With Tracey Lindeman, author of BLEED: Destroying Myths and Misogyny in Endometriosis Care. The link between discrimination and your health is undeniable. The World Health Organization describes social determinants of health as “non-medical factors that influence health outcomes”, the “conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life.”
Discrimination based on gender and other connected factors like our race and ability impacts our health in so many ways. For example, we get treated differently based on our gender in heathcare settings. Our access to relevant health services and options differs wildly depending on our gender. Even the medical research that gets funded and acted on depends on our gender.
May 28 is International Day of Action for Women’s Health. For the next few episodes, we’ll focus on gender and health matters.
Our guest Tracey Lindeman is a longtime freelance journalist. She’s published in The Guardian, the Associated Press, CBC, Fortune, and more. She is author of BLEED: Destroying Myths and Misogyny in Endometriosis Care. She is from Montreal and currently lives in western Quebec.
A note about content: this episode addresses gender-based violence.
Transcript
00:00:06 Tracey
Misogyny is fundamental to the treatment of endometriosis. We live in a deeply misogynistic society, and the medical system is no exception.
00:00:16 Andrea
What about endometriosis and gender gaps in care?
I’m Andrea Gunraj from the Canadian Women’s Foundation.
Welcome to Alright, Now What? a podcast from the Canadian Women’s Foundation. We put an intersectional feminist lens on stories that make you wonder “why is this still happening?” We explore systemic routes and strategies for change that will move us closer to the goal of gender justice.
The work of the Canadian Women’s Foundation and our partners takes place on traditional First Nations, Métis, and Inuit territories. We are grateful for the opportunity to meet and work on this land, however, we recognize that land acknowledgements are not enough. We need to pursue truth, reconciliation, decolonization, and allyship in an ongoing effort to make right with all our relations.
00:01:09 Andrea
The link between experiences of discrimination and your health and wellness is undeniable.
It’s all about the “social determinants of health.” The World Health Organization describes them as “non-medical factors that influence health outcomes”, the “conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life.”
Discrimination based on gender and other connected factors like our race and ability impacts our health in so many ways. For instance, we get treated differently based on our gender in healthcare settings. Our access to relevant health services and options differs depending on our gender. Even the medical research that gets funded and acted on depends on our gender.
May 28 is International Day of Action for Women’s Health. For the next few episodes, we’ll focus on pressing gender and health matters you may know bits and pieces of but probably need to learn more about.
Our guest Tracey Lindeman is a longtime freelance journalist. She’s published in The Guardian, the Associated Press, CBC, Fortune, and more. She’s author of Bleed: Destroying Myths and Misogyny in Endometriosis Care. She is from Montreal and currently lives in western Quebec.
A note about content: this episode addresses gender-based violence.
00:02:38 Tracey
Endometriosis is a condition that affects supposedly 10% of people with uteruses. So, it can affect cis women, nonbinary people, trans men.
It’s a condition in which cells similar to the lining of the uterus grow outside of the uterus. They’re not identical, but they’re similar, and these cells can lead to growths, you know, kind of get plastered to the outside of the uterus, the ovaries, fallopian tubes, but also your colon, your bowels, your intestines—all of your other organs, including your bladder. It can even travel as far as your diaphragm, your lungs, your brain. Some people even have it in their skin, and this condition can be extremely painful for people who have it.
Not everyone has a ton of pain and the amount of disease you have in your system is not indicative of how much pain you feel. So, you can have, like, the tiniest little piece and you’re in excruciating pain. You could be absolutely riddled with this disease and not really have any pain symptoms at all. But it seems, by and large, we’re hearing from a lot of people who are in extraordinary amounts of pain.
In terms of the book, the book is a journalistic reported nonfiction piece of work that incorporates more than 40 interviews with extensive academic research and anecdotes from either patients, doctors, or other people in the system who are just trying to live their lives the best they can with the effects of this disease.
The reason I decided to write Bleed was because I had—have—endometriosis. It took me 24 years to get diagnosed. It was a lot of gaslighting, a lot of: “Why don’t you just lose weight? Why don’t you just have kids? Having kids gets rid of endo. Why don’t you…” —as a kind of joke, in the prologue in the book, you know— “drink unicorn blood on a full moon.” Like, I just heard it all.
Everyone always had an opinion or an idea about what I could do to manage the pain. But what I really needed was effective medical intervention and I was not getting that for most of the time that I was suffering with this disease, and so, I decided to write a book about it.
