Posted by Lucy Miller on June 11, 2020
I'm Lucy and I'm 19. I just finished my freshman year of college, and I have Crohn's disease. I love dancing, especially tap dance, and I enjoy the outdoors.
The greatest struggle that I have encountered with my disease is learning to feel comfortable with myself, and accept that chronic illness is a part of my identity without having it take away from who I am outside that. When I was first diagnosed, and throughout a lot of high school, I was always scared to tell people about my illness because I didn't want sympathy, and I didn't want people to only think of me as a sick girl. Even though everyone in my life now knows about my disease, it is still hard for me to ask for help when I need it, or admit that it affects my life more than I wish it did. Talking about symptoms is especially hard; it is a lot easier for me to tell someone that I am scared I might need surgery in the future than to tell my friends that I don't want to go on a city trip because I am nervous about finding bathrooms.
Something major that affected my struggle with talking about my disease was going to Camp Oasis during high school. I was nervous to go my first year, but by my third and final year I realized how much it had changed my life. I also started volunteering with the Crohn's and Colitis Foundation at awareness events, where I gave speeches about my experiences. Instead of feeling embarrassed to tell my story, I realized how empowering it felt to use my voice and my personal experiences to help other people. I also slowly began talking to my friends more and more about the impacts of IBD on my daily life, and every kind and thoughtful reaction made me even more comfortable talking to others in the future. I have learned that although it can be scary to put your trust in people who have never experienced chronic health problems, honesty only makes friendships stronger, and prevents you from becoming isolated by your illness.
Joining the PAC is a way for me to continue working with a group of people to share our stories and advocate for better care. Using my voice and experience to create change is personally empowering, and I hope that I can help other people feel less isolated and more confident in talking about their disease. I am excited to get to know another group of people with the same disease as me, and who are similarly passionate about helping make the world a better place for people with chronic illness.
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