Episode 6: The Career Woman's Disease
The myth that Black women don't develop endometriosis is almost a century old and yet it still persists to this day. Where did this idea come from? How did endometriosis come to be labeled the "career woman's disease"? And, why is it harder for Black patients, and working class patients, to get diagnosed? Today's episode is the first in a two-part series exploring how race and class influence endometriosis diagnosis and treatment. We learn about the story of the doctors who established this myth -- and one doctor who dedicated his life to debunking it.
Transcript
Episode 6: The Career Woman’s Disease
Episode
Noa: Samantha Denae has always had terrible periods -- heavy bleeding and pain that made her miss school and work.
Samantha Denae: It seemed like nobody else had a bad cycle the way that I did.
Noa: It got worse when she was 16, so she tried taking different forms of birth control. But that didn’t help. Her pain was so bad, she was having to plan her life around her period. She’d go to doctor’s appointments and explain what was happening.
Samantha Denae: I have very heavy blood clots, like blood clots that are like the size of quarters.
Noa: She was buying packs of 40 pads for one cycle.
Samantha Denae: And I use that whole pack of pads in that one month of me being on my period, and that's a lot of blood to lose. And like that wasn't alarming or concerning to anybody.
Noa: Medical professionals were constantly telling her that it must be something else. Like one time at the emergency room. They gave her an IV and then the nurse came in.
Samantha Denae: And the first thing he said is, I think you're pregnant. And I said, “no, this happens to me every month. I promise you I'm not pregnant.” “No, I really think you're pregnant. You just probably don't know.”
Noa: The pregnancy test came back negative. She left with a prescription for ibuprofen. Samantha was frustrated. How long was she going to have to live with this severe pain? She went to other doctors who told her, maybe it’s fibroids. Fibroids are benign pelvic tumors, which can also cause heavy bleeding and pain. But fibroids show up on an ultrasound -- and nothing was showing up.
Like so many people we’ve talked to, Samantha started thinking it was all in her head.
Samantha Denae: I was telling myself, Sam it's really not that bad. everybody was making it seem like it was so normal to just have a period that lasted for so long that made me miss school and made me miss work
Noa: And then one day, when Samantha was 24 years old, the pain was so intense at first she felt like she couldn’t walk. She drove herself to the ER where she was prescribed codeine pills. The doctor didn’t tell her how many pills she should take. So she took the same number she usually took of ibuprofen.
The next morning she woke up and knew immediately that something was very wrong. She was dizzy and nauseous -- these were not her usual period symptoms. She drove back to the ER and went to the bathroom.
Samantha Denae: And I had to bust out of the bathroom and go to the registration desk and say, ma'am, I'm gonna die in here if you don't go grab somebody, I took all these codeine pills, something's wrong, I need for somebody to do something.
Noa: Samantha was overdosing on codeine.
A different doctor came in to see her. He had to give her an adrenaline shot to help slow down the narcotic. Samantha gave her usual speech about how awful her period was - the same thing she’d told so many doctors before. But this time, the doctor asked her three questions.
Samantha Denae: First, he asked me if my period is debilitating. He asked me is sex painful? And do I have issues with going to the bathroom? And I answered yes to all three of those questions. And he said, I think you have endometriosis.
Noa: Endometriosis, endo for short, is a condition where tissue that’s similar to the lining of the uterus grows in other parts of the body. It can cause very painful periods -- often pain that’s so intense people can’t go about their normal routine, like Samantha. The symptoms include nausea and digestive issues, chronic pelvic pain, pain with sex, and infertility. So the ER doctor wanted to see if Samantha had some of these symptoms.
He gave her a pamphlet about endometriosis. She’d need to have laparoscopic surgery in order to get confirmation. Samantha was relieved to have a diagnosis. And, still, it was upsetting. Why had none of her previous doctors had brought this up as a possibility -- especially when endometriosis is pretty common. 1 in 10 people with vaginas have it.
Why did it take multiple trips to the ER, what seemed like just a coincidence that she’d happened upon this doctor, and an overdose on codeine -- to get a diagnosis?
Samantha Denae: A lot of people don't believe that endometriosis exists in Black women. Like they think it's a disease that Black women can't get, it's like invisible to them.
Noa: The myth that Black women don’t develop endometriosis is almost a century old and yet it still permeates to this day. Where does this idea come from? Why is it harder for Black patients, and working class patients, to get diagnosed with endo?
Noa: This is Tight Lipped, a public conversation about a private type of pain. I’m Noa.
On this show we ask big questions about chronic vaginal and vulvar pain -- and pelvic floor dysfunction. We talk about painful sex. And shame. And the politics surrounding these conditions that we often keep secret.
We’ve heard many stories about how sexism and gender bias impact patients’ experiences when seeking care. But, gender is far from the only factor that makes it hard to get the health care you need. Race and class play a huge role in shaping our experiences in the medical system. Even though I’ve had doctors who dismissed me, I’ve benefited from race and class privilege every step of the way.
Over the next two episodes, we’re talking about a healthcare issue that for years has been impacted by racism, classism, and sexism -- that issue is endometriosis. In today’s episode, we’re focusing on the history of diagnosis. Specifically, the myth that Black patients and working class patients don’t develop endo. We’re going to tell the story of the doctors who established this myth -- and one doctor who dedicated his life to debunking it.
Noa: There’s debate and controversy about almost everything to do with endometriosis -- and its history. But we know that this particular myth originated in the 1930s. After World War I, there was a lot of social concern and panic in the US about declining birth rates -- especially among upper-class women. Because there were more contraceptive options, it was possible to wait longer to have children. Researchers were paying attention to hormones and fertility.
One of the prominent gynecologists at the time was Dr. Joseph Vincent Meigs. He was treating patients for infertility. In 1938, he wrote an editorial about how many of his patients had developed endometriosis.
Olga Bougie: And his opinion was that endometriosis was a disease of the well-to-do.
Noa: That’s Dr. Olga Bougie. She’s an OBGYN and professor at Queen's University in Kingston, Ontario. She says that Dr. Meigs speculated that endometriosis was on the rise because upper class women were getting married later and delaying pregnancy. He described endometriosis as a “lifestyle” disease.
Kate Seear: And that perhaps this was causing damage to their bodies in some way, because something unnatural, in his view, was happening....
Noa: That’s Professor Kate Seear, author of the book, The Makings of a Modern Epidemic: Endometriosis, Gender and Politics.
Kate Seear: That modern women were not complying with the obligations of nature, and therefore in his mind, this is why this disease had developed
Noa: Professor Seear writes about how Dr. Meigs drew comparisons between his patients and monkeys.
Kate Seear: He wrote that ‘the monkey mates as soon as she becomes of age and has off spring until she can no longer have any….as women have the same physiology it must be wrong to put off childbearing’….
Noa: Dr. Meigs said that early and frequent child-bearing is the natural thing to do. He attributed endometriosis to his patients’ own reproductive decisions. He believed that upper class women were developing endo because they had long periods of uninterrupted menstruation. The solution? They should get pregnant earlier, and have more children.
Kate Seear: Many of his writings in the 1930s and 40s was some of the first things ever published about the condition and they had a great influence on other practitioners and then you know, researchers and scientists in the years that came.
Noa: The idea that pregnancy is the answer to endometriosis is still pervasive today. Sometimes pregnancy can mask the symptoms because you don’t get a period. So the period pain and heavy bleeding can disappear for a time. But only some patients find relief. And it’s unclear whether pregnancy helps with endo in the long-run. Still it’s what some doctors recommend today. And Dr. Bougie says it’s the same thing Meigs advocated back in the 1930s and 40s.
Olga Bougie: He was also very prominent in the popular media at that time. And so his opinions, which were very strong, really had a broad outreach and lasted for a long time.
Noa: What does this mean for those who weren’t getting diagnosed? Or even the patients who were getting diagnosed and told to just get pregnant? Endometriosis is a devastating disease. People with endo live with chronic pain, inflammation, and organ dysfunction. They often have to miss school or quit work. It’s a progressive disease, the longer someone goes undiagnosed and untreated, the worse these symptoms become. Untreated endometriosis can cause infertility and difficulty conceiving.
