I was diagnosed with ulcerative colitis at 14. I was a 2012-13 Scholar for the Patient Advisory Council (PAC) for ImproveCareNow and 2013-15 Co-Chair of the PAC. I have since graduated from college with a major in biochemistry and minor in medical humanities. I am now a first-year medical student.
I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.
Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.
Sometimes it’s fear I won’t make it through. Sometimes it’s worry that my status as a patient-provider will disadvantage me because I choose to disclose it. Sometimes it’s confusion over not really knowing what that title means, or what it should mean, or what it could mean. Sometimes it’s awe that seven years have passed since I sat in a hospital bed and wondered if I could make something out of this D-thing.
A record seven gutsy patient advocates in ICN’s Patient Advisory Council – PAC, “pack” – attended the Community Conference. We tweeted live at #ICNCC15s all the way through – so please check out our feed!!
The Patient Voice is already strong on Twitter. For a week leading up to the conference, Alex, Bianca, Christian, Isabelle, Jennie, Randa, and I tweeted once a day to provide a glimpse into how IBD factors (or does not factor, in some cases) into our days. We made special reference to the key drivers of remission took center stage at the Community Conference and form the foundation of ImproveCareNow’s work:
My name is Christian Hanson and I am a sophomore at Brown University. I was diagnosed with Crohn’s disease at age ten and receive Remicade infusions at Boys Town Medical Center in Omaha, Nebraska. While Crohn’s so often feels like a heavy burden, there have been fleeting moments where my condition feels more like a blessing: Through this disease I have discovered a network of heroes who have overcome the trials of IBD and have been surrounded by a caring and compassionate network that spans the United States. I am joining the Patient Advocacy Council because I believe in their mission to magnify the voices of patients and advocate for those who cannot. I will be helping share, via CIRCLE eNewsletter, updates about the PAC and various projects related to patient engagement active throughout the ImproveCareNow Network. Feel free to contact me at firstname.lastname@example.org if you would like to learn more about the PAC or would like to speak with me regarding my personal experiences.