Finding the IBD community through the National Council of College Leaders
Published: September 25, 2020
My world was flipped upside down three years ago after I was diagnosed with ulcerative colitis. I didn’t even know these digestive diseases existed before I was quickly thrown into all the changes and challenges that come with having one. I was a new high school graduate eager to start college in a couple months, and, in the blink of an eye, I was living in a hospital too tired from malnutrition and dehydration to walk six feet from my bed to the bathroom. It took me six months to pull myself out of my first flare, and my success came only after completely removing my large intestine and adopting my ileostomy, Franklin (yes, I named him, and we were besties). The severity of my disease forced me to fast-track a lot of big decisions in those first six months; I was constantly placed at crossroads it takes some patients years to reach. Something new would come up, and it felt like I was changing my treatment plan every week.
I didn’t fully wrap my head around everything I’d been through physically, mentally, and emotionally until a year after my initial diagnosis when the dust finally settled. In that time, I had become involved with the Crohn’s & Colitis Foundation through my local chapter’s Take Steps walk. I was (and still am!) the proud team captain of “Connie’s Party Poopers”, and my fundraising was a blast! I was so moved by the generosity of people closest to me but more so amazed at how far one story could resonate to make change. To this day, I’m in awe at how many people have a connection to IBD. When I first shared my story, I was shocked at how many people in my personal life came forward to share their story or that of a loved one. Seeing how many people IBD truly affected inspired me to want to do the most I could to help.
I’ve had the chance to be involved in SO many different Foundation events and programs, including the National Council of College Leaders (NCCL). I’ve made so many friends and met so many other patients at events or on social media. There’s an extremely unique bond between all of us that’s difficult to put into words, but the feeling is one I’ve never experienced until I found the IBD community. It’s not an exclusive club or a secret society; it’s just one of those things you won’t “get” unless you have it.
In my early involvement with my local chapter, I attended events and worked with the office staff as a mentor to younger patients with IBD. I was a voice they could hear and a person they could turn to who had been through a rather rough flare, surrendered my colon, and lived to tell the tale now attending classes as a full-time college student. It wasn’t until I joined the NCCL that I found someone (a whole group, actually) my age who had also lived through every good, bad, and ugly aspect of IBD.
During my first NCCL retreat, in the moments between taking care of business, we took time to allow members to share what we call “mission moments.” Members shared why they got involved with the Foundation and/or why they decided to join the council. I listened to my fellow members, now my friends, share parts of their story and memories that urged them to get involved. Their strength and resilience moved me to tears. My emotions were all over the place, but I mostly felt anger, then gratitude. In that order. I was angry at all that patients have no control over, whether it’s recurring symptoms, surgical complications, weight fluctuations, etc. I was especially angry that these special people sitting with me in a conference room at the Foundation headquarters, with some of the biggest hearts and passion to make change, have to live with something so debilitating. But, shortly after the anger passed, I was flooded with gratitude for the opportunity to be a part of this group. For the first time since my diagnosis, I was no longer a mentor; I was part of a group of peers going through similar struggles and triumphs. It felt good to have found people that I could level with and relate to. It’s comforting having a group of people my age to turn to for help and advice or to share funny IBD-related experiences. When I’m feeling discouraged or defeated in my own journey, I know they have my back and that they may have gone through something similar; I feel less alone living with a disease that can do an amazing job of making you feel like the odd man out sometimes.
This pandemic has been one of the most unique experiences in my life to date. My IBD has really been put to the test through all the stress of stay-at-home orders, fearing that I’m more at risk, and checking the case count in my hometown daily to decide if I should go to the grocery store or not. I was fortunate enough not to flare, but I had some j-pouch issues as I quarantined with the rest of my family. The NCCL was a place for me to turn to for advice and friendship. We asked each other questions constantly about new symptoms and situations as they popped up for all of us during the pandemic. We talked about best practices to beat some situational depression and anxiety, and we talked through our fears and “what ifs” about COVID-19.
These 19 people grounded me in a time where I thought my head was going to explode. Our monthly council and workgroup calls gave me something to look forward to along with our virtual Day on the Hill event and virtual August retreat. Throughout everything, the NCCL has been a getaway where laughter, support, advice, and love are in abundance. And this, I owe to the Foundation.
The Foundation is now accepting applications for the National Council of College Leaders. Click here to learn more and apply!
Connie Pasek is an ulcerative colitis patient and a member of the Foundation's National Council of College Leaders.