Contemporary Authors

• Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships and the Pressure to Seem Just Fine ( nonfiction) Beacon Press (Boston, MA), 2018

1. Invisible : how young women with serious health issues navigate work, relationships, and the pressure to seem just fine LCCN 2017026791 Type of material Book Personal name Hirsch, Michele Lent, author. Main title Invisible : how young women with serious health issues navigate work, relationships, and the pressure to seem just fine / Michele Lent Hirsch. Published/Produced Boston : Beacon Press, [2018] Description x, 230 pages ; 24 cm ISBN 9780807023952 (hardcover : acid-free paper) CALL NUMBER RA418.3.U6 .H57 2018 Copy 1 Request in Jefferson or Adams Building Reading Rooms

• Amazon - https://www.amazon.com/default/e/B06Y2H67JQ/ref=sr_ntt_srch_lnk_1?qid=1529802764&sr=1-1&redirectedFromKindleDbs=true

  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.

• The Cut - https://www.thecut.com/2018/04/michele-lent-hirsch-changing-my-style-to-mask-health-issues.html

  SCIENCE OF US
  APRIL 6, 2018
  12:21 PM
  Changing My Style to Mask My Health Issues
  By
  Michele Lent Hirsch
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  My father once said that as a child, I flipped dramatically between styles. One year, barely past toddling, I declared that I would never wear “girl” clothes again, and spent a large part of pre-K roaming with boys in my loose pants and overalls. That was my preference for a while, he told me, until a few years later, when I entered a phase of skirts.

  The variations continued into college, and long before I knew I was gay. So when I dated men in my early 20s, it was with a long record of vintage dresses, androgynous T-shirts, old-school-flight-attendant silk scarves, and men’s pants. A history of dressing for my mood, not for dudes.

  Then my history began to include new patterns: prodding, blood-drawing, loudly banging MRI machines. Pain.

  When I was small, my pediatrician once paraded me around to his colleagues. Look! he said. She’s my healthiest patient! I remember wondering why he said it with pride, as if he or I had any control over it. A decade later, I became the patient who suddenly had a major problem with her joints and a near-fatal anaphylaxis condition — a 20-something who dealt with surgeries and emergency medicine and a premature awareness of mortality in between smiling over beers.

  A few days before an operation on my hip, I was on a date, trying not to think about torn cartilage and ball-and-socket bones. He was a musician named Mike, and I was very aware that he’d met me while I’d been wearing one of the most “feminine” outfits I owned: a pinup-y vintage top with a high neck and tight bust and a skirt that hemmed me in at the waist. We were talking and flirting and kissing and talking more. When he asked if I would go out with him again a few days later, I paused. I couldn’t, I knew — not because I wasn’t interested, but because I would be laid up, immobile, probably in excruciating pain. I had undergone this surgery once before on the other side of my body. Not only was it awful, but it also sounded extremely unsexy. Having a problem with your hip when you’re young makes people say thoughtless, mildly hurtful things, like, “Wait, your hip?!!” with too many exclamation points, or, “I thought only grandmas had hip surgery.” Now this attractive guy wanted to make out in a few days, and I had to tell him yes except no.

  “Well, this is weird, but I’m actually having hip surgery on Monday,” I said.

  I filled the silence like I always do when a person I’ve just met is learning something new or surprising about me. I made some awkward mumbly comment, like, “Kind of gross, I know, but it’s not just for old ladies, haha,” the haha coming out stilted and probably giving away that my throat was brink-of-crying tense.

  I’d been bracing for a look of revulsion, but Mike said only nice things. He didn’t compare me to his grandma. He just told me, as a way of commiserating or taking the weirdness out of the moment, that he had had mouth surgery once and, as he put it, “That’s way grosser.”

  All that put me at ease. As did one sheepish line from Mike: “You’re having hip surgery, but I mean, you’re still hot.”

  Much as I wished I didn’t need any validation from a guy, I latched on to this. The surgery, the crutches, the old-lady connotation wouldn’t render me the least appealing human on earth, it turned out. I would be more than a sexless scalpelled thing.

  ***

  After a week of such searing pain that I barely moved from one position, I was ever so slightly better. I peeled off my pajamas, covered the thick bandage on my hip with plastic so I could shower, and got dressed. I wanted to feel wanted. And I’d learned what that entailed: curves.

  Sure, ever since I was a tiny kid, I had flitted between more androgynous outfits and the occasional tight frock. But there was no question tonight about what I’d be wearing: a wiggly 1950s dress that was fitted at the waist, and just roomy enough at the hips that it showed my curves without pressing too hard against my bandage. The dress was like armor, protecting my bodily insecurities. I wasn’t sure if I was wearing it for me or for Mike, to show him that I was indeed still hot or to convince myself.

  The subway was off-limits for another few weeks while I healed, so I maneuvered myself, with some pain, into a taxi and met Mike at a Thai place in Manhattan. Even with his comment about my hotness, I couldn’t, at 25, face the prospect of a new date seeing me on crutches. So I left them at home and promised myself, and my wary mother, that I would walk no more than from the curb to the restaurant. Just a few feet.

  Naturally, it didn’t work out that way, and in the course of limping down several streets to go to a jazz club after dinner, I may have further damaged a major tendon, all in an attempt to show just how hot-and-not-gross I could be. And my limping earned me another compliment from my date. “You’re walking pretty well for someone who just had surgery!” Mike said. He looked genuinely impressed. I said something self-deprecating and didn’t tell him about the staggering pain.

  He asked me back to his apartment.

  That night, in Mike’s bed, we didn’t have traditional straight-cis sex because I couldn’t so soon after surgery, but we did hook up. At the time, I felt bad that I couldn’t move my leg enough for this dude’s pleasure. That I’d failed to provide what I could have, had I not been cut open a few days before. Now, it makes me cringe — hard — to think of how much even a young feminist absorbed the idea that she should feel bad about not “providing” something a week after getting off the operating table. It makes me embarrassed to admit out loud.

  In the end, I got a long email from Mike. He wrote that he was interested in me, but could tell I wasn’t “the one” (a concept I didn’t subscribe to but that he apparently did). On my end, I just wanted someone who made me feel like I was a young woman in the first place and not some monstrosity. I didn’t need the person to think I was the one. So I replied to him. I just wanted to understand, I wrote: Was he attracted to me, or not? Because after all his comments before my surgery and the way we’d hooked up afterward, I had thought he was saying he was.

  I am attracted to you, he replied.

  Reading the exchange today makes me cringe again. Was I really clarifying over email whether a dude I barely knew was into my body? But back then, I was glad to see his response. I didn’t think we were serious-relationship material, either. I just needed to know that it wasn’t about my hip.

