The Invisible Lives of Young Women With Chronic Illnesses

Jessica Gross | Longreads | March 2018 | 18 minutes (4,580 words)

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.

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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.

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.

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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Jessica Gross is a writer based in New York City.

Editor: Mike Dang