Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine

by Michele Lent Hirsch

Overview

Featured in The Advocate, New York Times, Literary Hub, Autostraddle, and New York magazine's The Cut

This is a vital exploration of the ways society overlooks—and fails—young women with disabilities and chronic illnesses

Miriam’s doctor didn’t believe she had breast cancer. She did.

Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.

For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.

Michele Lent Hirsch knew she couldn’t be the only woman who's dealt with serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population—and now, with long COVID emerging, one that continues to grow. 

Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system—a system where young women, especially women of color and trans women, are invisible.

And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.

Lent Hirsch weaves her own experiences together with stories from other women, perspectives from sociologists on structural inequality and inequity, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

Product Details

ISBN-13:	9780807029817
Publisher:	Beacon Press
Publication date:	02/26/2019
Pages:	240
Product dimensions:	5.90(w) x 8.90(h) x 0.50(d)
Age Range:	18 Years

About the Author

Michele Lent Hirsch is a writer and editor who specializes in science, gender, and health. Her nonfiction has appeared in or on the Atlantic, the Guardian, Smithsonian, Psychology Today, and Consumer Reports, among other outlets, and her poetry in the Bellevue Literary Review and Rattle. She has taught journalism at Manhattanville College, conducted research as a writer-in-residence at the New York Public Library, and been nominated for a Pushcart Prize. A native New Yorker, she is also a member of Columbia University's Neuwrite network, a selective group of writers and scientists. She lives in Brooklyn, NY.

Table of Contents

Author’s Note

PART 1: Could Someone Love This Body of Mine

PART 2: The (Foggy) Glass Ceiling and the Wall

PART 3: It’s Cool Guys I’m Totally Fine

PART 4: Why Don’t They Believe Me? or the Case of the Lady Lab Rat

PART 5: To Raise Small Humans—or Not

PART 6: Sick Like Miss America

Acknowledgments
Notes
Index

Editorial Reviews

Featured in The Advocate, New York Times, Literary Hub, Autostraddle, and New York magazine's The Cut

“An essential read for all.”
—Library Journal, Starred Review

“It is an untapped, niche area for advice that Hirsch covers with relatability, grace, and empathy.”
—Publishers Weekly

“A well-researched account . . . 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.”
—Kirkus Reviews

“If you’re young and have a chronic illness, chronic pain, or disability of some sort, you should definitely read this book. If you don’t deal with any of those things—or know someone who does—you should absolutely read this book.”
—Global Comment

“I know what it means to work really hard to conceal the pain, struggle, and heartache in one’s life, to appear ‘fine’ just for the sake of other people. Because the reality of my life might have made others momentarily uncomfortable, I’d hide my own discomfort. It’s a hard habit to break and one that women have become adept at, one that is reinforced in the way our society treats, talks about, and engages with women who are ill or struggling. Thank you, Michele, for freeing us from the burden of being fine and shining a light on all the hidden pain women have been working so hard to conceal.”
—Nora McInerny, podcast host for Terrible, Thanks for Asking and author of It’s Okay to Laugh

From the Publisher

★ 11/01/2018
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)

Library Journal

01/01/2018
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. (Mar.)

Publishers Weekly

2018-01-23
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.

Kirkus Reviews