  In the elevator a few weeks later, a guy in his early 30s wearing athletic clothes asked me why I was on crutches. His tone was bright, maybe even flirtatious. He opened with, “Knee injury?”

  “Oh, I had hip surgery a few weeks ago,” I said. And then, remembering how people usually reacted to it, added brightly, with a smile, “It’s not just for old ladies!”

  Disgust that he probably didn’t mean to show flitted over his face.

  “Oh.” He scrunched his nose. Then, in a withering tone: “You should just tell people it’s your knee.”

  ***

  It’s not that my health issues — my first hip surgery, a string of near-death anaphylaxis episodes a few years later, this second hip surgery, or, later, my thyroid cancer — caused some immediate switch in my wardrobe to va-va-voom-lady-outfits-all-day-all-night. And it’s not that unsolicited disgust from men like the one in the elevator had the power to completely change my gender expression, my concept of self and how I presented to the world. But all of these things did affect me on a deep level, and also a sartorial one. Having a body that fit into hourglass-shaped dresses made me, I think, feel insulated from the much worse things men might say when they learned about that body’s medical history. At some point, when the universe had flung enough health crises at me to make me sometimes laugh, but mostly cry, I was more and more likely to go outside in something form fitting, “feminine.” More and more likely to feel “myself” when a guy — or even a straight female acquaintance — told me how good I looked, pointed to the way my outfit perfectly fit my curves.

  The woman mold I’d spent most of my life holding at arm’s length and, I thought, approaching only when I wanted, was now my preferred shape to wriggle into. My offering to the world of who I thought I was, of what it meant to look like something other than a morass of antihistamines and scars.

  And it’s not so black-and-white. I’ve always loved searching for unusual vintage clothes. The fun of finding a dress with mid-century hues and buttons and strange collars and darts to accentuate breasts and hips was real. I thought I loved the way they hugged me. (Perhaps, I now realize, I needed an actual hug.) And I didn’t wonder much about why my androgynous clothes no longer appealed. Why the me who’d worn men’s pants a few years earlier seemed to have faded, or to have morphed into a much different look. Whereas before I’d liked the variety and felt pulled toward more “masculine” or “feminine” outfits depending on how I felt that day, I now had a vague feeling that my interactions at parties and bars, and even the journalism class I taught to 14 undergraduates who wore sweatshirts, wouldn’t be quite as good unless I wore one of my fun — and form-fitting — looks.

  A few years after Mike, and a few years into a long-term partnership with the man I was with until I realized I was queer, I started to pick out menswear again. I want to say it’s not because I already felt secure and desired by a guy, but it might be. I want to say it’s not some trite thing where my mind was finally realizing I was gay, and it wanted me to look the stereotypical part, but it might be that, too.

  And it might have also been that I began to work with a biomechanics instructor who showed me how crossing my legs in the “girl” way was hurting my still-aching hip joints. She encouraged me to wear looser pants so that I could sit in a way that takes up more space, that’s better for tendons and bones, and that couldn’t really be achieved while wearing a tight dress or skirt. She was aiming to just make my body hurt less, but I think she inadvertently made me realize how narrow my gender presentation had gotten. I never wore makeup or heels, even at my peak femmeness, but I had gotten used to this feminine armor and felt uncomfortable putting some of it away.

  I want to say that I’m a strong feminist who never dressed for men. But I suspect many of us do even when we think we don’t.

  Even though I’m now dating women, I still find myself struggling not to get caught in those crosshairs. And I know that whether I wear one of my pinup-y outfits or wear a flannel that makes a grocery-store clerk call me sir, my surgery scars will be there: small laparoscopic dots scattered on each upper leg. The parts of me my girlfriend sees, the spots she sometimes asks about when she forgets what the now-closed holes are from. I see that the five incision points, an almost ghostly purplish-white, are spread across the me that exists on the feminine end, on the masculine end, and in all the androgynous spaces. The me that exists whether I’m naked or clothed. Whether I’m in someone’s bed or on my own.

  This essay is adapted from Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine (Beacon Press, March 2018). Reprinted with permission from Beacon Press.

• Bitch Media - https://www.bitchmedia.org/article/bitch-interview/michele-lent-hirsch-chronic-illness

  Quoted in Sidelights: “I’ve had hip surgery, an anaphylaxis episode that almost killed me, and then I was diagnosed with cancer. “And I just thought there must be some ways that I’m experiencing this that are very particular to my gender, my age, and my overall identity. A lot of us feel alone.”
  “there should be more legislation on the state and federal level, but we also need to teach people to have more empathy,” “People who want to make change are always debating whether we need to change laws or change people’s hearts and minds. We need both. I wish I’d been more informed about my rights. I wish I’d felt less powerless. But I don’t know if legislation or a conversation would’ve fixed that.” “I hope that people from many different backgrounds and experiences read this book,” she said. “I hope that men read this book. … I hope that people who don’t have health issues will read it.”
  THE MORTAL ONES
  HOW YOUNG WOMEN NAVIGATE SERIOUS ILLNESSES
  by Evette Dionne
  Published on June 7, 2018 at 9:48am
  The Mortal Ones illustration by Panteha Abareshi
  Illustration by Panteha Abareshi

  We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.

  “In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.

  Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10 | Part 11 | Part 12 | Part 13 | Part 14

  This story was originally published on February 27, 2018.

  What comes to mind when we think about people with serious illnesses? Typically, we envision people who are in the twilight of their lives and have lived long enough to be comfortable with meeting their maker. That’s the exact misconception that veteran journalist Michele Lent Hirsch is aiming to upend in her book Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine. In her 20s, Hirsch began dealing with a multitude of different health issues, including cancer, and she realized that she felt alone. She didn’t know whether or not to reveal her medical issues to bosses, friends, and potential romantic partners because she feared that they’d be repelled by watching her face her own mortality.

  In her book, Hirsch outlines how common that fear is, and the strides young people with serious illnesses take to seem normal and carefree—even as their bodies break down. In the process, she pushes against the socialized merging of youth with health and shows young people with serious illnesses that they don’t have to navigate their health issues alone. Ahead of the book’s release, Hirsch spoke with Bitch about how serious illnesses impact platonic and romantic relationships, how workplaces can better support people with chronic illnesses, and what she’s learned about how to advocate for herself at work, at the doctor’s office, and in her friendships.

  You have had several serious illnesses. What inspired you to turn those experiences into a book? Were you at all concerned about being so vulnerable on the page?

