One night about a year ago, I sat in a room with a boy I barely knew and talked quietly to him as a party swirled around us. I wasn’t a regular at college parties, but a good friend had swept me up into her group and I found myself surrounded by intelligent, hilarious, creative people that I had no way of impressing. At the time I was one surgery deep into my illness with plenty more to follow, and only a few weeks away from a proper diagnosis with no way of knowing it. What I did know was that I was always tired, in a lot of pain, and very shy about all of it. I desperately wanted to fit in to a group that I couldn’t quite keep up with.
The boy that I hardly knew was being very kind and trying to relate to me by chatting about my recent stint in the hospital. Because I was physically exhausted and more than a little frustrated, I opened up and told him that I was tired of being the “sick girl.” He told me that he didn’t believe that people should be defined by an illness. Which is very true. And wise and kind and well-meaning, and also something that bothered me very much.
A lot of you have emailed me asking how I keep Crohn’s from defining my life. It’s a brilliant question, and for me the answer is so complicated. But it’s an important question, and it’s something I feel that I should talk about. So, in the simplest way I can put it: How do I keep my disease from defining me? Well, sometimes I don’t. Sometimes I let it win.
Everyone with a chronic illness has the same answer when asked how they are- “There are good days and there are bad days.” Well, this post is for the bad days, because there are many. Here’s my trick to dealing with it- my one big secret about how I stay positive and happy when I don’t even have the strength to lift myself out of my bed:
I give in. I let it beat me. I say, “Okay, you win this round, but I’ll be back to try tomorrow.”
There are days when I feel like nothing more than an illness and well-meaning friends will tell me that I am a million other things, and it’s true it’s true I know it’s true, but for that one day I don’t have the strength to be a daughter and a best friend and a student and a sick girl and all the other things that I am. I have to pick one. And so I give myself permission to be the sick girl with the hope that everyone who loves me or needs me that day will understand and they will wait. So far I haven’t been disappointed.
The bad days will come, and you will not have a choice in whether or not you will deal with them. It’s not something you can put off, it’s not something you can ask for an extension on, you can’t barter for more or less time. It takes over everything and leaves you reeling- I have often felt like I am not even making my own choices, just reacting to what my disease decides for me. Sometimes it’s easier to ride the wave instead of struggling against the current. Somewhere along the way I got tired of drowning.
So many of you have opened up to me. I have read your emails with tears in my eyes, blown away by how honest people are when you are honest with them. If I didn’t let my Crohn’s define me, at least in some ways or on some days, then I wouldn’t have been able to start this blog about it. I wouldn’t have gotten to talk with so many of you, which I absolutely love! So to everyone who wrote to me about how much they were hurting- those with Crohn’s and those with other diseases and those going through their own brand of trouble- to everyone who was brave enough to ask me for help and make me feel less alone, I want to tell you that it’s okay to go up against something bigger than yourself and be too overwhelmed to fight it. I’ve been knocked down plenty of times myself, and the absolute best thing I’ve ever done was reach my hand out and ask for help, only to find so many people (loved ones, strangers, a nice boy at a party) reaching back. People want to help you. I want to help you.
These past two days haven’t been good for me. I’m sick and hurting and angry about it. I’ll bet they haven’t been so good for a lot of you guys, either. And that’s okay, friends. Really. I give us all permission to feel really angry and sorry for ourselves for the rest of the day. You can go cry, or watch a movie- better yet, watch a movie that will make you cry. Throw your pillow across the room. Call your friend and complain. Write a really pathetic poem and post it to your tumblr. It’s okay! It’s going to hurt, and when it does I do stuff like that all the time. At the end of it all, don’t forget to reach out. To your mom, your best friend, your pen pal, your girlfriend or boyfriend. To me.
It’s okay, it’s okay. We’ll try again tomorrow.
You can contact me at firstname.lastname@example.org