Kate Seear: generations of women of particular backgrounds were never diagnosed with endometriosis, were denied healthcare and support as a consequence, lived lives of considerable pain and suffering which is an absolute tragedy to say the least.
Noa: So Dr. Meigs was spreading this idea that endo was a disease specific to well-educated well-to-do women. His theories weren't controversial at the time. But in hindsight we can see that many of his ideas were really problematic. A key theme in his writing was that upper class couples were reproducing at a lower rate than low-income couples.
Kate Seear: There was a concern that as a consequence of those reproductive patterns, the white race and the privileged upper classes of white society would die out.
Noa: It turns out that one of Meigs’ real concerns was about the future of white upper class society. This was at a time when wealthy white Americans were panicking about the continuity of the white race. Meigs called on his fellow doctors to encourage their wealthy white patients to have more children.
Kate Seear: 41:51 He was talking to largely white audiences of practitioners, and so when he was talking about "our families" I think we can take that to be a euphemism for white, well-educated, upper class citizenry.
Noa: Almost all of Dr. Meigs’ patients were white. And he didn’t explicitly talk about race. Still, his theories became a foundation for racist ideas well beyond his lifetime. Painting endometriosis as a white woman's condition made it that much harder for Black patients to get care and treatment.
Especially once these theories entered into the medical textbooks, a crucial resource at that time. Dr. Olga Bougie says the textbooks used terms like “racial immunity.”
Olga Bougie: Racial immunity, meaning that Black women were immune to the development of endometriosis. So stating race as a definite contributing factor.
Noa: The medical textbooks and literature said that being white was a risk factor for endometriosis.
Kate Seear: Doctors told one another, essentially not to bother to look because you won't find it, they don't get it.
Noa: A 1951 study at Harlem Hospital in New York claimed that endometriosis was almost non-existent among Black patients.
Kate Seear: It's not just that it was a kind of myth, it became a scientific fact because scientists and practitioners weren't documenting any of those cases and so that idea just repeated and reverberated throughout history.
Noa: In 1955, another study in New Orleans concluded that Black women and women of color from all different racial and ethnic backgrounds had low rates of endometriosis.
Olga Bougie: That it was higher education and quote unquote the stress of modern life and civilization...impacted white women disproportionately and this is why they were more likely to develop endometriosis.
Noa: The 1955 study even claimed that as Black Americans gained access to better education and higher-paying jobs, they would be at-risk for developing endometriosis as well.
To be clear, other research in the 1950s said the opposite -- that endometriosis occurred at the same rates among Black and white patients. Studies in the years since have confirmed that endometriosis is prevalent across all race and class backgrounds.
And yet, the myth persisted over time. Through the 1960s, 70s and 80s.
[Music from radio enters]
Radio Host: To those who have read his best-selling gynecological guide, It’s Your Body, Dr. Niels Lauersen has become synonymous with a new attitude towards women as people, and as informed patients.
Noa: This is a 1982 radio show called, “A Woman’s Place.”
Radio Host: Born in Denmark, he received his MD from the University of Copenhagen
Radio Host: Stay with us as Dr. Lauersen and I discuss the ways in which women can learn about their bodies and insist upon the best medical advice and treatment.
[Music Exits - part of clip]
Niels Lauersen: But there’s a great number of women and men that are infertile. And that’s often people that have postponed childbearing. Often people that are educated.
Noa: Dr. Lauersen was treating patients for infertility in New York. He said that his patients were educated people who had postponed childbearing.
Niels Lauersen: We found that quite often the same women had stressful jobs and maybe some menstrual cramps and so on. It led to what we call endometriosis, or the career women’s disease
Noa: The “Career Women's Disease.” A new way of describing what Dr. Meigs had talked about decades before. Mary Lou Ballweg, the founder of the Endometriosis Association, knew Dr. Lauersen.
Mary Lou Ballweg: His offices were on Park Avenue. You know a very she she area...
Noa: Like Dr. Meigs in the 1930s, Dr. Lauersen was treating some of the most privileged patients.
Mary Lou Ballweg: But of course, when I said to him, well who is it that you’re seeing on Park Avenue in Manhattan?...It’s highly unscientific to presume that the group that you happen to see represents all of reality.
