Life as a Black Woman With Crohn's
This Crohn’s disease advocate shares her experience with a chronic condition and her fight against racial injustice.
Shawn Bethea has a lot she wants to share with the world. The 28-year-old Crohn’s advocate and activist uses her blog and Instagram account (@twofourth_, named to honor her great-grandmother’s birthday) to educate patients and healthcare providers on IBD and racial injustice. Bethea has lived with IBD since 2009, and her reality as a Black woman has impacted the way she’s treated in hospitals, the way she is forced to present her emotions, and the way she thinks about her role in the world. It has also impacted her life with Crohn’s disease.
We spoke with Bethea about her chronic journey, the ways her Crohn’s and her race inherently intersect, and what can be done to ensure better treatment for patients of color.
When did your Crohn’s journey begin, and how did you become an advocate?
My journey began when I was a child. In my early teenage years, I first began to show symptoms: I had abdominal pain, no real appetite, constant exhaustion, and later began losing a lot of blood. After battling with my body and the healthcare system for years, I was diagnosed (originally) with ulcerative colitis at 17 years old.
Unfortunately, my condition still wasn't improving. I had many complications that led to new treatments, and in 2014, I prepared for surgery to have my colon and rectum removed. It wasn't how I'd ever imagined my life, especially not in my early twenties. I was scared. I didn't know how to handle things, and I also didn't know anyone who'd gone through it before. I took to social media to share my experience, and through that, I made my first real [Irritable Bowel Disease] IBD friend, who also had a j-pouch and served as an advocate in the community. She inspired me to continue speaking.
About two years after the surgery that really started my advocacy, my condition again began to take a turn. Although this time wasn't as bad as originally being diagnosed with IBD, I saw changes in myself and my body. I was in more pain, more often – which was very unusual for being post-j-pouch surgery, plus I was doing mentally and physically better than I'd ever done in my life! I was forced to part ways with my second GI, who couldn't pin down what was going on or why my body would suddenly reject my j-pouch. Ultimately, I was referred to the IBD specialist I see today, and within a few months, my diagnosis was changed to Crohn's disease.
I now use my voice not only to empower other patients, but to partner with healthcare and pharmaceutical companies as well. The goal is simple: better outcomes and experiences, more representation, awareness–and hopefully, a cure.
When did you decide to start using your platform to speak out about Black lives and racial injustice?
My great grandmother passed away a week before the murder of George Floyd, which made an already difficult time much more heartbreaking. My great grandmother hated seeing the direction the world was going in, and always spoke her mind and fought for what she was passionate about. After the murder of Trayvon Martin, she sat me down and told me his killer would get off, but I didn’t believe her. I told her there was no way any jury would allow a grown man to murder a child in cold blood. I remember like it was yesterday, her explaining to me that that’s just how life works for Black people. She ended up being right. He got off.
I want to honor my grandmother's legacy by creating the world she deserved to see when she was here. I want to use whatever resources I have to make this world a better, more tolerant, and safe space for Black people. I also pray I never see the day I must tell my children, grandchildren, and their children "how life works for Black people."
You’ve written about how your Crohn’s and race aren’t separate parts of yourself: they’re inherently connected. How do these two facets of your identity work together to shape who you are?
Being not only a woman, but a Black woman who is also living with a chronic illness is very lonely. In general, I feel misunderstood, like the world has this perception of "me" that isn't really me. A lot of people have already decided who I am and what I'm about before I even enter the room, whether they realize it or not. That's solely my experience as a Black woman. Throw in a chronic, autoimmune disease that even doctors are still trying to figure out... It's lonely. It's a life that requires constant explanation, advocacy, and flexibility.
What is the biggest challenge you face daily as a Crohn’s warrior? What about as a Black woman?
My biggest challenge living with Crohn's disease is knowing when. When should I rest? When is it time to call a doctor? When is the best time to take my medicine (which suppresses my immune system) during a pandemic?
My biggest challenge as a Black woman is finding where I fit in. It's hard to feel like you belong in a society that was built against you. I have to hide certain parts of myself at work and during events and conferences. I have to be a more tolerant and patient version of myself in corporate America. If I mention something is racist, I'm seen as "sensitive" or "angry." In this world, a Black woman who shows the slightest bit of dissatisfaction is labeled "aggressive." So yes, I have to constantly explain myself. And in these situations, which would cause any human being to become frustrated, I am forced to withhold emotion. The moment I show it is the moment I'm told to "calm down,” or worse, ignored completely.
On the flip side, I have to become the most outspoken version of myself when I visit a healthcare facility, otherwise I won't be treated properly. I have to prove my pain by exaggerating my experience. I'm constantly adjusting myself to fit my environment, and at times I just want a place to be me.
I know you’ve been attending protests. You’re at high risk for COVID-19–how are you thinking about that in this moment?
I don't think anyone wants COVID, but that's not the only thing I am high risk for. COVID is in the back of my mind as I protest in the same way that racial bias (whether conscious or unconscious) is in the back of my mind as I interact with law enforcement. In the same ways that I worry I will face a deadly outcome by contracting COVID, I also worry about facing a deadly outcome being pulled over by the police.
Do you ever second guess attending protests? Do you take any special precautions outside the norm?
I second-guess protesting because I'm human. I'm terrified of COVID, and I'm also autoimmune. But every time I began to second guess my decision, I remind myself of everything my ancestors risked to get us this far: my great grandmother's grandmother and those before her. I remind myself of the man murdered in the streets as an officer kneeled on his neck with no concern for the life he stole. I remind myself that although COVID is terrifying, the thought of my children and their children watching a similar video during their lifetime is more heartbreaking.
My voice and my platform are small. I am small. But I matter. Any way I can get involved, anything I can do to make this world a better place for people of color–more specifically Black people–I will do it.
How can fighting racism ensure that people with chronic conditions are treated and represented equally?
I believe the fight against racism starts by ending the performance, and it starts by taking a hard look at one’s self. Within the healthcare system, it starts with doctors ending the trend of taking a knee on Instagram, and instead bringing that energy into their work, where it matters most. I personally couldn't care less if my doctor is kneeling on social media or posting Black emojis if they're still minimizing my concerns or withholding proper treatment–if they bear some kind of unconscious bias that causes them to treat me as anything other than equal.
Within the chronic illness community, simply being inclusive can help. It's not hard to look at an initiative and realize that it's not diverse. It's not hard to reach out to diverse voices and include their stories, and it's really not hard to exclude yourself from anything, brand or initiative, that does not respect and embrace the melting pot of cultures in this world.
What does the Black Lives Matter movement mean for you specifically?
In the past, the movement felt frustrating, to be honest. I was frustrated that there was a need for a "movement,” and that I even have to say that my life matters and that I’m equal. I was frustrated that because BLM addressed issues so many people couldn't relate to, they chose to ignore or even try to dismantle it because they refused to do simple research to understand how racism works. For me, the movement felt like a constant explanation of why Black people still suffer even though we're no longer enslaved.
But now, the movement gives me hope. Seeing the beautiful rainbow of people out protesting helped me to see just how much support we have. It's amazing to see people who have come forward and admitted to having never thought about systemic racism, yet now are working towards understanding and doing the research. They’re listening with open ears instead of turning away from the truth. The movement feels like a beacon of hope that's been needed for so long.
What is your ultimate goal as a Black Crohn’s advocate?
I hope to normalize conversations regarding race. I aim to show people that "Black" is not a bad word, nor is the color a threat. I hope to show people of color that it's okay to discuss things like mental health and chronic illness. I want to show Black people that although we may not be included in the pamphlets and commercials, conditions like Crohn's disease impact us, too.