How Young Women with Serious Health Issues Navigate Work, Relationships, and thePressure to Seem Just Fine
January 1, 2018
Hirsch, plagued by a variety of medical issues—Lyme disease, thyroid cancer, and mast-cell-activation syndrome, among other problems—starting in her early 20s, decided to seek out other young women going through the same experience of facing life-changing medical problems. Her project unearthed significant differences in how women reacted to being diagnosed with serious health conditions, the subject of her informative debut book. Interspersing her own story with those of the women she interviewed and with the results of research studies, she recounts stories of discrimination and misunderstanding, particularly since, she writes, many of her interviewees suffer from conditions that aren’t always outwardly visible and doctors tend to underestimate women’s symptoms. Some women choose to keep their struggle secret, while others fight tenaciously to avoid being defined by illness, or they publicly “challenge the popular rhetoric” around their disease. Hirsch found that, as she does, her interviewees feel “off time—out of sync with what they were taught it means to be young.” Through her discussions with other women who also have conditions that are not easily categorized, she realized that “disability is largely about the world’s failure to make space for you.” It is an untapped, niche area for advice that Hirsch covers with relatability, grace, and empathy.
February 1, 2018
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.
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Starred review from November 1, 2018
Health and womanhood are put under a critical lens in this debut by journalist Hirsch, which examines the pressures women face when told they're "too young" to be sick, and the isolation they feel while being out of step with their peers. After the author shares her story of chronic illness and several surgeries, she interviews women living with invisible illnesses--ones that are not always noticeable--such as osteoarthritis, fibromyalgia, endometriosis, multiple sclerosis, and colitis. Hirsch finds that young women disproportionately live with chronic illness, and she challenges societal norms of ignoring or disbelieving women's pain, as well as medical norms of solely performing research on white, cisgender male subjects. Interviews with trans women and LGBTQ women prove that disability lacks a clean narrative; "it's largely about the world's failure to make space for you." Most importantly, Hirsch excels in topics that often receive little attention: losing friends after disclosing an illness, deciding whether to reveal at the workplace, and reevaluating the mind-set that youth and health are synonymous. VERDICT An essential read for all, especially those wondering how to be a better support system for young women with chronic illnesses, and for fans of the podcast Terrible, Thanks for Asking.--Stephanie Sendaula, Library Journal
Copyright 2018 Library Journal, LLC Used with permission.
November 1, 2018
Based on her personal story of health issues and several surgeries, Hirsch highlights young women living with invisible illnesses such as osteoarthritis, fibromyalgia, endometriosis, and MS in a work that reevaluates the mind-set that youth and health are synonymous. (LJ 2/1/18)
Copyright 2018 Library Journal, LLC Used with permission.