  I’ve had three major health issues in my 20s. I’ve had hip surgery, an anaphylaxis episode that almost killed me, and then I was diagnosed with cancer. And I just thought there must be some ways that I’m experiencing this that are very particular to my gender, my age, and my overall identity. A lot of us feel alone. I was inspired by conversations I would have at parties sometimes. They’re fun events where 25-year-old people usually don’t talk about illness, but young women would confide in me about their own difficult experiences with their bodies. There’s so many of us, and we’re all afraid to talk about it.

  Invisible by Michele Lent Hirsch
  Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch (Photo credit: Beacon Press)

  It is shocking how many people say, “I’ve never told anyone this, but I had surgery last year and I almost died. My friends and boyfriend can’t understand because I’m 27.” I realized that I would’ve felt better had I known that I wasn’t alone. On the book jacket, there’s a line about how shining a light on young women with illness shines a light on much bigger issues in our culture, including sexism, racism, and transphobia. What does it mean to be a young person in a body in a culture that’s obsessed with youth?

  If you’ve never had a serious illness, I hope there are aspects of the book that will make you think about your own interactions with people and their biases.

  Your book begins with a scenario that involves dating. Was that purposeful? If so, why?

  For a lot of people in their 20s, dating is at the top of their minds because they’ve been conditioned to think that they should want sex and romance. You’ve been taught that it’s very important to stand out and “look your best.” That’s where it all starts to converge with health and what we think a young woman should look like.

  As I started talking to people about their stories and thinking about my own experiences, [I realized that] so much of what we think about our bodies is tied up in what we think other people will perceive about our bodies. Of course, as a feminist and an angry woman in America, I wish that weren’t true. I wish I felt all of these beautiful things about my body on my own, and I didn’t need someone to validate me. But looking at dating and sex got to the heart of those issues. Even when you consider yourself a feminist and you’re dating a feminist or ally, there are still so many forces in your relationship that you can’t control. In the chapter about doctors and the medical establishment, I quote Alondra Nelson, an incredible writer and academic. She says that when you’re in the doctor’s office, there are forces in the room before you and the doctor ever exchange a word. There’s already a power dynamic between the doctor and the patient.

  She’s talking about it in terms of race, but I think that’s true in dating as well. [The power dynamic] is true in queer relationships, too. There are more people coming out as asexual or aromantic, so I don’t want to give the impression that every woman in their 20s wants to date or have sex because that’s definitely not true. I started the book with sex and relationships because it gets at so much of what it’s like to be a woman, but the rest of the book doesn’t hinge on romance and sex. There are so many other ways to experience your health, your body, and your insecurities that have nothing to do with that.

  One of the striking stories in the book comes from Vita, a straight, half-Mexican woman of color who is diagnosed with multiple sclerosis at the age of 23. Her crush left her when she revealed her diagnosis. How common is that story? And what does it reveal about the stigma that young women with chronic illnesses are navigating while dating?

  The statistics I found were quite staggering: Men in hetero relationships are much more likely to leave women [who have serious illnesses]. If a woman is with a man with an illness, she’s no more likely to leave than a couple where there are no illnesses. I could’ve written 50 more pages just on that. From what I saw, [women with serious illnesses being abandoned] is a significant issue because the current studies clearly point to a gendered difference. In the book, I pull in statistics about men leaving women because most of the research is focused on heterosexual relationships, but there’s a lot more quantitative research that needs to be done. I’m sure there are women who’ve left men and I’m sure there are women who’ve left women, but the overwhelming feeling from statistics and anecdotes is that it skews toward men leaving women.

  The Mortal Ones illustration by Panteha Abareshi
  Illustration by Panteha Abareshi

  I’ve been thinking about it for years. In some ways, my career is much more important to me than whether a guy I’ve been on two dates with in my 20s decided not to commit to me because I have an illness. I can say that rationally now, but when I look back at those moments in my 20s, it felt like the man I was on a date with could invalidate my whole existence. It’s very embarrassing to admit because I don’t want base my self-worth on what men think, but we have been conditioned that way. A lot of that chapter was me fighting against that conditioning.

  One of your bosses told you that you needed to “leave your cancer at the door.” What do we need to do on the state and federal level to legally protect people with serious illnesses in the workplace?

  There is the Americans with Disabilities Act, but it doesn’t cover everything and sometimes changes what it covers. While interviewing people and reflecting on my own experiences, I realized that I wasn’t even really aware of the ADA when I was in these workplace situations. Even if someone had talked to me about it, I couldn’t be sure my conditions would’ve been protected by the ADA. The ADA is valuable legislation that has saved people’s lives and their livelihood. For instance, it has made sure there are accessible entrances so people can go to work or see a performance. Yet there’s so much work to be done to actually protect people every day.

  There should be more legislation on the state and federal level, but we also need to teach people to have more empathy [for people with disabilities and illnesses]. In that sense, it’s similar to a lot of the other gigantic social problems, civil right issues, and civil liberties in this country. People who want to make change are always debating whether we need to change laws or change people’s hearts and minds. We need both. I wish I’d been more informed about my rights. I wish I’d felt less powerless. But I don’t know if legislation or a conversation would’ve fixed that.

  Recently, The New Yorker published a satirical story about all the things that startups have instead of human resources. What role does human resources play in protecting people with serious illnesses?

  It’s complicated because HR can be helpful, but there are also HR horror stories. Beyond the scope of my book, HR has covered up sexual assault and sexual harassment. They’ve protected the man in charge instead of the woman who’s making an accusation. HR departments have helped companies fire people who’ve had cancer. In my experience, I was thankful that HR was there to help me [through a serious illness]. Of course, that makes me think that every company should have an HR department, but there are also people who weren’t protected by HR. Ideally, HR would protect every worker, but it doesn’t seem to work that way. I wish I had HR when I was at a company where there wasn’t one, but that doesn’t guarantee it would’ve protected me.

  HR would be helpful in scenarios when you’re negotiating directly with your supervisor about really difficult things, like taking off an extra day to go a doctor’s appointment. You might not realize how difficult it is to take three hours off for lunch instead of one hour when you’re afraid that you’ll be judged for not working as many hours. Every person I interviewed for the book said that they overcompensated at work. They’re saying, “Don’t worry. I’m working until 10 p.m. tonight because I need accommodations for my disability or I had a doctor’s appointment.” That’s very unhealthy. We need workplaces that recognize that someone who has an illness or disability doesn’t need to work an extra six hours every night to prove they’re working hard.

  When there’s no HR, it feels like your boss always has the upperhand, and there’s no one there to hold them accountable. I would love to meet with some HR organizations and talk to them [about workers with serious illnesses] because if you work in HR, but you’ve never experienced illness or considered that a young person might be ill, it could be helpful to talk to someone who’s been through it. I hope the book leads to some conversations about these issues because a lot of people are putting in extra hours and extra energy because they’re afraid that they’ll be fired or never get a promotion because they have a health issue.

