In “The Country of the Blind: A Memoir at the End of Sight” (Penguin Press, 2023), Andrew Leland digs into what people mean when they use the word “blind,” as there are medical definitions, in addition to legal uses of the term, as well as social constructs and expectations. The medical definition is complicated, as only 15% of people who are blind actually have no vision at all. Instead, they have some sort of substantial hindrance to full sight, but those issues vary wildly. In fact, most of the people in the book are more like Leland, people with some partial sight, even if that is nothing more than distinguishing light and dark patches of the world.
Read moreZig-Zag Boy: A Memoir of Madness and Motherhood by Tanya Frank
Tanya Frank, a Londoner living in Los Angeles, wrote an essay in The New York Times titled “Unmoored by a Psychotic Break” about her son’s diagnosis with schizoaffective disorder in 2009. Her book about the next decade of her and her son’s life, Zig-Zag Boy: A Memoir of Madness and Motherhood (W.W. Norton), chronicles how psychiatric illness can redefine the relationships in and beyond a family.
Read moreSecond-Generation Healing: The Holocaust poetry of Yerra Sugarman in "Aunt Bird" by Robert C. Abrams
The subject of Aunt Bird, a collection of poems by Yerra Sugarman, is the last year of the life of her aunt in the Kraków ghetto during Nazi occupation of Poland (Four Way Books, 2022). The book is a collection of impassioned poems about the lost hopes of a spirited, once-vital young adult.
Read moreOrdinary Deaths: Stories From Memory by Samuel LeBaron
Psychologist Samuel LeBaron’s book, “Ordinary Deaths” was recently published by the University of Alberta Press and in it, he examines the following truth without the drama often accompanying such writing: Death is not a heroic journey, a metaphorical “war” against fatal illness. It is, as the title states, ordinary.
Read moreIntimacies, Received: Poetry by Taneum Bambrick
Bravery, to me, is stepping forward to confront your fears and discomforts, despite the emotions holding you back. After reading Intimacies, Received, Taneum Bambrick’s moving collection of poetry, brave is the word that most readily describes the taut, sometimes treacherous path the poet takes to reclaim her sense of self and connection to her body after a traumatic event.
Read moreIn Love: A Memoir of Love and Loss by Amy Bloom
Amy Bloom’s moving memoir, In Love: A Memoir of Love and Loss, is a love story about an idyllic marriage shattered when Bloom’s 60-year-old husband Brian’s forgetfulness takes over their lives. His personality changes, and he becomes distant and indifferent. “Names disappearing, repetition, information turned upside down, appointments and medications scrambled. Suddenly it seemed we argued endlessly about everything,” Bloom laments.
Read moreSmile: The Story of a Face by Sarah Ruhl
In her memoir Smile: The Story of a Face (Simon & Schuster), Sarah Ruhl tells the story of her ten-year struggle with Bell’s Palsy. Ruhl was (and is) a successful playwright when she and her husband discover they are having twins. That news, coupled with the fact they already have a daughter, leads Ruhl to worry she will struggle to write again because of the time and energy needed to balance a growing family and the high-stakes professional demands and drama accompanying her profession. That concern becomes even more complicated when she is diagnosed with cholestasis of the liver, where bile seeps into the bloodstream causing itchiness, but also possibly leading to the death of the children.
Read moreShow Me Where it Hurts: Living With Invisible Illness by Kylie Maslen
Kylie Maslen’s critically acclaimed non-fiction essay “I’m Trying to Tell You I’m Not Okay “ took a new form on shelves worldwide in 2020: The essay became the first chapter of Maslen’s experimental book Show Me Where it Hurts: Living With Invisible Illness. Like her essay, the book has met with success: it was shortlisted for Non-Fiction in the 2021 Victorian Premier’s Literary Awards and named among Guardian Australia’s 20 best Australian Books in 2020.
As Maslen herself says, her book is a part of a growing trend of Australian “sick lit” – literature that deals with life with chronic illness. “Living with invisible illness poses a unique challenge,” Maslen explained we spoke via Zoom, “in that you’re constantly having to fight for attention because things are not self-evident.” Her collection of essays primarily focuses on endometriosis and bipolar disorder and brings to light conditions that are not well known or understood but are quite common. Endometriosis alone affects 1 in 10 women and its issues create complications we often choose to dismiss or ignore.
The topic of the book might sound a bit heavy – and at times it is – but Maslen managed to create a Millennial masterpiece. It is many things: confessional literature, a review of pop culture and a fight for disability awareness and representation all at once. A source of both tears and laughter, the book comes with an important message. As a part of pop culture itself, it manages to entertain nevertheless.
