We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
This story was originally published on March 12, 2018.
In 2010, Abby Norman was attending Sarah Lawrence College on a scholarship after escaping her hometown and a household where she rarely felt loved and nurtured. She was pursuing a career in dance and didn’t have to foot the bill for her college education because she’d earned an academic scholarship. All of that changed during a routine shower. While Norman was showering, an excruciating, but unexplainable, pain took hold of her body. She found that she could barely pull herself out of the shower and even laying in her bed in the fetal position didn’t ease the persistent pain. In fact, since that fateful shower, the pain has never really left.
The pain forced her to leave Sarah Lawrence because she could no longer keep up with her studies. The pain led to a diagnosis of endometriosis, and then a surgery that didn’t alleviate the symptoms. The pain has kept her in and out of emergency rooms and doctor’s office where physician after physician have misdiagnosed her, undermined her, and made her believe that she was imagining her symptoms. The pain has irreversibly changed her life. In Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, Norman situates her experience within the sordid history of medicine dismissing women’s pain.
Her eye-opening memoir makes it clear that women with chronic illnesses are being disregarded and mistreated, and that it will take more women telling their stories to force systems to shift. I spoke with Norman about how she’s fought for treatment, what she’s learned about hysteria, and why endometriosis is characterized as a white woman’s disease.
In the book, you offer really great historical insight into hysteria. Yet you bring it back to the individual level by saying “not even the most modern modern women have completely broken free” from hysteria. You write, “[Hysteria] lives in all of us, a little cough that makes us question our perceptions of ourselves, the innermost truth of our bodies, our very minds.” How did the fear of being seen as a hysteric keep you from getting the medical care that you needed?
Before I started writing the work, I hadn’t necessarily appreciated how much of that I internalized from a very young age. I was going through all of this in my early 20s, so I have to assume that these broader implications came into my life [when I was] fairly young. If a woman is in pain, or she has any troubling symptoms, there’s this social expectation that since women are caregivers, we must put other people’s needs ahead of our own. There’s this constant idea that we’ve just got to grin and bear it or push through it because we have responsibilities. There’s this idea [that we should] deny these physical experiences, but also question them. Is it really that bad? Am I just not handling the pain in the best way? Maybe I’m just being too sensitive.
So when you’re coming into an interaction with a medical professional, the healthcare system is prepared to tell you the same thing. Those doubts are stoked by other people’s questions, and other people’s denial, about a woman’s perception of her own physical body. It makes it incredibly difficult when having those initial interactions, and you’re trying to get a diagnosis or find some sort of treatment. I went to see my doctor right before I came to New York for the release of the book. Here I am, seven or eight years from when [I first started feeling the symptoms of endometriosis], and even now, after researching and understanding [the denial of women’s pain] on an intellectual level, I still sometimes walk out of an encounter with a doctor and think, “Am I just making all of this up? Maybe I’m just not coping well enough. Maybe I’m just being too sensitive.” The power dynamic between the doctor and the patient or the medical establishment and the patient—the patriarchal structures that heavily inform both of those things—is very heavy and persistent and can be very exhausting. All of these issues are so remarkably complex, and it was very frustrating trying to frame my story within this larger story.
I was talking to someone recently, and they said that my story doesn’t have a happy ending because I don’t get better. Actually, I didn’t. I got sicker, and I’m still getting sicker, and there’s something dissatisfying about that. We want there to be these tidy endings, but that isn’t the reality of living with a chronic illness. And there certainly isn’t [a happy ending] when you’re operating in this larger social structure that really keeps women, in some way or another, oppressed. A medical encounter is supposed to be structured with a very real power dynamic, and the patient doesn’t necessarily want to be in power. We know that doctors have all of this knowledge and all of these years of education, so we have this trust before we’ve even met them and we accept that we’re not in power.
I’m getting a constant barrage of emails and Twitter messages from women of all ages, locations, and socioeconomic backgrounds, and I’m learning that the doctor-patient dynamic can be incredibly problematic.
I love that you mention the power dynamic between doctors and patients. We do put doctors on a pedestal because of their education. We’re supposed to automatically trust their judgment about our bodies because they’re so highly educated. Do you feel like you’re now in a position to advocate for yourself at the doctor? If so, how did you get to that place?
Yes, I did reach a point [where I learned to advocate for myself], particularly when I was working in the healthcare system, had regular access to medical journals, and was trying to get to the bottom of this mysterious thing I had going on. When I was really embedded in the healthcare system, I started getting a much broader understanding of how it works within the entire hierarchy. We focus a lot on the clinical encounter, like what it’s like in the exam room or what it’s like in the emergency room. But when I had that job, I started to appreciate what the whole dynamic was, even between doctors and the whole healthcare system, where the administrative hierarchy comes in. By osmosis, I got a certain degree of medical knowledge just because I was surrounded by it all the time.
