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Top Ten LOOP posts of 2020
So far, in 2020, 50 stories have been shared #InTheLOOP. Thirty-four community members have written about IBD from their perspectives as patients, parents, researchers, clinicians, improvers and friends. They have covered topics ranging from COVID-19 and telehealth, to IBD research and innovation projects, to their struggles, triumphs and hopes for the future.
LOOP continues to make an impact in the IBD community, as a place where people can share their experiences and perspectives, to help others understand the realities of life with Crohn's disease and ulcerative colitis more clearly, and to keep us all #TalkingAboutIBD. Without further ado, here are the stories you read the most in 2020!
Top Five Stories About Life with Crohn’s
LOOP is a place for ICN Community members to share their stories – experiences, perspectives, wisdom. Since the blog was created in 2012, hundreds of stories have been shared by patients, parents, clinicians, researchers, collaborators and friends. We've recapped our top five, most read stories from patients about life with Crohn’s disease.
Never stop sharing your story!
Recently, I sent my Grandfather from out of town a surprise package. I took the time to search through all of the wonderful LOOP posts made by PAC members and pulled out all the posts I have written. I compiled them into a word document and attached the pictures as well. I made the font decently big and separated each article to make it easy to read. I printed a copy, wrote my Grandpa a note and sent the package on its way to Pennsylvania.
Keep Talking About IBD
We believe in the power of storytelling to connect us, help us all teach and all learn, and to remind us we are not alone. We want to encourage you - whether you have experience with IBD already or are learning about it for the first time - to take a moment and experience life with these chronic illnesses through the stories of five of our community members 💚💙
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.”
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!
My own art of talking about IBD
The way I have felt about making time to explain (or to not explain) my IBD has changed since I was diagnosed seven years ago. Early on I felt like no one understood, and therefore I didn’t put any energy into talking about it. Unhelpful comments and ignorance were hard for me to get past. It took me a long time to realize people can’t understand what they don’t know about.
Top Ten LOOP Posts of 2018
LOOP is making an impression on the IBD community!
We enter December 2018 with 60 new posts, shared by 40 ImproveCareNow community members! And 27 people posted for the very first time in 2018. Posts covered topics like: IBD research, mental health, new PAC member intros, ICN event updates, what I wish you knew, and many honest accounts of life with IBD.
We are thankful for each and every one of these stories. Here are the top 10, most viewed, posts of 2018!
Being an advocate when I don’t feel like one
Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.
PAC Social Media Week Recap - CC18F
ICYMI – PAC hosted another Social Media Week leading up to the Fall 2018 ImproveCareNow Community Conference. Social Media Week is one way we get excited for the Community Conference! It consists of PAC members putting together a series of personal and highly-focused quotes, pictures and stories, which we share widely to raise awareness of ImproveCareNow and IBD. In the past, we’ve answered questions like: "What is your IBD story?" "What or who motivates you to keep on fighting?" and "How do you/or the PAC raise awareness for IBD?" and in the Spring members shared what the ICN Core Values meant to them. For the Fall CC we wanted to share stories and examples of how we are Better Together.
These are our stories: