There is a world of poorly understood chronic illnesses of which only the afflicted themselves have an intimate knowledge. My journey into this world began with a possible viral infection in January 2013. I was sick for about two months and things have never been the same since. Many of the symptoms I experienced during that first bout of illness kept returning with any type of physical stressor. My tolerance for physical stressors has declined year after year. Five years into my journey, I received a diagnosis of Hashimoto’s disease, an autoimmune disorder targeting the thyroid. Yet it came with very little help or respite. Some women with Hashimoto’s feel well once they start thyroid hormone replacement. This was not the case for me. Doctors I saw after this diagnosis were convinced that Hashimoto’s syndrome was not responsible for my symptoms, but they were at the same time quite reluctant to look further because they saw me as a “problem patient” who would not stop complaining about her symptoms. While some medical practitioners outright said that “it was all in my head,” others implied it with their skeptical looks. After another five years of enduring consistently worsening symptoms, I noticed that my condition was very similar to long Covid. This observation prompted a physician to think of POTS (Postural Orthostatic Tachycardia Syndrome)—a condition many long Covid patients have been diagnosed with. The tilt table test confirmed that I had the condition.
Mystery Illnesses
My story is not an outlier; it is a common one among women suffering from chronic illnesses. ‘Is it all in my head?’ many women have been asking themselves. The afflicted scream to be heard and understood, and yet their symptoms are treated as mysterious, and their voices are delegitimized and silenced. The more I explored this world after having the misfortune of becoming an insider almost a decade ago, the clearer it became that it was mostly populated by women. How could this be? Was it the inherent “mystery of women” that provoked such complex illnesses? Or could it be that since women have been historically marginalized, mysticized, and dismissed as patients that we know very little about their ailments?
Don’t be misled by the “mystery” designation. These conditions are increasingly common among women, and they often are comorbid. The mystery conditions might be autoimmune disorders, chronic fatigue syndrome (CFS), mast cell activation syndrome, Ehler-Danlos syndrome, dysautonomia, POTS, and long COVID—a recent addition to the list. One experiences an overall feeling of unwellness characterized by seemingly mundane, harmless, and disconnected but at the same time debilitating symptoms. One looks “great” to an eye untrained in disabilities while feeling miserable from head to toe. The symptoms can range from gastrointestinal issues such as malabsorption, nausea, and diarrhea, to migraines, dizziness, extreme fatigue, chronic pain, exercise intolerance, rashes, and so on.
These conditions are mostly characterized by flare-ups, meaning that one can feel relatively well for a period of time with their symptoms less pronounced, and then have periods where the symptoms significantly worsen. One deep down knows that they are all connected and desperately tries to convince those around them about their predicament.
Medicine has a long-standing and persistent problem of failing to listen to, diagnose, and treat women properly. This normalized and sedimented practice does not receive enough attention despite hurting women deeply. Medical practitioners are often too quick to conclude that their female patients are suffering from “stress,” or some “psychological problems.” The “hysteria” of the nineteenth century seems to have found its way into contemporary physicians’ practice under the guise of “psychosomatic,” or “medically unexplained symptoms,” yet the underlying attitude is still the same: ‘it is all in their heads!’
Is Medicine an Exact Science?
Medicine is not an exact science and there is a lot we do not know about the constitution and workings of human biology, physiology, and psychology. Hence, practicing medicine requires a great deal of epistemic humility. Unfortunately, medical training and the cultural norms in medicine cultivate the opposite so often. Contemporary medical practice does not welcome uncertainty, ambiguity, or failure. Perhaps this is why medical practitioners rush to a “psychosomatic” diagnosis when the patient “looks fine” and their blood tests are “normal.”
The main diagnostic tool in medicine once was listening to and examining the patient. In recent decades, advances in technology shifted the focus from the patient to laboratory testing which is considered to provide “objective” information about the patient’s health. The new motto is “If you can’t measure it then it doesn’t exist.” Over-reliance on blood tests creates the dangerous implication that “normal” blood test results attest to the health of patients and can be the reason for physicians prematurely concluding clinical inquiry. Most of the time, this process results in the physician’s judgment that the condition is mental or is “all in your head.” Many conditions, such as fibromyalgia, endometriosis, CFS, and POTS are not detectable by blood work at all. Some others, especially autoimmune conditions such as Hashimoto’s and Lupus require a specific blood test to be detected. The physician would need to suspect a particular condition to order the specific blood test that would confirm or rule out a diagnosis. While several of these conditions will lead to increased inflammation markers in later stages which will show in regular blood tests, many patients spend months and even years trying to find a physician who will take them seriously enough to inquire further into the reasons for the high inflammation markers.
