For so many years I remember being this young girl surrounded by so many people but feeling so alone… different than everyone else. I used to never acknowledge that I had a chronic illness unless I had to. When I would get stomach pain, have frequent need for the restroom, or was unable to do what others were doing, that’s when I felt so different…so alone. I was always the one with the (not typical) belly pain, that couldn’t eat anything, or that kept running to the restroom…always feeling singled out.

Diagnosed at a very young age and growing up alone with this disease, I always felt a void. I didn’t know anyone else that had this thing called IBD.

I often felt like the only person in the world with this disease. One day, I had a psychology appointment and I remember expressing not knowing anyone else with IBD and feeling so alone. My psychologist kindly and supportively shared with me that I was in fact not the only one in this world with Crohn’s because…she has Crohn’s too! I had never felt such comfort or that kind of happiness before. I wasn’t alone anymore!

Since my psychologist is my provider, I also needed to find connection outside of appointments, someone I could chat with whenever, and my psychologist eagerly shared ImproveCareNow and the PAC with me! Getting connected and joining the PAC has been the best decision. I've grown connections and have met many others that also have grumpy tummies (IBD) too! We had to connect with each other through zoom calls and messaging for over a year, which was great, but I longed to meet them all in-person. Then the opportunity finally came, where I would be able to see all my PAC friends in-person!!

Attending the Fall ImproveCareNow Community Conference was an amazing and memorable experience. I have been connected with the PAC for over a year but seeing them in-person was just so different. Being in the same space and room as those that I’ve seen on a screen and have messaged for many many months, hit very different. In a great way! They were real…I was real…WE are real!

The supportive and energetic people on my computer screen were in the same room as me, they weren’t just on a screen anymore!

There were so many amazing people at the conference, including my GI Doctor and IBD psychologist. It was comforting and I’m sincerely grateful, knowing that my providers were there to work towards improving care and better outcomes. Knowing that I will be receiving that best and improved care…what better feeling is there than that!?

Sharing the same space as others with IBD for three days made me feel so normal, understood, and comfortable. During our time together, meeting and talking to all of those involved in ICN, I heard a fellow PACer say “my stomach hurts”. Keeping it to myself, I got so happy inside and I felt this tremendous amount of relief, excitement, and comfort, not because a friend wasn’t feeling well but because someone else was having the same belly pain as me! I had never experienced that before.

Attending the conference and experiencing new things, feeling like I fit in, and getting to meet my PAC fam in-person made me feel like I was ‘normal’, and I belonged. I wasn’t different anymore! ICN and the PAC filled a void I never thought would be filled.

Get #InTheLOOP with stories by Autumn on the ImproveCareNow blog >>
⏰ It's time to get involved! No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers! Here are some ways to find & give help:
💚 Young patients (14+) with IBD can join the Patient Advisory Council 
💙 Caregivers of young people with IBD can join the Parent/Family Advisory Council
💚 Eligible individuals can participate in Current Research Opportunities
💙 Anyone can support ImproveCareNow with a tax-deductible general donation or donation to the Richard B. Colletti Family Fund
💚 Anyone can sign up for blog updates and stay #InTheLOOP with our IBD stories
💙 Anyone can download, use & share our free, co-produced IBD resources
💚 Anyone can connect with our welcoming & supportive community and receive IBD resources, community stories, and ICN updates & opportunities by joining our CIRCLE

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