I remember the first time I felt racism in my oncologist’s office.
I had just completed four rounds of a combination chemotherapy drug called AC (adriamycin and cyclophosphamide), aptly nicknamed “the Red Devil.” That was followed by a regimen of a chemotherapy drug called Taxol, and a drug called Neulasta, which was supposed to prevent my white blood cell count from dropping too low.
But nothing had gone right.
The Red Devil was, indeed, red and evil. The color, coursing through the IV, was red like Kool-Aid, but without the fun songs from a walking pitcher. During my second round of Taxol treatment, I had an allergic reaction. The chemo nurses pumped me with Benadryl until I felt more corpse-like than human. After that, they slapped my Neulasta patch on me and sent me home.
That’s when things got horrific. I was in a groggy Benadryl and steroid haze, and every single bone in my body detested me. The pain was outrageous. I knew I should go to the ER, but I dreaded it.
By the time I finally surrendered to going, I was gagging and dry heaving from the pain. I passed out upon arriving and awoke to the kind nurses at my local hospital holding my hand. They were giving me only low doses of pain medicine, since they knew I hated it.
I learned that, thanks to Neulasta, my bone marrow was working overtime to help my counts go up, but something had gone wrong. A normal white blood cell count is between 4,500 to 11,000, according to UCSF Health. After checking into the ER, I learned that mine was 20,000 and rising. My white blood cell count went as high as 30,000.
The pain was excruciating. The nurses tried various pain medication doses and combinations, but nothing helped. I was hospitalized for five days. The pain meds made me so loopy that I would compliment every hospital staff member or visitor who came in. I was all funny and sweet on those meds, but I hated how it made me feel and I just wanted to go home and see my babies.
A Dismissive and Doubtful Oncologist
When I finally had an appointment with my oncologist in Cleveland, I walked in with my husband and mom and sat down. My oncologist looked at me and shook her head. “What happened to you? What is really going on?”
I looked at her confused.
Why did it feel after all the trauma I had gone through that I had somehow done something wrong? The meeting went on as she started to hint that I was simply seeking drugs and not really in that much pain.
“I’ve never heard of anyone being in so much bone pain from Neulasta!” She looked over her glasses at my puzzled face, “What is the real problem? I don’t get it,” she said, shaking her head and looking annoyed.
I felt so stupid in that meeting.
There is something that happens when are plunged headfirst into a new diagnosis — we forget that medical personnel are humans too. They have biases and life experiences that can affect the way they see us and treat us. As my oncologist sat across from me with narrowing eyes while doubting the validity of my pain, I felt myself beginning to believe her for a moment.
My mom’s voice brought me back to reality as she began questioning why my oncologist didn’t believe me. The response to those questions was shock and then offense. My oncologist ended the meeting abruptly, and I was so ashamed and confused that the abrupt ending was a welcome relief. I walked away with the sad realization that I had allowed her to bully me into thinking I was weak, and that I just wanted pain meds for kicks and giggles.
A Pattern of Racial Barriers to Cancer Pain Management
It wasn’t until I dove into the breast cancer community that I realized that the white blood cell count reaction I experienced was actually very common.
What made my doctor deny my pain and focus on the pain medications she thought I was just wanting? What made her think she could invalidate my feelings and discount my experience, especially since it was one that many patients have had?
After speaking with some of my friends who were breast cancer patients and also those in the medical field, I started to recognize a deadly pattern. Most of my friends of color had countless stories of not being believed when it came to their pain during treatment. Two of my friends who are in the medical field further validated my fears when they spoke of the inconsistencies they’ve witnessed in the believability of Black, Indigenous, and People of Color (BIPOC) patients versus Caucasian ones when it comes to pain management.
I wish I could chalk it up to anything else, but after another sit-down with this oncologist at which I brought up more concerns, I realized that her biases went beyond pain meds. She was part of a system that was hurting Black and brown lives way before she knew my name.
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Systemic Racial Disparities in Healthcare
Did you know that Black women are 40 percent more likely to die from breast cancer than white women, despite having similar incidence rates? Research shows that Black women are more likely to be diagnosed with breast cancer at a later stage and are less likely to survive regardless of the stage of cancer at diagnosis.
There is a term, “scientific racism,” which names the phony practice of using science to reinforce racial biases. According to a January 2019 article by McGill, scientific racism was used to justify the African slave trade. Scientists argued that there were biological differences between Black people and white people and that Black people felt less pain. Following the end of slavery, scientific racism continued to run rampant and was used to maintain social hierarchies.
How does this affect modern-day healthcare? In immeasurable ways.
A study of medical students published in April 2016 in PNAS found that half those surveyed believed that “Black people’s skin is thicker than white people’s.” The study concluded that falsehoods surrounding pain for Black individuals led to ineffective treatment.
Not surprisingly, a study published September 2019 in the American Journal of Emergency Medicine discovered that Black ER patients were 40 percent less likely to receive pain medication than white patients.
Although we’d like to believe that healthcare professionals are unbiased when it comes to race and gender, bias can be implicit. A March 2017 review published in BMC Medical Ethics found racial and ethnic bias in 34 out of 42 peer-reviewed articles around healthcare professionals’ attitudes and treatment decisions.
Racial Bias Training and Where We Can Go From Here
Medical professionals are humans just like you and me, so racial biases will happen, and the solutions aren’t simple fixes. Recognizing that we have a problem is key and is the first step toward change. I believe medical institutions need to make racial bias training available and mandatory and give voice to their minority members to gauge how the institution is doing. Making efforts toward dispelling the misinformation about race and pain within medical education is essential.
As minority patients, we must recognize that our doctors and nurses will undoubtedly have some unconscious bias that may rear its ugly head at times. Learning to advocate for ourselves is paramount! Speak up if you feel like your concerns aren’t being addressed effectively. Don’t allow shame to silence you when you feel the need to speak up. Take notes and bring someone else along to your appointments to be a second set of ears.
I truly believe we have to bring some of these dark practices and experiences to light in order for us to start on a path to truth and healing. The racial disparities will not end tomorrow, but with all of us doing our part in recognizing their existence, I think we can move forward toward change.
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