‘Sick’: A Memoir Of Disease That Feels Like An “Act Of Resistance”

"I often tell people it’s an act of courage to even put your story out there," Porochista Khakpour tells me over the phone. We're talking about her new memoir, Sick, in which she chronicles her experience with Lyme disease, addiction, anxiety, and the fact that, as she writes in the book, she has "been sick my whole life. I don’t remember a time when I wasn’t in some sort of physical or mental pain, but usually both."

"Courage" is a good word to associate with this memoir; it's a word that can feel overused when it comes to personal narratives, although it's important to question why it feels overused. Is it because those narratives are often written by women? And other marginalized groups? Is it because our culture is quick to dismiss as unimportant the kind of suffering that doesn't have a clear beginning, middle, and end, with a perfect victim at its center?

Sick refuses to be the kind of illness memoir many people might want, or at least expect. Though compactly written (I tore through it in a day), it sprawls in other ways, offering a rangy look at Khakpour's life, from childhood to present day, and following her from Iran to California to New York to Chicago to New Mexico, as she restlessly moves throughout the world, driven by different passions and needs and desires. There is a persistent sense of dislocation within this book, not only because of Khakpour's constant travels but also because of her years-long struggle to find herself within her own mind and body; "I have never been comfortable in my own body" is the book's first sentence. 

And indeed it is Khakpour's, who escaped a revolution-torn Iran with her parents as a young child, dual search for home—not only in an external sense, but also in her desire to find shelter within herself—that makes this book a courageous act, one that speaks to what it means to live in a society where your voice might not be trusted, because you are a woman or a person of color or otherwise easily doubted, and to live in a body whose mysteries you don't understand. As has been well-documented, women—and particularly women of color—are rarely believed when they talk about their illnesses (the term "hysteria" was, of course, coined to describe excessively emotional women), and so their stories and their woes are devalued. This is tragic enough when it comes to diseases that are well understood, but it takes on a new form of frustration and farce when dealing with already little understood ailments like Lyme. Khakpour, an acclaimed novelist and essayist, uses her experience to expose the difficulties of being sick—sometimes in an easily diagnosable way, and sometimes not—in a society that doesn't want to believe that her problems are real, and she does so with a sensitivity and frankness that feels not only brave, but like it can help others who are struggling with similar situations.

Below, I speak with Khakpour about the difficult parts of writing this book, what it means to be chronically ill, and how Sick feels like an act of political resistance. 

I wonder if there are any two words that can illicit as dramatically different responses from people as the words: "I'm sick." As many people will recoil from you as they will reach toward you to help. What has been your experience with the idea of being around sickness throughout your life, even prior to being sick yourself? Is it something you think is important to teach people about from a young age?

I was often “sickly” and seen that way, though in very destructive American ways: praised for boniness or pallor at times when I was clearly ailing. I grew up with a strong affinity for underdogs, and I often saw those as the mentally and physically ill. (I hate calling them that today because they are my people, my heroes, my loves and I don’t like the implications of “underdog.”) I never felt I could live up to or compete with this idea of American health and wealth and robustness. So I just saw others. I never lusted after or envied the perfect prom queens—I never bought into all that. I just tried to make my disadvantages survivable, and I still try this. A part of me hopes young people can be shielded from the suffering that made me that way, but another part of me hopes communities can let young people really understand that the person in the wheelchair or the person missing a limb or the person with facial palsy or whatever IS beautiful. I want kids—and I do see this a lot today—to look at these glamour shots on magazine covers and feel at least a bit skeptical. Gen Z seems to reject a lot of this bullshit, and I love them for it! I wish we had pushed back more ourselves!

You write beautifully about your experiences with different people reacting to your sickness, from friends who supported you through dark days, to your mother helping you move out of untenable situations, to feeling a lack of support from your parents, to doctors who alternately believed you or were skeptical of your story. What did these varying responses tell you about the way we treat sick people in our society? 

