By Melodie Narain-Blackwell, as told by Michele Jordan
I am a well educated woman of color from a good family that eats healthy food and has good insurance. But it was more than 30 years before I was diagnosed with Crohn’s disease. A lot of times people think people who don’t have these things have a late diagnosis, but what do you say to someone like me? If I had been diagnosed as a child, I believe I would not have faced as many challenges as I do today. That’s why I’m on a mission to help other people with Crohn’s — especially people of color — feel seen and heard.
you just have a stomach bug
When I was about 5 or 6 years old, I would knock on the bathroom door and ask if I was okay. I’ll be there longer than usual. I remember having terrible stomach pains. As a kid, I was told time and time again that I just had a stomach bug. Doctors will question my diet, but I’m not eating badly. My family cooks all the time. I come from a multiracial family (my mother is black and my father is Indian) and my family cooks both sides. My grandmother had a garden. I grew up with my sister and a single mom who woke up at 5:30 every morning to cook for us.
I remember when I was around 13, I was very tired and had some rectal bleeding. Doctors would say, “It’s hemorrhoids” or I just “need more fiber,” so I took Metamucil. But nothing works. I couldn’t sleep many nights because I was in so much pain. I would sleep in the tub because it was cold and my body was on fire. I would go in and sleep with a pillow and blanket.
I would tell my mom, teachers, and my cheerleading coaches that I wasn’t feeling well, but since the doctor kept saying it was just a stomach bug or something I ate, I was told to go to school, to practice, to keep at it.
Crohn University
My symptoms got worse when I was in college. I’ve done my best to eat healthy — without adopting the typical college pizza diet — but I’m still struggling. Hiking around campus in New York City is scary. I often sleep in the bathroom because I’m so tired. My grades were up and down—I was either getting an A or a D—there was no middle ground. My professors sometimes offer flexibility, but most of the time I get punished for being late for assignments or having to miss class because of my Crohn’s symptoms. All this time, I’ve never had a gap in my health care, and I still haven’t found relief.
Finally, the diagnosis
By the time I was diagnosed in my 30s, I was very sick. I had stomach pains (almost daily) for 2 years and increased rectal bleeding. I’m wearing gauze because I can’t control the bleeding. I have eye infection and swelling. I couldn’t eat and had trouble walking. When I go to the bathroom, it feels like I’m being cut! There have been a few times when I suspected I had Crohn’s disease, but I don’t know anyone who has had it. This is why representation is so important. Sometimes you need to see yourself to put the pieces together.
After years of being misdiagnosed as gout or told to “squeeze the inflammation of my lips,” I was admitted to the hospital in June 2018 with a 104F temperature and excruciating pain. I have an abscess the size of a golf ball and need emergency surgery. After that, my doctor finally recommended that I get tested for Crohn’s disease. By October of that year, I was officially diagnosed.When people ask me how I feel in my 30s when I finally have an answer – I say I feel joy.
my mission is clear
Having symptoms like the one I’ve had for a long time can put you in a depressed state. You start to wonder if you did something wrong. I know I don’t drink much. I didn’t eat badly. None of the reasons I thought of or was told were the answer.
I have Crohn’s disease.
I shared many of my symptoms and diagnoses on social media. People started contacting me everywhere to share their own stories, and I started a Facebook group. I’m coaching other women of color on the importance of being healthy, and it’s sad to learn how many feel alone — or undiagnosed for years like me.
In 2020, I started Crohn’s and Chronic Illness of Color (COCCI) because of the large number of people like me who feel alone and neglected. 2 years later, we are a multi-million dollar organization serving hundreds of people through policy action, research and patient support. It really is my faith in God that has brought me this far.
At my lowest point, I called off my engagement and thought I was going to die. Today, I’m a married mom of two kids (ages 2 and 8) and I have the opportunity to speak with people across the country battling Crohn’s disease. I encourage people to be proactive about their health and not give up until they have answers. My life is not perfect. I still have symptoms, but I’m moving forward. I have achieved victory and I must share it with others.
