Mach 10 with Her Hair on Fire

MaryKate Wolken

---

Over the last 13 years, my mom went from a fast-moving and passionate high school teacher often described as “Mach 10 with her hair on fire” to a sometimes unrecognizable person, shuffling between bed and the couch in terrible pain. Mom, coach, teacher, wife, daughter, sister, friend – all these identities were renegotiated through the disease onset and diagnosis of lupus. That process alone was frustrating and long, as is common. At a certain point, life with her chronic and incurable illness became our new normal.

May is Lupus Awareness Month, and every May since 2011 marks another year since my mother’s diagnosis. Lupus is an autoimmune disease affecting approximately 1.5 million Americans. Ninety percent of those battling the disease are women, and symptoms usually start between ages 15 and 44 (between menarche and menopause).^[1] In other words, it’s a disease that generally appears in women of average reproductive age. While I focus on systemic lupus erythematosus (SLE) in this essay – the most common form of the disease and the one my mom battles – there are other forms of the disease, including cutaneous or discoid lupus.^[2]

After thirteen years of lupus, my family still experiences waves of grief and frustration. The disease has countless symptoms, and hers have yet to go into remission. It’s a balancing act to support someone who is chronically ill while not reducing them to their symptoms. It can also be tricky to tell whether it’s a rough day, a tough week, or a serious new issue. For us, there’s a telltale sign of an impending flare: her scalp will hurt so intensely that it feels like her hair is on fire. 

My mother’s diagnosis and illness shifted my world as a high school freshman and established a new sense of normal. It forced me to ponder the nature of health, medicine, and healthcare. Additionally, it allowed me to begin thinking about intersections of gender and health. That very intersection is at the heart of my research today as a historian.

In this article, I reflect on my experience with a loved one’s ongoing battle against an incurable disease and how my family has grappled with chronic illness at close proximity. However, to tell the full story of her disease onset and our family’s journey with it would take up a book-length memoir – and it’s not my story alone to tell. Instead, I place my narrative within the framework of the history of lupus and the gendered elements of chronic illness in the contemporary United States.

Lupus: Continuity and Change over Time

While our understanding of lupus has evolved since it was first named in 1851, certain elements have stayed consistent.^[3] For example, case studies from the late 1800s and early 1900s showcase symptoms of unexplained fevers, pain, fatigue, and the characteristic wolf/butterfly-like facial rash, which are still considered common symptoms of the disease today. In addition, doctors have long noted disproportionate numbers of female patients. In a 1911 report on “sarcoid tumors of the skin,” Dr. George Henry Fox and Dr. Udo J. Wile reported the “extremely interesting and inexplicable” number of female lupus patients.^[4] This clear acknowledgment of gender disparity in the disease was echoed by their colleagues in other reports.

Lupus was long considered solely a dermatologic issue. Then, nineteenth-century doctors noticed that it tended to appear with tuberculosis, leading some to wonder if lupus was actually a form of tuberculosis itself.^[5] Either way, the prognosis was poor.^[6] A 1949 article in the Bulletin of the Johns Hopkins Hospital explored lupus as a systemic disease, highlighting common patient symptoms of joint pain, fever, weakness and fatigue, weight loss and gastrointestinal disturbance, as well as fewer skin lesions/rashes. Despite this new approach, prognosis remained poor: “[Lupus] occurs predominantly in females in the age group from ten to thirty…of these thirty-two patients six were still living at the time of the last observation and twenty-six had died. The average duration of the disease from the onset of the first symptoms to death was four years and four months.”^[7] Notably, even as the medical field reconstructed its understanding of lupus and it was no longer exclusively under the purview of dermatologists, an acknowledgment of the disease’s poor prognosis and gender disparity remained constant.^[8]

Female lupus patients also face potential reproductive complications. In a separate article, Dr. Wile recounted the case of a woman who had always been healthy until the start of her skin disease that began with “itching in the left ear.” She denied any symptoms of tuberculosis. Married at twenty-one, she and her husband had six children, “four of whom are living…One child died at the age of four months, and the patient miscarried once in the seventh month of pregnancy.”^[9] I read this second case with today’s understanding of the increased risk of spontaneous abortions and preterm births in birthing people suffering from lupus. Researchers in the late twentieth century noted higher risks of spontaneous abortion and premature delivery as well as potential complications from oral contraceptives and intrauterine devices.

