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

The Doctor’s Dilemma by Daly Walker MD

In his new compilation of 16 short stories titled The Doctor’s Dilemma, Dr. Daly Walker provides a stark portrait of physicians facing their own and their patients’ mortality, as well as navigating the practical morality of medicine —striving to do “right” in complex circumstances.  As a retired general surgeon and accomplished writer, Dr. Walker melds intimate knowledge of medicine and particularly the surgical theater with a profound insight into aging, intimacy and loss.  His archetypal character is an aging surgeon facing degradation of skill and encroaching self-doubt—changes that bring a sense of insecurity, a questioning of identity and a loss of control.  His protagonists project outward strength and heroic intent, but struggle to find grounding in fraught relationships and their identity as physicians. This noble effort—to be present and perfect for one’s patients and loved ones, while reckoning with one’s fallibility and insecurities—is familiar to any physician. But that inclination is also highly relatable to general readers coping with the demands of daily life.

 Dr. Walker writes what he knows in vivid, engrossing detail.  Most stories are set in small-town Indiana, where he was raised and worked for decades as a surgeon.  A Midwestern sensibility permeates his work in the jocular traditionalism of the surgeons we meet and in the dignity and modesty of other small-town characters. Dr. Walker brings further autobiographical elements; his characters are often veterans of wartime surgery with wisdom and relationships borne from intense, chaotic environments.

The Doctor’s Dilemma is divided in three sections: Mortality, Morality and Immortality, though these themes are often intertwined.   A group of stories present aging surgeons losing skill and confidence, or on the other side of that deterioration.  In “One Day in the Life of Dr. Ivan Jones,” we feel the confusion and disorientation of a retired neurosurgeon with dementia, as well as his physician son’s grief and struggle with his father’s loss of self. In “Old Dogs,” an aging surgeon has shaky hands and battles through a difficult aneurysm repair with scrutiny from an audience in the OR.   We are asked to consider the value of life as absolute or relative— for a hemorrhaging Jehovah’s Witness patient where transfusion might negate an eternal afterlife; for a death row inmate needing intubation in the setting of scarce resources in a pandemic ridden emergency room. In “India’s Passage,” there is a gripping account of a young woman’s death during a routine laparoscopic surgery, and the oppressive guilt felt by the surgeon as well as the extreme grief and judgment of the woman’s mother.  Ultimately there is reconciliation, but no character emerges unchanged from this tragedy.  

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Daly Walker MD is retired from a general surgery practice in Indiana. He is a graduate of Indiana University Medical school and served his residency at the University of Wisconsin. He served as a battalion surgeon in the Vietnam War. A fiction writer, his stories have appeared in numerous literary publication including The Atlantic. “Resuscitation,” one of the stories in The Doctor’s Dilemma, appeared in the FALL 2020 Intima. 

Author photo: Sally Carpenter

Stories also focus on morality with physicians trying to do the “right” thing for their patients and their loved ones and neighbors.  In “Drumlins,” an older surgeon physically marred by skin cancer surgery compassionately treats a young woman losing her breast from cancer.  In “Jacob’s Ladder,” a retired orthopedic surgeon who lives a solitary life in the woods, having lost his wife, pines for the companionship of a young woman and ultimately saves her from an abusive partner and her son from the consequences of retribution. The idea of responsibilities of son and father comes out in several stories: In “Crystal Apple,” a physician who recently lost his mother is startled by the discovery that his father is not who he thought and grapples with his origins.   In “Nui ba Den,” a surgeon reconvenes with a lover from his time in Vietnam decades later, and contemplates how the past influenced him and how his present self views the past.  Mortality and morality are intertwined in “Blood,” where a mother adamantly refused blood transfusion for her critically ill Jehovah’s Witness son who is a minor; in “Pascals Law” where a physician intubates a man on death row; and in “Resuscitation” (first published in the Fall 2020 Intima) where a man stricken by Covid is intubated though other patients may have a greater likelihood of survival. 

There is an immediacy to Dr. Daly’s imagery and language; his prose style is straightforward and deceptively simple in light of the issues he addresses, as this passage about a doctor’s thoughts after a challenging day at the hospital from “Resuscitation” demonstrates:

On his way home, Slater drove through the rain. The silent, empty streets and unlit shops conveyed an aura of apocalypse. The drops that splattered his windshield reminded him of contaminated droplets spewing from Mr. Bertini’s lungs. The car’s wipers slapped side to side. Slater had read Camus’ The Plague, and he felt like Dr. Rieux traveling through his plague-stricken city, finding it hard to believe that pestilence had crashed down on its people. He came to Shoofly, a chic bar and restaurant. Through a water-speckled window, he could see young people laughing and drinking, crowded together without masks. Their gaiety and disregard for the virus angered Slater. Don’t they care about others? He blamed them for him not being able to hug his children or sleep with his wife. He blamed them for Mr. Bertini’s illness. He wished they could see his patient and know what fighting for your life is like.

A Doctor’s Dilemma brings fresh insight and reflection to enduring themes of medical and surgical care—how to be human and have immense responsibility for one’s patients; how to balance the personal and professional knowing that perfection is impossible; and how to forgive oneself for that imperfection knowing that good intentions and hard work may need to be sufficient.— Eli Hyams MD 

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Elias Hyams MD is an adjunct associate professor of urology and a robotic surgeon at The Warren Alpert School of Medicine at Brown University in Providence, RI.  He has previously served on the faculties of Dartmouth’s Geisel School of Medicine and Columbia University School of Medicine.  He completed his undergraduate studies at Yale and is a graduate of the University of Pennsylvania School of Medicine.  His residency at New York University-Langone Medical Center was followed by a fellowship at John’s Hopkins. His academic interest lie diagnosis and treatment of cancer of the prostate.