Show 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.

Author Kylie Maslen . Learn more about her work at kyliemaslen.com
Photo by Lauren Connolly

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

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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.

The 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)

Michele Harper has worked as an emergency room physician for more than a decade at various institutions, including as chief resident at Lincoln Hospital in the South Bronx and in the emergency department at the Veterans Affairs Medical Center in Philadelphia. She is a graduate of Harvard University and the Renaissance School of Medicine at Stony Brook University. The Beauty in Breaking is her first book.

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

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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. 

Catherine Klatzker is a memoirist, poet, wife, mother, grandmother, friend, meditator, a retired pediatric ICU RN of 22 years, and a member of the Authors Guild. Her work has appeared in Atticus Review, Intima: A Journal of Narrative Medicine, Emrys Journal, Lime Hawk Journal, The Examined Life Journal, Tiferet Journal and in mental health anthologies. Originally from the quad cities of Illinois, she now lives in southern California with her husband, delightedly nearby their children and grandchildren. Photo by Baz Here

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

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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.

Rita Colwell

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

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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).