Rachel’s Story
Limitations Aren't Limiting: A Crohn's Patient Story
Note: Please keep in mind this story is an Op-Ed. All thoughts/opinions are my own. The purpose of this collection of essays is to show my perspective of a Crohn's patient and hopefully make someone feel a lot less alone.
As a chronic people pleaser, saying no is the most difficult thing for me to do. The feeling of anxiety about if the person will hate me or not. The sweaty palms of being faced with something I really don't want to do, but I don't want to let someone down even more. The feeling of being paralyzed because while I'm still thinking of a response, I hear my mouth saying 'yes' before I could stop myself.
The most important lesson I've learned over the past few years is that even if I don't say no, eventually my body will say no for me. And I've had to teach myself that I'd much rather disappoint someone; cancel a commitment; or deal with having FOMO at home, than be sick.
The human body is so fascinating to me. Over time, I've come to learn how to love my body. It's most definitely a slightly toxic love-hate relationship, but I do love her more than not. Although we humans might want to push, exhaust ourselves, and work hard, our bodies will eventually stop us. And anyone who has experienced burnout knows what I mean. Eventually, your body will shut itself down; whether that means you fall asleep behind the wheel of a car, or you get sick; it will stop you. And with a Crohn's body that gets amplified.
One of the symptoms of Crohn's is chronic fatigue. And for me, who loves to be a workaholic socializer, that's extremely frustrating. Add in the fact that when people look at me (including doctors and nurses), the first reaction I always get is "what's wrong with you? You look perfectly fine!". Although that might sound like a compliment, it really messes with your brain. I look in the mirror and look fine, but the inside of my body doesn't match the outside. And then you wonder "why can't my body just cooperate?". Why can't I go binge partying and then work the next day like other people in their 20s? Why can't I hustle and work 60+ hours a week? Why can't my body keep up like the normal 24-year-old that I look like?
Now, I did try. I spent 18-23 years old trying so hard to keep up with everyone else. I was living in New York City! The city that quite literally never sleeps. And I wanted to have the full NYC experience. But it was exhausting. Both physically and mentally. I landed myself in the hospital twice. Once for an extended stay. I've lost count of the number of times I've been to the ER. And my body is spent. Not was; it is spent.
I eventually had to learn that saying no is a necessity. Limiting myself is a necessity. And it's okay. I can't care if someone hates me for saying no because at least I'm still here and alive for them to hate me, right? I had to take a self-inventory one day and realize that I'm going to be so angry if I allow myself to be so sick because I was trying to live for other people. I fought and I worked hard to be here on this planet, and I'll be damned if I give that up for someone else's happiness. And in all honesty, it's been beautiful. The most beautiful part is realizing that all those worries and expectations were things I put on myself. No one hates me because I put my body first. If anything, it's strong being able to pace yourself. To be in tune with my body. And the most beautiful part is that my support system understands.
I still hate limiting myself, but I had to learn that limitation sets me free. A change in perspective makes all the difference. I can still have a full life, but I need sleep. I need me time. I need to recharge my battery; fill up my tank, and whatever corny sayings there are. It's essential for everyone. I make sure to surround myself with people that will yell at me to sit down and take a rest. Who will give me the grace and understanding to say no because that's love. And that's support. And everyone needs their village.
-Rachel Bonner ’2022