By Melodie Narain-Blackwell, as told to Michele Jordan
I am an educated woman of color with good insurance from a good family who ate healthy food. But it still took more than 30 years for me to be diagnosed with Crohn’s disease. A lot of times, people think a late diagnosis happens for someone without these things, but what do you say about someone like me? Had I been diagnosed as a child, I’m sure I wouldn’t have had as many challenges as I do today. This is why it’s been my mission to help other people with Crohn’s – especially people of color – feel seen and heard.
You Just Have Stomach Issues
When I was about 5 or 6, I would get knocks on the bathroom door asking if I was OK. I would be in there longer than normal. I remember having terrible stomach pain. As a child, I was told time and time again that I just had stomach issues. Doctors would question my diet, but I didn’t eat poorly. My family cooked all the time. I come from a multiracial family (my mother is Black and father is Indian) and both sides of my family cooked. My grandmother had a garden. I grew up with my sister and a single mom, and she would get up at 5:30 a.m. to cook for us each day.
When I was around 13, I remember having a lot of fatigue and some rectal bleeding. Doctors would say, “It’s hemorrhoids” or I just “need more fiber,” so I took Metamucil. But nothing was working. I’d have a lot of nights where I couldn’t sleep because I was in so much pain. I would sleep in the bathtub because it was cold and my body felt like it was on fire. I would go in there with a pillow and a blanket and go to sleep.
I would tell my mom, teachers, and my cheerleading coach that I wasn’t feeling well, but since doctors continued to say it was just stomach issues or something I ate, I was told to go to school, go to practice, push through.
College With Crohn’s
My symptoms got worse when I went to college. I did my best to eat healthy – didn’t do the typical college pizza diet – but I still struggled. Trekking across campus in New York City was horrible. I would sleep in the bathrooms a lot because I was just so exhausted. My grades were hit or miss – I’d either make an A or a D – no middle. My professors would sometimes offer flexibility, but most times I would be penalized for being late on assignments or just having to miss class because of my Crohn's symptoms. During this time, there was never a gap in my health care, but I still didn’t find relief.
Finally, a Diagnosis
By the time I was diagnosed in my late 30s, I had been so sick. I had stomach pains for 2 years straight (almost every day) and my rectal bleeding increased. I was stuffing gauze in because I couldn’t control the bleeding. I was having eye infections and swelling. I couldn’t keep food down, and I was having trouble walking. When I went to the restroom, it felt like I was being sliced! A few times I suspected I had Crohn's, but I didn’t know anyone who had it. This is why representation is so important. You need to see yourself in order to put the pieces together sometimes.
After years of being misdiagnosed with things like gout or being told to “squeeze the inflammation” out of my lips, I was admitted to the hospital in June of 2018 with a 104 F temperature and severe pain. I had a golf ball-sized abscess burst, and I needed emergency surgery. After that, my doctor finally recommended I get tested for Crohn’s. By October of that year, I was officially diagnosed. When people ask me how I felt to finally have an answer in my mid-30s – I say I felt joy.
My Mission Is Clear
Having the type of symptoms I did for so long can put you in a state of depression. You start to wonder if you’re doing something wrong. I knew I didn’t drink a lot. I didn’t eat poorly. None of the reasons I thought or were told was the answer.
I had Crohn’s.
I shared many of my symptoms and my diagnosis on social media. People began contacting me out of nowhere to share their own stories, and I started a Facebook group. I was coaching other women of color about the importance of health and was saddened to learn just how many people felt alone – or went undiagnosed for years, like I did.
In 2020, I started Color of Crohn's and Chronic Illness (COCCI) because of such an outpouring of people who looked like me who felt alone and unheard. After 2 years, we are a multimillion-dollar organization that serves hundreds of people through policy action, research, and patient support. It truly is my faith in God that has brought me to this point.
At my lowest, I called off my engagement and thought I was going to die. Today, I’m a married mom of two little ones (ages 2 and 8) and I have the chance to speak to people battling Crohn’s 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 pressing forward. I’ve got the victory, and I have to share it with others.
Photo Credit: martin-dm / Getty Images
Melodie Narain-Blackwell, founder and president, Color of Crohn's and Chronic Illness, Washington, DC.