Insights From an IBD Patient Advocate
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Life takes us on unexpected paths. Although we may not anticipate the twists and turns we face, they become very much a part of our personal journey. As a woman living with Crohn’s disease for the past 20 years, I’ve faced a lot of uncertainty. I’ve undergone major surgeries and numerous extended hospitalizations that have challenged me physically and mentally. Conquering these many physical battles has made me stronger and more resilient. And for that, I am grateful.
Life with IBD is complex and uniquely personal, but it certainly has given me so many skills, and I have learned that patience and perseverance can truly help me achieve success — whether it be at the workplace or with IBD remission. My hope is that my story of resilience can become a source of strength and inspiration for IBD warriors.
How IBD Empowered Me in My Professional Life
One of my personal goals had always been a master’s degree, but I never wanted to step away from work. In my late twenties, I decided to enroll in a fully employed MBA program that would allow me to continue working full-time. I was determined to accomplish my goals and was intentional in the decisions I made to accomplish them, even while sacrificing my health at times. I was not yet diagnosed with Crohn’s disease, although I suffered with many IBD symptoms. But I pushed through the mental and physical fatigue and the chaotic schedule, which in turn affected my meals and my sleep — both crucial in IBD management. After two very exhausting years of work, travel, and school, I graduated with an MBA in global business, then pursued a career in advertising.
I successfully held account management roles at global advertising agencies, traveling extensively for personal and professional reasons, while continuing to face symptoms of IBD. I prioritized work, sometimes while undergoing a flare, medication side effects, or a clear liquid diet for colonoscopy prep. I didn’t share the details of my IBD journey at the office. I’ve often reflected on when I should have prioritized my IBD by taking a sick day or working from home, declining workplace group meals or happy hours and even sleep on business trips. Although much of this was to maintain my work ethic and avoid negative misconceptions, pushing myself was sometimes to the detriment of my health. Nonetheless, I am grateful for the professional growth I’ve gained from living with IBD, such as my ability to handle many stressful situations, solve problems, and plan strategically.
Life With an IBD Helped Me Get Stronger Physically
Shortly after my Crohn’s diagnosis in December 2008, I made a resolution to run a half-marathon with the Crohn’s & Colitis Foundation through their endurance training program, Team Challenge. I began training weekly in January 2009 with fellow IBD patients and caregivers who knew exactly what I was going through. The conversations were candid and open, but it felt as if I were finally in a safe space after five years of facing this alone.
I developed such profound relationships with other IBD patients because of Team Challenge. I felt empowered with every mile I ran, even when I felt miserable or bloated or fatigued. As we say in Team Challenge, we become a “Team Challenge Family,” and that is what I’m forever grateful for. Without realizing it, I was soon feeling that runner’s high at increased mileage and couldn’t stop after I crossed my first finish line. I’ve since run numerous races with the foundation, including half marathons, 15Ks, 10Ks, and 5Ks.
The physical and emotional gains of training and running multiple half-marathons in my life have transformed my perspective of living with IBD. For runners, it takes a structured routine to train, and oftentimes we have to adapt sleep patterns and diet. Similarly, living with Crohn’s takes time and patience, as it can take time for a diagnosis or for a medication to work. Runners often adjust their diet and hydration during training, and for IBD patients, both become a priority for symptom management. Runners experience highs and lows during training and races, and IBD patients often experience a roller coaster of emotions with our mental health. Support is also crucial for both runners and for IBD patients. The thrill of running through a finish line, with spectators cheering for me, reminded me of that. Surrounding ourselves with a supportive IBD community is key.
Giving Back to the Community
Over the past 20 years, I’ve realized how much community matters. The IBD community is vast, and my involvement with the Crohn’s & Colitis Foundation has been beyond rewarding. When I started interacting with others, sharing my story and utilizing my voice, I felt that I was not only helping others, but that I could help guide the direction of the future of IBD.
I’ve been able to give a face to a name as a Hispanic IBD patient through the foundation’s social media platforms, such as Facebook and Instagram. I have my personal IBD advocacy platform — @VoiceForIBD — on Instagram, Twitter/X, and Threads, where I’ve shared aspects of my journey in hopes it can help others identify with me, whether that be in English or Spanish.
Fortifying Family Bonds Through My IBD Experience
I’d be remiss if I didn’t share how life with a chronic illness has caused my relationship with my family to evolve. With no immediate family history of IBD, they can’t fully comprehend the disease journey personally. But as supporters they’ve lived every part of it. During the five years when I was undiagnosed, while living with perianal fistulas, they kept private something so deeply personal and painful. Supporting me through the suffering was the best they could do. They have been my constant support system and have spent countless, and I mean countless, hours with me during my 20 years of living with IBD. They have heard me crying, screaming, and writhing in pain. They have held me close when tears were all I could express. They have had to learn so much from me, with me, and for me.
Celebrating Resilience and Hope Amid the IBD Journey
By embracing the roller coaster that is living with IBD, I’ve also learned that life’s greatest challenges can serve as our most powerful catalysts for personal growth. The journey I’ve shared is only a glimpse of the last 20 years, but as I reflect on these impactful years, I’m reminded that my inner strength has taught me to confront the unexpected. I’m grateful for the discoveries I’ve made about myself as an IBD patient. I have so much gratitude for the unwavering support of my family, my friends and the many IBD patients and connections I’ve made over the years. As I continue to navigate this journey, I will carry these many lived experiences with me, because I know that I can flourish in the face of any challenge with determination, resilience, strength, and support.
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