I’ve spent two weeks now at Cincinnati Children’s Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the “staff” table, I was hit by a quiet wave of shock. It’s been over six years since my diagnosis. Over six years. One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I’ve changed in meaningful and (then) unimaginable ways since my diagnosis.
I had the unique chance to imagine myself as a new patient all over again and reflect on the ways in which I have developed. I have been a patient since April 22, 2008. Sometime between then and now I became a patient advocate, like all of my colleagues on the PAC. The transition is not at all necessary to live a successful life with IBD, not always anticipated, and can happen at different times for different people. I’ve rarely stopped to reflect on how, when, and why I transitioned into an advocacy role.
I’ve written before about patient advocacy, but to follow-up on Jennie’s recent reflections on her transition from patient to patient advocate, I’d like to share what the PAC has put together describing some of the differences between a patient and a patient advocate. We did our best to collect a diverse range of opinions, but we would love to hear your thoughts, too! We’ll be reading and responding to comments, so please take a moment to share your perspective. What do you think?