The nature of the book is already illustrated in the opening essay, where Maslen movingly writes about endometriosis, suicidal ideation and memes all in one text, as the following illustrates:
The very nature of chronic illness lends itself to isolation. Time spent at home resting, time spent in waiting rooms, time spent in hospital, time spent recovering.
Things I want to say:
I don’t know how long I can keep doing this.
I can’t do anything nice for myself because I spend so much money on staying alive.
Instead I post a meme of SpongeBob walking into a room with an exaggerated swagger. The caption reads ‘walking into your doctor’s office’.
The receptionist at my GP’s rooms says, ‘Take a seat, Kylie’ when I walk in the door. The frequency of my visits spares me the time it takes for him to look me up on the system and confirm my appointment; he no longer asks, ‘Is this still your current address?’ before letting me sit down. I’m grateful that he can see my exhaustion and helps me in this small but not insignificant way, but I’m saddened that my life looks like this at such a young age.
A key theme in chronic-illness memes is conversations with ‘normies’ (those who are not chronically ill or disabled). Specifically, she chronicles their refusal to listen, an inability to empathize with others’ pain or the quickness to dispense unsolicited advice about symptoms and illnesses of which they have no lived experience.
Things people say:
‘You don’t look sick.’
‘You look much better than last time I saw you.’
‘It’s good to see you with some colour back in your face at least.’
Many of us with chronic illness are often housebound. Unable to socialize with family, friends or colleagues we go online to interact with others. We are also searching for people who understand.
Peer support through social media offers a source of experiential knowledge about illness. It gives us a way to normalize pain and a life lived with chronic illness. That can take the form of sharing stories and asking questions, but often we communicate through chronic-illness memes, which are a simple visual means of conveying complicated emotions and frustrations, as well as a way to add humour to our heavy conversation. Using memes—images or videos that are already widely shared – with context tailored to illness communities allows those of us who feel socially isolated by circumstances beyond our control to connect with the broader zeitgeist.
Maslen connects with readers, especially those of her own generation, with her daring honesty. The author discusses sex, loneliness, mental health struggles and the burden of chronic pain as well as pop icons, her favorite TV shows, books and movies. In one essay, the writing is raw and dark, disclosing extremely intimate episodes of alcohol and prescription drug abuse as well as Tinder dates gone wrong due to endometriosis; another essay is a playlist, where each song serves as a tool to dig deeper into her own headspace. We are presented with an analysis of SpongeBob SquarePants and an ode to Beyoncé on the one hand, and on the other we witness Maslen thoughtfully posing for Instagram, choosing what to share and how, and comparing her life to the curated online lives of those who are well. It is this combination of different approaches to the same topic that enable the book to be a refreshingly accurate description of an entire life, warts and all, of a person just like any other Millennial—having to deal with the burden of chronic illnesses on top of it all.
This aspect of her narrative is what made it stand out from the rest of “sick lit” for me personally. Not much younger than Maslen, I, too, suffer from endometriosis. I’m often bedbound, scrolling through memes about menstruation and ‘endo life,’ laughing out loud and sharing the best ones with my online support groups and trying to communicate my condition with others through Instagram stories. I am yet to find a book on the subject that so fully resembles my own life. I can say with no hesitation that Maslen managed to do what all illness narratives aim to do – she wrote a book that connects with those who experience similar things on a very deep level. This makes the reader feel validated and less alone. It is, however, written in a welcoming way should it fall in the hands of ‘normies’ who are willing to learn more about what it is people like us experience.
There is a running joke in the endometriosis online community: We are the worst club with the best members. Nobody wants to be a part of this club, but everybody is offered a level of understanding that can hardly be found elsewhere as our situations are so particular, very individual yet somehow the same. In Maslen, I immediately recognized an #endosister as we say. Having heard that I would be doing this review, Maslen felt the same when she “Instagram stalked me.” It is for this reason, as well as being a genuine fan of the book, that I was thrilled when Intima decided to reach out to Maslen and ask her for an interview.
Maslen agreed to have a virtual sit down with the journal’s editor Donna Bulseco and myself, and across time zones, each cozy on our own continent, the three of us had a wonderful online chat about chronic illness, social media, narrative medicine and the possible impact of books such as this one on society at large. It was my pleasure to chat with Kylie, and I hope it will be yours to listen to what we each had to say. —Alekszandra Rokvity
Alekszandra Rokvity is a Serbian-born writer and PhD candidate working on her doctorate between the Karl Franzens University of Graz in Austria and the University of Alberta in Canada. She specializes in cultural studies and medical humanities. Her academic interest lies in the experiences of women with endometriosis within the healthcare system. Her doctoral dissertation is a case study of endometriosis that explores the connection between gender bias in the medical community and the social discourse surrounding menstruation.
