I think the scariest part about being chronically ill is the uncertainty you face with each upcoming day. No matter how healthy you are, it can change any second and that is such a scary thought. You could be in remission for a month or you could be in remission for a year and there will still be a part of you that worries your life is going to flip upside down any minute because that‘s how unpredictable chronic illnesses are.
Every second of every day is filled with worry that I’m going to make myself worse, and there’s no way to stop it because everything I do comes with a consequence. I can’t just wake up and get on with my life. Every aspect of my life needs to be thought out to the smallest detail. After a couple of months of being diagnosed, I basically knew where every bathroom is located in a 5 miles radius. Being chronically ill means everything needs to be perfectly thought out or things will definitely go wrong. Most of my time is spent over thinking every situation and trying to figure out a solution to all these basically impossible scenarios because I want to be prepared in case the worst thing decides to happen. Luckily, I haven’t had too many embarrassing scenes.
Although being chronically ill is a huge part of your life, it shouldn’t control you in such a way where you can’t have any fun. I was diagnosed twelve years ago and until recently I let it ruin my life because I thought that I couldn’t do anything without Crohn‘s getting in the way. I was so uncomfortable with who I was as a person. I wouldn’t let myself be genuinely happy because whenever I was happy, someone would always ruin it with a remark about me being sick so I just stopped having fun. I think that might’ve been the worst part of being a kid with an invisible illness. Everyone just thought I was faking being sick but I was only 5. The only thing I faked was taking naps.
I had no idea what was going on with my body and I was scared then these people were coming up to me and telling me I was faking. I couldn’t do the things I wanted to do because I felt guilty for being happy. My life was one big disaster after another. Once I finally started to get comfortable with myself and I accepted the fact that someone was always going to try to ruin my day, I started getting really sick and I was in and out of the ER on a weekly basis. I started to think I wasn’t meant to be happy and I was a burden to everyone. This time it hit me harder than before. I hated everything about myself and I felt like no one was there for me. I couldn’t talk to anyone about what was actually going on in my life because no one tried to understand my perspective on all of this. Every time I would open up to someone they always made me feel bad about doing so. I mean I know a handful of people that have the same disease as me yet none of them understood what I was going through because I hit rock bottom. I had no treatment options left. The only thing my gastro could suggest was surgery that might not even work but I couldn’t cope with the thought of having a piece of my intestine resting on the outside of my stomach for the rest of my life.
After a year of being so sick I physically could not do anything but sleep, I gave in and it was the best decision of my life. Things started to get drastically better. I was finally in remission and I could enjoy my life the way I always should’ve. I didn’t care that people saw me as the sick girl anymore because the only thing that mattered to me was that I was healthy. I could participate in normal teenager things like hating school and just being care free. I met a boy and we fell in love. We went on a lot of adventures throughout the year. He knows every gross detail about my life and he still loves me more than I think I deserve. I finally felt like I was normal.
There’s this constant struggle with wanting to live life to the fullest and wanting to be extra cautious about every small detail because the littlest of things set off your illness. I’ve fought with that thought every single day of my life for the last couple of years, but my mindset right now is you have absolutely nothing to lose because whether you sit at home and do nothing or you explore China, you’re going to be in excruciating pain so you might as well have fun while you suffer. As cliché as this is, life is short and you should always enjoy the little things.
Even though I’m going to be sick for the rest of my life and that scares me more than anything in the world, I’ve finally reached a point in my journey where I can be myself and do what I want. I’m always going to struggle with the fact that I’m sick. Some days will be worse than others, but I’ve come too far to let my illness control my life again. I am proud of who I am. I love myself because I’m a fighter.