A patient enters a doctor's office and details a gruesome list of symptoms: pelvic pain, bleeding, crushing fatigue, pain with intercourse or bowel movements. The through line is pain – years of it. The diagnosis? It's all in her head.
This scenario has played out in thousands upon thousands of medical environments for decades, and the culprit behind the epidemic of silent suffering is finally being more widely discussed: endometriosis. Unfortunately common, and often debilitating, the disease affects fully 10% of cis women. Once considered the "working woman's disease", endo (as it is commonly known), is a complex syndrome that has been mistreated and misdiagnosed in millions.
To combat this disturbing, decades-long trend, journalist Tracey Lindeman wrote Bleed: Destroying Myths and Misogyny in Endometriosis Care (ECW Press). Unflinching, furious, meticulous, and compelling, Bleed draws not only on Lindeman's in-depth research and extensive interviewing, but also on her own journey with the disease, and her personal (and infuriating) experience of the medical gaslighting, wellness culture misinformation, and often misogynistic treatment endo patients encounter.
Lindeman goes further to examine the intersectional patient experience, delving into how fatphobia, racism, classism, transphobia, and ageism factor into the care (and lack thereof) received by those seeking treatment. Lindeman's quick mind, engaging wit, and unapologetic fury for what has clearly been a systemic failure make Bleed a crackling read and we're thrilled to speak with her about it today, where she tells us the unjust reality of having to present an "iron-clad case" to doctors while seeking treatment, about the experience of having her endometriosis surgery cancelled due to the pandemic after lobbying for it for 10 years, and the impact a supportive literary grant environment made on her journey to write BLEED.
Tell us about your new book and how it came to be. What made you passionate about the subject matter you're exploring?
BLEED: Destroying Myths and Misogyny in Endometriosis Care is part-memoir, part-investigative journalism, all scathing indictment of the ways the medical system treats people with endometriosis. It’s informed by my 24-year journey with the disease, and uses interviews, research, and analysis to explain — using an intersectional lens — how various forms of systemic discrimination keep people from getting appropriate care for a disease considered to be one of the world’s most painful conditions.
What was your research process like for this book? Did you encounter anything unexpected while you were researching?
I approached research for BLEED like I approach doctors’ appointments: I had to make an iron-clad case with tons of evidence to support my points and my demands.
That’s the sad reality of having a disease like endometriosis. In medicine, women have historically been treated as exaggerators — that the things you inherently and instinctively know about your body aren’t considered valid information because of your gender. That’s the case with all kinds of illnesses, but a feminized illness like endometriosis makes the doctor’s office dynamic even worse. And so a lot of people — including me — go to doctors’ appointments armed with research and information to try to persuade our doctors to help us in the ways we want to be helped.
I know the dynamic well; doctors shrugged off my pain for 24 years. My mission with BLEED was to make as airtight a case as possible. To do that, I leaned heavily on scientific, academic, and historical research to support my experiences and the experiences of the people I interviewed — to prove that endo sufferers aren’t hysterical, but rather that we’re victims of historical and ongoing medical misogyny.
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In terms of the unexpected, one of the things I loved discovering was the concept of epistemic injustice. It’s the idea that the knowledge that marginalized people have is not considered credible because of prejudices against them.
Viscerally, I knew about it before I had the words to describe it. From my experience, I knew that certain things about me were being used to undermine my credibility in understanding my own body and disease (e.g. body size, tattoos, C-PTSD, low socioeconomic status as a youth, etc.).
As it turns out, epistemic injustice is a huge undercurrent across endometriosis care, as well as in poorly understood conditions such as autoimmune diseases.
A lot of nonfiction prizes and anthologies have expanded to welcome more personal nonfiction as well as strictly research-based nonfiction. What do you think of this shift within the genre?