Ms Rokvity has previously taught in Austria, Canada, Vietnam and is currently teaching in Belgrade, Serbia. An avid activist for women's rights, she cooperates with various NGOs such as the London Drawing Group (UK) and Vulvani (Germany).
Read more of her work on Medium.
HEALING: When a Nurse Becomes a Patient by Theresa Brown, RN
Theresa Brown’s 2015 book The Shift explored the question of what it means to care for others. In her new memoir, Healing: When a Nurse Becomes a Patient (Algonquin Books), Brown chronicles her experience with breast cancer from diagnosis through treatment and deepens that question into: How can we make the healthcare system more compassionate?
Read moreWhat Cannot Be Undone: True Stories of a Life in Medicine by Walter M. Robinson
Our training as physicians teaches us to bury our emotions, to remain objective and detached, and it has become clear that patients can perceive doctors as lacking empathy by hiding this aspect of themselves. The complexities of this dynamic are explored in Walter M. Robinson’s What Cannot Be Undone: True Stories of a Life in Medicine, a collection of essays examining the self-destructive results of detachment from the physician’s emotional responses, published recently by the University of New Mexico Press. When physicians cannot tolerate the pain and suffering of their inner life, compassion-fatigue, burnout, substance abuse and suicide are possibilities.
Read moreLetter to a Young Female Physician: Notes from a Medical Life by Suzanne Koven
Letter to a Young Female Physician: Notes from a Medical Life by Suzanne Koven, MD is both instructive and empowering for a professional audience. The “young female physician” is Koven herself 30 years ago, and the memoir’s title comes from a New England Journal of Medicine op-ed she wrote that brought to light Imposter Syndrome (a perceived and misplaced self-doubt that high-achievers are unworthy of the confidence others place in them and that soon enough they will be found-out as imposters). A primary care physician, Koven creates a narrative that addresses issues facing women in medicine such as pay iniquity, harassment and sexism. While all of the above is plenty to keep readers in the clinical world engaged, the book’s success resides in something else—the way Koven approaches universal truths by examining and honoring the specific experience of her life as a woman and as a doctor. Going beyond the halls of the hospital and the titular “young female physician,” she creates a narrative sure to resonate with many.
Read moreEvery Deep-Drawn Breath: A Critical Care Doctor on Healing, Recovery, and Transforming Medicine in the ICU by Wes Ely, MD
Every Deep-Drawn Breath chronicles Dr. Ely’s journey as a critical care doctor and in some ways, reads like a Hegelian dialectic, that is, an interpretative process that uses contradictory propositions to reach a firmer truth. His story begins with a thesis: a young critical care physician focused on saving lives in the Wake Forest intensive care units. “My aim with my patients was to get their broken systems back to functioning as they should,” Dr. Ely writes
Read moreThe Beauty in Breaking by Michele Harper
In the powerful memoir The Beauty in Breaking (Riverhead Books 2020), Michele Harper challenges us to examine the transformation of trauma and how painful experiences figure prominently in one’s past and present. In honest and contemplative language, Harper, a doctor and graduate of Harvard University and the Renaissance School of Medicine at Stony Brook University, courageously describes a challenging childhood that exposed her and other family members to ongoing outbursts of physical abuse. Dr. Harper gives insight into how this adversity informed her decision to pursue a career as an emergency room (ER) physician, one that now spans more than a decade working at various locations in Philadelphia and the South Bronx:
“Unlike in the war zone that was childhood, I would be in control of that space, providing relief or at least a reprieve to those who called out for help. I would see to it that there was shelter in the spaces of which I was the guardian.” (19)
In navigating this career of service, she regularly draws upon her resiliency to confront violence when caring for gunshot victims, responding to code blues, or de-escalating threatening patient behavior. Simultaneously, Dr. Harper impresses upon readers the extraordinary privileges of being a healer, as well as the difficulties of stewarding the distressing stories accompanying that role.