  Changing hearts and minds has to begin on an intimate level in platonic friendships. What is it like to be the only person with a serious illness among friends? And how can friends without illnesses show up for those who are navigating a serious illness?

  It was extremely hard being the only person in my friend group going through a serious illness. I didn’t even fully realize how difficult it was at the time. Now that I do have friends who have health issues, I can look back and see that many of my friends didn’t understand me. I still have all of those good friends from my 20s when I was sick; they’re still some of the most important people in my life. When some of my friends learned that I was writing about having illnesses at a young age, they apologized for not being more helpful back then. They said they were sorry for not knowing what to say or how to support me.

  It’s difficult to know what to say. I’ve been through so much with my health and my body, and I still don’t always know what to say. I want people to know that it’s okay if you’re not saying the one sentence that will help your friend. It’s about being open to listening to them. You should really listen when a friend is saying, “I can’t believe I got this diagnosis” or “I can’t believe I was on the phone for two hours with my insurance company while you guys were out having fun.” Being a good friend in this situation requires listening instead of talking. Be there if your friend just needs to vent a little. I can’t emphasize that enough. A lot of the women I interviewed said that they were afraid of feeling like a burden in their romantic relationships, friendships, and careers. That’s a horrible feeling. Venting for two minutes about how horrible your insurance company was to you on the phone might seem like nothing, but it’s a lot better than feeling like you can’t burden your friends because they won’t understand.

  There are certain things that have rubbed me and other people with serious illnesses the wrong way. There are dos and don’ts when your friend is going through a health crisis. It’s not helpful to dismiss someone’s pain. That’s always a terrible idea. It doesn’t matter if you can’t see the pain. They’re not going to talk about pain for no reason. Sometimes, people say to me, “I also once hurt my hip. It got better in a few months.” Then I have to break the news to them: This is not going away. It’s been bothering me for a decade. Again, we can all be guilty of this because sometimes, it can be helpful to talk with someone about your personal experience. A friend sprained her ankle and I told her to consider physical therapy because it helped me when I sprained my ankle. At the same time, say those things with a grain of salt because everybody’s body is different.

  Also, don’t tell people how to solve their problems. A lot of people ask me if I’ve heard of acupuncture. It makes me laugh because I did acupuncture for five years. You should assess if the person seems like they don’t know what’s going on or if they’ve exhausted all of their options because they’ve tried everything. There’s a gentle and appropriate way to ask “Hey, have you tried this?” that could help the person. And then there’s the condescending and patronizing way of asking that dismisses the person’s whole history with their body and their health.

  Doctors don’t take patients—particularly female, nonbinary, and trans patients—seriously when it comes to pain. What has to change in the medical field for those who are ill to get accurate diagnoses and the medications that they need?

  This gets back to hearts and minds versus legislation, and how they can work in concert. There’s more of a discourse right now than two or three years ago about how doctors dismiss patients’ pain. In order for it to change, we need to talk about it more. How did we get to this point? What are some of the solutions? The first step is noticing how these absurd biases have a deep influence on a doctor’s professional thoughts about how different people’s bodies work. Even medical residents—doctors in a training phase—honestly believe that Black people feel less pain than white people. That’s so shocking and horrifying, but why do they have those thoughts? It was the way they were exposed to ideas about race and gender when they were 5 or 6. It goes much earlier and deeper than when they knew what a doctor was.

  Just because that study was done doesn’t mean people in the medical profession read it. I’d be really happy to see doctors having discussions about these studies. I’m not sure how siloed off doctors are from the studies done about them. The people I know who are doctors have stories that make me wonder if we’re ever going to get out of this mindset of doctors not believing patients. These ideas are not being addressed. Doctors also need to be trained to be critical of themselves and question their own unconscious biases. It needs to be addressed at the medical-school level. How can we make sure that patients get the care and medical attention they need? It’s going to take a huge change in how we socialize people.

  How have you learned how to advocate for yourself at the doctor? What are two or three steps that you take to advocate for yourself?

  Asking questions even when it feels uncomfortable is one of my biggest pieces of advice. I write down my questions, and I ask any that come to mind that will give me information about the diagnosis, the medications being prescribed, and any additional treatment. Advocating for myself means not being afraid to ask a fifth question if I need to. I will admit that I sometimes say, “Oh sorry, just one more question,” because I over-apologize like a lot of other women. But even if I say sorry, I’m still going to ask that next question. I’m not going to leave that doctor’s office until I feel comfortable, I understand what the doctor found, and I know what’s going to happen next. One of the most horrifying interviews in the book is with this woman named Miriam. The doctor told her she had cancer and then left the room, which also happened to me. I had a very similar experience, and it’s a horrible feeling. Her doctor didn’t even explain the basic terminology he was using.

  She knew what a mastectomy was, but many people don’t. It was only when she asked about her next appointment that he even told her that she would have to make these very large and life-changing decisions about her treatment. If she hadn’t asked questions, she would’ve known less, but even when she did, he didn’t have many answers for her. Doctors need to get a lot better because so much of advocating for ourselves is about evening out the imbalance between us and them. Make sure that you’re being listened to when you state your symptoms, though that puts the onus back on the patient instead of the doctor. Sometimes it has helped me to bring someone with me to the doctor. Having someone else in the room makes me feel like I’m holding the doctor accountable because there’s a witness to our exchange.

  In the book, Brenda says that having her white husband with her makes her doctor’s appointments run much more smoothly. It’s sad, but she brings her husband because it helps. Brenda wishes that doctors would take her seriously as a young Latina woman with a visible disability, but she knows that she won’t be listened to sometimes, so she brings her husband with her. A lot of doctors are wonderful, but Brenda knows there’s often an inherent bias. I don’t want these things to have to be true. I wish we could just improve doctors. I’ve had wonderful, kind, and incredibly thoughtful doctors who take their time because they really want to help me feel better. And still, it can be intimidating being in that room with them because we put doctors on a pedestal.

  What is your ultimate hope for your book? Who do you hope that it reaches?

  I hope that people from many different backgrounds and experiences read this book. I hope that men read this book. So far, the people I end up telling about the book are women because I suspect that women will relate to aspects of the book even if they don’t have health issues. I hope that men and those who don’t identify as women read this book. Preaching to the choir only helps so much. We can’t make this change without men having more empathy and understanding about this issue. I hope that people who don’t have health issues will read it. Of course, I think that women and queer folks will certainly relate to the book, but I hope it reaches beyond those demographics.

