Chronic

I woke up early this morning. Dressed for success. Texted with coworkers who were apprehensive about coming into the office today, because of the explosion on Saturday that happened only an avenue away from our office. Our office, which is in a historic, iconic building. We were literally discussing the likelihood of being bombed. The world we live in.

But never mind that, because today was my day. My stomach hurt when I woke up, but never mind. I've been very stressed at work lately, and today that was going to change. I had big plans to slay the day. Knock out some assistant things in the morning. Edit this afternoon. After work, the book club I organized for my coworkers was going to have its first meeting. Then I was going to crash the end of my brother's band practice and attempt to play the drums, something I've always wanted to try.

At noon, I realized this day was not going to go according to plan.

I was on the floor in a private bathroom in my building. For an hour. "It's happening," I told my dad over the phone, struggling to speak because when my stomach gets like this and my body feels like it's suffocating because the air is too hot, too hot, it's difficult to say anything at all. "I can feel it coming. God."

And then I threw up. In the bathroom at work, in a bag on the car ride home, in a trashcan in my room.

This is what it is to have a chronic illness. You try so very, very hard to not let it control your life. And often (in my case), if you're lucky, you succeed. But there are days when no matter how much it infuriates you, your illness will win.

I wrote the below almost exactly a year ago today. It's not very well written. More a collection of thoughts and lists and ranting -- but I'm not going to rewrite it into something better. This is what it is to have a chronic illness. The things you write a year ago will still be true today. It will never go away.

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Sept. 14, 2015

I hate finger pricks. Every child does. The one bright spot is that you only have to endure them once a year. That's the deal. One prick, and then the tiny, evil needle and the creepy tube that sucks up your blood are out of your life.

At my eighth annual checkup, this was the plan. Get in, get out.

I remember the finger prick. I remember the look of concern that my pediatrician, who was also my mother's best friend, wore for the remainder of the visit. I remember everything felt very serious. I remember the recommendation that I go to the hospital for further testing. I remember my mom calling my dad on the drive over. I remember being confused.

The rest is a blur.

I was diagnosed with Crohn's Disease when I was eight years old. There, I said it. Which is significant, because I almost never do.

I wrote that line and then reread it. Over. And over. Every single time, I felt a pinch in my chest. A little stab of discomfort. Because it has been a part of my life for most of my life, and I am still not comfortable saying it. It is impossible for me to read that phrase and not react mentally and physically.

I hate the word disease. I hate it. I hate it. I could explain why. I could also tell you to try standing in front of a mirror and looking yourself in the eye and telling yourself that you have a disease, you are diseased, and I think that would probably tell you everything you need to know.

I grew up utterly confident in the belief that telling people would only lead to awkwardness and unhappiness. My brain has been telling me this for so long that it has just become a part of me. I don't want to make excuses for shortcomings. I don't want to be "the sick one." I don't want my illness to define me in other people's eyes. I don't want it to define me.

The thing about having an invisible, chronic illness is that, eventually, you get used to it. But sometimes someone will unintentionally remind you that you're different. That your normal is someone else's sick. And in those moments, it grates on you.

For me, when I am having what is called a flare-up (a period of very active disease), having a chronic illness means that my normal energy level is a healthy person's low.

It means that a friend will tell me we have to walk a few blocks to the subway entrance, and I ask her how many, and she tells me six, followed by a critical, "Is that too much for you?" And I say no, I was just curious, but really I am on the tail end of a one-hour period of keeping my face completely blank while feeling like my stomach is going to explode, it must explode, because it my intestines are inflamed and too full of trapped gas. And I am tired.

It means that one second I will feel fine and the next I'll feel the urge to go to the bathroom, and then it's if I don't get to a bathroom in 20 seconds, I will literally shit my pants.

It means that every time I step outside, it is a risk. Because where are the bathrooms?

It means that I get a lot of stomach aches.