I started to understand the importance and sensitivity of medical terminology, which is a very specific language. Doctors like things to be very specific, so they can make these very strong delineations between [illnesses]. I’m a science writer, so I also have an inherent appreciation for clear, factual, and research-based evidence. But it was so much more complicated than that when I had to accept that I, and my body, was the primary source for that evidence. I could trust my perception of my body. I’ve lived in my body my whole life. I’d been a dancer, so I have a particularly interesting relationship with pain.
People who are dancers, athletes, or use their bodies in a physical way have this sick sense about pain. I had one ankle that was bad and caused me problems, and I could always feel something was wrong before I actually felt the pain. I had a particular understanding of what my pain limits were because I had this baseline experience. But in that power dynamic, I wasn’t expected to be the expert because the doctor is always the ultimate expert. It was downright unacceptable when I tried to assert that I might have information that was relevant, or I wanted to ask for a clarification, or I wanted to reject something they were offering me. Those instances would not only impact my ongoing relationship with that doctor, but would end up in my medical record.
So from then on, any other doctor who treated me or saw me would have that knowledge of me, and that would inform the treatment I received. After one encounter in an emergency room, one doctor wrote a little note that said, “She’s anxious and fearful. She was actually crying.” It was a warning to the next doctor. I had no idea that doctors were creating these narratives about patients, and that doctors were being informed by that before patients ever have a chance to express their symptoms. How could I ever defend myself against that? Who’s the doctor going to listen to: me or another doctor? I’m living in that pain every day, but in the context of this doctor-patient relationship, doctors are going to make up their minds about me because they’re listening to somebody who has the same level of education as they do.
One of the things that was really striking in your book is that endometriosis allegedly impacts one in 10 women, or 176 million women around the world, but we don’t know much about illness itself. There are only 1,800 pages of results on PubMed compared to 30,000 returns for liver disease. Why is that? Is it just that doctors have accepted gynecologist John Sampson’s explanation for endometriosis?
I’m so glad that you’ve asked that. I wish I could’ve spent more time on Sampson’s definition of endometriosis, why we talk about it the way we do, and why it’s characterized the way it is. The Endometriosis Foundation has a patient’s day coming up, and I’m really excited that I get to talk more about this there because the history of the characterization of this disease says a lot about women’s health. John Sampson’s theory of endometriosis really took hold in the 1920s, but he’d been working on it for a long time prior to that. Between the 1880s and when his theory really took hold in the early 1920s, there were several other theories about endometriosis that are really more reflective of the accurate theories that we have today about what endometrial lesions look like microscopically and the ways in which they’re not identical to uterine tissue. The comparison of uterine tissue and endometrial lesions isn’t medically accurate, but is still the WebMD description that everyone uses when we discuss endometriosis.
Sampson’s theory of retrograde menstruation has persisted this long because it’s the easiest one to understand. It’s the easiest one for doctors to tell patients because it doesn’t require them to use any complex biological explanations. It doesn’t require any real mention of microscopy. It doesn’t involve any of that, and it will almost always placate the patient. If you tell patients that they have endometriosis because there’s backwash from menstruation, it shuts the conversation down because they think they’ve explained it all. Over the last century, there have been many other researchers who challenged Sampson’s theory by looking at endometrial tissue microscopically, but Sampson’s theory is still the easiest one to explain.
Abby Norman tweeting about endometriosis (Photo credit: AbbyMNorman/Twitter)
Not knowing what a “normal” menstrual cycle looks like is a big reason why there hasn’t been enough evidence to thoroughly refute [Sampson’s theory] and get it out of the clinical and research settings. There’s no research money or investment in studying women’s reproductive health in the way we research illnesses that impact men. On a fundamental, clinical level, it costs more money to do studies on women or anyone who has a female hormonal cycle that ends in a period. You have fluctuating hormones and the interplay of estrogen, and the hormonal cycle will prolong the clinical trial if you’re trying to study the effect of a drug or test a treatment. It will be more likely that researchers will have to make more allowances while constructing that trial, which is going to require more time, money, and research. You’re probably going to have to screen a much wider body of potential candidates, but if you just use men who don’t have fluctuating hormonal cycles, you can conduct the trial in half the time for half the money.
It wasn’t until the mid ’90s that there was a mandate for women to be included in clinical trials. You couldn’t exclude women just because they menstruate because medicine was being given to women that wasn’t tested on women and it was causing adverse side effects. You can’t do that anymore. But prior to that, the only women in clinical trials would either be for athletes who had been on testerone for many years, and they were hormonally equal, or women who were completely stable hormonally. I can understand how it persisted for years and years like that.
You write extensively about endometriosis often being seen as a white woman’s disease because people aren’t considering access to healthcare when they’re doing studies about endometriosis. How can we use endometriosis as a lens for this bigger conversation about who gets access to healthcare?