Noa: The label of the “career women’s disease” took on a life of its own. It’s hard to pinpoint exactly when the label was first used -- probably in the late 60s and early 70s. Around the same time as the second wave feminist movement.
Kate Seear: The consolidation of and labeling of endometriosis as a “career women’s disease” coincides with this period of political and social upheaval….where women were starting...to protest and resist social norms and stereotypes
Noa: Again, this idea that their behaviors were causing the disease, it was their fault.
Kate Seear: And an idea took hold that endometriosis was a condition that therefore was exclusive to women who worked and prioritized work over family.
Noa: Popular magazines in the 70s and 80s wrote that women with demanding jobs were more likely to develop endometriosis.
Kate Seear: it was often repeated that endometriosis was not just a condition that was exclusive to career-minded ambitious women, but that to women who thought too much.
Noa: Everything about this myth gets very complex.
Kate Seear: And that's where I think race becomes very important. Once you get these ideas creeping in that smart women who are career driven and ambitious and have aspirations and have been able to access education are delaying childbearing, very racist assumptions about the intellectual capacity and ability of women of color creep in.
Noa: Textbooks, women’s magazines, and even some endometriosis self-help books described people with endometriosis as privileged, competitive, and selfish.
Kate Seear: They start to shape the way that the condition is thought about because of course at this time women of color were assumed to be less intelligent. 48:03 And to have fewer aspirations and to be, frankly, more willing to comply with the obligations of nature, as Meigs would've called it…..
Noa: So this all started out as Dr. Meigs’ theory -- that upper class older women develop endometriosis because of delayed pregnancy. Then it gets solidified, when research studies and textbooks make claims that Black women are immune to endometriosis. And this is reaffirmed with the latest stereotype -- the idea that ambitious, career women -- which is code for well-educated, high-income white women -- develop endometriosis.
Throughout this whole time patients of color and low-income patients are living with untreated endometriosis. For almost a century, the myth prevents them from getting a diagnosis. And, how do you change an idea that’s so pervasive in our culture and medical system?
Well, it took a doctor who lived and worked in a predominantly Black neighborhood. His name was Donald Chatman. He passed away in 2018. Dr. Lynn Todman, Dr. Chatman’s daughter says that he had a deep understanding of racism in the medical community. In part, because of his own personal experiences.
Lynn Todman: He was profoundly committed to serving the African American community and set up a practice on 87th and Stony Island in Chicago which he stayed at for several decades.
Noa: Lynn remembers that in his office, her father had three bulletin boards with the faces of all the babies he delivered. Many of them span across generations. She sees those photos as having relevance today. With the Black Lives Matter movement.
Lynn Todman: You know, I used to wonder, why do you have all those babies faces? And I don't know if he was, he probably wasn't conscious of it, but I am now, that he was helping to facilitate Black life.
Noa: He was helping to facilitate Black life. Many of the patients who came to him were struggling with infertility. He was committed to helping them even when other doctors said there was nothing they could do.
Dr. Chatman got started in Chicago in 1969, practicing at Michael Reese Hospital -- where he was only the second Black attending in the gynecology department. He set up his own private practice and it grew quickly. There, he met Linda, his wife, who was working as a registered nurse. Today, she’s a lawyer.
Linda Chatman: His patients loved him. but he wasn't your touchy, feely guy. Okay. Don't get me wrong. But he was the ultimate advocate for his patients.
Noa: Linda says that he was set on becoming an OBGYN from an early age. His father had been a doctor in the 1920s.
Linda Chatman: Back when his father was practicing, a Black man could not be a specialist. You know, he was a country doctor. He was a generalist in Baton Rouge, Louisiana. He couldn't specialize cause they didn't allow it.
Noa: After graduating from Harvard, Donald Chatman was denied entry into Louisiana State University medical school because he was Black. So he went to the same medical school as his father - Meharry Medical College.
Dr. Chatman loved delivering babies. But he was also particularly interested in gynecologic laparoscopy -- which is an alternative to open surgery. Most of his patients at Michael Reese Hospital were Black women. And he noticed that many of them had the tell-tale signs of endometriosis -- which immediately caught his attention.
Linda Chatman: But he's reading in the textbooks and he's hearing everywhere that Black women don't get it only, middle aged white women, got endometriosis.
