How Self-Advocacy Helped Me Navigate Crohn’s Disease and Healthcare Bias

During my first week of college in 2001, I started experiencing flu-like symptoms: fatigue, abdominal pressure, and frequent urgent trips to the bathroom—having loose stools up to six times per day. My daily diet consisted of white rice, oatmeal, and a little cheese, all binding foods that can harden your stool and ease diarrhea symptoms.

Within two years, I went from being told I had irritable bowel syndrome (IBS) to dropping 30 pounds through blood loss and frequent bowel movements that plummeted my blood pressure, leaving me sweating, nauseated, and lightheaded every time.

I was unsatisfied with my diagnosis—it felt like more than IBS—and wanted answers and relief from my symptoms.

Challenges Throughout Diagnosis and Treatment

After going through the motions with numerous doctors for eight years—none of whom took my symptoms seriously—I finally found a gastroenterologist (or “GI,” a doctor who treats digestive disorders) knowledgeable in inflammatory bowel disease (IBD).

He was the first to believe me. After asking three questions in my first appointment, he suspected I had ulcerative colitis (UC) and confirmed the diagnosis with a colonoscopy.

I had surgery to remove my colon (a part of the large intestine) in 2012. Having my colon removed technically meant that I no longer had UC, yet I continued experiencing I continued to have chronic pouchitis (inflammation in the lining of a pouch created during surgery to treat UC) and flaring symptoms that affected areas outside of my intestines, like my mouth, scalp, and skin over the next 10 years.

Eventually, my doctors found that the disease had moved to my small bowel (small intestine), and I was finally rediagnosed with Crohn’s disease in 2023.

The Medical System: Missing the Mark for Black Women

The most challenging part of my journey has been the racism and sexism embedded in the healthcare system, creating significant barriers to care. I wouldn’t have encountered so many complications if I had been listened to, believed, and treated sooner or more appropriately.

An ongoing theme of my IBD experience has been medical gaslighting—doctors refusing to acknowledge the reality of my condition. I was often told that my symptoms were “psychosomatic” (in my head) or triggered by having a baby—and that I was exaggerating.

We’re bombarded by biased images and messaging that stereotype and stigmatize individuals, therefore damaging perceptions and practices. Stereotypes exist that Black people have poor diets and aren’t compliant or engaged in their care, that they have “thicker skin” or are “drug-seeking.”

Unchecked perceptions can be incorrect. It’s not that patients are constructing obstacles to care; it’s that these barriers have been imposed on them by the decision-makers within a system that promises universal access.

Only once we recognize that this bigotry exists can we begin dismantling it. Only then can we make healthcare more palatable for Black patients.

What I Wish I Had Known About Crohn’s

I struggled with severe symptoms for years while being medically gaslit about their existence by providers. There are a few things about Crohn’s disease that I wish I had known earlier to help validate my experience:

• Crohn’s disease affects the whole body: If I had known that Crohn’s affects the whole body, I could have gone to doctor’s visits better equipped and ready to say: “I’m having this pain through my whole back. Can we talk about why that’s happening?”
• An IBD network is essential: If I had a network of people living with IBD when I was first diagnosed, I could have been empowered to say: “This isn’t working for me. Here are some other options I’ve been thinking about. Can we discuss those?”
• IBD centers can help you get the care you need: If I had known about IBD centers sooner, I could have started my journey with a healthcare team that genuinely understood and supported me.

How To Advocate for Yourself

If I could go back to college when I began experiencing symptoms and give my younger self any advice, this would be it:

• Get educated: Learn about IBD. Knowledge is power. Understanding the ins and outs of your condition is the best way to advocate for your care.
• Find your team: Personalized care starts with the right people. Look for a team that respects your voice and treats you as a partner in your care. If you’re not being heard, switch doctors.
• Connect with community: IBD can be isolating, but you’re not alone. Connections are lifelines whether you find a support community in person or online. Consider advocacy groups like IBDMoms, Color of Gastrointestinal Illnesses, Connecting to Cure, Girls with Guts, and The Crohn’s & Colitis Foundation.
• Keep a symptom journal: Track symptoms, diet, and life changes like travel, stress, or shifts in sleep. Patterns reveal themselves and can help inform your treatment plan.
• Advocate for yourself: Speak up, ask questions, and never settle for anything less than the care you deserve. Push for tests, explore different treatments, or seek a second opinion. You know your body better than anyone else. Your voice matters.

My Own Crohn’s Journey Helps Me Help Others

Deep in my IBD journey, I felt incredibly isolated. I couldn’t find anyone who looked like me or shared similar experiences. So many people stay silent for fear of being dismissed, belittled, or ignored.

Once I found the resources and tools I needed, I had to share them. I wanted to be a bridge to resources for people like me: the mom with IBD who’s been marginalized or faced seemingly impossible barriers. Once I achieved that goal, it became just as crucial for me to share our stories with decision-makers in Congress to make a systems-level change.

When I reflect on my journey, two things fill me with pride: First, seeing my son’s empathy and fierce advocacy grow. Observing my struggles has shaped him into someone outspoken, compassionate, and ready to help others. He inspires others to do the same.

Second is our work through IBDMoms. We’ve built something extraordinary by helping moms find essential resources, navigating life-altering decisions, and finding connections. We’re also involved in advocating for wide-reaching policy changes.

My advocacy is driven by the belief that every patient and caregiver deserves the best possible quality of life. That can only happen when our community is seen, heard, and given an equitable seat at the table.

As told to Lauren Panoff, MPH, RD.