Posted by ImproveCareNow™ on May 04, 2021
Fionna is an active member of the Patient Advisory Council, and is currently co-leading their communications taskforce. In this role, she is collaborating with other PAC members and ImproveCareNow to bring the stories and voices of the PAC to even more people in new and exciting ways. This spring she helped to launch the imPACt podcast, which is a new way to connect with and listen to young people talking about life with IBD. It is through the PAC that Fionna was recently able to tap into support, understanding and validation as she coped with a UC flare. She credits the PAC and this experience with helping her shift her mindset about healthy resilience, exploring the benefits of opening up and being vulnerable, and learning how to be flexible and give herself grace during tough times.
Be inspired by Fionna's #IgniteTalk 🔥
Hi everyone, I’m Fionna Kopp and a patient of Children’s Hospital Colorado. I’m 20 years old, a junior in college, and love being active and learning.
During January of my kindergarten year at the age of 5, I was diagnosed with ulcerative colitis, after likely having symptoms on and off since I was a few months old. Four months after being diagnosed with ulcerative colitis, I wanted to run, well more like walk, my first 10k. It is a big race in my hometown and my older sister, my role model, had even been doing it for several years. Of course I had just been diagnosed, was still on steroids, and my parents were maybe a bit hesitant. My parents thought I didn’t really know how far that was for a 5 year old, which is probably true. Distance is a hard concept. Instead they wanted me to try 1 mile first. A reasonable distance. Though 5 year old me had different ideas. I managed to turn that 1 mile into my first 5k. Lo and behold, several weeks later I completed my first 10k. And I continued to run that race every year through the end of high school.
Just like that within four months of being diagnosed, I adopted a mentality of doing whatever I set my mind to, whether that was challenging myself at school, hiking, or running. My stubborn perseverance helped me continue doing what I love despite my diagnosis.
I continued to do just that for 14 years and my IBD never caused an issue. Though I don’t really know life without IBD, I would say my life was pretty normal for 14 years. It didn’t mean I never had symptoms. It just meant that there weren’t many and it didn’t really affect what I could do. Looking through my life you could still find the ways in which it affected me--medications, a plastic bowl next to my bed in case I got sick, more frequent doctor appointments, and a couple scary trips where I got sick in remote locations and my parents didn’t know what to do. But other than that it was pretty normal. I was able to do school, the activities I wanted to, and play with my older sister and friends. And it was just like that for 14 years.
Fast forward to January 2020 and I had my first flare. I went to bed one night feeling off but that wasn’t totally unusual and I woke up feeling terrible. My dad and I cancelled our bike ride for that day, and basically everything else for the rest of the week too. At first I didn’t know it was a flare. And I certainly did not know what the next seven months would hold.
I flared on and off with episodes seemingly triggered by physical stress. It feels terrible knowing that something you did probably triggered your flare. But it feels worse not being able to do what you want. I struggled going on hikes and bike rides that would normally be fine. One flare episode would end and within the next few weeks I would go on a bike ride trying to convince myself everything was fine. But all it would do was start another flare. I was in a delicate balance of what seemed like constantly on the edge of a flare.
My stubborn perseverance held strong. I just wanted to continue doing what I wanted, when I wanted, and ignore that in fact IBD was limiting me. I quickly missed my previous 14 years of normalcy and also became so grateful for them. Those 14 years became my expectation for life with IBD and still are--that should always be what full remission looks like for me.
In these seven months, I had to accept the fact that my journey with IBD isn’t always going to be perfect and easy. And that is okay. I’m not going to do everything perfect or “right”. I cannot expect everything to just work. In the last year, my IBD really has shown me just how unpredictable it can be. I have worked to accept its unpredictability. I have learned and continue to learn that I cannot expect tomorrow to always be as good as today. Planning to do whatever I want when I want is not going to always work out. But that does not mean I cannot make plans, instead I can make plans and have to be okay with them not working out. I have to be okay with meeting my body where it is at and accepting the fact that I may not be able to do THAT hike I have always wanted to do until I’m in remission again. It’s about getting back out there when I can, not about pushing myself before I’m really ready.
While I went through these difficult moments and had to learn to give myself grace, I leaned on the support of the PAC. I took the step of being more vulnerable and sharing my story. I became more involved in the PAC. When I really opened up I think that’s when I gained the most from the friendships within the PAC. Everyone there has struggled too and is there to support you. I learned from our interactions and even just from messages in our group chat that it's okay to have really hard times with IBD. It’s okay to not be able to do what you would normally do. When I needed it most, PAC members exemplified for me resilience--having a difficult period in their IBD journey and accepting where they are at. But eventually getting back up and being committed to getting back to what they love whether that’s sports, crocheting, and so much more. Learning from others in the PAC my mindset shifted from my rather stubborn perseverance to a more healthy resilience. I can give myself grace and meet my body where it is each day. I can still do what I want, but have to be comfortable accepting there will be days where I can’t and I’m better waiting for a day when I’ll be ready.
What I have also seen in the PAC is how your role changes based on where you are at in your IBD journey. When I was struggling the PAC was there to support me. While at other points I can support someone else. ICN and the PAC have fostered a community that has made the perfect space for vulnerability and comfort. Whether or not you are ready to be vulnerable and share your story in the PAC, we get it. And the PAC is still there to support you. I’m so grateful to be a part of it and have the privilege to learn and lean on others while also supporting one another.
The PAC shifted my mindset and really showed me what resilience means. This summer my dad and I had planned for a week-long camping and hiking trip. Normally for trips like this my dad and I would plan what hike we would do each day. But shortly before leaving I had another flare episode. I remember crying in pain to my mom wondering if I should even go. I was worried about letting myself and others down. In the end, I decided to go. But instead of planning every day with a specific hike, we took it day by day. We had ideas of hikes we would like to do, but we were more relaxed about the planning. Even while hiking, we just did whatever felt good to me. I was back outside doing what I love. I was giving myself grace and meeting my body where it was at and needed to be. I was resilient. Sure, it wasn’t always the same as before, where for 14 years we set out to do a hike and did it. But I am just as proud of the hiking I did on that trip with my dad as the difficult and long hikes I have done in the past because this time I was resilient. Healthy resilience will continue to serve me and benefit me especially when my IBD journey hits a rough patch again.
Thank you so much for being here and listening. I would also like to thank ICN and the PAC for cultivating a community that can be vulnerable and resilient together. And I would like to thank my amazing care team at Children’s Hospital Colorado for all the support and outstanding care they give.
Thank you!
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"If this Ignite Talk resonated with you, please join the PAC and ICN at the Fall Community Conference next week - September 30th and October 1st. This is another great opportunity to hear patient perspectives as well as see patients, parents and providers collaborate." - @ICNPatientsÂ