00:05:05 Andrea
How do gender inequities, discrimination, and misogyny impact those with endometriosis?
00:05:11 Tracey
Misogyny is fundamental to the treatment of endometriosis. We live in a deeply misogynistic society, and the medical system is no exception. I think a lot of doctors and people who have a lot of respect for the medical profession like to believe that medicine is unbiased and it’s simply not. And different people experience different biases.
I kind of describe it in the book as we’re all kind of standing in the sea. Some of us are closer to shore than others. A cis white woman, middle class, who has generally been taken seriously, might be only like ankles deep in the water.
A queer Black person might be 30 feet away from shore, and if you only have a 20-foot-long life preserver, you only catch people who are 20 feet away, right? Everybody else is kind of on their own to figure it out and tread water and try to get to shore on their own.
Like there’s a lot to think about because it’s not only gender inequities. It’s a super intersectional form of discrimination that people experience when they have a condition like endometriosis.
One, because it’s a disease that almost exclusively affects women. That’s why it’s taken so long for us to actually hear anything about it, even though it affects 10% or more of people. And the reason I’m casting some doubt on the 10% figure is that, actually, I haven’t been able to find where that 10% comes from and I don’t know anyone else who has, but it seems like everyone knows someone who has endometriosis.
And so, kind of, the way that I talk about it is that you know and love somebody with endometriosis. Because every time I talk to anybody about this condition or about the book that I wrote, they’re like, “Oh, yeah, my sister, my friend, my mom, my aunt—I have endometriosis,” and it seems stunningly common, anecdotally, maybe more than one in 10.
You know the fact that we don’t actually know is misogynistic in itself because, like, we know how many people have prostate cancer. We know how many people, you know, have breast cancer. So, why don’t we know this?
And I think that that’s maybe an interesting question to ask, an open-ended question. I don’t know if we’ll ever know the answer.
But in terms of, specifically, misogyny in the medical system. I mean, gynecology was founded on misogyny. The supposed father of gynecology, James Marion Sims, got his title because he developed and experimented surgical techniques on enslaved Black women that he kept in a backyard hospital, and not only did he perform multiple experimental surgeries on them without anesthetic, but he also made the people who were not currently being operated on assist him in his surgeries.
And for that he was given the title of the father of gynecology, and he’s the person who invented the modern speculum, and the fact that the design of the speculum has not really changed since he invented it, and it was invented by a man who didn’t care about women being in pain, suggests to me that there really isn’t a lot of interest in innovating and making women more comfortable in the medical system.
And so, these are just little anecdotes, of course, and you know, I could talk for hours about the history of gynecology—kind of, how the paternalistic system really embraced it, but I think you have some other questions to get to as well.
00:09:10 Andrea
What needs to change to make care and diagnosis better for people with endometriosis?
00:09:15 Tracey
I think there are a few really easy free things that can be done to improve the experience of healthcare for women and gender-diverse folks, and the number one thing I always say is: listen to your patients.
So many times, I was told, “Where did you read that, on Google?” Like, as if I was totally illiterate, like I just could not possibly comprehend anything that I was reading and that doing the thing that everyone does when they’re looking for information, which is going on the Internet, wasn’t considered a legitimate form of research, and I just thought that that was so telling. Even women doctors kind of treated me with the same disregard, as if, like, I just had no medical literacy at all.
I’m not a doctor. That’s true, but what ends up happening for people with conditions like endometriosis is you kind of become your own doctor in a lot of ways, because you’re not getting the help and the answers that you need in the medical office, and so, you end up turning to other people in the community, doing your own research and that kind of thing, and some of it may not be great, and some of it is actually better than what your doctors know.
But to blanketly say that nothing a patient brings to the medical office is worth consideration or discussion is paternalism at its finest and the medical system is paternalistic to its core. Even female doctors are guilty of exercising that paternalism, because they are trained in the paternalistic system, and they are punished if they try to rebel in that medical system.
Another thing that I think was really sorely lacking from my own personal experience is that my decision about my own fertility and desire for children was not taken seriously. I knew when I was a kid that I didn’t want kids. I never wanted kids. I never changed my mind about not wanting kids.
