical records.
Despite going back and forth to multiple physicians, everything came back normal. But she still wasn’t having regular periods. Doctors told her they could induce a period through medication, or she could lose weight. Traylor ended up treating her symptoms according to her own research – which led her to start taking supplements.
“It’s frustrating on a number of levels,” she says. “It’s incredibly disheartening to know something is not right with your body and you go to the doctor … and told there’s nothing wrong.”
The toll it took didn’t just affect her body. Traylor faced the financial burden of constantly making doctors’ appointments, and picking up the bill for whatever insurance didn’t cover. At times, the soonest available appointment was several months away. Other times, she was forced to adjust her work schedule.
“Part of the burden that anyone advocating for their health carries, is feeling like you have to be responsible for all aspects of what’s going on in your body,” Traylor says. “When you’re literally paying people to help you figure this out.”
“We really need to be advocating for ourselves,” she says. “Nobody has your health and wellness at the top of their priority list, the way that you do.”
It’s Not Just a U.S. Problem
Tampa resident Chantelle Grant, 37, is adamant about trusting her intuition when it comes to health. While growing up in Canada, she got her period at 14, and experienced so much pain it left her bedridden. Only six months after starting her menstrual cycle, she was prescribed birth control to mitigate her cramps, fatigue, and lower back pain.
A few years later, at 17, she was prescribed a steroid that is typically used for arthritis. Grant was on the medication for nearly 10 years – in part, because she didn’t think to question the prescriptions.
“When you’re that age, you just want relief,” she says. “You are vulnerable to these providers.”
In Canada, both of her providers were white men. Grant says she felt dismissed about her concerns and was constantly told what she was experiencing was normal. But at a certain point, enough was enough – after doing her own research, she got off all her prescription medications.
Related: Have Diabetes? This Guide Breaks Down Insurance and Big Pharma
Her health took another hit in 2021, when she was diagnosed with hypothyroidism. At the time, doctors recommended a medication that Grant says she would be on for life. Something she wasn’t interested in doing. Instead, she sought out naturopathic doctors to help heal her body.
Now, as an associate program manager of medical education in the U.S., her practitioners are all women of color, something she wished she had as a teen in Canada. Reflecting on the year’s she spent on prescription drugs, Grant says it felt like a part time job having to advocate for herself. But she’s no longer afraid to get a second and third opinion.
“I wish I found my 30-year-old voice at 15,” she says.
The Power of Black Providers
After more than five decades of non-Black health care providers, Guest finally saw her first Black doctor days after our initial interview.
“I was so happy, I wanted to give her a hug. Thank God. I’m relieved,” she says of her experience with the doctor. “To be listened to and to get basic care … I’m super excited.”
Her new primary care physician ordered tests on the first visit, to check Guest’s blood pressure and high cholesterol, as well as routine labs — something she says her previous doctor never bothered to do.
In a 2023 KFF survey, Black women between the ages of 30 and 64, who had a negative experience with a health care provider were more likely to look for a new provider than women 65 and older.
Now, Guest implores Black women to not let years go by before switching to a doctor that listens. While her previous doctor made her feel like she was complaining or being overdramatic, her new physician acted on her concerns right away.
“Don’t wait,” she says. “Go ahead and change as soon as you can.”
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