• Beacon Press - http://www.beacon.org/cw_contributorinfo.aspx?ContribID=1717&Name=Michele+Lent+Hirsch

  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.

  Author photo: Willy Somma

• LinkedIn - https://www.linkedin.com/in/lenthirsch/

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  My first book, Invisible, a blend of literary journalism and memoir, came out in February 2018 from Beacon Press. The book sheds light on gender, health, inequality, and the pressure on women to smile through pain, and has been featured in a number of national outlets. You can find interviews, write-ups, and related essays at Longreads, The New York Times, The Takeaway, New York magazine's The Cut, and Vice, among other publications and radio shows.

  Previously, I've covered both heavy and fun subjects — nuclear waste disposal, the neuroscience of tastebuds, longterm effects of wartime sexual violence, and how love songs affect your behavior, to name a few.

  I write features, book reviews, essays, and poetry. I edit just about anything.

  Honors include a 2014 creative writing fellowship from the Tent program at the Yiddish Book Center, a 2014 ASJA scholarship, and membership in Columbia University's Neuwrite group.

  Specialties: Translating complicated research into accessible, compelling articles. Writing gracefully about tough subjects. And the ability to think big-picture about a publication's voice and web presence while also zooming in on nitty-gritty details.

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  Author of Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine. A blend of memoir and journalism, it came out in February 2018.

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  Women Under Siege, a project of the Women's Media Center
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  • Helped launch the current website for a journalism project founded by Gloria Steinem that centers on women’s mental and physical health in warzones and postwar regions
  • Pitched and wrote a range of stories on the physical and mental consequences of rape, problems with food aid, and sterilization policies
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  • For each print issue, conceived, pitched, and wrote or edited 4-5 stories that analyzed new research on mental health and neuroscience
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  Stuyvesant High School
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• Longreads - https://longreads.com/2018/03/01/the-invisible-lives-of-young-women-with-chronic-illnesses/

  Quoted in Sidelights: “I really wanted to make sure that there were many people from many backgrounds, different illnesses, different parts of the country, different races and ethnicities, different sexualities, different gender identities,” Hirsch said. “I tried hard not to include only people who look and sound like me. With every single interview I did, there was almost always some link, something they said, that really reminded me of something someone very different from them had said. Sadly, often the link was a doctor being horrible to them. Another thing that seemed common to almost all the interviews I did was women feeling like they had to try to seem okay for their friends.” She explained: “Young women are always being held up as a symbol of fertility, and it seems to me that people can’t compute or don’t want to think about how the very person they think of as the poster of health is actually quite likely to be sick. And then, humans in general fear death. Most people don’t like talking about illness because it reminds them of their own impending death.”

  The Invisible Lives of Young Women With Chronic Illnesses
  Michele Lent Hirsch on the challenges young women with serious health issues face while navigating their relationships, careers, and own sense of who they are.
  Jessica Gross | Longreads | March 2018
  When Michele Lent Hirsch was growing up, she was hardly ever sick. In college, she had to have hip surgery; by her mid-20s, she had also been diagnosed with idiopathic anaphylaxis, thyroid cancer, and Lyme disease. In the midst of these issues, her father, who’d had multiple sclerosis, ended his own life. Now in her 30s, Hirsch has had years of experience moving through the world as a chronically ill young woman. In her new book, Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine, she interweaves personal experience and reporting to examine, through the lens of chronic illness, issues that she believes all women face.

  Hirsch and I are friends—we get together every few months to talk about writing and our lives (she’s a poet, too)—and yet I didn’t know the depth of her experience until I read her thoughtful, complicated, and beautifully written book. I think that’s part of her point: to bring these under-discussed experiences into the light. We met at a restaurant in the West Village and spoke about how chronic illness throws issues of being young and female into sharper relief, how illness intersects with not only gender and age but also sexuality and race, and how, in the midst of these deeply challenging experiences, there is a basic need for empathy.

  * * *

  I imagine it was an intense decision to write publicly about your experience of illness. Can you talk about deciding to write the book?

  I’d had this idea for an embarrassing number of years before I acted on it. I’d had hip surgery, I’d had anaphylaxis that almost killed me, but it wasn’t until I got cancer that I started to think, “This is a very particular experience that I’m having.”

  I was diagnosed with cancer in 2011, right before my 26th birthday. Originally, I wanted to write an essay about the particulars of being young, female and sick and all the ways that illness bumped up against what was already difficult about being a young woman in the world. I mentioned it to a friend who was an editor and a writer, and she said, “That sounds bigger than an essay. That sounds like a whole book.” I thank her in the back of the book, because she was right.

  For a few years, I didn’t believe her. I think that’s because so many women don’t talk about this stuff with each other, so you could be friends with someone and not even know that they have a chronic illness. But over the next few years, I started to see how often it just came up at parties or in conversation with a stranger or a friend of a friend. I began to realize that not only was this bigger than an essay, it was also way bigger than my experience. So at some point I said to my friend, “You’re right, it’s a book.” It is this vicious cycle: If you keep thinking you’re the only one, then you’re not going to share your experience, and then no one shares it, and then we’re all living in these weird, sad little silos.

  You write that young women are, statistically, the primary demographic for many major illnesses, which makes it doubly odd that the perception is that this is not the case. Can you talk more about what you attribute the general lack of awareness to?

  Young women are always being held up as a symbol of fertility, and it seems to me that people can’t compute or don’t want to think about how the very person they think of as the poster of health is actually quite likely to be sick. And then, humans in general fear death. Most people don’t like talking about illness because it reminds them of their own impending death. Nobody likes hearing about a friend’s grandmother who is dying, but it doesn’t go against their ideas in the same way. They can think, “Oh, old people, they’re going die. I’m not old, so I don’t have to think about it yet.” But in general, people really don’t want to hear about someone young being sick. I do think that applies regardless of gender, but when it’s a woman, we’ve put so much on young women to carry, symbolically, that I think it makes people extremely uncomfortable. Even I have that inside me, after going through all of this.

  What do you mean?

  I still feel very self-conscious about some of my health issues, even some of the smaller ones. I write in the book about the heartburn that I have, which is documented among many people who, like me, went to school or worked around the World Trade Center after 9/11. For some reason, heartburn feels embarrassing to me, like something for old men. It could be because it’s the way medicine is marketed on TV and heartburn medicine often has an older man eating a cheese steak or whatever, you know? [laughter] But for whatever reason, there are certain health issues that I still, even after writing this book, feel embarrassed about in relation to my gender.

  Yes. Oh, there’s so much to what you just said. But one of the things I kept thinking, reading your book, was that a thread running throughout the entire thing seems to be about empathy and failures of empathy.

  Yeah.

