When Melodie Blackwell was initially diagnosed with Crohn’s disease in October 2018, she felt alone. Not because of how isolating IBD can be, but because she couldn’t find many people who were speaking about their journey from the perspective of what it’s like to be a Black or Brown woman in the IBD community. 
“When I looked for information from the IBD organizations, I felt like there was little to no one who looked like me. Sometimes, and history shows this, we can’t be unapologetic about being a person of color. We must tell our stories in a way that seems more digestible to White America. When I started sharing my journey, I wanted to reach those in the minority community from various walks of life who felt isolated or alone, to let them know they weren’t by themselves and there is a space where they belong. With my non-profit Color of Crohn’s and Chronic Illness (COCCI), I believe that’s what I have been able to do,” says Melodie.
Dealing with feeling “uninvited”
As a wife, mom, entrepreneur, Black woman, and Crohn’s warrior; Melodie’s view of the IBD community has multiple perspectives. At this time, inclusion and diversity isn’t one that’s at the top of the list. “In order for any organization to be inclusive, they have to have to have a deeper understanding of a community. And when it comes to those who are in the Black community, most people don’t go where they don’t feel invited. Where does that thought process come from? Let’s talk about history and “whites only” venues, seating on the back of the bus, segregation ending less than 100 years ago, and the Tuskegee Experiment to name a few things. Many of us still have family members who can discuss all of the aforementioned like it happened yesterday.” 
When it comes to Melodie’s thoughts on not feeling invited, “I am fine with that, because personally, I go where I am not invited. Not having an invitation doesn’t mean that I don’t belong. But as a culture, that’s not a resounding thought process. I know that that can seem odd, it’s a systemic issue. If you don’t know the culture, cultural differences, and historical oppression, you won’t understand that. There are some deeply rooted healthcare adversities – they live on today.”
Leading up to her diagnosis and even today, Melodie has dealt with ignorant physicians along the way. Her Crohn’s presented differently than most. It started with random body parts swelling. She had a doctor tell her she just needed to “squeeze those parts to help the blood flow”. She’s had doctors display their implicit bias and not listen…which resulted in abscesses bursting in her colon and emergency surgery.
Health equity isn’t given, it’s fought for
It’s the inequity that has inspired Melodie to go above and beyond and amplify her voice to show others they can do the same. She launched Color of Crohn’s and Chronic Illness (COCCI) to help lift people up and let them know they aren’t alone and they didn’t choose the challenges before them. She’s received countless messages from people embarrassed about their symptoms. Melodie is driven to show there’s no reason to feel ashamed about your IBD and she’s focused on creating a space that feels safe to get answers and receive help physically and mentally. 
“I want to empower people of color and beyond, to take control of their healthcare and not feel like they are a victim. I want them to have the resources that they need. I want COCCI to be readily available to help them find doctors, learn more about healthcare, provide a safe space to express their thoughts, help them advocate/lobby for their needs – I want health equity and to decrease the undeniable disparities in this community.”
Don’t be afraid to live
As an IBD mom and patient advocate, Melodie’s main advice is to live. IBD and chronic illness causes all of us to make changes and adjustments throughout the process, but we are still here, and we still can have full lives.
“Some days will be tougher than others, but a mindset that says, “I choose Life” every single day, will change your life in the absolute best way,” says Melodie. “You set your limitations, and you determine your victories; don’t let IBD take that away from you.”
You can follow Melodie and COCCI on Instagram:
@melodienblackwell
@colorofcci
His disease had gone unmonitored for years and his new doctor was performing a colonoscopy to see just how bad his IBD had gotten. We were unaware that he had developed a stricture that was so severe that when she pushed the scope through, it nicked the wall of his intestines, causing a perforation and bacteria to get into his bloodstream. Within 45 minutes of waking up from the procedure, he had spiked a 104-degree fever and kept telling me and the nurses he thought he was dying. I was TERRIFIED. But I also found myself motivated by the fear and the anxiety I felt. 
Referring to people with any chronic illness or disabilities in this way is not only hurtful, but extremely ableist. You can’t assume everyone with IBD is going to need a caregiver in a partner. If the author had any idea about how Crohn’s manifests, he would know that the disease is a rollercoaster…oftentimes years of being able to manage, followed by hardships, setbacks, and flares and back again.
When I’m part of a photo grid holding up a sign alongside fellow advocates…and it’s a bunch of white girls, it makes me feel out of touch.
There’s a level of empathy and understanding that makes you feel like you are home.