As Dr. Harper continues to meditate on her life’s milestones, including divorce, residency graduation and new leadership roles in the clinical world, she paints a sobering reality of her patients’ lives. In often invisible ways, society inflicts lasting and generational trauma that tends to be outside of individual control, especially for historically underserved populations. From the perspective of an African-American female physician, the author shares her reflections on heartbreaking interactions with young patients, like Gabriel and Jeremiah, both of whom she treats for head trauma:
“I suppose it’s a matter of faith whether or not we choose our starting ground before we’re born into this life. Some begin the journey on flat, grassy meadows and others at the base of a very steep mountain. One path, seemingly smooth, can make it nearly impossible for us to see the ditches and gullies along the way. The other, while painfully tough, can deliver what it promises: If you can navigate that path, you’ve developed the skills to scale Everest. It isn’t fair on many accounts; it simply is…All deserve the chance to speak and be heard and be touched. If we’re lucky, we’re touched at every station along the journey, and if nothing else, then at the end.” (137-138)
These carefully curated thoughts about her patient encounters challenge readers to critically think about the culture of blame and stigma towards those facing complex circumstances, an idea expressed succinctly by an ER social worker in the book: “When [people are] at war, the rules are different.” Dr. Harper highlights the continued ripple effects of systematic racial bias and other forms of discrimination in healthcare and beyond.
Still, the path to healing is complex. Dr. Harper herself claims no simple solution, knowing she has to navigate her own fraught path forward too. While contemplating reconciliation with her estranged father, she draws us in as readers interested in clinical encounters and how they may have an impact in our lives; she helps us understand the many complex ways patients offer invaluable wisdom too, if only providers choose to listen. In one interaction with a patient who is a veteran, Dr. Harper skillfully demonstrates how both she and the patient find liberation in acknowledging shared loss.
As an epidemiologist by training, I am reminded that there is always a human story behind the numbers. Narratives like Dr. Harper’s often transcend the limitations of quantitative metrics, such as incidence or rates, by offering a compassionate and instructive glimpse into the lives of those who are suffering. These stories raise important ethical questions about how we, as a medical and research community, should respond. In my professional and personal life, I hope to amplify these stories of oppression so they may be perceived at the same level of legitimacy as other forms of communication in order to spur organizational change.
The Beauty in Breaking is aptly titled, as the author/physician beautifully shows there is indeed beauty in the examination of the trauma one has experienced and struggled to overcome. Her storytelling brims with hope while contributing to a broader conversation about diversity and meaningful inclusion in medical training and beyond.—Brianna Cheng
Brianna Cheng has a MSc Epidemiology from McGill University, and completed a Narrative Medicine Fellowship at Concordia University. She now works as a consultant epidemiologist for the WHO. Her writing has appeared in Intima, Journal of General Internal Medicine, CMAJ Blogs and Families, Systems & Health. She currently serves as an Editor for the McGill Journal of Medicine. @withbrianna
You Will Never Be Normal by Catherine Klatzker
An instruction manual on falling apart to come together again, Catherine Klatzker’s frank memoir, You Will Never Be Normal, confronts the darkness with the enlightenment of telling. Klatzker, a retired pediatric ICU nurse of 22 years, weaves together a lifetime of repressed trauma and abuse with the laser-sharp humanity of an attentive RN. The story—and the author’s often wrenching rendering of it in flashback vignettes—is not the typical clinician-as-patient narrative but one that engages the reader to join her as she makes her way towards healing.
The embodied experience of an adult survivor of sexual and emotional abuse is one of shame, panic and confusion, and Klatzker tells it all with grace, sparing little in her exploration of the physiological manifestations of her own trauma such as insomnia and incontinence. We feel her suffering but also her professional detachment: It’s as if she’s conducting a thorough patient history of her own past.
Readers become familiar with the embodiment of her triggers as she welcomes us into the wounds of her intimate relationships. Klatzker’s family becomes our family, her partners our partners—and her demons become ours. “No one knew the extra layer of experience I brought to my own pain, to my own body, filtering my experience of myself,” she tells us. To cope, Klatzker mastered the art of dissociating into “parts,” or what she describes as “going away,” sometimes happening while she was at work in the hospital or at home caring for her child.
Learning about the causes and triggers of Klatzker’s Parts (or what is later labeled Traumatic Dissociative Identity Disorder) is a heartbreaking revelation throughout the memoir. “What I knew was gut-knowledge, stored in my body,” Klatzker states, and that knowledge unfolds in devastating and plain language, a subconscious realization oftentimes unfolding mid-sentence. Her Parts often take hostage of her mind at random moments, coming into play when she’s driving or during emotional interludes with her husband. Fragmented memories emerge in the many versions of herself she meets and refines over the years.
