Grace Chappell
Combating the Stereotype of the ‘Angry Black Woman’
One day in 2021, without warning, Grace Chappell couldn’t speak. Though her mind was racing, the 40-year-old mom of seven couldn’t force a single word out of her lips.
There had been 13 years of frequent agonizing headaches, with a diagnosis of chronic migraine after seven years, but Grace had never been through anything like this before. Three months earlier, though, she had experienced a similarly terrifying event when one side of her face suddenly began drooping. While this is typically a clear indicator of a stroke, that wasn’t the case for Grace.
A neurologist diagnosed Grace with hemiplegic migraine, a rare type of migraine accompanied by loss of feeling in one side of the body, mimicking a stroke. She also developed idiopathic intracranial hypertension, or pseudotumor cerebri. The condition causes increased pressure inside the skull, and Grace says it affects the right side of her body. “It mimics a brain tumor,” she shares. “It’s a lot of pain, and it makes me sound as if I’m hyperventilating or humming.”
During the frequent attacks Grace experiences, which can last for up to seven hours, she is trapped in her body, still able to think but unable to communicate.
“That’s when I cry,” she says. “I get emotional. This is so brand new to me. I don’t want to accept it.”
DISBELIEVED, BELITTLED, CALLED ‘STUPID’ AND ‘BELLIGERENT’
Getting treated for her pain has been a long and difficult road. At first, she was the one who dismissed her migraine episodes: “It was just a bunch of pressure. I started feeling dizzy and nauseous. But I assumed that it was just a headache,” she says.
But soon it was doctors who were minimizing her pain, suggesting she lose weight or change her diet. “Did you ask me what I’m eating? No,” she recounts. “They keep pushing diabetes or high blood pressure on Black people, saying, ‘Watch what you eat, eat healthy, eat this…’ Every African American doesn’t have diabetes.”
When she goes to the emergency room during an attack, she often sees unfamiliar providers and is unable to communicate with them because of her speech loss. In the ER, it can be difficult to get anyone to take the time to read her charts.
“They’re assuming it’s a stroke, and I understand they’ve got to, but I’m trying to tell them I know it’s not,” Grace shares.
After too many experiences like this, Grace, who lives in
Philadelphia, and her husband have developed a Charades-like way of communicating that allows her husband to act as interpreter when she can’t verbalize her thoughts for herself.
“I talk a lot now, because I know what it feels like not to be able to talk,” Grace shares. “I’m being more aware of all the things in life that I unconsciously may have taken for granted, big or small, because in the blink of an eye, it can all be taken away from you.”
Grace is concerned about being seen as an “angry Black woman” when she seeks medical care. She sees very few Black faces around her at the hospital, “and if they are there, they aren’t doctors or nurses,” she says.
The lack of medical personnel who share her cultural background has further-reaching effects than just the ability to chit-chat during an appointment. A National Institutes of Health report notes that cultural differences between providers and patients increase the likelihood of “diagnostic errors, missed opportunities for screening, failure to take into account differing responses to medication,” and more.
Grace says she has felt disbelieved and minimized by health care professionals multiple times, including an instance when she went to the emergency room during a pressure headache caused by her idiopathic intracranial hypertension and was placed in a frightening tent-like room.
“It was so uncomfortable,” she shares. “It wasn’t safe at all; I didn’t feel safe.”
She called her husband to come pick her up and says a nurse called her “stupid” and “dumb” for leaving, and documented that Grace had refused care.
“That made me look like I didn’t want the treatment that I was fighting so hard to receive, but they didn’t understand; I wasn’t safe,” Grace says.
Another time, she had a bad reaction to a medication and was described as “belligerent” in her file.
The need to push past harmful stereotypes about patients of color takes a toll: “It gets a little frustrating, because [they think I look fine], but I’m not. I’m in pain. I might not cry all the time, because unfortunately, I have to deal with it. So I have to come in and be the ‘strong Black woman’ that people associate us with. But we’re in pain too!”
OPENING UP, FINDING SUPPORT, AND REMEMBERING TO LAUGH
For a while, the mother of seven and grandmother of two tried to hide her pain, wanting to appear strong. “There was a point in my life that I could not be active,” she says. “I was always in pain. I was really sensitive at times with the kids, with the noise, with the TV, and I didn’t want to project, so I would come to my room. I would always be silent.”
She finally sat everyone down and explained what was going on.
“I said, ‘Hey, this is what I deal with. I’ll try to be available as much as I can at the moment. But during times that I can’t, it’s not that I don’t care or I don’t love you guys. It’s just that I have to get myself together,’” she says.
She’s learned some tricks along the way, citing blackout curtains and sunglasses as especially helpful with her photophobia, or discomfort with bright light.
She hosts movie parties for her kids, in part so she can keep the lights dark. She attends events, even if she has to leave early.
“I try to show up now,” she says. “I used to hide it from family members and friends because I didn’t want to accept it. I didn’t know if people would understand. But now with the hemiplegic migraine and then the pressure migraine, I think that kind of got everyone’s attention, especially for those who have witnessed my attacks or even heard how severe they are. [Before], I think a lot of people thought, ‘Oh, she’s got a headache. It’s nothing. We all have headaches.’” She adds that there has been an outpouring of love and support from family and friends.
She’s had to make adjustments in her daily life, such as how she styles her hair. The braids she used to love tugged on her head and caused pain, and she can’t handle wearing headbands or scarves around her head.
Grace is especially sensitive to light, smells, and sound. Her youngest son once compared her to a dog. “He said, ‘Mom, I think you have ears like a dog.’ I said, ‘Why?’ He said, ‘Because the TV volume is on five, but you still hear it in your room.’”
She laughs recounting the story.
“I know it’s a serious issue. But I always try to put a smile on my face,” she says. “My family, they feel so uncomfortable at times because I was crying so much. I just try to ease their mind because they’re afraid. Even though I’m scared, I try to make the best out of it.”
Grace found that connecting with others going through the same thing was a game-changer when she joined a support group that had a Black woman as one of its leaders.
“I said, ‘Wow, someone looks like me that’s going through this.’ She understands the whole thing we go through about being an ‘angry Black woman.’ The treatment that we get. People think that when we go to the doctor, all we want is medication. No, I just want help.”
—Kirsten Ballard