An estimated 795,000 patients a year die or are permanently disabled because of misdiagnosis, according to a study published by BMJ Quality & Safety periodical. Women and racial minorities are at least 20 percent more likely than white men to experience a misdiagnosis.
Actor Halle Berry recently opened up about a health scare that helped her learn she was experiencing perimenopause. Berry complained to her doctor of the pain: “I feel like I have razor blades in my vagina.” Her doctor misdiagnosed her symptoms as “the worst case of herpes.” After she and her partner tested negative for the sexually transmitted disease, she realized that the symptoms she was experiencing were symptoms of perimenopause.
Berry said, “My doctor had no knowledge and didn’t prepare me. That’s when I knew, ‘Oh my gosh, I’ve got to use my platform.’ I have to use all of who I am, and I have to start making a change and a difference for other women.”
Beauty influencer Jessica Pettway recently passed away at the age of 36, after being misdiagnosed with uterine fibroids. Her symptoms began over a year ago. Initially she experienced intense bleeding that she said she thought, after talking with other women, was a “normal symptom” for women. Pettway was later hospitalized at least three times due to more pain and heavy bleeding; each time being told she had a fibroid. It was not until eight months later, after a biopsy, that she finally learned of her cervical cancer diagnosis. By then, it was too late.
The truth is that misdiagnosis is a public health issue. A misdiagnosis can change a person’s life and the life of their family. With Black women, it can allow their condition to further deteriorate, making it more likely for them to suffer for the rest of their lives — or in the case of Jessica Pettway — lose their lives.
Misdiagnosis is nothing new. Racial and gender disparities are widespread. Black women suffering from heart attacks are more likely than others to be discharged without diagnosis or treatment. When it comes to mental health, Black people with depression are more likely than others to be misdiagnosed with schizophrenia. Black people are also less likely than white people to be diagnosed early with dementia, denying them of the opportunities to receive treatments that could work in the early stages of the disease. Today, Black women are far more likely to die during pregnancy or childbirth than white women are.
There’s something to be said about how a Black woman’s pain is perceived by medical professionals. It can be traced back to the mid-1800s. Black women’s bodies were used as medical test subjects in experiments that would be unconscionable today for practicing painful operations (at a time before anesthesia was in use) on enslaved women in Alabama between 1845 and 1849. In his autobiography, The Story of My Life, physician J. Marion Sims described the agony the women suffered as he cut their genitals again and again in an attempt to perfect a surgical technique to repair vesico-vaginal fistula, which can be an extreme complication of childbirth.
These women wanted to be healed, yet they were just considered property. These women held value only for what they could produce. It seems as though that sentiment holds true today. Our pain is not taken seriously and we’re dismissed.
As early as 2016, medical students and residents were surveyed and held one or more of these false beliefs: “Black people’s nerve endings are less sensitive than white people’s.” “Black people’s skin is thicker than white people’s.” “Black people’s blood coagulates more quickly than white people’s.”
It’s shocking that 40 percent of first- and second-year medical students endorsed these beliefs. These are the individuals we will be entrusting our care and our family’s care to. These are the people that will be (mis)diagnosing Black women’s perimenopause for herpes and fibroids for cervical cancer. It’s scary to think about.
Even more, false ideas about Black peoples’ experience of pain can lead to disturbing treatment disparities. In the 2016 study, trainees who believed that Black people are not as sensitive to pain as white people were less likely to treat their pain appropriately.
A couple of years ago, I awoke to the worst pain ever in my left shoulder. I could barely move my left arm and needed help to put my shirt on. Ibuprofen wasn’t working, so I went to urgent care. The white woman doctor’s line of questioning made me feel like I had done something wrong, like I didn’t deserve to seek help for my pain. I had to implore to her the level of severe pain I was in and that I needed help. She almost hesitated to prescribe medication, as if I should be able to manage it with over-the-counter medication. It felt dehumanizing and made me feel invisible. It makes you feel less than, and to be honest, after a while, you just get mad.
Ironically, her distrust of me seeking help with pain is a pattern, as I’ve had several Black women friends of mine experience a similar scenario. The simple acknowledgment of pain requires some doctors to turn on their bias, even when there are tangible test results. This causes racial disparities to increase.
As Black women, we are supposed to be strong. But we know all too well where this trope gets us. It makes us feel as though we aren’t allowed to hurt and need to suffer in silence. It doesn’t matter if we have higher wealth, social class, or education — they are not protective factors for us. The racial bias persists.
The disproportionate misdiagnoses of Black women tell us that our health doesn’t matter as much as others. Every Black woman I know, including myself, understands that it’s a matter of life and death to take charge of our healthcare and be an advocate for our own well-being. It’s heartbreaking to know that there are doctors who do not care about our pain. A distrust in a system built to protect and save lives shouldn’t be a theme in America, and yet, here we are.