In unpacking precarious relationships, deaths, and more, Klatzker’s relationship with her psychotherapist is one that models seeing her as a whole person and not just the sum of her parts. “He spoke in language all my parts would understand, trying to get the same message across to all of us, so there would be no gaps.” The deep work they do together inspires readers to reflect on the way healing from trauma is rarely linear and never truly ends. Yet there is a sense of resolution to Klatzker’s bleak house of pain: In telling her story, she confronts her past and envisions the way to move forward. In the end, the book’s title takes on new meaning: You Will Never Be Normal is not a life sentence but instead an acknowledgement of difference and an acceptance of it.— Angelica Recierdo
Angelica Recierdo works as a Clinical Content Editor at Doximity in San Francisco, CA. She received her Bachelor of Science in Nursing from Northeastern University and her M.S. in Narrative Medicine from Columbia University. Angelica was also a Global Health Corps Fellow in 2016-17. She has worked at the intersection of health and writing/communications, specifically in the fields of healthcare innovation, health equity, and racial justice. Angelica is a creative writer, and her work can be found in Intima: A Journal of Narrative Medicine, Literary Orphans, HalfwayDownTheStairs and The Huntington News, among others. Her essay “Coming Out of the Medical Closet” appeared in the Spring 2014 Intima.
A Lab of One's Own: One Woman's Journey Through Sexism in Science by Rita Colwell, former director of the National Science Foundation
By cleverly playing with the title of Virginia Woolf’s pivotal feminist essay, “A Room of One’s Own,” Rita Colwell informs us what this book will be about on its very covers. Colwell is a pioneering microbiologist and the first woman to lead the National Science Foundation. She is a Distinguished University Professor at both the University of Maryland and Johns Hopkins University’s Bloomberg School of Public Health. A professional rather than a personal memoir (although for a passionate scientist like Colwell, the two are one and the same), A Lab of One’s Own chronicles and humanizes the female experience in the scientific community over the last half a century.
There is much to admire in this account, co-authored by science writer Sharon Bertsch McGrayne. Riveting chapters describe Colwell’s groundbreaking fieldwork on cholera in Bangladesh, while the exciting role she played in the CIA’s efforts to find the person behind the Anthrax letter attacks in 2001 makes for a thrilling read. Still, it is Colwell’s well-documented female experience of the pursuit of science that elevates the book into a uniquely excellent read.
I was well aware of the fact that what we today easily identify as sexism was “simply the way things were” some fifty years ago, but I must confess I was truly shaken by reading about how far and deep this sexism went. I was distraught to find, in the very first chapter, a young, driven student being told by the late Austrian-born microbiologist and professor Henry Koffler: “We don’t waste fellowships on women.” I’m not certain what I expected, but I did not expect to read a story in which another scientist Robert Steiner simply didn’t allow Colwell to finish her talk at a symposium.
Nor did I expect to read how colleague Einar Leifson yelled at Colwell over post-conference dinner, asking loudly in front of the entire room whether her husband knew where she was and why she wasn’t at home and pregnant. I most certainly did not expect to read that Francis Crick, one of the men who claimed the Nobel Prize for the discovery of the molecular structure of DNA—with no acknowledgement that a photograph taken in chemist Rosalind Franklin’s lab was instrumental in the discovery—casually grabbed molecular biologist Nancy Hopkins’ breasts when they first met. Then there was the shock of reading that Hopkins, after having been a tenured professor, wasn’t allowed to teach a genetics class based on her own discoveries, but instead was asked to teach the material to her male colleagues who would lecture instead. The reason for the switch? She was told male students wouldn’t believe any science explained to them by a woman.
Two aspects of this memoir are striking.
First, Rita Colwell has no fear when it comes to name dropping. No matter who they are, how well-respected, how highly ranked, alive or dead, the men who were part of the agenda to keep women out of science are identified and quoted. Some, like Koffler, for instance, even had the opportunity to deny or at least apologize for their actions. (Koffler, who went on to be University of Massachusetts Amherst Chancellor, refused.)
Secondly, the memoir lacks bitterness. Colwell tells the story of her passage through the system, warts and all. But her tone is not vindictive. If anything, she uses every opportunity to focus on people, both men and women, who played key roles both in helping her personally, and in changing the world of academic science into a more fair and inclusive one. She never dwells on her achievements or toots her own horn: Instead, she dedicates pages and pages to other women who have themselves overcome many obstacles and, despite men, managed to make incredible contributions.
What’s fascinating about A Lab of One’s Own are the inside stories of how monumental events unfolded. She explains how the Women’s Equity Action League (WEAL) managed to file a class action suit against the University of Maryland as well as 250 other American colleges for sex discrimination, leading to the Educational Amendments Act of 1972. Focusing on the factual, strengthened by her personal observations, Colwell gives detailed accounts of landmark moments in gender equality, including the passing of Title IX, the phenomenon of the “revolving door” and the “Birgeneau Bump.”
