Posted by Shira Futornick on October 16, 2020
My name is Shira and I'm currently a junior in high school. I was diagnosed with ulcerative colitis in the fall of 2018 but I am being reevaluated for Crohn's disease at the moment. Something interesting about me is that my mom and a few other family members of mine also have IBD!
The hardest thing about my IBD has been the emotional toll of having a chronic illness. For me, it’s been difficult dealing with the treatments, side effects, and other conditions that come along with IBD. Since my diagnosis, I have tried a lot of treatments, but we learned that I am extremely sensitive to medications, so I get intense side effects with almost every drug I take. I also developed arthritis almost a year and a half ago, which we believe is related to my UC. My presentation was somewhat strange, so it took a long time to figure out which treatment to try next and what the actual cause of my joint issues were, but I am finally finding some relief. Because of all of the complicated issues I have had, I also developed PTSD and became incredibly anxious when it came to pretty much anything medical. I had a really hard time feeling like my medical team was on my side, which made talking about my issues with medications giving me side effects or failing to improve my symptoms a lot more difficult. I felt like if I avoided talking about my illness, it wouldn't impact my mental health as much, so I hid it from most people in my life for a full year.
Since then, I have found the opposite to be true. I learned that communication is key, and most importantly that it's okay for my illness to take up space in my life. I now have an amazing medical team--especially my GI doctor--who listen to and respect my opinion, and who want me to feel better just as much as I do. Once I started sharing my mental health struggles with my GI and encouraged my mental health providers to communicate with my physical health providers, I felt a lot more empowered to open up about what I was facing. I was much more comfortable communicating to my providers that I wasn't okay. I stopped feeling bad about myself when I wasn't able to stick to a diet or handle the side effects of a new drug. Ultimately, I learned that by being more open about the obstacles I am facing and sharing what I am going through, the more accepting of my illness I am and the more forgiving I can be of where I'm at in a given moment.
I was attracted to the PAC because I love having a group of people who are so relatable and supportive and who understand all things IBD. I was also looking for a place where I could use my voice to influence the quality of care other people receive, and the PAC is exactly that. Sure, my UC is a challenge, but it also gives me a unique perspective and the opportunity to change someone else's life for the better.
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