Notes From an Underachieving Body

Being a patient is, to put it simply, fucking exhausting.

When my Crohn’s is well-controlled, as it has been for the past few years, I deal with maintenance to keep it that way. A smattering of pills, a monthly trip to the infusion center, vitamin injections every two weeks. The disease hovers in the back of my consciousness, lying mostly dormant until it’s time for more meds or a check-up.

But when a flare comes, life becomes a whole other ball game. In a flare, it feels like every ounce of energy you have and every moment of your consciousness is spent on your disease. The pill pile grows in size, and a parade of diagnostic tests take over your calendar. You can’t go a day without intense pain, or a week without some kind of blood draw or procedure. Your social life comes to a halt. You are once again, for better or worse, defined by your identity as a patient –– and all you can do is hold on and wait for answers, wait for the bad thing to pass so you can go back to living a normal life with illness only appearing as an occasional guest star.

But right now, my Crohn’s is playing the starring role. Every choice I make is colored by thoughts like, “will doing this activity put me in more pain?” or “is the hunger pain better or worse than the pain that comes from eating?”.

And I know, in times like this, that it’s more important than ever that I take care of myself and try to live as a model patient. Try to eat the right things, take the pills in a timely fashion, keep going to therapy so the depression of being sick again doesn’t spiral. But ironically, in my current state, I don’t want to do any of the smart, good patient stuff. I want to curl up in a ball, watch sitcom reruns from the early aughts, and pretend none of this is actually happening. I don’t want to schedule another colonoscopy, or go to CVS to pick up my nausea meds. I just want to be a normal person who doesn’t have to do any of this, and who can go out with my friends and have fun and live the life I think a 27-year-old woman should be living. The fun life I know I’m capable of under all these IV bruises.

I’m sure you’re familiar with the term burnout –– it’s been the vocabulary word du jour of writers trying to thinkpiece away why millennials are the way we are, and it was just recently recognized by the World Health Organization as a legitimate illness. And while anyone can experience burnout, the specific type of burnout I am struggling with as I type is chronic illness burnout. It’s the sensation that, although I know what I have to do to work with my care team and beat this flare, I am straight up, plain and simple, burnt out of participating in the machinations of being “a patient.”

Much like a person can grow burnt out of a stressful job, patients can grow burnt out of their medical obligations. But unfortunately, we can’t solve the problem by retooling our resumes. There’s no way to just get a new body and start over (believe me, I’ve tried). But that doesn’t make the burnout any less real –– and in some cases, it just makes the feeling of it seem more and more inescapable.

Saying I simply don’t feel like having another colonoscopy, or scheduling another follow up, or dealing with another insurance company call probably sounds silly to some people. And I know I have to do it. And I’ll do it. I will. But sometimes it feels cathartic to admit that I DON’T WANT TO. I’m frustrated by the cards I’ve been dealt. I feel burnt out, and tired, and apathetic. The part of me that, several weeks ago was desperate for answers is now just desperate to take a Snow White-style nap until this all goes away on its own.

This isn’t a “how to get over burnout” piece, because clearly I don’t have the answers. But this is me saying that if you feel worn out from the arduous task that is trying to live your life in a body that keeps failing you, you aren’t alone. And it’s okay to admit that this really, really sucks sometimes. And then, when you’ve determined that you can’t sustain this anymore –– it’s okay to ask for help. Because none of us can do this alone, and small coping mechanisms can make a major difference. So I’m going to go balance out the full-time work of being a patient with some heavy self-care and hope for the best. Because sometimes it’s okay if all you did with your day is get through it.