That chronic Lyme exists in the realm of experience doesn’t mean it isn’t real: sorrow is real, tingling is real, tension headaches are real—and I can’t know if my patients have those things unless I ask them. When medicine does not acknowledge the reality of the subjective—the thick reality of lived experience—we fall laughably short in our efforts to serve patients. What is a life but experience, and why does illness matter except insofar as it affects the way we feel and the experiences we have or are denied?
Lidija Haas
began her review for
The New Yorker of Porochista Khakpour’s
Sick, a memoir of chronic Lyme, by asking “Is Lyme disease a feminist issue?” Haas describes how disease in women is painfully under-studied and how physician bias affects women’s health. The most famous case of this is multiple sclerosis (MS), an often-debilitating autoimmune disease that is more common in women. As Haas mentions, MS was essentially chalked up to hysteria until the invention of Magnetic Resonance Imaging (MRI), which allowed doctors to see the characteristic lesions in the brains and spines of patients with MS. When doctors could
see it, we designated it as real.
But MS was real before the MRI, and chronic Lyme is also real. It comprises a constellation of symptoms and a community of sufferers, too often attended to by unscrupulous providers. Insofar as the history of chronic Lyme is a history of physicians’ ignoring, downplaying, or refusing to investigate the symptoms of women, chronic Lyme is also a feminist issue.
Should women’s suffering be listened to, attended to, and investigated? Yes. Does our suffering deserve heroic efforts to develop and provide evidence-based therapies? Absolutely. But is our suffering caused by tick bites? Usually not.
