Amy Mason-Cooley was in so much pain this past June that she couldn’t walk, a pain that she describes as feeling like “being sliced open with a rusty hand saw.”
Her husband rushed her to USA Health University Hospital, a familiar trip for the Mobile, Alabama resident. Mason-Cooley, 37, regularly experiences excruciating pain as a result of sickle cell disease, a disorder in which abnormally crescent-shaped red blood cells can get stuck in blood vessels and prevent the flow of blood and oxygen to parts of the body.
After 24 hours at the hospital, her pain still hadn’t subsided, but her doctor decided to take her off of medications despite her pleas that she was unable to walk and was still in crisis.
“As soon as he stopped all my medications, my blood count started dropping,” she told TODAY. “It dropped down (low enough that) they started talking about doing a transfusion.”
She advocated for herself, telling the doctor, “I don't want you to be in control of my care because you are not listening to me.”
He ignored her requests and, according to her, even smirked in response. It wasn’t until other medical staff came in and got her back on her medication hours later that she finally stabilized.
“I don't want you to be in control of my care because you are not listening to me.”
Mason-Cooley filed a complaint with the hospital, and recounted her experience in a Facebook post that was shared over 13,000 times before she made it private. The post hit a nerve for numerous people across the country who have been denied appropriate care after their own pain was dismissed.
While the hospital did not return a request for comment, they did post a statement to their Facebook page saying they “investigate all complaints,” after Mason-Cooley’s post went viral.
A shared experience among Black women
Mason-Cooley’s experience is all too familiar to other Black women, who are caught between being considered impervious to pain because of their race, and overly hysterical about pain because of their gender.
“Pain is an area ripe for implicit bias having an impact because it's an extremely subjective area,” said Janice Sabin, a research professor at the University of Washington in Seattle, who studies implicit bias in medicine. “If a person is bleeding, you can figure out how much blood is lost. But someone who has lower back pain, for example, it's a very subjective measure.” Additionally, she said, cultural differences in how people express their pain and how doctors register that expression, can impact pain management care as well.
Mason-Cooley says no matter how she expresses her pain, she runs the risk of being dismissed.
“There’s so much judgment. If you're too calm, then they say, ‘Oh, you're not sick. You don't look sick.’ And then if you're crying and moaning, they say you're exaggerating. I don’t really know what they want from us,” she said, exasperated.
This particularly impacts people suffering from diseases like sickle cell disease, which almost exclusively affects Black people, or fibromyalgia, lupus and endometriosis — diseases that are often misdiagnosed and misunderstood.
Medicine’s history of bias
Medicine has a history of bias, the vestiges of which we are still grappling with today.
A 2016 study found that nearly half of first and second year medical students believed that Black people have thicker skin than white people, and perceived Black people as experiencing less pain than white people, an idea born from 19th century experiments that were conducted by a physician named Thomas Hamilton. He was a wealthy plantation owner who regularly tortured an enslaved Black man named John Brown, creating blisters all over his body in an effort to prove Black skin went deeper than white skin.
A 2019 study published in the American Journal of Emergency Medicine analyzed data from 14 previously published studies on pain management and found that Black patients were 40% less likely to receive medication for acute pain compared to white patients, and 34% less likely to be prescribed opioids.
“The field of medicine was very complicit historically in racial categorization and biological concepts of race,” said Sabin. Medicine’s role in espousing biological differences between Black and white people laid the foundation for justifying slavery and the inhumane treatment of Black people. Dr. James Marion Sims, known as the founding father of gynecology, conducted experimental surgeries on enslaved Black women without anesthesia, developing a body of work that continues to misrepresent how Black women experience pain.
The slavery-era belief that Black people were hypersexual and simultaneously less intelligent than white people also continues to impact the care that Black women get.
"With Black women there is an assumption that they don't know their bodies, that they don't understand, that they're not educated about their bodies,” Dr. Colene Arnold, a gynecologist who specializes in pelvic pain disorders, told New Hampshire Public Radio’s The Exchange podcast. She pointed to a study that found Black women are less likely to be diagnosed for endometriosis than white women when they were experiencing pelvic pain, and instead, misdiagnosed as having pelvic inflammatory disease, which is typically sexually transmitted.
“When we look at patient testimonies, particularly from Black women ... We're seeing that these typical tropes of Black women are used ... that they are hypersexualized and that if they have some sort of illness or pain, that it's likely self-inflicted in a sense that they did something wrong,” Keisha Ray, an assistant professor at the McGovern Center for Humanities and Ethics in Houston, Texas, told The Exchange.
'I'm here because I'm sick'
In another pain crisis just last year, Mason-Cooley recalls being left in a hospital waiting room for 10 hours until she passed out from pain, only to wake up to a nurse telling her, "This isn’t a pain clinic,” implying that she was seeking drugs.
“I have straight up told doctors and nurses, ‘If I wanted it to get high, I could do it on the streets for cheaper, with less judgment. I’m here because I’m sick,’” Mason-Cooley said.
Others on Mason-Cooley’s Facebook thread posted about experiencing pain in the middle of the night and forcing themselves to wait until the morning to go to the hospital, because they knew a 2 a.m. trip to the emergency room for severe pain would only result in accusations that they are addicts. It’s a lot of added stress to deal with when you’re struggling with intense pain.
And having untreated pain can have long-term physical, psychological, social and economic consequences. Additionally, say the authors of the 2019 study, pain that’s dismissed causes patients to have less trust in the medical system. That was what Sevon Blake, a 29-year-old Black baker in Queens, New York, experienced.
“I used to have a lot of lower abdominal pain, and I brought up the concern to my doctor multiple times. He would say, “‘It's probably just a little gas, you’re fine’, and just kind of like brush under the rug.”
"... It's gotta stop. We're asking you to listen to us."
Blake switched from her Asian male doctor to a Black female doctor who took her concerns seriously. Her new doctor listened to her, discussed her options and eventually referred her to a gastroenterologist. It turns out Blake has a gluten intolerance, an issue that was managed with dietary changes. “I didn’t feel like I could talk to my previous doctor, if he was just going to dismiss me, then I’m not going to be proactive and tell him what I’m feeling.”
Mason-Cooley, a vocal advocate for the sickle cell community who spoke on Capitol Hill about the disease in 2018, said all she wants is to be heard.
“I don't want to undermine any doctor or any nurse because it’s a noble job,” she said. “But I know people with sickle cell that have actually died from a heart attack because the pain was so excruciating. No one took it seriously and they passed away. So it's gotta stop. We're asking you to listen to us. We just want to be treated the way you would want your own family treated.”