Although the fight against sex discrimination and the gender pay gap is not over, the memoir ends with positivity. The book is at times quite a dense text, packed with names, titles, years. Colwell documented the careers of dozens of female scientists alongside her own, giving each one as much space on the page as she gave herself. As a true feminist, Colwell uses the gravity of her platform to give others a voice. A Lab of One’s Own is essential reading for all genders; however, women in the sciences will find the history especially eye-opening. —Alekszandra Rokvity
Alekszandra Rokvity is a Serbian-born writer and PhD candidate working on her doctorate between the Karl Franzens University of Graz in Austria and the University of Alberta in Canada. She specializes in cultural studies and medical humanities. Her academic interest lies in the experiences of women with endometriosis within the healthcare system. Her doctoral dissertation is a case study of endometriosis that explores the connection between gender bias in the medical community and the social discourse surrounding menstruation.
Ms Rokvity has previously taught in Austria, Canada, Vietnam and is currently teaching in Belgrade, Serbia. An avid activist for women's rights, she cooperates with various NGOs such as the London Drawing Group (UK) and Vulvani (Germany).
The Night Lake: A Young Priest Maps the Topography of Grief by Liz Tichenor
From the opening pages of Liz Tichenor’s memoir, “The Night Lake,” there is no forewarning, no preparation for death’s arrival. Ms. Tichenor’s five-week old son, Fritz, cries constantly. She takes him to a local urgent care doctor who pronounces the baby is “fine.” Only six hours later, Ms. Tichenor and her husband awake in the middle of the night to find their infant son dead.
Read moreFinal Path: Poems by Ron Lands
The death of a parent takes us into alien territory, a cold, silvery place we never could have imagined and a pain we never quite forget. As children, we revere our mothers and fathers; as teenagers, we loathe them, and it is only when one grows up, or becomes a parent, or goes through therapy, that a begrudging appreciation begins to form. Parents are truly the unknowable ‘other’ and the death of them startles the child in us, so much so that the adult in us is lost, with only a bewildering map of grief-behavior offered by outstretched, mostly sympathetic, hands. Inevitably, we feel as if much has been left unsaid. “Some apologies are unspeakable,” says poet Eula Biss in the essay “All Apologies” in Notes From No Man’s Land. “Like the one we owe our parents.”
Read moreAsk Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain by Abby Norman
The budding of feminist activism in recent decades has accelerated the rise in literature that tackles the topic of the female experience. Illness memoirs written about, by and for women are a growing genre, and Abby Norman’s 2018 book Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain makes a powerful contribution to the field. Telling a personal story about battling not only an illness but the entire medical system, Norman explores topics relevant for all, but especially for those who are ill.
The book is a brilliant blend of memoir and theoretical text, telling a compelling story of an unorthodox childhood and a life suddenly disrupted by a debilitating pain nobody believed was real. The story follows Norman growing up neglected by an anorexic and bulimic mother, absent father and abusive grandmother. As a teenage girl she becomes emancipated and aims to reinvent herself as a professional dancer while attending Sarah Lawrence College. Her ambitions are thwarted by episodic pain that becomes a permanent ailment controlling her life. There is a futile surgery and an endless string of hospital visits, during which she faces skepticism, doubt and dismissal by the medical staff, only to finally be diagnosed with endometriosis. Norman’s quest for answers leads her down an unlikely path of working in the healthcare system and eventually becoming a science writer and advocate for women with endometriosis.
Endometriosis, often regarded as an illness of the uterus due to the synchronization of the symptoms with the menstrual cycle, is one modern medicine has been aware of for centuries. Even so, there is still no clear cause for the illness, what influences its development or how to cure it, due to lack of research and the scarcity of information on the subject. What we do know is that the condition is estimated to affect one in ten women and can take up to ten years to diagnose. The main reason for the detrimentally slow diagnosis: Women seeking help aren’t believed to be experiencing the ailments afflicting them. The first assumption is that the patient is having psychological issues reflecting her inability to cope with the natural pain of menstruation. It is baffling that an issue as common as endometriosis is greeted with so much skepticism and appears to be of little to no interest to medical scientists.
Abby Norman asks the question “Why is this so?” She’s not alone in wondering, but what sets her apart is her creative way of illustrating the issue in an engaging, easily understandable text. Norman opens up many chapters with a comprehensive overview of particular medical cases or bigger medical studies dating back to the 19th century, effectively illustrating the history of the female patient. From illness explained as hysteria to the exclusion of women from medical trials and drug testing, the narrative illustrates that medicine is not only sexist but also how that sexism is often lethal for the female patient. Norman flawlessly transitions from factual to creative writing, using personal reflections and commentary as ways to segue into telling her own story.
Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain is a memoir that educates as much as it entertains. The riveting stories of the author’s unusual life are cunning bridges between important analyses of the complex relationship between Western medicine and female patients. An interesting read for anyone wanting to be challenged by literature, the memoir offers significant relevance for women suffering from illnesses of reproductive organs. Its involving prose offers comfort as well as specific information empowering women to find their voices, take control of their illness and demand medical justice. —Alekszandra Rokvity
Alekszandra Rokvity is a PhD candidate working in medical humanities and cultural studies between the Karl Franzens University of Graz, Austria and the University of Alberta in Canada. Her academic interest lies in the experiences of women with endometriosis within the healthcare system. “It gives me no pleasure to confirm that my academic research has only proven what I've personally experienced and intuitively known: that there is relentless, systematic sexism present at the heart of Western medical practices which not only reflects the position of women in society at large, but seriously affects the care ill women are provided.”
This is Going to Hurt by Adam Kay
This Is Going To Hurt is a memoir from British comedian, writer and former doctor, Adam Kay. The book, published by Picador in 2017, follows Kay’s journey from a junior doctor to senior registrar (or resident to attending physician) specializing in obstetrics and gynecology. The memoir is presented as a series of journal entries that he wrote throughout his former medical career, originally intended as a means of cataloguing intriguing clinical cases.
However, his recollections are far from formally academic: Kay’s unabashed bluntness allows for an unfiltered and honest reflection of his time working under the UK’s National Health System (NHS). The book covers a wide array of healthcare topics including the doctor-comedian’s thoughts on the NHS’s treatment of its doctors; his co-workers or “drug-dealing scrotes” that erroneously prescribe diuretics to dehydrated patients; and what he describes as “Eiffel Syndrome”—the common “I fell” etiology voiced by patients presenting with household items lodged in their nether regions. Kay’s wicked commentary keeps the reader engaged with risqué, crude humor that no practicing physician would (rightly so) feel comfortable dispensing.
A praise-worthy feature of Kay’s narrative is his inclusion of informative and equally entertaining footnotes on the bottom of each page to explain the medical terminology referenced in each account. This makes the book accessible to the non-medical reader, who will learn more than a thing or two about medicine by the time they’ve reached the last page. For example:
*APGAR scores are the standard measure of how well a newborn baby is doing—they get marks for Appearance, Pulse, Grimace, Activity and Respiration. It was devised by a doctor called Virginia Apgar, which makes me think that she chose arbitrary measures just because they fitted with her surname. Like if I decided that the best measures of a baby’s health were Kicking, Applauding and Yawning.
This Is Going To Hurt is steeped in themes of physician neglect, a topic of growing relevance in today’s healthcare climate, with increasing concerns over physician-burnout and resilience that have been elevated during the novel coronavirus pandemic. While the memoir’s title is a nod to the cliché that a doctor tells a patient before inflicting procedural pain, it also reflects the mental and emotional toll physician-hood took on Kay. In one example, Kay cites a traumatic case involving a patient with placenta previa, for which he received no support from the NHS after its devastating effects. The experience was a tipping point for him that led to depression and eventually prompted him to retire his white coat for good. Physicians, Kay reminds the reader, are just people too, something he believes healthcare establishments and patients often lose sight of:
“…patients don’t actually think of doctors as being human. It’s why they’re so quick to complain if we make a mistake or if we get cross. It’s why they’ll bite our heads off when we finally call them into our over-running clinic room at 7 p.m., not thinking that we also have homes we’d rather be at. But it’s the flip side of not wanting your doctor to be fallible, capable of getting your diagnosis wrong. They don’t want to think of medicine as a subject that anyone on the planet can learn, a career choice their mouth-breathing cousin could have made.”
Still, he gives equal time to the rewarding feelings he experienced when helping patients, delivering babies and treating couples with infertility issues. At trying times, it made him feel like a “low grade super-hero,” and it was this sense of satisfaction and purpose that allowed him to continue being a doctor for as long as he did. He finally summarizes his medical career with both dreariness and heart:
“The hours are terrible, the pay is terrible, the conditions are terrible; you’re underappreciated, unsupported, disrespected and frequently physically endangered. But there’s no better job in the world.”
