Wellness means different things to different people at different times. And while no single path leads us definitively toward or away from wellness, investing time in the things we love, making supportive connections with friends and family, and caring for ourselves can have an impact. PAC members – Becky, Linden and Quint – share their thoughts on wellness, creativity, self-care and community in this post.

Hello, my name is Allison. I was diagnosed with Crohn's disease at the age of seven. Currently, I’m a first-year college student. Something interesting about me is that I have two older sisters and two brothers-in-law.

I’ve been watching a show called New Amsterdam. As a person who lives with Crohn's disease, I really appreciate the way the writers try to incorporate healthcare in such a patient-focused way. There’s a quote I really like from the show about importance of patients being the experts:

“...Leave the quantifiable behind and rely instead on experience.”

My name is Catalina - I’m a current co-chair of the ICN Patient Advisory Council, a social/clinical research assistant at the University of North Carolina and will be starting medical school soon. I recently gave a presentation at the Anderson Center for Health Systems Excellence about emotional labor, empathy and how to navigate these concepts when working with patient advocates. I wanted to share some of my talking points with you here.

Lately, I’ve been reflecting on the importance of having a support system. Whether it be friends, family, or even strangers…in that Facebook group you joined a few weeks ago. Having support keeps you grounded, and I find it can have beneficial effects on both my mental and physical well-being.

LOOP is making impressions in the IBD community!

So far, in 2019, 50 stories have been posted to the blog by 40 ICN community members, including clinicians, researchers, coordinators, parents, patients, psychosocial professionals, and ICN staff & leaders. While the perspectives and the topics vary – as you can see in the tag cloud below – one of the common threads is that they are written by real people, talking about real life with IBD.

We are thankful for each and every one of these stories and hope that by sharing them we continue to do our part to raise awareness of these often-invisible illnesses and help encourage more people to get connected and talk about IBD.

Without further ado, here are the top 10 most read posts of 2019!

My name is Talia; I am a high school student. I was diagnosed with ulcerative colitis (UC) in May of 2016. Many people don't know that I have a creative side, and that I draw and paint for fun.  

It’s June 3^rd. And it has been 24 hours since I’ve been home. Far from bugs, insects, snakes, coyotes (which I disappointingly did not see), and beautifully, loud, energetic children. It has been 24 hours since I have returned from Camp Oasis. It has been 24 hours since all those helpers, my fellow counselors, have left camp and gone back to the inevitable “real life.” But I know even in their real lives, they will continue to be helpers, just as they were at camp.

I had the pleasure of attending the ImproveCareNow Fall Community Conference in Chicago in September. I had a great time meeting my fellow PAC (Patient Advisory Council) peers in person! They helped guide me through the various panels and workshops. I do admit that there were times when I felt overwhelmed. Not necessarily in a ‘negative stimulus’ overload, but overwhelmed with information, discussion, and flow of support from my own peers, parents and families, administrators and providers. There was one point during the conference, quite early in the morning, perhaps no later than 10:00am, where I was struggling to keep my eyes open – my old friend fatigue was back. I had to excuse myself to go back to my room to take a nap. Guilt, another familiar friend, greeted me. I was torn between needing to rest and not wanting to miss out on learning.

"Everyone's story matters, and is important, and can change someone else's story!" - Sami Kennedy

Stories matter! They connect us; build awareness, understanding and empathy; they unite us in our pursuit of a common goal and sometimes they even ignite (or reignite) our passion for the work that lies ahead. When PAC member Maddie shared her story – her #IGNITETALK – at our Fall Community Conference the energy in the room was palpable. Here’s the transcript of her talk.