by Miranda Le
When I first began working for the Chemical Entanglements project, I was concurrently taking a class on medical anthropology. I learned about the biomedical model of medicine that the US healthcare system abides by. Biomedicine is heavily centered around the body; the disabilities and diseases that our society deems most valid are the ones that can be seen by others. The experiences that do not fall within the sphere of biomedicine are cast out by our healthcare system and subsequently, our society.
In general, the traditional patient-physician encounter is a transaction: the patient describes their illness experience to the physician, and the physician assigns a diagnosis and prescribes subsequent treatment. This seems familiar enough to most of us, but what we often forget are the layers of privilege that make this transaction possible. For one, a patient must be able to have the financial means to afford the cost of treatment. But just as important, the patient’s illness must be one that falls within the biomedical context. And finally, the patient’s concerns must be acknowledged and respected by the physician. Patients with multiple chemical sensitivities (MCS) and other environmental illnesses, among which women are disproportionately represented, often lack one or all of these privileges, and therefore are denied the benefits the patient-physician encounter would bring.
I carried this knowledge with me as I delved into the intricacies of the interviews CSW had collected. As part of the undergraduate research group, we read transcripts from interviews of people with MCS and discussed the patterns that we observed. I quickly began to realize that oral histories are powerful tools of advocacy in several ways. On one hand, oral histories serve to elevate the voices of the women who are disproportionately affected by MCS and to call for change from people in power. Instead of reducing a person down to their illness, they capture full life experiences. On another level, oral histories also highlight themes that are common among these women, giving them a platform where they can feel validation through each other’s experiences.
The root issue we are analyzing in the Chemical Entanglements project is the historically excessive amount of toxic exposure that women have had to and continue to endure. The Center for the Study of Women takes it a step further by considering how these gendered patterns of exposure impact other factors that make up the MCS experience. By using cross-disciplinary methods of research paired with discussions of intersectionality, the Chemical Entanglements project is able to encapsulate the struggles that women with MCS face, while providing lawmakers, scientists, and other people in positions of power with the considerations necessary to eliminate gendered chemical exposure.
One thing that was apparent in almost every interview was that patients with MCS do not receive proper medical care. Since there is no biomedical cure for MCS, physicians often misdiagnose or fail to diagnose MCS. This was a shock for me. As a student pursuing a career in healthcare, I had always been focused on provision of care, but I failed to look beyond the restricted bubble of our healthcare system. I was learning through medical anthropology that the diagnosis given by a doctor is a mark of validation. Giving a name to a patient’s condition affirms that the physician understands their condition and that there are others who have had similar experiences of suffering.
But MCS does not fall within the standard knowledge of most physicians. For example, S.T. recalls, “I’m having this chemical sensitivity issue and I need some help trying to figure things out. But the doctor did not want to come in because she was like, ‘I have no idea what to do with this person.’” Many physicians do not seem to recognize that just because they cannot come up with a diagnosis does not mean that an illness does not exist. This increases the burden of MCS experienced by the individual, since the institutions of health in our society offer nothing to alleviate their symptoms. Patients with MCS not only experience physical neglect due to the lack of available treatments for MCS, but they also experience symbolic neglect due to the lack of a diagnosis.
Furthermore, the fact that MCS patients are mostly women exacerbates this suffering. Most of our interviewees expressed their frustrations with the fact that their illness experiences are often downplayed or dismissed by doctors, who may hold implicit biases towards concerns made by women. These women reach out to physicians for someone to validate their suffering, but not finding someone who understands what they’re experiencing can negatively affect their mental health. On top of that, the lack of psychological and social support can worsen the symptoms of chronic illness. Women with MCS are often not taken seriously and are therefore denied proper medical care.
The failure of the biomedical system is even more apparent in the fact that women with MCS often have to shoulder the burden of their own care. Many women interviewed by CSW have discussed the ways in which they have dealt with MCS, including how they have built online communities and organized advocacy efforts. By participating in the MCS Awareness Movement, S.J. explains to us, “It’s reassuring to search community groups on Facebook just to read other people’s experiences and know that I’m not crazy.” It is truly inspiring to see how strong these women are, rising above their conditions and uplifting one another through a common experience. On the other hand, it is disappointing that they are forced into these positions, with the need to overcome the structural inequalities of our healthcare system for the sake of survival.
As my worldview expanded, I thought about all of the ways in which women with MCS might be cast aside by society. What about the women who can’t afford treatment in the first place? What about the ones who don’t have the means to advocate for their health? What about the ones who don’t get to tell us their stories? I could have been easily overwhelmed and discouraged by the sheer amount of lives that have been affected by MCS, but my co-researchers pointed out something important about our project. By sharing their stories and increasing awareness about MCS, we were taking the first steps to uplift women with MCS towards improved health and a better future.
Ultimately, I hope that the Chemical Entanglements Project will be a powerful message to scientists and policymakers to enact effective care and policy for women with MCS. But I also hope that the oral histories will provide a sense of community and acceptance to all those with MCS, regardless of privilege. By listening to their stories and elevating their voices, CSW’s Chemical Entanglements project calls for justice on behalf of women and marginalized communities affected by gendered chemical exposures.
Miranda Le is a UCLA Undergraduate Student studying Human Biology and Society. She is a member of the 2019-2020 Chemical Entanglements Undergraduate Student Research Group.