By Melodie Narain-Blackwell, narrated by Michele Jordan
I am an educated black woman with good insurance from a good family that eats healthy. But it was still more than 30 years before I was diagnosed with Crohn’s disease. Often people think that late diagnosis happens to someone without these things, but what do you say about someone like me? Had I been diagnosed as a child, I certainly wouldn’t have faced as many challenges as I do today. That’s why my mission is to help other people with Crohn’s disease – especially people of color – feel seen and heard.
When I was about 5 or 6 years old, there was a knock on the bathroom door and I was asked if I was alright. I would stay there longer than normal. I remember having terrible stomach pains. As a child, I was told over and over again that I only had stomach problems. The doctors questioned my diet, but I didn’t eat badly. My family always cooked. I come from a multiracial family (my mother is Black and my father is Indian) and both sides of my family have cooked. My grandmother had a garden. I grew up with my sister and a single mom and she got up at 5:30 every day to cook for us.
When I was about 13 I remember being very tired and having some rectal bleeding. Doctors said, “It’s hemorrhoids” or I just “need more fiber,” so I took Metamucil. But nothing worked. I had many nights where I couldn’t sleep because I was in so much pain. I slept in the bathtub because it was cold and my body felt like it was on fire. I would go in with a pillow and blanket and go to sleep.
I told my mom, my teachers, and my cheerleading coach that I wasn’t feeling well, but since the doctors kept saying it was just a stomach issue or something I ate, I was told to go to school, work out , keep up .
My symptoms got worse when I went to college. I did my best to eat healthy—not on the typical college pizza diet—but I still struggled. The trek across the campus in New York City was awful. I slept in the bathroom a lot because I was just so exhausted. My grades were good or bad – I would get either an A or a D – not average. My professors sometimes offered flexibility, but more often than not I was punished for being late for assignments or simply missing classes because of my Crohn’s symptoms. During this time there was never a gap in my health care, but I still didn’t find any relief.
When I was diagnosed in my late 30’s I was so sick. I had stomach pains (almost every day) for 2 years and my rectal bleeding increased. I stuffed gauze in because I couldn’t control the bleeding. I had eye infections and swelling. I could not keep food down and had difficulty walking. When I went to the toilet, it felt like I was being sliced! A few times I suspected I had Crohn’s disease, but I didn’t know anyone who had it. That’s why representation is so important. Sometimes you have to see yourself to put the pieces together.
After years of being misdiagnosed with things like gout or being told to “push the inflammation out of my lips,” I was hospitalized in June 2018 with a temperature of 104F and severe pain. I had a golf ball sized abscess and needed emergency surgery. After that, my doctor finally recommended that I get tested for Crohn’s disease. In October of this year I was officially diagnosed. When people ask me how I felt when I finally had an answer in my mid-30s, I’ll say I felt Joy.
Having the kind of symptoms I’ve had for so long can throw you into a state of depression. You start to wonder if you’re doing something wrong. I knew I didn’t drink much. I didn’t eat badly. None of the reasons I thought or was told was the answer.
I had Crohn’s disease.
I have shared many of my symptoms and diagnosis on social media. People started contacting me out of nowhere to share their own stories and I started a Facebook group. I coached other women of color about the importance of health and was saddened to learn how many people felt lonely — or how I went undiagnosed for years.
In 2020 I started Color of Crohn’s and Chronic Illness (COCCI) because there were so many people who looked like me and felt lonely and unheard. After 2 years, we are a multi-million dollar organization serving hundreds of people through policy, research and patient support. It’s really my belief in God that got me to this point.
At my lowest point, I called off my engagement and thought I was going to die. Today I am a married mother of two young children (ages 2 and 8) and I have the opportunity to speak to people fighting Crohn’s disease across the country. I encourage people to be aggressive about their health and not give up until they get an answer. My life isn’t perfect. I still have symptoms but I’m pushing forward. I have victory and I must share it with others.