IBD Advocate Natalie Hayden on Finding Strength and Support

Natalie Hayden, a patient advocate for IBD Social Circle, was diagnosed with Crohn’s disease in July 2005 at age 21, shortly after graduating college. Previously healthy, she began experiencing severe symptoms, including abdominal pain, fatigue and high fevers. After multiple misdiagnoses, she was finally diagnosed following a computed tomography (CT) scan and colonoscopy. The diagnosis was devastating, as she had to put her career aspirations in TV news on hold.

In an interview with The Educated Patient, Hayden emphasizes that inflammatory bowel disease (IBD) is an invisible illness — patients can appear fine while experiencing extreme pain. Many struggle with how to communicate their condition to others, as symptoms like frequent restroom use or severe fatigue are often misunderstood. She highlights the emotional toll of realizing some friends and family may not be as supportive as expected, while others step up unexpectedly.

Over the years, Hayden has become more open about her disease, moving from keeping it private to confidently discussing it with acquaintances. She encourages patients to develop an “elevator speech” to explain their condition in simple terms, helping others understand the unpredictability of IBD.

Hayden calls IBD Social Circle one of her most meaningful advocacy efforts. The group provides credible information, combats misinformation, and fosters a diverse, inclusive community where all patients feel seen and supported. She reassures those newly diagnosed that the first year is the hardest and acknowledges the identity shift and constant mental calculations around food, symptoms and medications. However, she encourages patients to seek support, stay informed and remain hopeful.

Hayden urges those with IBD to connect with the IBD Social Circle for support, stories and resources. While IBD can feel isolating, a strong community exists to uplift and empower patients.