Sarah Evenson’s sociology thesis uses a patient-centered approach to study the diagnostic process of postural orthostatic tachycardia syndrome and myalgic encephalomyelitis, which is often known as chronic fatigue syndrome.
For people with postural orthostatic tachycardia syndrome, or POTS, dysfunction of the autonomic nervous system leads to an inability to properly regulate heart rate and other bodily functions. This can cause many symptoms, including dizziness, fatigue, and chest pain. People with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, have severe fatigue and difficulty with activities that require a high energy output. The symptoms associated with both of these illnesses can vary over time but often last for years or even a lifetime.
Instead of focusing on what causes these chronic illnesses and how they can be treated–questions that medical researchers are struggling to answer–Evenson’s thesis research began with listening to the experiences of people with POTS and ME/CFS. She first administered anonymous online surveys and spread the word on social media. She received 477 responses from around the world. She followed up with 59 respondents to do semi-structured interviews that lasted between 20 minutes and an hour and a half.
In the surveys and interviews, she heard that the medical community does not do enough to support people with these illnesses, especially when they are trying to receive a diagnosis. Healthcare professionals often openly disregard patients’ experiences, telling them their symptoms are “all in your head” or a result of depression and anxiety.
Within the broader chronic illness community, this disbelief of patients’ experiences by healthcare professionals has been termed “medical gaslighting” and can lead to people doubting their perceptions of their bodily experiences and prevent them from receiving the care they need.
“Individuals with POTS and ME/CFS are particularly vulnerable to experiencing medical gaslighting,” said Evenson, “given that the symptoms are subjective, that no routine tests show abnormal findings, that the symptoms in many ways mimic physical manifestations of psychiatric conditions such as depression, and that, in general, people living with these conditions do not ‘look sick.’”
While medical gaslighting is commonly discussed within the community of people living with POTS and ME/CFS, as well as the larger population of people living with chronic illnesses, academic research has all but ignored the phenomenon.
“The main contribution of my thesis research to other researchers and academics is the sociological definition of medical gaslighting,” said Evenson. “Gaslighting is an inherently sociological phenomenon but has only recently been taken seriously within the discipline… By putting forward a definition of medical gaslighting and describing some factors that lead to its occurrence, I have laid the groundwork for other scholars to examine the phenomenon and the impact it has on people’s lives. Eventually, I hope this work makes its way to clinicians so that real, meaningful change can be made within the system.”
Evenson’s thesis research has inspired her to dedicate her life to changing the American healthcare system so individuals with “atypical” presentations of illness receive the care they deserve.
After working as a bioethics research intern at the Mayo Clinic this summer, she will continue her studies at Penn in the fall. Evenson was part of Haverford’s 4+1 Bioethics Program. The program allows accepted Haverford students to begin their master’s of bioethics at the University of Pennsylvania during their junior or senior year and complete the program the year after graduating from Haverford.
What did you learn from working on your thesis?
In addition to learning about the difficulties people with chronic illnesses have navigating the healthcare system, my biggest takeaway from the project is that disability identity is incredibly complicated and is influenced by internalized ableism and experiences of medical gaslighting and ableist microaggressions. … Labeling oneself as disabled is a personal choice, and individuals should be given space to make that choice independently; some people may find it useful and empowering while others may find it constraining. Most individuals with POTS and ME/CFS meet the criteria of disability as outlined by the Americans with Disabilities Act (ADA), legally protecting them from discrimination and entitling them to accommodations in the workplace and public spaces. Interestingly, however, I found that many people who would be justified in claiming that label are not comfortable doing so because they do not feel “sick enough” or “disabled enough.” This comes from the combination of societal messages of what a disabled person looks and acts like, the assumption that they are “normal” because they “don’t look sick,” and the medical gaslighting they experience. There are many situations in which an accommodation would be helpful – say, sitting down on public transportation, or using a motorized cart in a grocery store – but people are uncomfortable asking for and taking what they need because they know they will be judged and questioned for doing so. Sometimes it is easier to deal with the physical repercussions than it is to deal with being seen as lazy, dramatic, or a liar. There is a lot of work that needs to be done within society to normalize chronic illness and disability. Doing this within the existing capitalist society will be incredibly difficult; a more immediate goal in service of this larger vision is eliminating medical gaslighting so that people can begin to feel comfortable asking for and receiving what they need.
How did you come to your major?
When I came to Haverford, I thought I was going to major in physics, with a concentration in biophysics, and then continue to medical school or a Ph.D. program in medical physics or biomedical engineering. As much as I enjoyed the STEM classes I was taking, I felt like something was missing and I had no idea what that might be. The AMA [Ambassador of Multicultural Affairs] from my Customs hall encouraged me to take a sociology class. At the time, I had no idea what sociology even was, but I decided to give it a try. Over the course of my sophomore year as I took “Foundations in Social Theory,” I began to realize that sociology offered me a way to stay engaged with the aspects of medical science that I found so interesting while also thinking critically about how that science and the systems that use it impact people in their everyday lives. That’s what I was missing – the human factor. Being at Haverford, I was able to continue taking STEM classes and even work in a lab while majoring in sociology; something that likely would have been difficult had I been anywhere else.
“What They Learned” is a blog series exploring the thesis work of recent graduates.