It means I sometimes can't stand up straight because my stomach hurts too much. Someone may walk into my office and see me standing at my desk, shuffling some papers and smiling, when a moment before I was bent over in pain but righted myself when I heard them coming.

It means I'll be playing Heads Up with a few friends and have to retreat to my bedroom for a moment and lie down on the bed because my stomach is in agony.

It means that I become severely anemic. The normal hematocrit range for a woman is, according to google, 34.9% to 44.5%, and my doctor told me I was at 5% and he doesn't understand how I can say that I'm fine, how I'm not lying on the ground from exhaustion instead of going to work at normal hours every single day.

It means that I accept this news and tell my mom not to worry as I talk to her over the phone, only to have a panic attack at the end of the day because I think that my body is going to spontaneously fail.

It means that sometimes I don't want to eat.

It means that I have put off eating before, even when hungry, because I am afraid of the pain that I know will immediately follow and stay with me the rest of the day.

It means that I have a lot of gas. And no, it never stops being embarrassing.

It means that I have to sit across from an attractive Irish nurse and discuss my bathroom habits with him while trying not to die from mortification. Frequency. Consistency. Any blood or mucus?

It means that I want kids, but I am also afraid to have kids, because I am afraid of passing this on to them.

It means that I constantly feel guilty for costing my parents so much money. I cannot even fathom. And it doesn't matter how much they tell me that that's ridiculous, because even when I say that I agree, I will never stop thinking it.

It means that I spend a lot of time comforting the healthy people around me.

It means that I have friends who are afraid of needles, and I genuinely sympathize but also can't identify, because at this point I am almost immune.

It means that, during an overnight hospital visit at maybe nine or ten years old, I had nurses stab me thirteen times with needles, trying to find a vein, before my dad kicked them out at four in the morning and said that no one could bother me until I had had two hours of sleep.

It means that I spent a lot of time in hospitals.

It means that I have had surgeries. That I get colonoscopies, even though I'm not a middle-aged man. That a friend jokingly compares me to an old man one day, and her comment stays with me for days.

It means that, if I'm in excellent health, I can go six months without seeing a doctor.

It means that I have tried a lot of medicines. It means that throughout most of college, I had to give myself shots in my stomach once a month. It means that I requested a single room rather than a double during my study abroad experience because of my health and then pretended to everyone that it was luck. It was easy, really. I have gotten so damn good at lying.

It means that I make myself worse from stress. I literally make myself sick.

It means that many people who know me will be surprised to see me write this. It means that I will probably never post this.

It means that I will spend the weekend at the house of one of my best friends in the world, and I can sense her confusion, because she hasn't ever really seen me when I'm having a flare and she doesn't understand. She doesn't understand why I admit to her that going to a bathroom-less island for two hours is risky for me. So I revert to silence, because it's easier.

It means that I genuinely do not begrudge any healthy person his or her good health.

It means that, if I had the option of choosing who in my family had to have Crohn's, whether it was me or one of my parents or my brother, I would choose myself instantly every time. I have thought about this a lot. I'm not sure why.

It means that I am constantly aware that many people have it much, much worse, and I am grateful to only have what I have.

It means that I am not writing this to complain. I am not writing this to garner sympathy. I am writing this because I have kept it hidden for so long, and I'm not sure I want to anymore.

It means that I'm trying to convince myself it's okay to share.

I am trying to convince myself that it's okay.


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What would I add to this now, returning to it a year later?

I guess I would add how depressed I've felt the past few months, how I've struggled with the feeling that my body is trying to kill me. How I've scheduled my first ever therapy session because for weeks now I have felt that if I just stopped for 30 seconds to think, I would cry. Every time.

I would also add that on the first day of my Canada trip this summer, I was violently ill. My stomach was in agony. I vomited at least twelve times. I shivered uncontrollably. I faded in and out of consciousness. I can honestly say that I felt like I was going to die.

The next day, I climbed a mountain.