But because endometriosis involves, to some extent, the reproductive system, I was basically told that I couldn’t do anything about it except keep taking the pill to help manage my cramps and bleeding. I was put on the pill when I was 14 to help control my period, and I went off it when I was 26 because I had switched to a couple different brands because the one that I had originally been put on wasn’t really cutting it anymore. And the last one that I took was, Yaz, a medication that ended up being recalled because several dozen people in North America died from it, from complications of it.
That medication, in my experience, it made me feel crazy. I felt totally unhinged and I was like, “I can’t do this anymore. I don’t even know who I am anymore. Who am I without the pill? I’ve been on the pill since I was 14. I’m an adult now, like, who am I?”
And so, at 26 I went back to my doctor, and I said I don’t want to be on the pill anymore, I’m stopping the pill. Can I have a hysterectomy, because I don’t want kids and I’m in so much pain and you could do so much to help my quality of life and enjoyment of life by just taking this thing out of me.
At the time, I didn’t know that hysterectomies don’t cure endometriosis, but I also had adenomyosis, which I discovered in my 30s, and that condition is addressed by a hysterectomy. So, either way, a hysterectomy would have helped not only my actual suffering but my perceptions of suffering because I had really focused a lot on my uterus as like the source of a lot of troubles in my life.
And I was told that I wasn’t allowed. I wasn’t allowed to have it removed. I wasn’t allowed to touch it. It was just my family doctor. I didn’t even have a gynecologist, like, I was never sent for a consultation to a gynecologist until I was in my early 30s and I got my period when I was 11.
It’s just a lot of, like, “oh, well, you know, whether or not we diagnose you it’s the same treatment anyway, which is birth control pills,” and there was just, really, like a lack of imagination.
Now that we’re hearing more about endometriosis in the zeitgeist, I think family doctors, not even just gynecologists but family doctors, gynecologists, all sorts of doctors, need to actually do their due diligence and learn about what this condition is, because it’s as common as diabetes for women. Like, learn that. It’s your responsibility as a doctor to know about this extremely common condition and what is actually the gold standard of care.
00:13:52 Andrea
Can you offer any tips for listeners dealing with endometriosis and not getting the care they need? What can they do?
00:14:01 Tracey
The Canadian system is its own beast. You know, I’m from Quebec. I’m from a place where there are almost no family doctors, it seems. We have the highest number, or the highest rate, of doctors opting out of the public healthcare system.
So, you don’t really get a choice. You get assigned a doctor if you’re lucky to get a doctor in the first place, and then even if you hate their guts, you have to stick with them. And so, you really don’t have a lot of options and they don’t necessarily know what the gold standard of care is. So, I would say really doing your research like reading Bleed, but also talking to other people in the community, in your community, to know what resources are available so that you can, kind of, bring some information to your doctor and hopefully they’ll listen to you, you know—get you to the people that you need to see to be able to get actual treatment.
And I should just interject and say that the gold standard of care in endometriosis is excision surgery in which they cut out, they remove, the disease laparoscopically. It is not ablation, which is burning or cauterizing the disease. It almost always comes back in those situations, but so many doctors conflate cauterization or ablation and excision. They are not the same.
I have to be real. Like, if you can’t get the care that you need in your community, you should really seriously consider going outside of it, even if it means paying out of pocket, because the change in your quality of life is so extraordinary in a lot of situations when you can get proper care.
We’re talking about your life and the result of your life, and how much are you willing to put up with? And I know I’m speaking from a place of privilege when I say just go to another country. But you know, sometimes it means taking out a loan, borrowing money from friends and family, setting up a GoFundMe because it is your life, and you have to be able to live it in the best way possible.
And I’m not saying this in the way that, like, I don’t approve or care about Canadian healthcare. I actually care very deeply about universal healthcare, and I think that the governments, both federally and provincially, have failed to fund healthcare appropriately, and that has led to the situation that we’re in.
You know, those systems need adequate funding to actually provide not only emergency care, but also preventative and chronic illness care that we’re just not getting. What do you do in the meantime? Like, yes, we can hope for better. We can vote for better. We can try to change the system.
But every year that you deal with this disease is a year off your life. I’m just trying to keep it real, but those are kind of, like, the big philosophical questions, I guess that we have to manage along with the day-to-day tedium of dealing with this disease.
00:16:56 Andrea
Alright, now what? Check out Tracey Lindeman’s book Bleed: Destroying Myths and Misogyny in Endometriosis Care.
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