Noa: Linda remembers one quote from the textbooks in particular.
Linda Chatman: And it said in the colored wards where PID is commonest, the endometriosis is rarest.
Noa: PID, or, Pelvic Inflammatory Disease, usually occurs when sexually transmitted bacteria spread to the uterus, fallopian tubes, or ovaries. Black patients were assumed to be hypersexual -- playing into a long-standing racist stereotype.
Linda Chatman: In his practice, he's seeing just the opposite. So he's seeing a lot of endometriosis, he's seeing it in teenagers and these women. So he started documenting it.
Noa: Endometriosis can only be confirmed through laparoscopic surgery. Dr. Chatman took photos during the surgeries and turned them into slides so that he could present to his colleagues.
Linda Chatman: The medical establishment was saying you had to be a middle aged white woman, you know? But nobody was looking at teenagers.
Noa: Dr. Chatman was finding that teenagers got endometriosis. This alone was evidence that something was wrong with the idea of the “Career Women’s Disease.” Linda says that both she and her husband were skeptical of the theories from the 1930s.
Linda Chatman: Think about what they're saying, hey, start having babies earlier, you know, younger, or this is going to happen to you, you know? They're saying, they're trying to put women back where they belong.
Noa: In the 1970s, Dr. Chatman started compiling the data. He decided that he would evaluate patients who presented with pelvic pain and see how many had endometriosis. He sent his papers to all sorts of journals asking them to publish his findings. He asked to come in and speak at medical meetings. Nobody would listen to him.
Linda Chatman: He got turned down flat and he kept saying, no, no, no, this, you know, I've got all this data...he just kept getting turned down, turned down, turned down.
Noa: No one wanted to hear about how Black women had endometriosis. Still, Dr. Chatman knew there were high stakes for his patients. Misdiagnosis and mistreatment was causing years of unnecessary prolonged pain.
Linda Chatman: If a Black woman walks into the ER or comes into your office and she's complaining of bleeding, pelvic pain, you know, that kind of thing, give her some antibiotics, send her on her way. Okay. If a middle aged white woman comes in with the exact same complaints, then you work her up for endometriosis. It's just as simple as that.
Noa: Black patients’ pelvic pain was diagnosed as PID. It was assumed to be from a sexually transmitted infection. Diagnosing young Black patients with PID didn’t solve any problems. They’d come back a few weeks later with the same symptoms. Their endometriosis was untreated for years and years.
Linda Chatman: It was just part of the systemic racism saying, you know, that Black women were, um, promiscuous. And so they were fast and loose. And so they get pelvic inflammatory disease from being promiscuous. And they don't get the nice clean disease, like the endometriosis.
Noa: These kinds of racist assumptions weren’t rare. Dr. Chatman saw how his colleagues disrespected their Black patients.
Linda Chatman: One of the things that really stuck in his craw was that white physicians would double glove to examine Black women, but not white women. And to do vaginal exams and to, or even to touch Black women, you know, which is just ridiculous.
Noa: Linda says that his colleagues’ racist beliefs impacted how they practiced medicine.
That’s part of why, when Dr. Chatman argued that Black women have endometriosis, it was a really big deal. He was pushing back against centuries of racist ideas about Black women’s bodies. Ideas about hypersexuality and promiscuity.
But other doctors said they just didn’t believe Dr. Chatman’s data. Until one day, when he got an unexpected opportunity.
Linda Chatman: Finally he got an invitation for a medical meeting in Saskatoon, Saskatchewan in Canada. I mean, like in the middle of nowhere.
Noa: So he went to present his data for the first time. They listened to his presentation, but seemed incredulous. After the presentation, a doctor approached him.
Linda Chatman: So this physician walks up to him and he says, so, um, do fair skinned, Black women, get it more than dark skinned Black women? And he’s like, no, what are you talking about! They just could not wrap their head around the fact that Black women got endometriosis, you know?
Noa: Things started to change for Dr. Chatman.
Linda Chatman: He wasn't embraced with open arms, but he was at least able to get, get an audience, you know, so, and then over time because he just wouldn't give up. He got to be more well known and, um, and people started listening to him.
