Q&A: Porochista Khakpour’s long struggle with being ‘Sick’

The path to Porochista Khakpour’s memoir “Sick” was not easy. The book, about her long battle with Lyme disease, was delayed after she was in a car crash that left her with a brain injury – and then a Lyme relapse. After these events, she decided to change the focus of what she calls a “miracle book” that is “kind of messy.”

The Iranian-American author of two novels was born in Tehran and raised in the Los Angeles area and now makes her home in New York, although she recently left her apartment in Harlem after construction exposed her to materials that affected her health. In “Sick,” she details her quest to understand her illness and seek a cure, her trials in the healthcare system, and her relationships with parents and partners.

As Khakpour visits Los Angeles during her book tour — she’ll be at the Last Bookstore Thurs. at 7:30 p.m. — she spoke with The Times via phone about her writing process and how “Sick” has ultimately saved her life. Our conversation has been edited.

You open the book with an interlude titled “On the Wrong Body,” where you explain that you’ve never been comfortable in your own body. With your illness, you write that you will “never be at home, perhaps not even in death.” This is a chilling statement. Why put it at the beginning?

Those vignette sections that you see in there were added later, parts that I felt maybe weren’t explained in the book. If I wrote this when I first got diagnosed, I wouldn’t have had the strength to talk about PTSD in the way that I do here. I would’ve been really reluctant to make that connection because I would’ve been so defensive about the illness itself, and it took me so long to get taken seriously.

I wanted to be as honest and transparent as I could. I wanted to talk about the fact that I don’t know when this illness came to me, but I’ve always had a feeling of unease in my body and all sorts of dysmorphia, but that could mean a lot of things. I mean that could be like, there’s some idea, there’s a chance I got this and other illnesses in early childhood, but whatever it is, I mean Lyme attaches to whatever your vulnerabilities are. And certainly the first three years of life in this world were very traumatic for me and so I don’t feel weird about talking about that. I feel that’s important.

In the book, readers follow your journey trying to understand your illness and your relationships with men who are trying to fix you, and a search for balance of career and home. You write, “I am a sick girl. I know sickness. I live with it. In some ways I keep myself sick.” When you finally received your diagnosis, did you feel like you’d found the sense of place that you were looking for?

It’s funny, I was really tempted to take out that line, “I keep myself sick.” That was the thought I had at one point -- wow, of all my identifiers the one that seems like Americans can be most at peace with is maybe this one. Someone with chronic illness and disability -- ironically Lyme disease being primarily associated with affluent white people in the Northeast where I was living. I can’t tell you that today I feel like, “Yay, I keep myself sick.” I feel really plagued. To me, I would do anything not to have this. There’s lots of statements that might seemingly contradict themselves in this book, but I feel like they’re the honest truth of the different stages and the complexity of Lyme, which is a constant up and down. It’s really complicated.

“Sick” feels like a mystery, with readers wanting to discover when and where you contracted the disease and when you will be diagnosed. Was that intentional?

When I started writing it I had a few jokes. One was that it was going to be “Sex, Drugs and Lyme Disease,” and the other joke was that this is like a murder mystery because -- luckily the thing hasn’t killed me yet -- it was trying to figure out where it could have come from. All the doctors had different theories. I had different theories. All of them get really messy if you’ve had a lifetime of not feeling perfect. Very few people have that textbook Lyme diagnosis where they get a rash, they go to a hospital, they get taken seriously, immediately get treatment and end of story. … For me this idea of digging and digging and spiraling felt true to the experience that I was having then; that I still have now.

Although this book deals with a complicated disease that has a lot of conflicting medical research, you write in layman’s terms. Was it a goal to make it easy to understand?

Yes, that was a big goal of mine. I’ve been loving people saying they can read it in one sitting. I started thinking of the people that I wanted to have read it, and a lot of that audience would be people with illness; I wanted them to get through this book. I also didn’t want it to be so Lyme-specific. Lyme has so many overlaps. I’ve had casual diagnoses, fibromyalgia, chronic fatigue, my blood work has turned out positive for a lot of other immune diseases and it goes away. Also, with Lyme, research constantly throws you new loops. I just tried to get to the really human elements here and actually just really stick to what the story is for us. I wanted it to be about feelings. And there’s plenty of books with data and the books conflict with other books of data and there’s plenty of research, but it wasn’t what I wanted to tell. I wanted to tell a story of one woman’s experiences, which may or may not have overlapped with others’.

Porochista Khakpour in 2007.

(Glenn Koenig / Los Angeles Times )

You write that women often receive a misdiagnosis for Lyme, even later than men, because they are judged for having psychological issues instead. What would an early diagnosis have meant for you?

That would have completely saved my life. I certainly wouldn’t be in late-stage Lyme like I’ve been for years, so much systematic damage and all sorts of sensitivities. Something I always say is Lyme is something if you catch it in time, you have pretty good odds. That’s like one of the things that is infuriating about the whole thing. It would have meant everything. It completely would’ve changed my life. It would have saved me so much grief. So much suffering and so much thinking I was crazy. By the time I got the diagnosis, I was even doubting the diagnosis.

The cover art of this book is striking. Did you take this photo of yourself? Why did you decide to use it?

That was a selfie back in 2011 or 2012 when I’d just be in bed for hours at a time either in hospitals or at my doctor’s office, taking photos, like, Who am I? What happened to me? How do I feel right now? How am I managing? That kind of impulse because there is no protocol when it comes to Lyme. You’re just kind of stuck trying to figure it out with your doctors, so that’s where I was there.

You’re in the midst of your book tour, you probably haven’t really had time to relax.

I’m trying. I guess in some ways I’m lucky to not be working right now, but then of course with Lyme you’re always worried about that too with expenses, but I’m kind of devoting myself full time to getting better. I’m still doing events. Some of them I feel so horrible and others, I’m just trying to get through, but the energy of people rooting for this book enlivens me and makes me feel grateful, so in a funny way, the book coming out has been a good distraction of my own health.

Brown is a writer based in Los Angeles.