Porochista Khakpour is an award-winning novelist, essayist, and writer. Ahead she shares an excerpt from her newest book, Sick: A Memoir, out today, about her journey battling mental illness caused by an undiagnosed chronic disease.
In telling this story, it occurred to me that it wasn’t character or plot or even theme that was the ruling principle of its composition, but something far less likely: setting. I wondered why setting would feel so foreign to me, when location changes have been more than simple set switches for me. One could imagine the variations in physical location are what, in some ways, got me to illness—and Lyme disease—in the first place. It wasn’t Iran, but then was it California, was it New York, was it Pennsylvania, was it…where? I would be destined never to find the bite on the location of my body, just as I’d be destined never to know the location I was in when bit by the tick. The question of where would be the most mysterious of all.
In recent years I’ve had many discussions with various doctors about Lyme and have seen how their opinions and protocols would shift. Usually they would land on this idea: The truth is we know very little about this illness. It would drive me crazy, as if it were all guesswork, and I’ve found that I’ve never completely abandoned doubting it. But there’s something I’ve held on to, that I’ve heard from more than one doctor: the link between chronic illness and PTSD. If post-traumatic stress disorder can be defined as “a mental health condition that’s triggered by a terrifying event—either experiencing it or witnessing it (symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event),” according to the Mayo Clinic, then it makes sense that it can trigger a relapse or surfacing of some disability or illness. The disability or illness itself could cause the PTSD, and the experience of going for years undiagnosed and then misdiagnosed as many like myself do can cause considerable trauma, to put it mildly.
“Women simply aren’t allowed to be physically sick until they are mentally sick, too.”
It is no coincidence then that doctors and patients and the entire Lyme community report—anecdotally, of course, as there is still a frustrating scarcity of good data on anything Lyme-related—that women suffer the most from Lyme. They tend to advance into chronic and late-stage forms of the illness most because often it’s checked for last, as doctors often treat them as psychiatric cases first. The nebulous symptoms plus the fracturing of articulacy and cognitive fog can cause any Lyme patient to simply appear mentally ill and mentally ill only. This is why we hear that young women—again, anecdotally—are dying of Lyme the fastest. This is also why we hear that chronic illness is a woman’s burden. Women simply aren’t allowed to be physically sick until they are mentally sick, too, and then it is by some miracle or accident that the two can be separated for proper diagnosis. In the end, every Lyme patient has some psychiatric diagnosis, too, if anything because of the hell it takes getting to a diagnosis.
My PTSD was always tied to setting, with my family leaving Iran at war and revolution and coming to America as foreigner refugees on political asylum. There was never a home for me as a human in the world—which is why moving around was almost easy. There was never a home for me outside as there was never a home for me inside—my own body didn’t feel like my own. There was never a context in which I got to know it, to be at peace with it. Only recently do I wonder if that has to do with being considered “foreign” or an “alien” or “outsider” or a host of any other less kind terms for us. How could I recognize myself if no one else could? Los Angeles and New York proved to be homes of sorts after Iran—suburban Los Angeles where I was raised and grew up, and New York City where I came to adulthood and found my career. But even there I would lose myself at times, which made trying to pin down the body and its conditions all the more impossible.
“It was no wonder to me that I would often become sick after some external political stressor, like the Paris attacks, or the election of Donald Trump and its endless horrific aftermath of mainstream bigotry.”
My Lyme relapses almost always coincide with global turmoil. It was no wonder to me that I would often become sick after some external political stressor, like the Paris attacks, or the election of Donald Trump and its endless horrific aftermath of mainstream bigotry. When the Muslim ban became a constant on the news in 2017, when I found my home country rather unsurprisingly on the list of six countries that had been designated problems according to this administration, I immediately had an acute plunge in health.
I’ve been back on antibiotics since and now can’t imagine being off them, not as long as Iran is in the news like this, not as long as all the trauma of my childhood comes back to me in waves these days. It’s a return to hearing “go back to your country” regularly, especially online, and it feels like the most familiar nightmare. When I feel myself getting sicker as a result of the news, a part of me panics—is this just psychological? Was it just PTSD all along? Were some of those early doctors right, the ones who just thought I was crazy? How could my body erupt in a chaos of spirochetes each time my mind and body suffers? How does that work? And yet we continue to find evidence of the mind and body connection.
“When I feel myself getting sicker as a result of the news, a part of me panics—is this just psychological?”
It has taken many years to see my own shell, this very body, as a home of sorts. I can report that even now I struggle with this concept, that even as I type these words, something feels outside of myself.
I sometimes wonder if I would have been less sick if I had had a home.
From the book: SICK by Porochista Khakpour. Copyright © 2018 by Porochista Khakpour. Reprinted courtesy of Harper Perennial, an imprint of HarperCollins Publishers. All rights reserved.