  It makes sense to me, given that what makes empathy difficult for people is fear, in my opinion. When people are scared, they just want to push you away. They are not capable of empathizing with your situation, because that would be to bring you closer.

  I agree. I think that in some ways, when you’re young, you’ve also been told—regardless of your gender—that you’re invincible. I think that’s the message we all grow up with. Then things get hard. So I think it is hard to empathize with something that you’ve been told you’re guaranteed not to have to deal with, right? And you probably then don’t want to hear about someone who’s dying of cancer when they’re 27 or just has a really hard autoimmune disease that they are not dying of, but just sucks. You know?

  Right. And that, I guess, is also the impetus behind not just statements like, “you’re too young to have cancer” but also the interrogation that sometimes happens: “How did you get cancer? Is there a known cause? Did you do something wrong?” People want a reason that they don’t share, so that they can feel safe. Which prevents them from acting with compassion.

  Yes. All that is coming from a position of fear: “Go away, I don’t want to think about someone like me getting that sick.” I have seen people look somewhat relieved when they hear that my cancer has been linked to toxins from 9/11, from my high school being nearby, because I think it gives them a sense of, “Oh, okay, it’s not going to happen to just any young woman, whew.”

  How does that feel to you?

  I think because I am in this same culture, even if I’m trying to resist it, I do almost sometimes feel glad that I can reassure someone, even though I know full well things happen out of nowhere. Many people get cancer not because of toxins when they’re in their 20s.

  That’s one of the things I have had such a strange time with, with this book, is that talking to so many young women, and I interviewed many more than are in the book; rehashing what’s happened to my own body; talking to experts; reading lots of essays—none of this means that I somehow have cleansed myself of the way that we are socialized. I think it’s similar to any feminist who wants to not have that internalized misogynistic crap that they grew up with, but no matter how many essays you read and conversations you have with friends, I don’t know that you can ever really shake it. You know?

  That would be like saying you can read your way out of your upbringing—which people are in analysis for 15 years trying to do! [laughter]

  Yeah! I think that there is stuff that in the book I sound very self-conscious about, especially when it comes to dating—this was when I dated men. I can reread parts of the book and say, “I have grown, I’ve gotten older, I’ve gotten less embarrassed about this, I don’t even date men anymore”—and it is easier with women, I have to say. But there are still so many things I reread and I still have that feeling. Writing the book didn’t get rid of it.

  How many people did you speak with in researching this book, and how did you find them?

  Altogether, I interviewed roughly fifty people. My main goal was to get outside of my own echo chamber. Some people reached out to me because they saw that a friend of a friend of a friend of a friend of a friend of a friend of a colleague of theirs had posted something that I had sent to someone I didn’t even know. I did try to reach out to some organizations, though I was wary, because I think an organization attached to a certain non-profit, for example, can be a self-selecting group. And some quotes are taken from message boards. But I really wanted to make sure that there were many people from many backgrounds, different illnesses, different parts of the country, different races and ethnicities, different sexualities, different gender identities. I tried hard not to include only people who look and sound like me.

  With every single interview I did, there was almost always some link, something they said, that really reminded me of something someone very different from them had said. Sadly, often the link was a doctor being horrible to them. Another thing that seemed common to almost all the interviews I did was women feeling like they had to try to seem okay for their friends. It’s sort of comforting to see that other people have this tendency, too, but it’s upsetting, because it means that we were all raised to try to minimize what we’re going through, even among people who should be our close peers and supportive friends.

  You write about experiences where you and people you interviewed received egregiously insensitive and even cruel feedback from those around you. In one case, you were sitting in the reserved seats at the front of a nearly empty bus after you’d just had hip surgery, and an elderly woman yelled at you. Even after you explained to her that you’d had surgery and needed to sit down, she said that you should get up, that the seat wasn’t for people your age.

  Right. She still refused to believe that a young women could need this seat that is designated for the elderly, disabled or pregnant, even though I made it very, very, very clear. What was so fascinating is that I interviewed a woman who’d had nearly an identical interaction. Both of us had also had bus drivers refuse to lower buses for us despite looking at our crutches.

  The suggestion you’re making, it seems to me, is that when a young person is confronted with another young person who has an illness, it can terrify them so that they’re like, “It can’t be.” That might be the seed of their insensitivity. But with an elderly woman who is already presumably contemplating death, why do you imagine that your illness would be so threatening to her? What could prompt her to react that way?

  I think part of it is just that she truly didn’t believe that I needed that seat. So maybe to her—I’m trying to be generous, trying to figure out why she was so horrible to me even though I was very clear about my needs—maybe she thought I was being lazy. The thing is, I wasn’t taking a seat from anyone else. The bus was empty. So it was even more absurd that she was so angry at me. But maybe that woman is used to being treated like shit because there is a lot of ageism in our culture—many older women I know say they are also rendered invisible. They are not considered sexual beings anymore and the world doesn’t care about them.

  So, “You can’t be young and pretty and have this seat. This is my one thing. Get out of my seat.”

  Right, maybe it was the one thing that she gets. But it still blows my mind when I think about that, because the anger in her voice was so unwarranted. But I do think that older women in our culture are treated like absolute shit, and so I would like to try to give her the benefit of the doubt. At the time, I was in my 20s. I looked so young when I was in my 20s—I looked like I was 18. So maybe she resented that I was taking that thing that she’d earned. I don’t know.

  Speaking of reactions to chronic illness, I do want to talk about the dating differential that you’ve described. You write that your illnesses have been received very differently by the men and women you’ve dated.

  I want to start out by saying that I don’t like making gross generalizations about gender. That said, when I started writing this book, I didn’t know that I was gay. I had been planning on including people with different sexual orientations, but I did not know that I would be that person. I do think that it feels different to reveal something about your body to someone else marginalized for their gender than it is to reveal something about your body to someone who is considered the judge, the owner of the male gaze, insert phrase here explaining what men do with their power in our culture.

  There is a bi woman in the book who says she’s found it’s always better with women, even though she’s with a man right now. Obviously, that means she thinks he’s a pretty good one, but she has had a lot of terrible interactions with ex-boyfriends and men she has tried to date.

  I also cite studies that show men leave women at much higher rates for illnesses than women do. As a disclaimer, studies are really hard to replicate; they’re often done badly; you can’t base everything off of two studies with small sample sizes. But not that many people are studying this, so I tried to pull what I could from the literature to look at this stuff.

  I don’t know how I would feel right now if I were starting to date men again. I do think that having written this book, I got somewhat better at talking about this stuff with strangers. But taking away the male gaze—and I hate to use such an overused term, but there it is—taking away the male gaze makes a big difference.