It’s incredibly important. I’m always so infuriated because we’re still seeing endometriosis characterized as primarily a white woman’s disease. I was just on one of those medical websites that are supposed to be consumer friendly and even their description says that endometriosis is something you typically see among white women in their mid-30s. That is so far from the truth. We need to really look at who’s accessing reproductive healthcare and how we erroneously link endometriosis to infertility. This is correlation versus causation. I think a healthy dose of skepticism about statistics is always a good idea, and that’s particularly true when considering how diseases of reproductive systems have been categorized. If somebody is trying to get pregnant and they’re unable to do so, they’re going to be accessing general medical care as well as reproductive health specialists. They may be consulting some very specific fertility specialists and surgeons. These are the people who will find endometriosis if they have it because they’re in the right place and among the right people.
Yet fertility is often prioritized over the other things that endometriosis may cause in someone’s life—like being in excruciating chronic pain. Trying to say that fertility should be someone’s priority definitely comes as a result of this correlation between infertility and the diagnosis of endometriosis. Of the population who have these symptoms, who’s going to get to a doctor who will open them up and see it? If you’re just going to the gynecologist or a public clinic and having an ultrasound, you’re not going to see endometriosis because it’s physiologically normal tissue. It’s not going to show up on an ultrasound. You have to have a surgeon open you up, and even then, sometimes, it can’t be confirmed without a biopsy.
Those are the types of things that only a very specialized surgeon is going to do. It’s an issue with layers of privilege through the extent to which you have the very baseline ability to access a primary care doctor who has the time to see you, listen to you, pay attention to what you’re saying your symptoms are, and then pass the baton to a reproductive health specialist. Is that something your insurance is going to cover? Are you on Medicaid? Do you have insurance at all? If you have insurance, will the specialist take it or insist that you pay out-of-pocket? There’s also the question of where you’re living and what kind of access you have. If you live in a rural community, the nearest reproductive health surgeon might be states away from you. Do you have the means to take the time off from work to go there for a consultation? Do you have the ability to take short-term disability? Do you have anybody to watch your kids?
Actress Padma Lakshmi, cofounder of the Endometriosis Foundation of America (Photo credit: U.S. Embassy New Delhi/Flickr/2.0)
When you start thinking about the wide range of experiences that dictate somebody’s ability to get access to quality healthcare, it seems really obvious that there’s no way this could only be a white woman’s disease. I’m very aware of the fact that even though I had economic challenges that prevented me from getting access to the proper care, the fact that I was white certainly helped. Once you start looking at all of the factors that come between somebody getting a diagnosis, let alone getting treatment or anything that will alleviate symptoms, it becomes a broader issue. I hope that telling my story and publishing my book will create space for people to come forward and say, “Yes, this happened to me. Here are the things that I’ve faced, and I want access to this conversation.”
I want it to be a snowball that keeps going because I’m not a case study or a poster child for this issue. We’re in a time where we’re trying to have conversations about a lot of issues, and I’m always concerned about what will happen when we get tired of having these conversations? How do we keep the conversation going in those moments? That’s where I felt like having something tangible, like a book, could reinvigorate the conversation when everybody’s tired and feeling frustrated. If people see parts of their experience reflected, and feel empowered enough and supported enough, there will also be people who are going to listen to them, advocate for them, and create a much broader and inclusive narrative. Outside of science, one of the things that endometriosis advocates really lack is a clinical narrative or textbook case of the disease. We don’t have a clinical picture, and the one that we have [from John Sampson] is far from the truth, but we’re in this really unique place where we can work to create a clinical portrait that’s diverse and heavily considers these different factors that influence how we characterize the condition.
It’s interesting that a lot of celebrities, like Lena Dunham and Padma Lakshmi, are becoming the face of endometriosis. How can celebrities best use their fame, wealth, and access to make more people with wombs aware of endometriosis?
I think about this a lot. I’m always grateful when I see famous people who have millions of followers on social media and the opportunity to be apart of big events, like the Emmys, publicly take a stand about endometriosis. I’m grateful that “endometriosis” pops up in their conversations because there might be a teenager going through that famous person’s Instagram feed who will see that word for that first time and get some sort of answer much sooner than I had it. I’m also very aware of the fact that people who are at that level of celebrity have great access to resources and healthcare, and they don’t have to think too hard about financial strain, taking six months off to recuperate from a surgery, or even seeing a doctor who’s on the other side of the country or in another country. It’s certainly affirming and validating to see celebrities advocating for these issues, raising awareness, and saying I have this too and I know how much pain you’re in, but they should also be transparent about having access to a higher level of care, specialty, and treatment.
They have cooks. They don’t have to raise children alone. They can pay for a $50,000 treatment without thinking about it. They have an amount of notoriety because they’re famous, so they’re able to connect to the right doctor. I don’t believe in telling women what to do and not do with their bodies, particularly when they have this much pain and are this sick. I also think that people at that level must be transparent because there are certainly many people who are really struggling with this. I’m happy they’re talking about it and are using their platform to raise awareness, but I’m also frustrated because sometimes I think, What if I had that much money? Would I be in less pain? Since there’s no good treatment for endometriosis, there’s no amount of money that can ease the pain, but money provides so many other opportunities to make quality of life better.