Meet Desiree and read her story about the role stories and storytelling have had in her chronic illness journey, and how she plans to use them to advocate for others living with IBD.
I am a student and writer living with ulcerative colitis, diagnosed five years ago during my adolescence. I balance school with advocacy, using storytelling—especially poetry and prose—to give voice to young people living with IBD. Outside of writing, I’ve been an avid reader since childhood and a former competitive tennis player, interests that shaped my identity both before and after my diagnosis. I discovered ImproveCareNow through my connection to pediatric IBD care and was drawn to its focus on community, collaboration, and improving outcomes for children like me.
One of my greatest struggles with IBD has been navigating the unpredictability and severity of flare-ups, particularly when my disease disrupted every aspect of my life at once—school, work, athletics, and even basic nourishment. During one flare, the pain became so debilitating that I was hospitalized after losing fifteen pounds in under two weeks. Beyond the physical toll, the emotional weight was profound: watching my parents worry, feeling my independence slip away, and confronting the fear that my body could betray me without warning. Chronic illness forced me to grieve the version of myself that could plan freely, eat without fear, and move without pain.
To overcome this struggle, I’ve learned to listen to my body rather than fight it, embracing rest, medical care, and emotional coping tools as acts of strength rather than surrender. During my hospitalization, returning to children’s books and fairy tales helped ground me in hope and resilience when everything else felt out of control. My family, care team, and pediatric IBD providers have been essential supports, reminding me that survival is not solitary. Through this journey, I’ve learned that I am resilient, creative, and capable of transforming pain into purpose. Moving forward, I plan to use writing as a form of advocacy to raise awareness for pediatric IBD.
I joined ICN to contribute my perspective as both a patient and a storyteller, helping humanize the statistics through lived experience. I hope to support ICN’s mission by amplifying patient voices, participating in advocacy and research efforts, and using my writing to bridge the gap between personal experience and systemic change—so that every child with IBD has the chance not just to survive, but to thrive.
Get #InTheLOOP with more Story of Self posts on the ICN blog >>
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (pediatric patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