Noa: Finally, Dr. Chatman’s research was approved for publication. He’d spent years insisting that his patients had endometriosis. Not unlike many patients who spend years searching for a diagnosis and for someone to take them seriously. In 1976, Dr. Chatman published an article called Endometriosis in the Black Woman.
He confirmed endometriosis in 1 in 5 of the patients he studied. Many of them had been wrongly diagnosed with Pelvic Inflammatory Disease. He argued that misdiagnosis stemmed from the long-standing myth about immunity. The stereotype about promiscuity. And, the idea that only older women develop endo. In the article he called on his fellow doctors to listen to their Black patients who had pelvic pain -- and to investigate.
Slowly, Dr. Chatman got more of an audience. He started to be seen as a prominent and well-respected OBGYN. He joined the board of the American Association of Gynecologic Laparoscopy. There he had a national platform and later served as the president. By the mid-80s, his impact was visible.
Linda Chatman: And he actually changed the textbooks. They actually admitted that Black women and teenagers got endometriosis….I mean, almost single handedly. I mean, he just, he just wouldn't give it up, you know? Thank goodness.
Noa: Dr. Chatman saw the textbooks as the root of the problem - spreading misinformation. He believed changing medical education could finally debunk the myth. And, to an extent, it worked. People backed away from the idea that Black women and working class women couldn’t get endometriosis. Lynn, Dr. Chatman’s daughter, says that this was significant.
Lynn Todman: He was basically challenging medical convention, which is a political act. I think a lot of what he was doing was political in nature. I don't think he would have characterized it as that. But looking back on it and understanding what I know now, he was an activist physician.
Noa: Since we can’t speak to him directly, we wanted to hear from some of his patients. And the residents who trained under him.
This is Donna:
Donna Younkins: And I never really had developed a relationship with any of my doctors...I just went in to get my pap smears and whatever, and then I would leave. And only when I met Dr. Chatman, did I feel comfortable enough to discuss my cramps? You know, whatever was going on with me.
Noa: Dr. Chatman discovered that Donna had endometriosis when she came in to have her tubes tied. She’d always been told that her pain was all in her head.
Donna Younkins: He was the type of physician you could just sit and talk to…he made you also feel comfortable.
Noa: Another patient, Beth, was referred to him when she moved to Chicago.
Beth Kaveny: He never stopped being curious, about what it was that was generating a patient’s complaints.
Noa: He delivered two of her children.
Beth Kaveny: You could tell him anything. He took everything that you told him with such importance, That you just had an incredible amount of trust in him.
Noa: Dr. Gloria Elam is an OBGYN who was trained by Dr. Chatman.
Gloria Elam: If you called him at night to tell him about a patient, he started telling you before you finished telling him. Oh, he knew everybody. He knew all the details. He was very aware of each patient as an individual.
Noa: Dr. Joann Smith also did her medical training under Dr. Chatman.
Joann Smith: He really taught us...you had to believe, believe people. He took people seriously. He knew there was something that doctors were missing and he was gonna teach us, by god.
Noa: Linda Chatman says that the work to build awareness, catch and treat endometriosis is far from over.
Linda Chatman: Every woman should know what endometriosis is, whether they have it or not. They should know like people know breast cancer is.
Noa: As we know from other stories, endometriosis as a condition is still misunderstood. And Dr. Olga Bougie reminds us that it takes 7-10 years for patients to get a diagnosis.
Olga Bougie: It's a condition that's very enigmatic and very challenging to diagnose. So when we look at this historical perspective I think people were trying to break through that enigma. But you know there isn't a simple test for it.
Noa: Getting a diagnosis has always been dependent on which doctors you can go to - and whether they take you seriously.
Mary Lou Ballweg: I think the myth came from kind of the idea of who gets the disease is those who can manage to get diagnosed.
Noa: That’s Mary Lou Ballweg again - from the Endometriosis Association. She says that all along, this myth was based on an assumption. Dr. Meigs was almost only seeing upper class white patients, so that’s who he claimed developed endo. He wasn’t thinking critically about his patients' social and economic backgrounds -- and the availability of healthcare in the US.
Kate Seear: He drew a conclusion that something about those women's own practices were causing endometriosis and that it was only them that were getting it.
