INVISIBLE

Part memoir and part sociomedical inquiry, veteran journalist Hirsch’s first book explores the many physical and emotional challenges faced by young women confronted with serious illnesses.

Inspired by her own experiences, the author focuses largely on younger women beset by significant maladies. Struck in her 20s by a daunting combination of hip surgery, thyroid cancer, Lyme disease, mast-cell activation syndrome—a rare autoimmune condition that can throw one inexplicably into anaphylactic shock—plus having witnessed her father, who suffered from multiple sclerosis, take his own life, Hirsch wonders if she is should view herself as a person having a disability, or rather "just all these weird, hard health things woven together.” In this well-researched account, which includes interviews with a number of women struggling with but refusing to be diminished by cancer, HIV, MS, and other diseases, the author notes the additional pressure to appear “youthful and carefree” amid a health crisis. Such cultural expectations lead many young women fighting disease to feel “constantly masked,” especially when fearing rejection by peers and sexual partners and subjected to callous employers—e.g., one of Hirsch’s former editors told her, “I don’t want to hear about your cancer.” In addition to disturbing anecdotal evidence showing the medical profession’s historic discounting of women’s pain, the author cites a variety of statistics showing gross gender inequity in clinical trials, which study primarily male subjects. Hirsch points out that federal Food and Drug Administration guidelines from 1977 prevented childbearing-age women from even participating in drug trials—a ban that wasn’t lifted “until 1993.” Even though about half of those living with HIV are women, a 2016 report revealed they represented only 19 percent of those studied in clinical trials of HIV antiretroviral drugs, and women were also found to be “underrepresented” in “high-impact studies of non-sex-specific cancers.”

At a moment when women’s experiences in the workplace have come to the fore, Hirsch’s eye-opening study of gender-based disparity surrounding illness will hopefully help spawn a similar reckoning for women’s health.