Melodie Narain-Blackwell was diagnosed with Crohn’s disease at the age of 36, thirty years after her symptoms began. Facing this health challenge head-on, Melodie become a passionate health advocate for people of color who battle chronic illnesses.
Melodie launched Color of Crohn’s and Chronic Illness, Inc (COCCI) in September 2019; a nonprofit working to advance the quality of life of minorities that are facing gastrointestinal and other debilitating illnesses.
Tells us more about your diagnosis of inflammatory bowel disease (IBD).
I was diagnosed with Crohn’s disease when I was 36 years old. While I have presented symptoms since I was 6 years old, it was never investigated, it was always assumed to be internal hemorrhoids or something that I had eaten. I believe that my race certainly had a hand in my delayed diagnosis, both from a patient perspective and a provider perspective. From the patient side of things, my family wasn’t educated on IBD nor was there any opportunities for them to be educated. The idea of a “disease” was never presented as the cause for my symptoms. From the practitioner side, the bias from me being a person of color and the lack of education that practitioners have been provided with on IBD in communities of color. As a result of both of those situations, an adult who was diagnosed with extremely complicated fistulizing perianal disease, and quite a bit of extraintestinal manifestations (EIMs).
What has your journey with IBD been like?
My journey with IBD has been filled with ups, downs and turning things upside down. To know that I suffered for so many years with a disease that could have been diagnosed, at least when I was 13 years old at the onset of rectal bleeding, was challenging. There were times when I had to beg my teachers to take my papers, in college, because I couldn’t walk across New York City to deliver them. I didn’t have the opportunity to function with understanding, but instead, overcoming. There were many days, as a teenager, that I tried to tell myself that I was making this up; that my stomach wasn’t hurting as badly as I thought it was. When I finally got diagnosed, I had to unpack those things, those years, those traumas. And, I did just that. What I know and believe, there are no mistakes and there was a reason for finally getting diagnosed. My team of physicians are amazing — they work well together for me and I know they have my best interest in mind.
I believe that it’s important to understand that for reasons like being misunderstood, misrepresented, disregarded, minimized; providers have to listen to black patients with finely tuned ears. There is a lot of, well, hurt that has been delivered by the medical system. It was built on these hurts, and some people are still living through those challenges because, unfortunately, they are still being delivered by health care providers and/or the stories from family members are still in the homes. Delivering proper care is multifactorial and transitional — when we shift from transactional patient care, we can deliver on the transition of patients to whole wellness.
What led you to patient advocacy?
If I can be honest, I didn’t see myself here. I didn’t see myself in a space where I am the founder and president of a nonprofit organization focused on creating equity and opportunities for marginalized and disenfranchised patients/families. I always used my voice. I always stood in the gap to support others. But, creating a nonprofit was not in my plan.
After being diagnosed, I shared my story and that led to the creation of a Facebook group. Once the group started growing, it was as if my eyes were widening to the physical “hell” that was occurring with black/brown patients who had IBD. It honestly made me re-examine what I had been through because I was moving around like I hadn’t been suffering for over 20 years, and I was just grateful to have an answer. I looked around and I couldn’t find any direct resources or education for this community — I decided to create them. I realized after a few months that we couldn’t sustain this way or bring about the change that was necessary if we didn’t move into advocacy. We began that process in 2019 and in 2020, we received our designation as a nonprofit.