book is to share this knowledge, so each of us does not have to conduct independent research about TSS in order to make decisions about our own bodies. There is much pressure to believe that the technoscientific is the future, but “new” is not always better, and, in this case, the unintended consequence of “new” can be death.
A Definition of Toxic Shock Syndrome
In order to understand the historical origins of tampon-related TSS, it is useful to begin with the clinical case definition of TSS put forth in February 1980 and established by the CDC. According to the CDC, a clinical case of TSS included a fever of 102 degrees or more, rash, desquamation (flaking, peeling skin), and hypotension (drop in blood pressure, dizziness). It also included the broad category of “multisystem involvement,” which encompasses three or more of the following: gastrointestinal distress (vomiting, diarrhea), muscular pain (creatine phosphokinase levels twice that of normal), mucous membrane issues (enlarged blood vessels within the eye, throat, or vagina), renal dysfunction (blood urea nitrogen or creatinine twice that of the normal level, without the presence of a urinary tract infection), liver dysfunction (serums twice that of normal), blood abnormalities (platelets less than 100,000/mm3), and central nervous system issues (disorientation). Lastly, tests for diseases such as measles and Rocky Mountain spotted fever had to be negative, and also negative throat, blood and cerebrospinal fluid cultures were necessary to eliminate other diseases with similar symptoms. The CDC also indicated that a TSS diagnosis of “probable” included five of the six categories, while “confirmed” included six of the six categories.4
This clinical definition fails to capture the materiality, suffering, and long-term effects for those who contracted it. Almost all cases start out with what appears to be the flu, with a fever, severe diarrhea, and vomiting. Most assume that they need rest and can sleep it off, only to find that they feel worse in the two to three days that follow. Personal blogs of women who contracted TSS describe a partner or close relative who insisted on taking them to the hospital, for at least a round of IV fluids. While there, the women, admitted as patients, were usually found to have very low blood pressure in the range of 70/40 and a high fever of 103 or 104 Fahrenheit. Molly, a blogger who contracted TSS in 2006 as a senior in high school, recalled horrible vomiting all day long and being so dizzy that she collapsed in the bathroom. She hallucinated and was unable to vocalize her need for help; after her mother took her to the physician, she was rushed to the hospital where she was diagnosed with TSS and treated with antibiotics, saline, and a plasma infusion. After being discharged, her hands and feet peeled like they had been sunburned.5 Michelle (age unknown) experienced TSS in 2007, and she recounted falling into a coma, needing kidney dialysis, and requiring a breathing tube. She bled from her eyes, and her feet and hands turned black and swollen as her organs shut down and limited circulation throughout her body. She emerged from the coma after a week and remained in the hospital, relearning how to do simple things such as getting dressed, feeding herself, and walking with a cane, which was a severe blow to her as a dancer. She also lost most of her hair, which grew back after about nine months. She returned to teach dance after a year, building up her strength to finally leap once again.6
Figure I.1. Peeling skin on the hands and feet is one hallmark symptom of TSS. Source: Public Health Image Library, ID #5119. Courtesy of the Centers for Disease Control.
These accounts are not meant to be voyeuristic or macabre, but to describe TSS in a more relatable manner. Though these are examples from two different women, TSS has been identified across the population, and it is somewhat of a misnomer to think of it as a specifically female ailment. It can present itself in children, men, and women who are not menstruating. Its etiology took a unique course when the overwhelming majority of cases at the outset were linked to tampon-using women. The toxin, a protein produced by the particular strain of Staphylococcus aureus responsible for tampon-related TSS, is specifically referred to as toxic shock syndrome toxin-1 (TSST-1). To further complicate things, there is also group A streptococcal TSS, though it is not associated with tampons. Throughout this book, I refer solely to tampon-related TSS, linked to Staphylococcus aureus.
Though TSS seemed to come out of nowhere, the bacterium S. aureus has many strains and is responsible for a variety of diseases, and about 20 percent of the general population carries S. aureus on the skin and in the nose. Named in 1884 for its yellow hued clusters, S. aureus produces a variety of ailments, including rashes, pimples, and boils.7 S. aureus has different relatives, some of which produce enterotoxins, harmful and toxic proteins specific to cells in the intestine and responsible for more serious bouts of food poisoning. Others create exotoxins, toxic materials secreted and released by the bacteria, which may travel throughout a person’s body. More recently methicillin-resistant Staphylococcus aureus (MRSA), currently known as the “super bug” contracted in hospital-like settings, has gained notoriety. S. aureus and its many bacterial derivatives can pack quite a punch in the realm of human diseases.
Tampon-related TSS is not contagious and is not an infection. It relies on multiple factors that come into play for a very small set of women. It is a complex process, difficult to understand, and impossible to condense into a sound bite or a quick public health announcement, though many scientists and public health advocates have attempted to do so over the years. Many scientists and research groups have examined TSS and TSST-1 and published results in academic journals that detail various elements of its etiology and microbiology, some of which conflict. It is not the goal of this book to list all of the scientists who have researched S. aureus or TSS and adjudicate their scientific accuracy, but rather I wish to shed light on how the vagaries and incongruities of scientific thinking influenced policy decisions that ultimately affected women. Significantly, the multiple variables related to the illness’s occurrence and a lack of definitive evidence detailing its exact pathway intensified the health crisis. There was no scientifically agreed-on understanding about how tampons specifically triggered TSS, though the most promising research was presented in the proceedings Toxic Shock Syndrome by the Institute of Medicine in 1982.8 Tampon-related TSS challenged essentialist notions of women’s bodies; not all women were the same and vaginal flora differed from woman to woman. Though menstrual periods and tampons were involved, a simple formula of “mix both and stir” was implausible to re-create TSS because it simply was not a reality that every menstruating woman using a tampon contracted TSS. It also challenged essentialist notions of technology as inert; tampons broke down, sloughed, and caused change within the vaginal ecosystem, becoming a variable in and of themselves. Scientific assumptions had to shift. Women were not monolithic and neither were the tampons that they used.
Overview
This book draws on many interdisciplinary fields and is primarily situated within studies of gender and technology, histories of women’s health and women’s health activism, and also related literature about the history of menstrual hygiene, which is more currently referred to as menstrual hygiene management or menstrual management.9 It intersects studies of technology and disease that examine relationships of medical practice to medical instruments and medical devices. It contributes to studies about technology and risk, and it looks at the relationship of injury to law.10 In addition, it relates to concepts of biological technologies—not necessarily in the sense of biotechnology and genetic engineering but that of technology interacting with biological systems.11 Policy studies of technology also address the relationships of scientific practice to government regulations, and how implementation of policy affects users and communities.12 All of these threads interlace to inform my interpretation of the techno-bacteriological health crisis of TSS, that is, an illness resulting from a biological and technological interface, and one not easily quelled through the usual medical courses of action. Though there are scientific discussions about TSS, and passing references to it in women’s health literature and self-help sources from the 1980s, Toxic Shock explores TSS from gendered, political, and science and technology studies perspectives in order to understand the history of this health crisis and its influence on the world in which we live.13
Calling tampon-related TSS a “health crisis” is purposeful,
