Tag: Black Lives Matter

Living life unapologetically as a Black woman with Crohn’s disease

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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. JPixStudio-8924 copy

“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.” IMG_4657

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. IMG_1783

“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

Check out her website

 

Activism is a marathon: How to sustain momentum, while keeping IBD in check

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Our current reality and the actions, decisions, and efforts we are making are a marathon and not a sprint. Much like life with chronic illness, anti-racism is something that will be an uphill battle day in and day out. You don’t receive an IBD diagnosis and educate yourself and manage your disease for two weeks and think the work is done. You are forced to evolve, learn, see the world through a different lens, while adapting to a new normal.

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Created by @Ericiaa_ on Instagram

The racism that is a part of this country is not going to be eradicated by two weeks of social media posts and protests. But, each genuine and heartfelt decision from here on out has the power to make a huge change. By speaking up and not standing down. By recognizing your own privilege. By standing arm in arm with your peers who have suffered in silence for far too long.

Dealing with the overwhelming fatigue

Fatigue is heavy when you battle Crohn’s and ulcerative colitis, regardless of the current climate in the world. When you couple months of COVID-19 with visibly seeing the divide in our country and all the work that needs to be done, it’s overwhelming. Don’t burn yourself out, don’t feel like you aren’t able to keep up, don’t compare yourself to others.

In recent weeks, I’ve seen countless IBD patients apologizing for sharing their health struggles. I’ve seen people in hospital beds saying sorry for needing support as they head into surgery, start a biologic, or come to terms with their diagnosis. I’ve heard from people feeling guilty for needing a break from social media because the stress and worry is a trigger for their illness.

Chronic illness doesn’t take a break. Chronic illness thrives in conditions when we stop managing it and don’t make our health a priority. Chronic illness doesn’t care if there’s a pandemic going on around the world or a Black Lives Matter protest in your city that you want to be a part of.IMG-2685

It’s ok if you need to focus on you and your IBD. It’s uncomfortable seeing how divisive this world can be and the hurt so many of our friends and family face just for the color of their skin. If you’re like me, it’s made me question and rethink how I’ve navigated race all my life. I have black friends from high school that I just started having race conversations with NOW. I am 36.

Eddie

Friends since 2000. Just talked about race this week.

I have black peers in the IBD community who bring tears to my eyes with their pleas for support and great admiration for them using their voices and platforms to make a change and a paint a clearer picture for the rest of us.

I’ve started changing what I choose to watch on Netflix. We’ve watched “Dear White People” and “13th” after putting our kids to bed this week. We tuned in for the Sesame Street Town Hall on CNN about racism, even though our children are young. It’s never too early to start the important conversations with your family. I’ve started researching books with black protagonists for my kids that also discuss racism, after looking through their bookcase and realizing we only have two books with black characters.

Here are some recommendations I’ve received:

“A Boy Like You”

“Love”

“The Skin You Live In”

“The Day You Begin”

“The Snowy Day”

“Good Morning Superman”

Netflix cartoon: “Motown Magic”

Don’t burn yourself out

At the same time, we all, including myself, have a lot of work to do. This momentum, this energy, and this dedication is going to be challenging to sustain. We don’t want to burn out. We can’t put our IBD on the back burner. It’s up to us to realize when we need time to focus on our health and when we can use our voice and our heart to make a difference.

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Created by The Chronically Honest, on Instagram

If you’re feeling more symptomatic from the stress of these eye-opening and challenging days, give yourself permission to take a break from social media and the news. Your health and well-being come first, and you don’t need to feel guilty for that. If you are desperately wanting to participate in protests but worry because you’re immunocompromised and in danger of getting COVID-19, that’s understandable. Your work and your effort can be done safely at home.

You can be an ally. You can be a friend. You can be a patient. That priority list can be fluid and ever-changing. Take care of others, but always remember to take care of yourself.