I think they say something very sad about our culture. And I don’t just mean American culture. I am talking about mainstream or dominant cultures all over the world, including American culture. Misogyny, white supremacy, patriarchy, homophobia, transphobia, and, of course, ableism—these are all part of the same very toxic culture. I mean, look up Aryan Nation and Hitler and Nazi Youth, and you just see all of these poisonous ideals that still very much exist today. We want to banish the sick. We need them to get well to love them; we need to reward them when they look and act a certain way. Well, so many people who say they love me, have turned this energy on me. It’s like they believe I caused this and I deserve this, and they pity me and they don’t want any part of me that scares them—perhaps about their own mortality. I love my mom so much, and she has come a long way, but she still texts me: “Are you better yet? What is taking so long? Did the doctors fix you?” It amazes me that she doesn’t realize why this would hurt me—and I try to just accept she is doing her best and means well—but, man, we need to educate the whole globe on how to care for people in distress. Because I hate to tell you, that’s a whole lot of everyone. Illness gets everyone in the end. It is very rare to live a life without the body or mind causing you some challenges.

Your experience being sick has been very much informed, for better or worse, by your experience as a woman, as an Iranian-American, as a writer, as so many other things. And yet, for all its specificity, it feels like part of our culture's collective struggle to figure out what to do about chronic disease, those who suffer from it, and our inadequate health care system. At what point did you realize that your specific story could work in such a broad way?

I started talking to people, and I realized more and more that we all have so many overlaps and, of course, I was paying attention to the news and seeing in a macrocosmic sense why this journey failed me and my friends so much. And I realized after I just put my story down, even with all its flashbacks in spirals, that I’d need to have these little interlude vignettes that zoomed out a bit and addressed themes in my story in a larger way. So it sort of organically broadened as I struggled and dealt with the sort of endless ongoingness, as my friend Sarah Manguso puts it, of my condition.

While the memoir revolves around your struggle with Lyme disease, addiction, anxiety, and other ailments, it spans the course of your lifetime. Did you always know you wanted its reach to be so all-encompassing of your experience? 

I really did not expect that. I tell all my creative nonfiction students to remember memoir is quite distinct from autobiography. And then somehow, this slim book I wanted to write had bigger plans—it wanted an autobiography from me! I mean, it is still short for me and certainly keeps out chunks, but this expansiveness came from realizing I had to face that I did not know where this illness came from. Doctors didn't either. And I wanted to tell the story of my PTSD and how it intertwined here. So you’d have to begin with my very initial traumas—which were the Revolution in Iran and then the Iran-Iraq War and then eventually after many years of being without a home and then coming to America as a refugee on political asylum. It felt very weird to omit those narratives.

What parts of this book were the most difficult to write? Were there any parts which you were worried about putting out in the world?

The whole book made me pause, for sure. I never expected to write a memoir like this; I’d written essays before, but a full-length memoir, and one that would eventually span my whole my life, was not the original goal at all, and that would involve family, friends, partners, professors, everyone basically, it was a big, big question and a big worry, and something I worked on. It wasn’t until the discussion with [my publisher's] legal [team] that I really had a sense of where I was with this book, and what were the implications. And I had [a lawyer] who called herself a “feminist attorney” at Harper Collins, who went over everything in this book with me. And there were days and days of prying and wondering if this is the right thing [to include] or not. I basically got to an equilibrium with it all, because in most cases, I was rounding up on people. Anyone here that looks bad, legal can tell you that there is so much worse I could have put in. But I think what they realized is that, if there were a lawsuit against me, I wouldn’t have the privilege to be able to fight back. So legal's whole approach was to be ethical as well and to make sure it’s not something where I destroy my life. 

Part of me just wants to be completely transparent all the time and completely honest, but you know. And there were things with my parents... I had to grow into, again, a point of equilibrium with them, where I realized I just can’t always be angry at them, at their mistakes. Or angry at their lack of full understanding and being there. I had to understand that it’s not always easy to take care of a sick person, and how do you do it when the medical world and the health care world doesn’t help you?

How do you stay hopeful about your situation when you deal with chronic illness? A lot of people use very aggressive, combative language when talking about disease, and it can often feel like there's only one "right" way to talk about illness.  