Noa: That’s Professor Kate Seear. This continued to hold true throughout the decades.
Kate Seear: Doctors didn’t see these women presenting at their clinics or believed that they wouldn’t have the condition and therefore didn’t look for it and didn’t diagnose it. It's almost certain that this became a self-fulfilling prophecy.
Noa: Today, Black patients are dealing with the consequences of this history. Like Samantha, who we heard from at the beginning of our episode. The remnants of this racist myth made it so Samantha had to suffer through years of trips to the ER -- and an accidental codeine overdose, before she got a diagnosis.
Samantha Denae: There’s not a lot of women that I’ve been able to find that look like me who have endometriosis. But I can’t be the only one.
Noa: Now Samantha goes into high schools to teach about period health. She wants to help teenagers get diagnosed earlier.
Samantha Denae: I teach in mostly Black communities, I’m learning that they’re getting dismissed….and their doctors are telling them that it’s normal.
Noa: Samantha sees how much work still needs to be done.
Samantha Denae: We're being dismissive of their pain and their bodies. And, is it because of the color of their skin? Could it be because she's Black?Would the doctors be more apt to do tests and find out what's going on faster?
Noa: Just because the myth is mostly gone from the popular press and medical textbooks, doesn’t mean it’s gone from our subconscious. Or from the subconscious of medical professionals. In 2019, Dr. Bougie conducted a review of the medical literature -- revealing that Black patients are only about half as likely to be diagnosed with endometriosis, compared to white patients.
In fact, up until this past summer, Johns Hopkins listed “being a white woman” as a risk factor for endometriosis. It wasn’t until Kyla Canzater, a Black endometriosis advocate, called them, that they took it down.
Kate Seear: The language has changed, it's softened in a way, it's not quite as blunt as the language that we might've seen Joseph Meigs use. Women are still being told that they have played a role in developing the condition through their practices, behaviors. And there are still racist and classist undertones to that language. I guess the legacy of these ideas is still with us.
Noa: We can’t change what happened in the past. In many ways, Dr. Meigs and his colleagues were products of their time. We need to examine the values that are informing our medical system today. This history influences diagnosis, treatment, and medical knowledge itself.
Most of the research on endometriosis is still conducted on white women. What researchers decide to study and look into today, will impact people 50 years from now.
Kate Seear: These are ideas and practices keep resonating. They have echoed throughout the ages.
Noa: Looking back at the history of this myth, I’d like to put a mirror up to the medical professionals who have claimed that endometriosis doesn’t exist in Black and working class women. I think that the myth of the “Career Women’s Disease” isn’t actually a story about patients. It doesn’t tell us anything about who does or doesn’t have endometriosis. Instead, it’s a story - and history - of medical professionals. It’s a reminder that doctors aren’t gods. They’re products of our time and socialization. But this story is also a cautionary tale about what’s at stake when our doctors decide who is worthy of diagnosis, and deserving of care.
This episode was part one of a two-part series on how racism and classism inform endometriosis. In our next episode, we’ll dive back into Samantha Denae’s personal story. We’ll hear about her search for effective treatment and the political history of hysterectomies.
Credits
Thanks for listening! If you want to learn more, check out the episode page on our website - tightlippedpod.com. This episode was produced by me, Noa Fleischacker, Hannah Barg and Sararosa Davies, our Production Fellow. Our editor is Erisa Apantaku. We also received editorial support from Valeria Donoso, Rebecca Magnan, Arianna Skibell, Daniela Tolchinsky and Judah Kauffman. Thank you to Pacifica Radio Archives for the clip of Dr. Lauersen, and to Olga Bougie and Carolyn Carpan.
We’re also incredibly appreciative of the professionals who gave their time and expertise to this episode. Our episode art this season is designed by Arielle Stein and our logo is from Gaby Escovar. Melissa Guller at Wit & Wire designed our current website - you can check it out at tightlippedpod.com. The music you hear is from Blue Dot Sessions.
We’re so grateful to have the support of our sponsors. This season is supported by the Dorot Fellowship Alumni Leadership Award, the National Vulvodynia Association and The Vagina Collective.
Thank you so much and we’ll be back soon.