Addressing Treatment Inequities for BIPOC after a Difficult Road
Several years ago, at 35, Melodie Narain-Blackwell was working in Rockville, Maryland, for a real estate investment trust company. She also owned a restaurant. She had a 4-year-old son Zaden, and she danced, danced, danced. Tap, ballet, jazz, you name it.
Stories were always accumulating, and she made sure to slow down, to let them absorb. “Moments are very important in my life,” she says. “I never want to minimize how maximum they are.”
Upon just meeting Melodie, you’d observe her laugh, which is contagious, and a tad hoarse from her round-the-clock energy. And her haircut, which is quite dope. But there’s also the stuff you wouldn’t know about at first glance. The stuff lurking. As people in the chronic illness and pain communities know: while the illness (for Melodie, it’s Crohn’s disease) may be invisible, the moments—the memories—they are not.
Dismissed at an Early Age
Take, for instance, some of Melodie’s earliest memories: inexplicable stomach pains as early as 6 years old for stretches as long as a month.
“I would lay down all day,” she says. “I would take a blanket and pillow in the bathtub because my body felt so hot and the tub was cold and soothing.”
This was the late ’80s, at a time when little was known about her condition, and even less so among the Black community.
“Maybe you ate too much candy,” she was told. The closest Melodie came to an explanation was that her grandmother had “colitis,” a term that was thrown around loosely.
“‘Oh, Grandma is having a little bit of colitis today; she needs to go lay down.’ That’s what people would say,” Melodie says. “Nobody knew what that meant. My grandma didn’t even know what that meant. She just said it. So ginger ale and saltines, being medicine in the Black community, that’s what we had. This is how we attempted to manage this.”
At 13, Melodie spoke to a gastroenterologist, who told her to take a fiber supplement used to treat constipation. Her condition worsened. During the course of the 25 years that she went undiagnosed, Melodie experienced rectal bleeding, chronic eye infections, mouth ulcers, yellowing and blotchy skin, hair loss, fatigue, fistulas, night sweats, and malabsorption, which led to bathroom urgency minutes after eating. Her condition ultimately manifested in arthritis, robbing her of mobility.
Eventually, Melodie walked with a cane, or crawled. She had 64 ounces of fluid removed from her knee. She lost 35 pounds in 6 weeks.
From a very young age, her son Zaden would coach her up the stairs: “You can do it, Mommy, you can do it!”
Eventually, she went to a surgeon because of nonstop rectal bleeding and a burst abscess. While operating, the surgeon found eight fistulas, which are indicative of Crohn’s disease, and he referred Melodie to a gastroenterologist. At 35, she finally had a diagnosis.
For BIPOC, Barriers to Treatment
But a diagnosis did not help the lack of care. Melodie, now 39, recently went three weeks without a bowel movement. As the first week went by, Melodie’s physician said, “Try MiraLAX, then give it a few days.” Then, a few more days. Days. At 21 days, she finally called her surgeon, who told her to go directly to the emergency room, where they took X-rays and were able to resolve the issue without surgery.
It was one of many manifestations of the difficulties people of color face in seeking treatment.
“I don’t think my doctor was qualified to manage what I, and patients like me, go through,” Melodie says. “We’re not regular patients.”
Having gone until age 35 before being diagnosed, Melodie had known for a long time that the challenges of her health care experience paralleled those of many other people of color. Fortunately, Melodie had already been building toward a life of advocacy, ever since a conversation she had with God.
Creating a Voice for Others
Melodie began sharing her chronic illness story on social media and received messages from BIPOC (Black, Indigenous, people of color) asking for advice.
“For the longest time, Black culture was ignored because these digestive diseases were being labeled as white diseases, so we were disqualified from the knowledge of the disease and were therefore disqualified from the disease space,” she says. “This leads to suffering, wrong diagnoses, and even unnecessary surgeries. When people in the BIPOC community finally get the courage to seek help, and they are told, ‘Take a couple Motrin, take some Tums, and you’ll be fine,’ and they keep deteriorating, now they’re wholly put off by the health care system and their experience, and are fearful of persisting. This is, in part, why medical mistrust exists.”
Melodie started a Facebook group for BIPOC with IBD and Crohn’s, and the stories she read were overwhelming: people waking up with two feet of their colon removed, still undiagnosed, only to get released from the hospital to become even more sick.
“I read a story of one woman who was crying for two days,” she recalls. “They told her to drink magnesium phosphate. She got emergency surgery, and her colon was so shredded it looked like chitterlings. As they’re removing it, it’s just tissue.”
Melodie realized that a forum for people to commiserate and flounder in the unknowns of their disease was not enough.
“I was reading all these stories and I said, ‘God, what do I do? My life has always been where the money resides. I’m for profit.’ And God said, ‘Oh, but you’re not. That $600K you made as an entrepreneur, it’s time that you pour it into the community.’”
So in 2019, Melodie founded Color of Crohn’s & Chronic Illness (COCCI, cocci.org), which aims to improve the quality of life for BIPOC affected by IBD and chronic illness. It’s the first organization of its kind. COCCI held its first annual patient symposium in September of 2021 in Washington, D.C., with major pharmaceutical sponsors. Melodie described it as the “first glimpse of what patients of color look like in this disease space.”
There was a DJ. There was bomb food. There was an equity wall, built by blocks with the names of patients on them. And, perhaps most essentially, there was poop decor.
Don’t Stop Dancing
Reflecting on the journey that has led her through 35 years of undiagnosed pain, to a successful entrepreneurial career, and finally to the founding of a nonprofit, Melodie says, “I’m grateful I didn’t know this much about the disease when I was younger. Would I have drawn a line in the sand then? Would I have eventually said, “I’m standing up for the Blacks, the Hispanics, the Indians, and said, ‘We won’t take this shit anymore!’ Literally.”
Her positivity and advocacy are boundless. She and her husband Ronald have two beautiful children, Zaden and Zarie, who’ve learned through their mother the importance of compassion. And now a community whose members have been historically disqualified has a raw, immutable voice fighting for real change.
“My best days are when I hear community members tell me, ‘Melodie, I had a really successful doctor appointment,’ or ‘Melodie, I found hope in this community,’” she says. “A good day for me is when someone I’ve been praying for, and praying with, gets a glimmer of hope.”
Melodie still has her bouts and flare-ups, but she is mobile. She is smiling. She is dancing again.
“When I dance, I’m filled with fire and joy and an explosion of: ‘This is life,’” she says. “Sometimes you’re dancing in the rain, sometimes you’re dancing in the storm, but just keep dancing—because as long as the music is going, life is going.”