Research shows that it takes a person an average of 4.6 years and 4.8 doctors to get diagnosed with an autoimmune disorder. While the average for diagnostic delay in POTS is 5 years and 11 months, some people suffer for decades until they are properly diagnosed. Despite the challenges in diagnosing these conditions, there is one factor that is associated with shorter diagnostic delay: being a man. Review studies on conditions that primarily affect women such as lupus, celiac disease, and POTS repeatedly show that being a female is associated with longer diagnostic delays. While the complex etiology of these conditions may account for overall diagnostic delays, it fails to explain the gender gap. As singer Halsey’s lived experience of delayed diagnosis attests, even fame and wealth are not able to counter the gendered stereotypes rooted in medicine.
Sometimes, more than the illness itself, the major source of frustration in undiagnosed chronic illness is the catch-22. The irony is that the same set of behaviors that gets the average patient a psychosomatic diagnosis is used as supporting evidence for the diagnosis itself. Having been to many doctors with the same complaints, for example, is a factor for a psychosomatic diagnosis. Yet, what is more reasonable than a patient seeking a second (third, fourth, fifth,…) opinion when they believe they have a health condition and are instead having their lived experiences dismissed repeatedly? Additionally, being “aggressive” towards the healthcare practitioner, and to their diagnosis and advice, is considered to be supporting evidence for such a diagnosis. Given the time and number of doctor visits it takes to get an autoimmune diagnosis one can easily understand why these patients might be frustrated and critical of their diagnosis. The process of visiting multiple doctors and receiving skeptical looks and insulting commentary when your health is deteriorating and the institutions who are supposed to help you heal do not believe you, may eventually result in depression and anxiety.
Sexism in Scientific Research and Medical Practice
Developing a deeper understanding of the entrenched institutional and structural sexist biases in the practice of scientific research and medicine is required to understand why women’s symptoms are easily dismissed—why it is so easy to tell women that it is all in their heads. Scientific research has mostly focused on male subjects and has a much better understanding of the male body compared to the female body. Most scientific studies have been done on male animals and the justification for excluding female animals is the difficulty of adjusting the study based on the hormonal cycles females go through (the hormonal women stereotype).
Indeed, the study of male animals was the default unless one was researching a topic specific to reproductive behavior until 2016, when the NIH implemented a “Sex as a Biological Variable” policy. This policy required scientists to factor sex differences into their research by using subjects (human or animal) of both sexes to be eligible for funding. The policy has received some backlash because some thought the female hormonal cycle would lead to unreliable data. In an interview, scientist Rebecca Shansky finds this concern disingenuous, because male subjects also have hormonal changes. Yet, since scientists have been studying them since the dawn of scientific research, these hormonal dynamics are not considered as a variable but rather treated as a given.
The sexist belief about women’s complexity and men’s simplicity is ingrained in every level of societal structures and institutions—from relationship advice to scientific research—where it is almost accepted as an indisputable fact. As a result, we have few mainstream hermeneutical resources to understand conditions mostly or only affecting women. Think of it this way: imagine science and medicine suspend studying the male body for a couple of decades or even a century (No more study of erectile enhancement! Gasp!!) and concentrate all their resources and energies on the female body. This is what we would need to catch up with the amount of knowledge we have about the male body. Studies on trans people, moreover, are close to non-existent. Specifically, there is an urgent need for populating studies that look into different phases of transition.
Epistemic Injustice in Medicine
Imagine what we might know if we had studied female subjects and these conditions as much as we studied the male subject. Overall, this is an issue of epistemic injustice that deeply affects women, non-binary, and trans people. Using Miranda Fricker’s framework of epistemic injustice, we see that women, non-binary, and trans people are exposed to both testimonial injustice and hermeneutical injustice. When a woman’s testimony of her own lived experience with respect to her symptoms is not taken as credible, she experiences testimonial injustice. By rendering one’s embodied experiences unreliable, testimonial injustice radically disrupts one’s connection to their lived world.
As such, this testimonial injustice also instigates a series of phenomenological harms. Doubting one’s lived experience of illness, compounded with the suspicion from friends and family one no longer feels like they are standing on stable ground. From the pointed remarks from a friend that I was listening to my body too much—implying that I should not—to my mom’s firm belief that my health would magically improve if only I had a baby, I felt constantly under siege of disbelief and disapproval from my close environment. I watched the harms created by epistemic injustice in medicine slowly permeating and coloring my whole lived experience.
