Contributed by Melodie Narain-Blackwell
It should be no surprise that Black people have to work harder to attain and maintain suitable employment. Research shows that Black workers are less likely than White workers to get hired into stable, well-paying jobs. That has consequences. For me, I was always so driven to be successful that I wasn’t willing to pause to tend to my health. I did what I thought was right, and that was to shelf my health until I had time.
Note to self: There is always time for health!
With the reality of Black life constantly lingering, instead of taking time off to manage healthcare issues, I chose to work. It was a bad decision at best. I was suffering, every single day. My body was failing me, and I was failing it. I chose to work out of fear of losing my job or being deemed unproductive. This was yet another layer of how structural racism rears its head and causes more inherent suffering.
I was diagnosed with Crohn’s disease in 2018. Crohn’s disease is a type of inflammatory bowel disease, or IBD, which can lead to abdominal pain, severe diarrhea, and many other problems. It also puts people at a higher risk of developing colorectal cancer. But the road to diagnosis was long and marked with bias and disregard. I wasn’t prepared to deal with that, to be quite honest.
I had always been able to convey my thoughts and symptoms clearly. It wasn’t until I had three days of back-to-back rising fevers, a golf ball-sized rectal abscess that ruptured during an exam, and emergency surgery, that I finally felt seen and heard. Why did it take that much? I was eventually met with rapid weight loss, malabsorption, malnutrition, hair loss, and more.
Prior to the minor crisis that landed me in the hospital, I expressed to my physician that I had to hold the toilet seat or walls to use the bathroom every single time — it felt like knives were slicing my insides. I was filling the toilet with blood and was bleeding non-stop all day. I just knew that something was wrong, but I kept working through it all. I was presented with orders for tests and no results to follow.
I have read many stories about how implicit bias affects the health of Black women, but I hadn’t experienced it until this moment. The questions that rolled through my head were: Did this happen because I am Black? Am I being seen as a person who exaggerates symptoms? Will I be a Black woman who becomes a part of the “failed by healthcare” statistic? The questions began to paralyze my voice, but I didn’t let them. I was not going to be someone who idly stood by. I was going to be part of the change.
When I think about my health, there are now two reasons for me to stay on top of it. I am Black, and I have comorbidity. When I think about advocacy, I know that I have to be a voice for myself and my communities — Black women and patients of color. We are being left out and being left behind. We are not being provided with knowledge that increases our opportunities for health equity, and that narrative must change for ourselves and the future.
Instead of being disappointed, I decided to become an advocate. Where the doctors lacked the ability to educate me, I chose to educate myself. It has been several years since my diagnosis of IBD. I have not had any physician talk with me about my increased risk for colorectal cancer. I had to find that out on my own. To me, that is concerning. How many other Black patients with IBD are unaware of the presentations of colorectal cancer and their increased risk?
People are often told that IBD is not a death sentence, which is great to hear. We take solace in that. But it also stops us from researching and investigating whether or not we should be on the “lookout” for signs of anything else. Colorectal cancer awareness and knowledge are important because early detection is key in it being preventable, treatable, and beatable. The more we share, the more all communities can amplify the message to bring knowledge and support to save their loved ones.
Melodie Narain-Blackwell lives in the Washington Metropolitan area with her husband and two children. She’s the founder of Color of Crohn’s and Chronic Illness (COCCI), a nonprofit focused on increasing the quality of life for minorities who battle IBD and related chronic illnesses. She’s also the host of “What the Gut,” a show about digestive diseases on the Facebook platform, BlackDoctor.Org (BDO). Her passion is her family. When she’s not homeschooling, changing a diaper, or cooking a meal, she’s catching laughs and making memories with her loved ones.
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