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On being "Sick."

On being "Sick."

As someone who recently finished reading “Invisible” by Michele Lent Hirsch and “Doing Harm” by Maya Dusenbery, Porochista Khakpour’s memoir “Sick” seemed like a natural next item on my reading list. But whereas the former two books focus on facts, numbers, and anecdotes from a variety of different patients, Khakpour’s take on life with chronic illness is purely memoir –– a fact that, at first, made me uncomfortable.

I couldn’t figure out what about her story was making me uncomfortable. The book is written in Khakpour’s beautiful, heartbreaking style of prose and it’s a fully engaging read from beginning to end. So why did I find myself pulling back from fully loving it?

I’ve been “sick,” in a different but ultimately similar way to Khakpour, since I was a teen. Before that, really –– I identified all too well with her assertion that she’d never felt comfortable in her own body. My particular ailment comes in the form of Crohn’s Disease and its comorbidities, but even before that, I was never healthy. Chronic migraines, randomly crossed eyes, nine cases of pneumonia before the age of ten. Sick is the mode by which I have traveled through the world.

Khakpour has had a similar experience, and yet I initially found us to be so fundamentally different from one another. I am a noted perfectionist (in this case, a nice way of saying “people pleaser"), always striving to make others comfortable and happy with me and the things I do. This week, a rude woman yelled at me for being in her way on my side of the sidewalk –– and still, I apologized. In school, in jobs, and even in therapy, I’ve sought to win the game and make people like me in whatever way I can. I know what to do to succeed. To be taken seriously. To look good to others.

And I finally realized that was what was holding me back to connecting with Khakpour and her approach in “Sick.” I’ve never, even with myself, let alone others, been able to achieve her level of radical honesty about my circumstances. I’ve always wanted to be the good girl, and in sickness, that has translated to a desire to be “the good patient,” an ideal that this book has made me realize is impossible to attain –– because it doesn’t actually exist.

Toward the end of “Sick,” Khakpour admits to being “a bad sick person.” She’s eaten poorly, she’s done drugs, she admits to relishing in her own mortality. Inspiration porn tells us who the “good sick people” are –– they’re the ones “overcoming” their disease, not letting illness “define” them. The ones who make for pretty faces on patient foundation marketing materials. They’re a myth. Khakpour is a real person. She’s living. She’s making mistakes. She’s not here to be your inspiration. She’s just trying to keep herself alive, and do what she does best, which is tell her story along the way.

Once I confronted the fact that I was holding back how much I loved this book because I was afraid of what it meant for my status as a “good” sick person, I felt freer than I have in a long time. Because like Khakpour, I am not an inspiration. While people have told me that my story has helped them better understand their own, I don’t tell it out of selflessness. I tell it because when you’re a writer, telling stories is what you need to do to survive.

I was also afraid to embrace this book because of how other people would perceive it. There is so much negative stigma around illness, medication, and disability as it is –– and trying to fight that stigma is what pushes me to be an example of a “good” patient. But you know what? That’s not on me, or any of us. Illness is not a monolith. We are all different, and all of our stories are valid, even if they don’t advance particular narratives. And people who want to doubt you are going to do so, regardless of what a good mask you put on.

I was ultimately afraid that if I admitted that I wasn’t the perfect sick person, or if Khakpour admitted that she wasn’t, that it would give credence to the people out there who want to doubt us. Who want to believe that sick people just want attention, or are just lazy, or are just addicts. People who tell you that your pain is in your head. People who buy into any of the many demeaning stereotypes about the sick and disabled. But here’s the thing: I’m not here to be a beacon of education and understanding for those people, and neither is Khakpour, and neither are you. You are here to live your life the best way you know how, sickness included. And if the way you cope with that sickness makes people uncomfortable, makes people want to tell you to keep it to yourself? Good. The state of affairs for the chronically ill in this country should make them uncomfortable.

So in honor of Porochista Khakpour authentically putting herself out there in a way that I find impossibly admirable, I promise that I will strive to exude that same level of radical honesty in telling my own story. I won’t make light of things that hurt. I won’t worry about being labeled by a binary system of “good” and “bad” patients. I will tell my story, like “Sick” tells Khakpour’s story, and I will leave it to others to cope with my undeniable reality as they see fit.

Mind Games

Mind Games