UW student Madison Eggerding held back tears as she told me stories of the women she has been interviewing for her senior thesis researching autoimmune diseases and their misdiagnoses.
“I have one case study I’ve gotten really close to. She has lupus; she is terminal,” Eggerding told me as we sat in the packed Starbucks in Suzzallo. “She is terminal because they didn’t diagnose her for six years.”
For six years. This echoed in my ears. I felt, “Wow” slip out of my mouth in an astonished whisper. This story Eggerding was sharing was one of resilience, despite the frustration and heartbreak that was undoubtedly paired with being misdiagnosed by medical professionals who would eventually tell her that what she has is killing her.
“She also is around college age,” Eggerding added. “She is actually going to nursing school despite all of this. Because she wants to [help].”
Eggerding’s experiences have made her want to help, too. This is where her research comes in.
Since she was 14, Eggerding, herself, had gone to doctor’s appointment after doctor’s appointment for symptoms nobody could diagnose. She was told she had an anxiety disorder, that she was stressed. The reality? She had something called Mast Cell Activation Syndrome (MCAS), an autoimmune disease, most likely caused by her celiac disease, which had gone undiagnosed for the first 18 years of her life.
“I had a lot of misdiagnoses,” Eggerding said. “And a lot by male doctors who assumed I was just stressed out.”
For women across the board, this instance is common. A pain or discomfort, a health concern, or even a question about her reproductive rights requires another trip to a doctor’s office; for many women, this means another occasion of being ignored, brushed aside, or discounted by medical professionals.
According to Dr. Nancy Kenney, who teaches psychobiology of women here at the UW, the disregard women experience in doctors’ offices is not an isolated instance. Not even close.
“Sadly this is a long historical point, where not just young women, but all women, have been assumed to be ignorant of their bodies, and in many cases incapable of understanding these serious complex issues anyway,” Kenney said. “And so, there’s always been a situation in which women have been treated rather paternalistically, even by female practitioners. But I mean, it’s better. I have to say, things are better today than they were in the past. But are they good? No.”
This assumed ignorance — the assumption that women have no clue what’s going on inside their bodies — is a harsh reality many women have had to endure as soon as they started going to doctors for issues beyond just checkups. Many people forget that components of society force women into doctors’ offices, even if they aren’t experiencing any health issues.
“Women, because of their needs for reproductive health and the fact that we need to go to a medical practitioner and get a prescription for contraceptives, we’re stuck! Guys don’t have to do that,” Kenney pointed out.
Women don’t have the option to get birth control over the counter, unless they want to rely on condoms, or Plan B One-Step after sex, for less than dependable results. If they want a reliable form of birth control that will protect them from pregnancy, they need to go to a doctor to get those contraceptives. This in itself automatically exposes women to more interactions with medical professionals, and likely reinforces the stereotypes that women complain more, are overactive about health concerns, and can even be ignorant about their bodies. In reality, for women to keep their bodies safe and well, doctors’ appointments are necessary and important.
However, it also means that when a woman does go to the doctor for a health concern, the physician may have this preconceived notion and assume that she is making a fuss about nothing, or acting irrationally.
This is where Eggerding really experienced the gap between female patients and their doctors.
“The doctors kind of gaslight you, if you’re a woman especially,” Eggerding said with passion. “Gaslighting is interesting because they don’t do it intentionally, but I think because of the biases that already exist in medicine and whatever they’re exposed to as an individual doctor … they’ll pathologize women with a mental health issue.”
Eggerding was misdiagnosed with an eating disorder before they discovered her celiac disease and MCAS. The fact that she was in too much pain to eat slipped by medical professionals for years before they found the true cause of what was making her lose weight.
It’s a common occurrence for women to be misdiagnosed with stress, depression, or anxiety as the main cause of their symptoms. As Kenney explained, this is a pattern rooted in the history of medicine and psychology.
Hysteria — a term used as early as in ancient Greece, but popularized by Freud — describes a psychological condition that, historically, only women could be diagnosed with. Hysteria would now be classified into other more specific disorders, such as schizophrenia, borderline personality disorder, conversion disorder, anxiety attacks, or a variety of other conditions which, for the record, are all disorders both men and women can be diagnosed with.
“I’m looking into [hysteria] because a lot of women who were diagnosed with it in the past actually ended up having autoimmune diseases,” Eggerding said.
She mentioned that multiple sclerosis, specifically, was an autoimmune disorder that was historically mistaken for hysteria.
This problematic surmise has popped through the medical bubble and has been brought to the forefront in pop culture for years. Sylvia Plath’s “The Bell Jar” focused on this problem in 1963. Her protagonist, Esther Greenwood, struggles to get the medical treatment she needs for her psychological symptoms, and is gaslit by medical professionals. In a Nylon article, Naomi Elias writes, “This is how ‘The Bell Jar’ exists in our cultural memory, as a kind of familiar word cloud where the most prominent word is ‘woman,’ and the second is ‘sad,’ with other nouns and adjectives like ‘outsider’ and ‘misunderstood’ filling out the rest of the cumulus.” This cultural memory has not changed in the 54 years since Plath’s novel was published, and we’re still having this conversation.
Is this never-ending conversation about women being taken care of in the health industry a result of Freudian theory, of his proclamation that a woman’s somatic symptoms are solely manifestations of her mind?
“I don’t know if [Freud] laid a framework, or if that’s a symptom of how women have never been taken seriously,” Kenney said.
Dr. Natacha Foo Kune, director of the counseling center at the UW, also weighed in on this question of Freud’s influence on this problem.
“I think, yes, a lot of our somatic symptoms, like the physical manifestations of problems, can have a psychological underpinning: stress and things like that,” Foo Kune admitted. “But, sometimes it does mean that we discount. And sometimes it’s kind of hard to separate the two.”
While mental health absolutely affects bodily symptoms, and can contribute to them in some instances, it can also be a “chicken and egg” situation. Being misdiagnosed can lead to stress, too. Also, the incapability of the medical industry to take women seriously cannot be separated from the position women take in society as a whole. Whether Freud laid a framework for women’s symptoms to be discounted or his framework was a result of already existing biases can’t fully be parsed out, but the problem here lies in the reality so many women still experience in 2017 every time they step into a doctor’s office.
Eggerding’s experiences left such a long-lasting impact on her that she decided more people needed to hear about this difficulty so many women deal with. Her senior thesis is geared toward exposing this issue.
“My thesis is actually a [quarterly] interdisciplinary magazine that I’m starting here at [the] UW,” Eggerding said. “So it’s going to be called Autoimmunity, and it’s specifically about autoimmune diseases and women. I’m not only going to focus on women, but the first issue is about women and how little there is actually known about autoimmune diseases.”
The first issue, according to Eggerding, will be “geared toward spreading awareness about autoimmune diseases and how people are so frequently left behind by the medical system.”
About 78 percent of the population with autoimmune diseases are women.
“On all aspects, when you get into the nitty gritty, you find that there are these gender inequalities that make you sit up and take notice when you pay attention to them,” Kenney said. “They are so ingrained in the system, though, that most people don’t pay any attention to them. It doesn’t even occur to them because it’s just the way it is.”
Reach Editor-in-Chief Rebecca Gross at firstname.lastname@example.org. Twitter: @becsgross