  All this said, women are not perfect. I am not saying that dating a woman, as a woman, gets rid of all the problems. It does not. There are lesbians who bring the male gaze into it. But I do think the power dynamic is maybe more even from the start. You’re not the woman in the relationship. So even if someone is projecting things onto you, if you’re both women, it’s just a little bit less intense, maybe.

  Speaking of egregious responses, you write about the way your boss reacted when you were first diagnosed with cancer. It was your very first day of being a paid worker at this publication after an internship when you found out you had cancer. When you told your boss, she reacted with what is to me unimaginable coldness. She told you to leave your cancer at the door. How do you feel writing about this now—is there any fear involved? You don’t specifically name the publication, but it wouldn’t be too hard for people to find it.

  I was scared to write about several situations in which I felt that I didn’t have any power. This is one example; the other is when I talk about the doctor who sexually harassed me. In both cases, though they are very different, those people had power over my livelihood and my body, and the fear might not even be logical, but it’s probably a very lightweight version of the reason women don’t report far more egregious things that happen to them: fear that someone is going to squash you further with their power.

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  Probably the most awful story in the book, in my opinion, is of the teenage girl—you call her Jayde—who was abused by a medical professional. Can you tell that story?

  Jayde was very young when she had a very, very serious, scary surgery that removed her colon, which is an untold amount of pain. She was first discriminated against by doctors who looked at her, saw a young, black girl—I’m not going to say woman, because she was 16, but we know from studies that people, especially white people, see black children as adults and ascribe all this power and agency to them that they do not really have. So: She was a girl. Several doctors accused her of trying to get medicine to abuse it, instead of realizing, “This girl is in pain because we just ripped out a part of her body in a very intense surgery.” So that’s number one. And it’s horrifying but not surprising, because we live in such a racist country, that that happened to her several times.

  And then came what you’re talking about: She had to get some form of X-ray and she was barely well enough to move. They needed her in a certain position to get the imaging done, and she couldn’t physically do it. Instead of having empathy for this child, the male medical professional physically assaulted her. It’s so horrifying. When she told me this, I think I started tearing up. It has clearly traumatized her. As I write in the book, she refuses to go alone now when she needs any sort of imaging done in an X-ray room. She talks a lot about trust issues with doctors and providers. It’s incomprehensible to me that someone could go into medicine to try to help people heal from illness and choose to physically attack a child as part of that process. And yet, knowing what we know about racism and sexism in medicine, it is unfortunately not a hundred percent surprising.

  Did you think about interviewing doctors and technicians who had been accused of this kind of behavior and asking them about it?

  I did consider it. It did cross my mind. I wasn’t sure whether it was worth going down that road for this particular project, just because the book already covers so much ground.

  I’m wondering what could be the motivations for keeping these people in their positions of power. One explanation is that these are people who are esteemed, and a lot is projected onto them in terms of needing them to be virtuous people. So what happens to our conception of the medical establishment that’s supposed to protect us if we acknowledge this kind of behavior?

  Right. I think it’s a bigger question of why, in our culture, we keep believing in institutions that we know have failed us. But I do think that you’re getting at something. If we had no faith in doctors, we maybe wouldn’t go—which some people don’t. Jayde, unfortunately, needs doctors to live. And I—who was sexually harassed by a doctor who helped me take medicine and monitor something that could kill me—also still need doctors to live. So maybe it’s sort of like Stockholm Syndrome. You need them, so you don’t want to think they’re all bad. And they’re also not all bad.

  Right. That’s most obviously true for people who have illnesses for which they actually need doctors, but I wonder if it’s also true more broadly—where as a culture, to divest doctors of power would be so terrifying that we need these convoluted explanations when things go wrong.

  I do think you’re right that psychologically, humans want to believe that something will protect them. I think it extends beyond just doctors and clergy, which is a parallel that’s been drawn, but I do think that these are maybe two of the last bastions of what we think protects us. I don’t know.

  You write about how women’s pain is often discounted as psychological, when it should be taken seriously as pain with a real physical origin, which I’m of two minds about. On the one hand, it’s important to know whether something has a physiological root, but on the other hand, what does it matter if the pain is psychosomatic? Why is that seen as less worthy, anyway?

  A theory I’ve come up with recently is that maybe we first just have to say, “Oh my God, people are not listening to women’s pain and treating it as ‘real.’” Then, maybe when some systemic change and progress has happened, we can all talk about it with more nuance. I don’t mean to say that I don’t think there is any room for nuance right now, I just think that it can get lost.

  On the other hand, I do think sometimes it can be deadly to assume that it’s psychosomatic, right? You may be ignoring, for instance, a brain tumor. But I fully agree with you that we should treat each person and try to make them feel more comfortable, no matter the source of their pain.

  One flaw of the way we frame the problem is that we may be inadvertently dismissing all mental health issues. When I was writing about doctors dismissing women’s pain as “only in their head” I was very wary: I don’t want it to suggest that mental health isn’t as serious. You want to critique what doctors are doing without taking power away from people who do have mental health issues. But it is worth knowing what the source of the problem is. So there is a reason that doctors do need to make this assessment.

  You use some language in the book that I found really interesting. One term you coined is “self-revulsion ads.” These are the ads in which, say, a woman will put a pore cleansing strip on her nose and then be disgusted by all the stuff that it pulls up. Could you talk about this trend, in general, and how it’s especially problematic when you’re sick?

  I was thinking back to all the times I have felt disgusted by and about my own body and/or embarrassed by what it was doing or not doing. These issues are always there, but come into sharp relief when you have a serious health issue. You and I grew up watching those ads where women looked disgusted by their nose zits—

  Or their fat, their cellulite, whatever.

  Right, I mention every possible thing I could think of that was in an ad when I was young that taught me that I should turn my disgust inward. You should definitely be disgusted by yourself, these ads tell us, and you should buy these products to fix it. It’s very clear why they take that approach: It’s because it makes them money. But it is so hard to unlearn that stuff. I think I have come pretty far, but it’s still in there. And I want to make this connection between having an illness that you feel embarrassed by, especially when in the presence of men, and having a body that you feel embarrassed by even if you don’t have an illness—because how many young women don’t have an illness, but are still embarrassed that their skirt doesn’t fit them perfectly and doesn’t make their butt look like a famous person’s. I do think it’s a continuum. The book may seem like it’s only about women who have some sort of health issue, but it’s really just about misogyny. It’s just a certain lens that I am looking at it through. I grew up without any health issues as a kid, and I already felt disgusted by everything, because I kept seeing those ads.

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  When you imagine an ideal reader for this book, is it somebody who has struggled with a chronic illness and who might feel less alone, or is it more someone who hasn’t whom you hope help to understand what this experience is like, or both?

