I was knee-deep in a swamp of skepticism when I picked up Sonya Huber’s essay collection, Pain Woman Takes Your Keys, for the first time. This had nothing to do with Huber and everything to do with the book’s central theme: living and coping with chronic pain. As a chronic illness sufferer myself, I’ve many a time searched out accounts from people sharing similar struggles. Nearly all of them have disappointed me. Which I realize might sound snobby (is there really a “wrong” way to write about personal suffering?), but I do have my reasons: Oftentimes I notice right away that a piece is meant for a healthy audience. The author begs the general public to understand how terrible it is to live with their illness, strikes down hurtful misconceptions, pushes for a spreading of awareness. Other times the writing swings towards the opposite pole, as the author tells their tale of triumph by having overcome their condition or learning to somehow be grateful for it.
I couldn’t enjoy those stories because I neither needed them nor could connect to them. I’m already very aware of how impossible it is to live with chronic mental and physical illness; on top of anxiety and autism, I lug around a variety bag of chronic pain and fatigue. I’ve always been, and always will be, sick. Even though I would love to feel uplifted or comforted by these stories of suffering and success, I don’t. They just remind me of what I have and what I’ll never be able to have. So I very much had my guard up when I opened Pain Woman Takes Your Keys, expecting more of the same. Then I read the preface.
Let me tell you exactly where, in the first paragraph of the book, I let out an audible sigh of relief: “Above all, I hope to connect with other people who have visited the land of pain or who are there now, to help us collectively understand this experience that is an inextricable part of being human.” Okay, I thought. I can get on board with that.
The first piece in the book, titled “What Pain Wants,” starts like this: “Pain wants you to put in earplugs because sounds are grating.” Have you seen that meme where Gordon Ramsay takes the first bite of a meal, looks down, and just says, “Finally, some good fucking food”? That’s exactly how I felt by the time I reached the end of that piece. Finally, some relatable fucking writing. I read the entire book in one sitting.
Each of Huber’s essays reference pain in one way or another. Some, like “The Alphabet of Pain,” provide a more general overview of her experience with rheumatoid arthritis, the disease that entered and simultaneously overthrew her previously healthy life. Others focus more specifically on figures in her life; “Cupcakes” illustrates how pain places itself between her and her young son, and “A Pain-Sex Anti-Manifesto” explores the complicated and often frustrating details of her and her husband’s sex life. Then there’s “Augmentation,” an essay about her love-hate relationship with her brightly patterned, clanky metal cane: “I realized [the cane] loved me in its own way, and in my own way I would fight with that love, push it away, chase it, scorn it.” I’ve noticed Huber is careful to tap into the complexity of everything she discusses, which I attribute to her admirable self-awareness. The cane is neither simply “bad” nor “good”—it’s a necessity, a friend, an extension of herself.
Somehow, her words about this cane fed me ten times more inspirational energy than any account of chronic illness I’ve read in the past, and I don’t even own a cane. I was still able to relate to a certain phenomenon the cane brought about: the way it made her illness suddenly, unavoidably real to the people around her. People can tell her she looks great, that she seems to be doing well just because she’s got makeup on that day, but it’s a whole lot more difficult to ignore a big metal stick clanking along the ground.
Just as Huber has her cane, I have my pills. I take a lot of supplements, three times a day, in an effort to ease my symptoms without the use of prescription medications. This means I inevitably end up taking them around other people sometimes, whether it be at lunch with friends or during a late-night study session. And I tend to notice a shift in people’s faces when they see me take them for the first time. Granted, by then they’ve probably already noticed me mixing fiber into my water, modifying meals around my food restrictions and casually popping maximum-strength Tylenol like candy, so the stage is well-set for concern. Even if I’ve managed to be discreet about the rest, the sight of a twenty-something choking down eleven pills always pulls a gasp out of somebody. Like Huber’s cane, they give my illnesses an undeniable presence.
Which leads me to a trio of heavy questions Huber covers in this collection, all of which hit home in a big way for me: Is there a “right way” to be chronically ill? How do we get people to believe us? And how do we figure out how much of our pain, our struggle, is really just in our heads? I can’t even begin to count how many hours I’ve spent trying to answer these questions, alone in my room, feeling guilty for spending so much time thinking and talking about my problems instead of overcoming them and living my young adult life. It’s not that simple, of course. This book served as a firm and needed reminder of that. In “The Lava Lamp of Pain,” Huber writes about traveling long distances to see specialists, none of whom take her seriously despite the extreme and constant pain she’s in: “Dr. A told me I just had very flexible joints. Dr. B told me I was a young, attractive professor who ‘looked great,’ so I had nothing to worry about. He went to get a pamphlet, and I stood up and walked out, quivering with rage.”
This was one of many moments that had me ugly-crying and fist-pumping in agreement, because God, yes, I’ve been there. I’ve seen a heart specialist who looked at me like I was nuts, a neurologist who assured me I was just “a young, healthy, anxious person,” a gastroenterologist who condescendingly asked what I “wanted” from her… the list goes on. At certain points I have started to wonder if I’m just an exceptional hypochondriac, someone who wants to be sicker than I am for the sake of garnering attention or respect. Because the truth is, sometimes I do want my situation to be validated by someone other than myself. I want to hear someone say that the things I’m struggling with are real, that I’m a badass for getting up every day to face them. Ideally that validation would come from the professionals in charge of my medical care, but Huber knows as well as I do that this isn’t the default. “It takes a strong and self-aware doctor to truly grapple with the treatment of a phantom that may not be fixable,” she writes in “The Alphabet of Pain,” an essay that addresses how our healthcare system is failing patients with chronic illness.
There is something so incredibly comforting about the honesty in Huber’s voice. Combined with her often casual writing style, reading Pain Woman Takes Your Keys was like having a conversation with the older mentor I’d always wished I’d had. At times it felt like Huber was reminding me, “Hey, this thing you’re living through? It’s real. I’m doing it. You can do it. And we should be proud of ourselves.” She doesn’t try to tell anyone that living with chronic illness gets easier, or that we ought to be grateful for it (in fact, she spends the better part of an essay picking apart that notion); she simply presents her experience, what she feels, what she’s learned, and allows the reader to take from it what they will. It was exactly the solidarity I’d been so desperately craving.
I think it’s safe to say that Sonya Huber has restored my faith in chronic illness narratives. Even though I still don’t have answers to most of my own big questions, I’ve been reminded that I don’t have to face them alone. Which I am very thankful for—it was getting a little bleak over here in my cynic’s corner. Now, if I have my way, this book will sneak its way into the lives of many future readers, regardless of their personal experience with chronic illness. Even if they don’t love it, they may find that they needed it, just like I did.