Hermeneutical injustice occurs in two distinct ways in this context. First, since medicine as an institution does not have the concepts to describe many of women’s health conditions or help women understand their own experiences of illness, women’s experiences get marginalized and rendered unintelligible. Second, being socialized to fully trust the medical authorities, women are not able to describe the dismissal of their symptoms as medical gaslighting. However, as Kristie Dotson observes, marginalized communities create a myriad of hermeneutical resources to counter the existing gaps in mainstream hermeneutical discourses.
Marginalized Hermeneutical Resources
The ableist culture dumps the challenge and burden of explaining the experience of chronic illness on the shoulders of the afflicted. Left to their own devices, women have been creating enormous amounts of invaluable hermeneutical resources documenting their experiences and struggles to help other people going through similar conditions. Meghan O’Rourke’s Invisible Kingdom, Abby Norman’s Ask Me About My Uterus, Ilana Jacqueline’s Surviving and Thriving with an Invisible Chronic Illness, Bethany Stahl’s Endometriosis: it’s not in your head, it’s in your pelvis, and Tessa Miller’s What Doesn’t Kill You are only a few examples of these resources. Some of these resources, such as Cynthia Li’s Brave New Medicine are accounts of medical professionals who became the type of patient they previously dismissed as psychosomatic. These resources show us that there is readily available evidence for medicine to recognize and make sense of such conditions. However, that would require reliance on women’s testimonies. As Ezgi Sertler skillfully shows, not relying on testimonies of people who can call our attention to the aspects of the world that we are not aware of comes with grave epistemic consequences.
Women also created concepts such as “the spoon theory” to explain their “invisible” symptoms like pain and fatigue to friends and family. Created by Christine Miserandino, the spoon theory is a brilliant metaphor that illustrates how a chronically ill person—a spoonie—has to navigate having a limited number of spoons on the table, in other words, limited physical and mental energy to spend every day. After its publication as a blog post, the theory resonated so strongly with people with chronic illness and garnered so much attention that many people started to identify as spoonies and to connect on social media as #spoonies. The theory even made it to some webpages of prominent healthcare institutions.
The hardest thing to explain about chronic illness is the “chronic” part. This is where the spoon theory came in very handy for me. In my interactions with friends, family, and institutions, I struggled with the expectation that my condition improves or abates in time. While the course of a chronic illness is different for everyone, chronic illness is usually marked by continuity of symptoms with ups and downs. In my own journey, I have had to redesign my whole life and make difficult decisions in order to prioritize my health and well-being. The spoon theory provided me with invaluable tools to do that. To give an example, when I do not even have the energy to explain why I cannot attend an event, I simply send a link to Miserandino’s blog post with a note that says “out of spoons.”
More research into these conditions necessarily will produce more treatment and management options. Yet, what is more urgent right now is believing in these patients and recognizing their symptoms as valid. As O’Rourke writes in Invisible Kingdom, the afflicted “… crave a diagnosis because it is a form of understanding.” While receiving recognition for one’s illness is a basic human right, a diagnosis also entitles the patient to certain accommodations. Given the challenges in disability access, not having a medically accepted diagnosis immediately disqualifies the patient from any form of accommodations.
The world of chronic illness can be lonely, scary, and frustrating. Knowing that there are so many women out there running from one specialist to another, first to get a diagnosis and then to manage their conditions breaks my heart. With the absence of a centralized care option, these patients get exhausted trying to get some answers. The complexity of these conditions requires a concerted effort that includes a wide variety of medical specialties (i.e.; immunology, rheumatology, cardiology, neurology, etc.) to work together. As we are waiting for these changes to happen, scientific and medical communities could practice some epistemic humility and trust the existing hermeneutical resources created by the afflicted to better understand and manage these conditions. So, if you are one of those women I would like you to know the following: It is not all in your head and I believe you. Keep asking for whatever you need to feel better and live your life in dignity because you deserve it.
Deniz Durmuş
Deniz Durmuş is an Associate Professor of Philosophy at John Carroll University. Her research lies at the intersection of feminist philosophies, phenomenology, existentialism, and philosophy of medicine. She has published in academic journals such as Comparative and Continental Philosophy, Simone de Beauvoir Studies, and Philosophies.
