17 May What I Wish More Doctors Knew About Treating IBD in Underserved Communities
In 2017, I was finally diagnosed with Crohn’s Disease, after being misdiagnosed by six different doctors.
By the time I heard those words, I had already lost two daughters, my corporate job and my ability to walk and eat. But I didn’t lose my voice. And I didn’t lose the fight. This lived experience showed me how inaccessible and inequitable healthcare can be, especially in underserved communities like mine. I realized that for too many of us, the journey to an IBD diagnosis isn’t just about symptoms, it’s about being seen and believed.
According to recent studies, Black patients with IBD experience diagnostic delays nearly twice as long as their white counterparts, and are 25% less likely to receive biologic therapies.
Today, I want to share three things I wish more providers, systems, and institutions truly understood about treating IBD in vulnerable communities.
1. Medical Mistrust Is Real And It’s Earned
The Weight of History
When you’ve been dismissed, misdiagnosed, or ignored, it’s hard to trust quickly. And many of us in underserved communities are carrying generational experiences of being left behind by the healthcare system.
Beyond Clinical Interactions
Trust isn’t built in the exam room alone. It begins with; providers listening longer, asking better questions, acknowledging the full story behind the symptoms and getting to the root cause of the problems.
Real-life Impact: After my reoccurring visits to the emergency room, with severe abdominal pain, a doctor suggested it was just stress and prescribed ibuprofen. When I finally found a doctor who ordered comprehensive testing, my inflammation markers were off the charts. Those years of dismissal have made me hesitant to seek care even when symptoms flare.
2. Access Isn’t Just About Appointments
The Invisible Barriers
IBD healthcare providers often assume patients have access to:
• Time off work
• Reliable transportation
• Health Insurance
• Affordable medication
But the reality is different for many of us. I’ve had to choose between treatment and survival.
That’s not healthcare, that’s survival mode.
Questions That Matter
If we want better outcomes, we have to start asking:
Can this patient afford to follow through?
What barriers are we not seeing?
Patient story: My biologic infusion takes 4 hours every 7 weeks. Between transportation, waiting time, and the infusion itself, that’s a full day of lost wages. I’ve skipped treatments because I couldn’t afford the treatments and I had to buy whole nutritious foods and pay my household expenses. Stephanie, diagnosed with CD in 2017
3. Cultural Competence Is Not Optional
Beyond Medical Language We can’t solve disparities with clinical language alone. Providers need to understand the cultural, emotional, and systemic factors shaping how a patient sees their diagnosis and their ability to manage it.
The Power of Culturally-Informed Care
When providers meet patients with empathy, flexibility, and cultural awareness, everything changes. Conversations get easier. Compliance increases. Trust is built.
Impact example:In communities where discussing digestive issues is taboo, patients often delay seeking care until symptoms become severe. When my gastroenterologist acknowledged these cultural factors and gave me language to discuss my condition with family, I finally felt comfortable building a support system.
Why I Wrote Navigating IBD
When I was first diagnosed, no one gave me a roadmap. There were no patient-centere guides, no culturally relvant resources, and no real space to process what this disease would mean for my life. So I created the blueprint I wish I had.
What Makes This Resource Different
Unlike clinical guides that focus solely on medical management, Navigating IBD addresses the whole person, including cultural barriers, financial challenges, and emotional healing specific to underserved communities. It provides scripts for difficult conversations with employers, family members, and healthcare providers who may not understand the IBD journey.
Navigating IBD: A Six-Week Blueprint for Better Gut Health is for:
• Patients navigating pain in silence
• Caregivers who want to help but don’t know how
• Providers ready to serve with empathy and equity
• Communities still fighting to be heard
It’s a tool for education, advocacy, and support, especially in places where those tools have been missing for far too long.
This Month and This Movement
May is National Digestive Disease Awareness Month. But for me, and for the communities I serve, this isn’t just about awareness, it’s about action.
How You Can Make a Difference
For healthcare providers:
• Schedule longer initial appointments for IBD patients from underserved communities
• Connect patients with medication assistance programs and transportation
• Ask about cultural and financial barriers to treatment adherence
For patients and advocates:
• Share your story to help others feel less alone
• Join local IBD support groups or start one focused on your community’s needs
• Bring culturally-specific concerns to your healthcare team
If you’re a healthcare provider, advocate, or someone living with Crohn’s Disease or Ulcerative Colitis, I invite you to join the movement. Let’s close the gaps, confront the biases, and build systems that work for all of us.
Learn more or order the book:
stephanieawynn.com/navigatingibd
#NavigatingIBD #DigestiveDiseaseAwareness #CrohnsDisease #IBDCommunity #HealthEquity #UnderservedVoices #PatientAdvocacy #IBDMovement
Sorry, the comment form is closed at this time.