Adam Kay’s memoir is an entertaining account of a physician-turned-comedian’s triumphs and struggles through their medical career. His new children’s book, Kay’s Anatomy: A Complete (and Completely Disgusting) Guide to the Human Body, will be available this year.—Fredrick Martyn
Fredrick Martyn is a Canadian writer, poet and medical student at The George Washington University School of Medicine and Health Sciences in Washington, D.C. This summer he will be beginning his residency training in family medicine at Western University in Ontario, Canada. He is a contributing writer for the medical satire website Gomerblog, as well as other online humor publications including Points In Case, Slackjaw and Little Old Lady Comedy. He also acts as a director for his medical school’s comedy show and can sometimes be found performing his poetry at Busboys & Poets, in D.C.
Tender Points by Amy Berkowitz
Tender Points by Amy Berkowitz is a personal account of life with Fibromyalgia (FM), a condition that the author has and uses to explore topics frequently associated with the disease. The book, then, is also an account of terror, sexual violence, enduring, overcoming, adapting, being unbelieved and ignored. It is a book is about being a woman in a patriarchal culture.
Berkowitz’s essayistic nonfiction blends poetry, “listicle” summaries of a-day-in-the-life with chronic pain, segments from FM discussion boards, and reflections on historical discussions of pain and women’s health. Throughout, she demonstrates incisive wit and a tight control of language. Culturally wide-ranging, she draws on (among others) Freud, fiction writer Richard Brautigan, Sarah Winchester, the Riot Grrl punk-music movement, and Sex and The City, to texture and color and sound her work. Though each component only spans a single or handful of pages, she arranges every part to create a connected story. Thus the author leads us down a hallway of her own perspective on chronic pain. She is saying: I am a full person, with multidimensional ideas and arguments, and I suffer from chronic pain.
In the midst of this tour, we learn Berkowitz was raped at a young age by her pediatrician. It’s while remembering the incident years later that she began experiencing the symptoms of FM. At a later point an expert on sexual violence asks her if she was raped, and Berkowitz replies: “I don’t know.” The answer comes as a surprise; it is not immediately clear to her why she answers this way. “Who can argue with a stethoscope?” she writes. This invokes questions so often surrounding women as victims of rape, sexual violence, and toxic masculine cultural norms: why did she wait so long? Why did Dr. Christine Blasey Ford not speak up sooner? Or the accusers of President Trump or Harvey Weinstein? Why can’t a victim tell all the details clearly? Can we believe her? Throughout Tender Points, Berkowitz answers these questions through her story.
The author deftly uses form to underscore her sentences. Ample blank space throughout the book—some pages only have a few words—reminds us that pain can be as much about absence as it is about presence. Absence, in the sense of not being seen or heard, is part of everyday reality for many people suffering from chronic pain. Alternatively, absent from most people’s lives is relentless suffering and stress. The freedom that comes from pain’s absence is not something those with chronic pain can know.
Yet for all her truth telling, Berkowitz reaches some questionable conclusions about physicians and the field of medicine. For example, she uses Carl Morris’s Culture of Pain as a touchstone, equating the historical view of hysteria with the way we currently view FM, as a diagnosis in which mostly male physicians can imprison poorly understood female patients. She also revisits one of Morris’s more contested points, that pain should be viewed as a mystery, rather than a puzzle to be solved. This is a false dichotomy: a both/and approach is typically employed for poorly understood medical problems. Pain is a mystery and a puzzle, and it should be approached with deference to both. After all, as a result of problem solving and refusal to see it as purely a mystery, Hysteria has become (mostly) a bygone medical diagnosis.
But none of these dead-ends limit the power and utility of the book. Tender Points immerses the reader in the experience of someone who is suffering from chronic pain. Each page turns us to see, hear, feel, and gradually understand that experience. It’s not always clear, it’s not always clean, but it always crackles with bright personal truth.
In healthcare, many of us know we should believe women, and believe those with chronic pain. But clinical conditions mandate skepticism beyond the purely intellectual, and we are generally required to face a problem as a balance of both/and: believe and question. But we must do a better job at understanding the experience of those with chronic pain and FM to inform that balance.
I spent time listening to some of the bands Berkowitz references in her book. The song “Rebel Girl,” by Bikini Kill carries these lyrics: “When she talks, I hear a revolution.” The fulcrum of this line is “she talks, I hear.” That alone is a revolution for many of us, because hearing is necessary for understanding. And reading Tender Points is an excellent way of hearing—of listening—to better understand women with chronic pain and Fibromyalgia.—Britt Hultgren
Britt Hultgren is a resident physician with the University of Utah Department of Family and Preventive Medicine. Selected publications include The New England Journal of Medicine and a feature-series in Jordan Business Magazine.