A haunting new memoir offers an unflinchingly honest account of living with chronic illness

“Does it need a name?”

These words haunted me long after I finished reading Porochista Khakpour’s recent memoir, Sick. Khakpour hears them from an acupuncturist she encounters during her long road of seeking recovery from chronic illness.

The question encompasses much of what the book is about. Ostensibly, it is about living with Lyme disease. But it is also about seeking a diagnosis, facing up to the medical industry, and finding home  – perhaps all questions of naming.

I waited feverishly in bed for the exact moment on a June morning when my pre-ordered book would be delivered to my e-reader. As someone who lives with chronic illness, I had been waiting for this book for a long time.

We are living in a time when many women are telling stories about their illnesses, their disabilities, their encounters with medical systems. Possibly this was always true, because one of the earliest books on illness was by Virginia Woolf  – On Being Ill. These stories of illness  –  our stories  – have so much in common. And this is what Sick reinforces.

What do so many of these stories have in common? Hospitals, dismissal, disbelief, prescribed medicines, alternate therapies, healing, recovery, illnesses, sisterhood, the internet.

Yet, they are all different too, for our diagnoses and specific realities are often very different, tied together by a want to heard, to be seen, for our conditions and disabilities to be researched.

Khakpour’s memoir is a difficult, unsettling read  – but a necessary one. Her prose is smooth and terrifyingly clear, even in moments when she seems distraught. Her style is not always linear; her story gives the reader no time in which to breathe easy. And for those of us who, like Khakpour, live with chronic illness, it has no straight answers.

It is a harsh tale to witness because it shows us the process of Khakpour discovering the magnitude of her illness, and how difficult it is to treat and manage. It delves into the loneliness of being ill, and what this means for romance and relationships. She is also searingly honest about her addiction and drug use. She names the medications that she is prescribed by various doctors, and struggles with, throughout the book  – looking the “enemy in the eye”, as she says in this interview.

The book was a solace for me; I gobbled it up in a couple of days. At one point, Khakpour writes, “In my head I was always terribly alone, alone in the harsh shell of the body whose states were impossible to translate to others, but for most of it, there was someone around.” I found these lines so relatable because I, too, find it difficult to communicate my body’s pain to those around me, and know too well the feeling of being terribly alone in this pain.

The only times I have felt less alone in my body has been through witnessing narratives like Khakpour’s. Reading other women on living with disability or chronic illness, and witnessing them talking openly about this gives me the courage to be vulnerable about my own life.

In her heartbreaking narrative, Khakpour captures what it’s like to be in the body of a person who knows something is wrong, while doctors spend years figuring it out. She articulates how hard it is even then to accept that something is wrong. Without mincing words, she talks about the difficulties of juggling jobs and medical treatment.

Khakpour is not interested in being a poster-child for either sickness, or wellness, and isn’t concerned with suggesting ways to get better.

I found this very liberating because I often find myself trapped in conversations with other people in which I can either be “the good girl who doesn’t smoke” versus “the bad girl who wants to stay sick”. It is a struggle to remind myself that I do the best I can everyday, and Khakpour’s narrative is like a balm that works to soothe the pain that these stereotypes cause.

As I read the book, at times I found myself wanting to scream to her to take her body more seriously. Other times, I hoped that some doctor would take her pain seriously, even as they remained dismissive and blamed her mind for her pain.

She writes, “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.” Khakpour demonstrates how these medical encounters cannot ever be separated from the politics around gender and race.

This deep emotional struggle around her illness being “real/physical” versus “in the mind” struck a deep chord with me. As she tried to unravel the complications of the commonly heard phrase, “it’s all in your head”, I tried to control my own reactions. The phrase is one I have heard only too often, and I have always hated it. It is after a lot of reflection that I have, like Khakpour, understood the connection between the mind and the body in a deeper way.

As I steadily approached the ending, there was a knot in my heart, and a throbbing in my body. This is not going to end well, I thought.

I wanted a happy ending. I wanted hope. All this while knowing fully well that I myself on most days was neither too well nor beaming with hope. And that so many women who are chronically ill don’t get their resolution either. Just ambiguity and chaos.

But when the end came, and was not “happy”, I was glad that Khakpour didn’t play safe or try to sell a narrative of “recovery” or “wellness” to her readers. She stayed true to many of our realities, which are a lot murkier than that. She left me feeling the chaos that her body was feeling.

I don’t know if we, as a society, deserve Khakpour’s resilience or vulnerability about her unending battle with illness in a world that doesn’t take it seriously or treat those who live with it fairly. On the other hand, it is narratives like hers that open up possibilities for less loneliness and more empathy, and for that I am grateful this book exists.

Sick: A Memoir, Porochista Khakpour, Harper Collins.

Srinidhi Raghavan is a feminist who works on women’s, child and disability rights. She is an introvert, a lover of poetry and sometimes, a writer.

This article first appeared on Skin Stories.