Awareness of lupus and research funding slowly grew in the 1970s and 1980s,^[10] resulting in new treatments,^[11] greater hope for survival, and improved quality of life for patients. A 2000 NIH report proposed to identify genetic and environmental causes of lupus while acknowledging a racialized gender disparity: “lupus is three times more common in African American women than in Caucasian women and is also more common in women of Hispanic, Asian, and Native American descent.”^[12] Researchers acknowledged the complexity and challenges of the disease but remained optimistic about a cure.^[13]

Chronic Illness, Gender, and the US Health System 

Lupus is just one disease in a much broader picture of gendered experiences of chronic health and pain conditions in the United States. Bearing witness to my mom’s illness and watching her negotiate her identity in the workforce, her family, and her community revealed so much about socioeconomic determinants of health, gender equity, and other interrelated cultural, political, and social issues.

Fibromyalgia, migraines, lupus, rheumatoid arthritis, and other conditions marked by pain are all more common in women.^[14] Women battling those and other conditions, such as endometriosis, share their frustration with how their pain and symptoms are systematically ignored, rejected, or minimized by their healthcare providers.^[15] Of course, the social and familial dynamics of gendered health and pain are yet another element of this conversation.^[16] Health and healthcare does not exist in a vacuum. While too much to explore in this article, I acknowledge these health experiences relate to gendered work and wage gaps, notions of care and worth, social value and inclusion, and more. Research on chronic illnesses and women’s health continues to stagnate, both related to funding and in having women in clinical trials or studies. Recent clinical and health equity work, alongside historical and critical disability scholarship,^[17] explores those disparities and suggests strategies to tackle core issues, inherently both medical and social.

Lupus diagnosis and treatment remain complex. There is still no single way to diagnose lupus, and the process needs regular access to specialist care. Treatment may be some combination of NSAIDs, corticosteroids, chemotherapy, lupus-specific drugs, and antimalarial drugs such as hydroxychloroquine (the Covid-19 pandemic prompted concerns of hydroxychloroquine shortages in 2020).  Even when women can afford to seek care and treatment, they are often in more pain and at worse stages of disease progress than male patients.

It is profoundly expensive to be unwell in America. Contemplating how preexisting conditions and chronic illness have been treated – or even covered – by the conjoined medical and insurance worlds is part of this story. In detailing my perspective, I need to acknowledge that my family is fortunate to have good health insurance.^[18] In the United States today, chronic illness is experienced in a place where the gendered wealth gap refuses to close and where healthcare has been and continues to be rationed according to wealth.^[19] I firmly believe it doesn’t have to be this way.

Conclusion

The conclusion of my mother’s story is happy, sad, and unresolved – like life with chronic illness. My mom was not expected to live to see my brother graduate high school, but she has seen that and more. The classroom is a little emptier without her passion and talent for education; still, she has found meaning in life with lupus. My dad, my brother, and I have learned lots about medicine, each other, and the care and kindness of others. Community is a powerful thing.

I became a health historian because of my intellectual interests and these experiences. History is the study of change over time and then why that change occurred; our individual perspectives inherently inform that work. As I investigate childbirth, midwives, and reproduction in nineteenth-century Spain, I search for women’s voices in legal cases and medical records. Likely inspired by my mom’s ongoing battle, I find myself looking beyond the patient to find the person and their untold or forgotten story.