Hope is a dicey thing sometime with illness and disability because I have a tendency to become overly optimistic and overly hopeful and I’m like, “Alright, I’m better, let me live my life,” And I get overly exuberant and it kind of trips me up sometimes. At the same time, you need some degree of hope, and at times, I’ve been completely hopeless because of pain and inability to sleep, or inability to eat, losing just the basic life stuff that people usually take for granted, so it becomes kind of complex; how you can write about hope, how you can write about the lack of hope even? My whole thing there is, you write with openness and transparency, and you hear people with openness and transparency, and you don’t judge. If someone has terminal cancer and feels negative, that’s really understandable. I don’t like the world that says cancer patients have to be a certain way, they have to be positive, they have to be fighters. They can be whatever they want! I don’t believe that cancer cells respond in those ways. Same thing with Lyme, I don’t believe in magical thinking, that someone thinks their way out of it. Generally, the people who do get better, as I have, usually have access to tremendous medical care. That’s the way that that works. I have so many different modes and MOs that are scattered throughout the book. I've met people who only think one way, and then you meet that person in a couple of years, and they have a totally new mindset. People are not stagnant, static beings, they have different ways they respond to all sorts of things. That’s why I think the book, or even me, can be frustrating to people, because I don’t tend to be very committal about a single way to be, I stay away from prescriptivity in general. I’m definitely imperfect, and I think that every person who deals with illness has to be at peace with their imperfections.

What things have you read that have helped you get through the worst parts of your illness? 

Darkness Visible [by William Styron] is definitely one that I talk about that was definitely a help. That was something that gave me permission to write a messy narrative, gave me permission to write an honest narrative, gave me permission to write about being an author, as well as a woman. It gave me permission to name meds that hurt me by name, which Styron does very unapologetically. Then the summer that I got the book deal, I decided to look a lot more closely at memoirs by women authors who had written about illness or overcoming something, and it was incredible to see what a huge body of work there was: Susannah Cahalan's Brain on Fire, Cheryl Strayed’s Wild, Lidia Yuknavitch’s The Chronology of Water. I tried to sit with a lot of that work.

How does social media help you during the most difficult times?

Social media was really indispensable for me. I have been online for a really long time. I was on early with Prodigy and AOL message boards from the mid-'90s, because I was often depressed and needed to see life outside my small suburb outside of L.A. So that was often a really important outlet for me. And then when I got really, really badly sick, in 2011, a few years after I’d joined Facebook and a year or so after I joined Twitter, I started really reaching out to people for advice and for commiseration. I found I had a sort of natural tendency [for it], which was really helpful for me and really got me to feel better about myself and feel better in the sense that I know there is a world out there and that I could be part of that, and there could be people there and I could help them and they could help me. So often where you’re reaching out, you’re just desperate, and there are all these hours of the day and you can’t go through them like others do, so this is how you reach out. It’s very pragmatic in one sense, and it’s also, emotionally and spiritually, very helpful. For the most part, I have really kind communities who are really there for me. When people talk about leaving social media, I always think, Oh my god, that's so much privilege on so many levels. It's like those people who can kind of exist outside of knowing the news. Like, wow, how does that work?

You've used crowd-funding to help with treatment bills. What do you think it says about our society that this has become a commonplace thing, with Americans regularly turning toward social networks to simply have a chance at staying alive?

We all know the health care system in this country is absolutely broken, so what can we do? This is the only way that can save people’s lives. Sometimes I think people think we’re indulgent or unnecessary, I sense an annoyance, or maybe that’s my own perception. That's sort of a libertarian or Ayn Rand way of thinking, but all those people will get to a point where they realize that their insurance companies or their jobs are not the things that are going to save them. There’s that ideal of American individualism and the myth of the maverick, and it’s romantic, I guess, but it’s not really functional, and it’s borderline delusional, actually. That’s something that the rest of this world understands much better than this country, and that’s why they believe in communities and families of all sorts. 

It’s a bizarre thing to romanticize at this point in time, that kind of aloneness.

That’s the thing about privilege, right? Who are the people who really benefit? Even a lot of privileged people don’t benefit from these rules, and I think a lot of people are now seeing that, slowly but surely. Everyone thought they’d be rescued and they’re not. And who is that narrow group that’s going to come out shining through this mess?

It’s a small number of people, and I hope they feel profoundly ashamed, but I don’t know if that’s in their intellectual makeup. What does the future look like to you? 

It’s a question I have to be careful with, because sometimes I go too far, and I worry too much, and I get overly attached to this idea of a future, and I’ve had to keep that in check a little bit. It has been challenging to think of what the future is, but the thing I can say is, "I’m alive, and I just want to be as well as I can be so I can fight this administration a little bit more." People are telling me this book is an act of resistance, and that’s helpful to me as well. I’m just trying to figure out how to be right now, and it’s challenging, for sure.

Sick is available for purchase here.

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