  I would love both types of readers. I think there are women who feel alone because they think they’re the only young woman with a certain illness, and I do want them to feel less alone. But I also think that change doesn’t happen if you’re only preaching to the choir. If you write a book about rape culture, it would be really sad if only women read it, because what’s going to help is if people with power read it. Or, in this case, people who can maybe relate to their friends more. I also hope that some men read this book because I think a male reader could learn a lot.

  Speaking of people who haven’t had a major health issue early in life, what should we know about communicating sensitively with people who have? I ask this also because, reading the book, I was aware of having done some insensitive things, like having a surprised reaction when someone young has been sick and feeling fear come up in me. I don’t know if it’s realistic to expect not to have any fear or surprise when confronted by a young woman with a serious illness. But I also deeply hope to continually become more compassionate and sensitive.

  Even if you’ve been through something, it doesn’t mean that you have a perfect reaction to everyone else. I don’t a hundred percent of the time know the perfect thing to say to someone just because I’ve been through something difficult. If you’re friends with someone who has a serious health issue, especially if you’re young, you are going to be kind of surprised. That’s okay—it doesn’t mean you’re bad. But making space for your friend to talk about it a little bit, which sounds so fundamental but people often are afraid to do, makes a huge difference. Maybe your friend needs to complain a little bit about how horrible it was to be on the phone with their doctor or deal with insurance. It might seem minor, but that’s actually really helpful, to just let them complain for a minute.

  I think that having had my dad die at a relatively young age made me similarly aware that people say weird things out of fear and discomfort and sometimes trying to do the right thing, but not being sure. When I know someone’s parent has died, I tend to say, “That really sucks.” I find that often, no one has said that to them.

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Quoted in Sidelights: “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.”
Print Marked Items
Hirsch, Michele Lent: INVISIBLE
Kirkus Reviews.
(Feb. 1, 2018):
COPYRIGHT 2018 Kirkus Media LLC
http://www.kirkusreviews.com/
Full Text:
Hirsch, Michele Lent INVISIBLE Beacon (Adult Nonfiction) $26.95 3, 13 ISBN: 978-0-8070-2395-2
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, mastcell
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.
Source Citation (MLA 8th
Edition)
"Hirsch, Michele Lent: INVISIBLE." Kirkus Reviews, 1 Feb. 2018. General OneFile,
http://link.galegroup.com/apps/doc/A525461310/ITOF?u=schlager&sid=ITOF&xid=0f9bd977.
Accessed 23 June 2018.
Gale Document Number: GALE|A525461310
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Quoted in Sidelights: “It is an untapped, niche area for advice that Hirsch covers with relatability, grace, and empathy,”

Invisible: How Young Women with
Serious Health Issues Navigate Work,
Relationships and the Pressure to Seem
Just Fine
Publishers Weekly.
265.1 (Jan. 1, 2018): p52.
COPYRIGHT 2018 PWxyz, LLC
http://www.publishersweekly.com/
Full Text:
Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships and the Pressure to
Seem Just Fine
Michele Lent Hirsch. Beacon, $26.95 (216p) ISBN 978-0-8070-2395-2
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.)
Source Citation (MLA 8th
Edition)
"Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships and the Pressure
to Seem Just Fine." Publishers Weekly, 1 Jan. 2018, p. 52. General OneFile,
http://link.galegroup.com/apps/doc/A522125024/ITOF?u=schlager&sid=ITOF&xid=05948a91.
Accessed 23 June 2018.
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Gale Document Number: GALE|A522125024
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NOTE FROM TRUDY: deleted this one from Biocrit becauseit's her review of someone else's book
Winter reads: curl up with the latest
books about behavior, from smooching to
social networking
Psychology Today.
44.1 (January-February 2011): p26.
COPYRIGHT 2011 Sussex Publishers, Inc.
https://www.psychologytoday.com/
Full Text:
THE SCIENCE OF KISSING
By Sheril Kirshenbaum
Do we scavenge for lips that resemble red fruit or are we sniffing out compatibility? Kirshenbaum arouses
both the senses and the mind by exploring myriad theories of why and how we smooch. A playful yet
comprehensive look at recent research, the book covers everything from evolution and attachment theory to
gender and cultural preferences in necking,
--Michele Lent Hirsch
THE EMOTIONAL CALENDAR
By John R. Sharp, M.D.
Seasons, holidays, and even wind patterns can have profound effects on our mood. With explanations for
sexual friskiness in summer and depression at the end of football season, Sharp hands us the tools to be
more self-aware and adaptive when our environment changes--and to keep annual mood dips in check.
--Sajel K. Shah
ALONE TOGETHER
By Sherry Turkle
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Forget the digital Eden we were once creating. The technologies we've invented are now diminishing usrobbing
us of attention, privacy, and intimacy, Turkle claims it's not the technology that's disappointing, but
ourselves--we keep expecting it to solve our problems. But that rings a bit false; after all, we don't have to
keep building the technology that caters to our vulnerabilities.
--Hara Estroff Marano
THE PRICE OF EVERYTHING
By Eduardo Porter
From the sacrifices we make to be social to the restrictions we embrace for religion, all our actions carry
hidden costs. Porter's highly readable crash course in economic theory shows how literal and metaphorical
price tags provide rationales for what we think we want. Whether your goal is to make better choices or to
finally wrap your head around the current economic crisis, Porter's analysis is a valuable resource.
--Katherine Schreiber
Source Citation (MLA 8th
Edition)
"Winter reads: curl up with the latest books about behavior, from smooching to social networking."
Psychology Today, Jan.-Feb. 2011, p. 26. General OneFile,
http://link.galegroup.com/apps/doc/A246535005/ITOF?u=schlager&sid=ITOF&xid=da49f7a2.
Accessed 23 June 2018.
Gale Document Number: GALE|A246535005

"Hirsch, Michele Lent: INVISIBLE." Kirkus Reviews, 1 Feb. 2018. General OneFile, http://link.galegroup.com/apps/doc/A525461310/ITOF?u=schlager&sid=ITOF. Accessed 23 June 2018. "Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships and the Pressure to Seem Just Fine." Publishers Weekly, 1 Jan. 2018, p. 52. General OneFile, http://link.galegroup.com/apps/doc/A522125024/ITOF?u=schlager&sid=ITOF. Accessed 23 June 2018. "Winter reads: curl up with the latest books about behavior, from smooching to social networking." Psychology Today, Jan.-Feb. 2011, p. 26. General OneFile, http://link.galegroup.com/apps/doc/A246535005/ITOF?u=schlager&sid=ITOF. Accessed 23 June 2018.

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