Notes

1. This particular shorthand characterization, following conventions of the medical research cited, denotes people assigned female at birth. ↑
2. From this point on, I refer to SLE as “lupus” for readability and consistency. ↑
3. Daniel J. Wallace and Ivana Lyon, “Pierre Cazenave and the First Detailed Modern Description of Lupus Erythematosus,” Seminars in Arthritis and Rheumatism 28, no. 5 (April 1, 1999): 305–13,; Renaud Felten et al., “The History of Lupus throughout the Ages,” Journal of the American Academy of Dermatology 87, no. 6 (December 1, 2022): 1361–69. ↑
4. J George Henry Fox and Udo J. Wile, “Sarcoid Tumors of the Skin with Report of a Case of the Boeck Type “ Journal of Cutaneous Disease Including Syphilis, 29 (1911). Text reads: “an extremely interesting and inexplicable fact is the large predominance of women affected as against men; of the thirty-one cases (including our own) twenty-three were females…” (p. 286). ↑
5. Henry G. Piffard, M.D, “Lupus,” Journal of Cutaneous and Genito-Urinary Disease, c.1 v.9 (1891): 163. ↑
6. See studies, such as those in the Journal of Cutaneous Disease Including Syphilis (volume 9, 1891; volume 29, 1911, etc.); Jonathan Hutchinson, “On Lupus & Its Treatment,” British Medical Journal 1, no. 1009 (May 1, 1880): 650–52. ↑
7. Philip A. Tumulty and A. McGehee Harvey, “The Clinical Course of Disseminated Lupus Erythematosus, Bulletin of the Johns Hopkins Hospital, v. 85 (Baltimore: The Hospital, 1949): 51-53. ↑
8. Eli Hyman Rubin, The Lung As a Mirror of Systemic Disease. (Springfield, Ill.: Thomas), 1956: 115. Quote: The systemic nature of the disease altered its image, and a 1956 report noted “internists are gradually usurping this intriguing disease from dermatologists and adopting it as their own.” ↑
9. Udo J. Wile, “Wide-Spread Lupus Erythematosus With Associated Papulo-Necrotic Tuberculide,“ Journal of Cutaneous Disease Including Syphilis, 29 (1911): 288. Interestingly, the doctor notes that two of the surviving children “show unmistakable stigmata of inherited syphilis.” However, they do not discuss possible syphilis in the mother, who is the main patient. Rather, they focus on the clear diagnosis of “wide-spread lupus erythematosus of the face and head” as well as possible papulo-necrotic tuberculid(s) on the woman’s arm; the focus of the report was on the co-occurrence of lupus and tuberculosis. ↑
10. United States. Congress. Senate. Committee on the Judiciary. National Lupus Week: Report to Accompany H.J. Res. 682. [Washington: U.S. Govt. Print. Off., 1978. ↑
11. Current Clinical Studies and Patient Referral Procedures/the Clinical Center, 1972-81. [Bethesda, Md.]: U.S. Dept. of Health, Education, and Welfare, Public Health Service, National Institutes of Health. ↑
12. Systemic Lupus Erythematosus, 28. ↑
13. Systemic Lupus Erythematosus. Rev. February 2000. [Bethesda, Md.]: National Institutes of Health, National Institute of Arthritis and Musculoskeletal and Skin Diseases (2000): 4. “At present, there is no cure for lupus. However, lupus can be very successfully treated…Intense research is underway and scientists funded by the NIH are continuing to make great strides in understanding the disease, which may ultimately lead to a cure.” ↑
14. “Gendered Pain: A Call for Recognition and Health Equity,” Editorial: eClinicalMedicine – The Lancet Discovery Science, 69 (March 1, 2024); Linda LeResche, “Defining Gender Disparities in Pain Management,” Clinical Orthopaedics and Related Research 469, no. 7 (July 2011): 1871–77; Anke Samulowitz et al., “‘Brave Men’ and ‘Emotional Women’: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain,” Pain Research & Management 2018 (February 25, 2018): 6358624,; Jeffrey S. Mogil, “Qualitative Sex Differences in Pain Processing: Emerging Evidence of a Biased Literature,” Nature Reviews Neuroscience 21, no. 7 (July 2020): 353–65.. ↑
15. Jaipreet Virdi, “Demanding a Diagnosis for Invisible Pain,” Wellcome Collection, August 22, 2019, https://wellcomecollection.org/articles/XTg6VBAAACQAP5hQ; Abby Norman, Ask Me about My Uterus: A Quest to Make Doctors Believe in Women’s Pain (BoldType Books, 2018). ↑
16. Amelia Karraker and Kenzie Latham, “In Sickness and in Health? Physical Illness as a Risk Factor for Marital Dissolution in Later Life,” Journal of Health and Social Behavior 56, no. 3 (September 2015): 420–35. ↑
17. For initial reading, see Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America, 1st U.S. ed. ( Walker & Co.) 2013; Barry S. Levy and Victor W. Sidel, Social Injustice and Public Health: Social Injustice and Public Health, Social Injustice and Public Health ( Oxford University Press, 2013). ↑
18. Even with good insurance, there are nightmares. Years ago, when I was in high school, my mom was hospitalized with a significant internal bleed. Insurance initially refused to cover the entire hospitalization because – thanks to the quick and effective work of the medical team – she never lost consciousness and did not have to have a transfusion. My dad handled the seemingly-endless negotiations around coverage and bill settlement. ↑
19. Beatrix Hoffman, Health Care for Some: Rights and Rationing in the United States since 1930 (University of Chicago Press, 2012). ↑

---

Featured image by Alex Green.