As someone who falls into these categories, I love it. I’m based in Quebec, and although this province has a robust arts funding council (CALQ), work that is considered “journalistic in nature” does not qualify for any kind of financial support. So I really hope that more recognition for this kind of work drives CALQ to change their eligibility criteria for reported nonfiction.
What do you do if you're feeling discouraged during the writing process? Do you have a method of coping with the difficult points in your projects?
Although BLEED is my first book, I have been a professional writer for 19 years. So, when I sat down to write BLEED, I’d already developed my coping mechanisms — the good and bad ones — for writer’s block and the struggle for inspiration.
I am very much a procrastinator; if the mood isn’t right to write — or if I don’t have a pressing deadline — I will literally do anything and everything else except what I’m supposed to do. (I did improve on this a bit since I began writing BLEED, thankfully.)
I had a bit of a hard time getting started, which felt really familiar; often, when I’m writing an article, I need to hammer out a lede first before I can move on to the rest of the piece. Having a whole book in front of me —not just a 700–1,000-word article — put extra mental pressure on me to really get the lede right. I thought about the lede constantly, but my internal procrastinator wouldn’t let me write it down until I finally figured it out. Once I got it, the words flowed from there.
One major thing that helped me enormously was that I started the book while living in Ontario, and that made me eligible for Ontario Arts Council funding (which does not exclude journalistic work). I got enough money to let me take a few months off from work and focus solely on the book, and that gave me major momentum once I got started. Without that funding, I’d probably still be writing BLEED. With it, I was able to write the first draft in four months.
In terms of my actual coping mechanisms, writing outside helped. I wrote it over the summer — my favourite season — so I spent a number of days in my hammock with my laptop. I also find it hard to concentrate when my desk and office are messy, so periodically doing a big clean-up of my indoor writing space really helped. Batch-cooking food and prepping salad ingredients also helped, as did tending to my little vegetable garden.
Do you remember the first moment you began to consider writing this book? Was there an inciting incident that kicked off the process for you?
For a bit of background, it took me more than 10 years of persistently lobbying doctors for endometriosis surgery before I finally found a doctor willing to do it. The idea for BLEED really solidified when the surgeon agreed and a date was scheduled, because it finally felt like I had a story arc. It wasn’t just one long tale of suffering; it suddenly had a beginning, a middle, and an end. My surgery was scheduled for March 2020 and, well, we know what happened — COVID-19. My surgery got cancelled and it threw me into major despondency. After grieving for a bit, I used that as a catalyst for the work. I contacted Transatlantic Agency to get representation shortly after the cancellation, and it took off from there.
What defines a great work of nonfiction, in your opinion? Tell us about one or two books you consider to be truly great books.
I love all kinds of nonfiction work: oral histories, biography/autobiography, reported books, etc. They help me understand the world I live in and draw me closer to the things I love, like music; as a teen and young adult, I really gravitated toward books about musicians, bands and music culture.
I’ve re-read Please Kill Me: The Uncensored Oral History of Punk many times. I first discovered it at the library when I was 17 or so, and it ended up informing so much of my musical journey and the development of my personal values. I love the way the authors Legs McNeil and Gillian McCain weave together history, funny stories, anecdotes and behind-the-scenes material about the NYC punk scene of the late 1960s and across the 1970s.
A more recent book I loved is Empire of Pain: The Secret History of the Sackler Dynasty. Patrick Radden Keefe is such an incredible author, and the way he tells the story (both on the page and in the audiobook) is a master class in literary journalism. I find his work so inspiring and it really propels me to develop my own creativity and storytelling.
What are you working on now?
Beyond my regular pay-the-bills work, I’m focused on figuring out how to best support BLEED and make it a success. I’ve also got a good idea for a second book, and I’m planning to spend the summer writing that proposal.
Tracey Lindeman is a longtime freelance journalist whose work has appeared in The Guardian, The Atlantic, Al Jazeera, Maclean’s, The Walrus, the Globe and Mail, and many other publications. She is from Montreal and is currently based in western Quebec.