ImproveCareNow Pac


Chronic illness can't be solved like an equation.

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.”


Navigating Empathy and Emotional Labor with Patient Advocates

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.


Having support keeps you grounded.

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.


Top Ten LOOP Posts of 2019

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!


I decided it was time to own my disease

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.  


The Helpers

It’s June 3rd. 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 love my perseverance

I am a second-year engineering major. I tend to be a very academically driven person with high expectations of myself. I love my perseverance, but sometimes my own determination to achieve my goals is my biggest stressor. In my mind I set goals for myself constantly. And naturally when I don’t meet my goals, I am disappointed.

These habits manifest in many facets of my life, but particularly in my academic life. I set goals for tests and grades and expectations for interactions. When I don’t do as well as I would like, it can be rough, and I end up stressed out.


I was torn between needing to rest, and not wanting to miss out

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.


IGNITE - I choose to ask the hard questions

"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.


Relearning to Live

Sure, my parents drilled the whole “eat healthy, sleep well, drink water” thing into me and my sisters, but that was never entirely applicable to me. I had different rules. Having had Crohn’s disease since an early age, I was always seriously underweight and struggled to get enough nutrients. The goal for the first decade of my life was to eat as much as possible and specifically fatty foods that would build up my mass. But I was never hungry anyway; eating always ended in pain so getting enough food into me was truly quite difficult. I even tried supplemental nutrition drinks like Pediasure, Boost, and Kids Essentials but it wasn’t enough to help me gain weight.


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