The following is excerpted 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.
He must see my scar, I think, but the bar is dimly lit, as bars are, and for the first time I understand the lighting. The back room that I had to shimmy through a crowd to get to is hopefully dark enough to hide the red slash across my neck. Hopefully.
The guy in question is asking about the vintage pin on my coat. I AM A TRAINEE PLEASE BE PATIENT, it reads. Mustard yellow, all caps, no punctuation.
“Oh yeah, I got it at a thrift shop, sort of a fancy junk shop,” I tell him. “Probably some person in 1972 was miserable when they had to wear it while training for, I dunno, a cashier job or something, and now I’m the jerk who misappropriated it years later and stuck it on my jacket to be hip.”
“I’m Simon,” he says. He seems amused by my self-deprecating answer. I don’t mention the part about how the pin doubles as an existential joke, some cheesy thing about how we’re all just trainees. Simon seems to get it. I don’t mention, either, the hope flickering in my head that people I meet will be patient with my body.
We talk for an hour at first. Simon is charming, an unexpected highlight after a bookstore reading I’d gone to with a coworker. The friends he’d been at the bar with and my friend from work wave to us, comically wink at us, but it doesn’t register. We talk for four more hours until, at some point, we realize how late it is, that everyone else has left. Then, finally, we kiss.
On our first official date a few days later, Simon asks about my neck. “What’s that scar from? Is it new?”
“Uhh . . . you should have seen the other guy,” I say, which is ridiculous, really, because I despise when people say that. I despise that phrase in particular and I despise clichéd euphemistic cover-ups in general, but I say it anyway. I’m not going to tell this sort-of stranger that I look like a regular chick and all but actually just had my thyroid cut out. That the cancer had spread from a butterfly-shaped organ we forget helps keep us alive and asserted itself in several of my lymph nodes. That in a few weeks I’ll need radioactive treatment to kill the remaining cancer cells that might be swimming in my neck. Or that I’ll be quarantined during the treatment, a biohazard. No way.
Once you have a health problem, it’s over. It’s a comment I both recall hearing and yet can’t pin down: a woman, or an amalgam of women, in person, on television, warning me that what happened to her will happen to me. Women who told me about the men who left them, who couldn’t handle illness or just didn’t want to or—what’s the difference? Young acquaintances whose partners got squeamish the moment health issues came up. Older friends, too, with resigned looks on their faces as they remembered their early twenties. The decades they’ve spent dealing with their health and then, on top of it, with lovers who ran away.
But when I became that twentysomething with an array of medical issues (hip surgery, mast-cell activation syndrome, Lyme disease, thyroid cancer—an improbable series of health crises that swiftly changed my idea of youth), I realized how many young women deal with the same. And because my father, who’d had multiple sclerosis, ended his life in the midst of my own health experiences, I became even more aware of the ways that different people react to their bodies. Unlike my father, though, I wanted very much to live.
So I began to gather stories. I learned how women from across the country dealt with no longer feeling invincible like their young peers. How they feared being rejected if they mentioned their health issues. How that fear often motivated them to hide the ways their bodies worked. I heard about the actual rejections they’d experienced, in the workplace and in social settings, and how our culture led them to expect the worst even from partners and bosses and friends who seemed to wholeheartedly accept them. How gender norms and the idea of “perfect” young bodies played out in both queer and hetero relationships, and how the specter of feeling like a freak hovered above them differently.
In a 2012 study from the journal Qualitative Social Work, researchers explore young women’s reflections on having a serious illness. One of their main findings is that the women feel “off time”—out of sync with what they were taught it means to be young, because their bodies started breaking down much earlier than they’d expected them to.
One thirty-three-year-old woman who experienced menopausal symptoms from breast cancer treatment put it this way: the things that happen to an older woman are happening to you at the wrong time. Another person couldn’t relate to the women she met with the same disease because they were all older and already had kids, even grandkids. They didn’t know what it was like to be the only one struck by serious illness among young, carefree, illness-free friends.
And serious illness, the researchers explain, leads some women to renegotiate their expectations for their young-adult years and beyond. I’ve met women who, when they suddenly discover they have a disease, begin to distrust their immune systems, to feel betrayed by their own bodies, to worry about how they’ll have to adapt to a world not built with them in mind—and to brace themselves for something else to “go wrong.”
Plenty of people with a disability or health condition don’t consider it something “wrong” at all, and find that kind of thinking part of a pathologizing (and ableist) narrative. For some of us, an illness or disability is just an everyday part of our body and identity. (I feel that way about aspects of my health issues, too.) Still, waiting for the other shoe to drop is one of the reactions I’ve encountered, both in myself and in others. When you’re at a party one day and in the hospital the next, or were born with sickle cell anemia and later learn you have a tumor, it can make you wonder: What’ll strike next?
And when young women with serious illness talk to each other privately, we tend to trade details of what we consider our grossest moments. I had this tube up my nose and the anesthesiologist came in and I realized he was cute and my age! Or, I didn’t want to explain to the guy on our fourth date that I had a giant strip of gauze absorbing pus from my stomach—so gross, right? So when we started to make out, I just said I was tired. Easier than having him see that.
After participating in enough of these conversations, I’ve noticed how many of them center on sex and romance, or the glimmer of it. Will someone think I’m gross, and is that person already scrutinizing my body? As if women don’t have enough to worry about.
I’ve also noticed that these conversations about grossing the other person out with one’s health issues tend to be about men. What will this guy think when he sees/hears/feels my tube/history/scar? As someone who dated men for many years before realizing, a bit late in the game, that I’m gay, I’ve noticed, anecdotally, some differences with dating women (or dating people who identify as nonbinary). While the fear of being rejected for my health issues has certainly not gone away completely, it was far more palpable with men. During the years that I went on dates exclusively with guys and thought that men were the only ones who could make me feel electric, I knew that I was expected to be the woman in the relationship. Even if these were the types of guys my friends and I considered feminist, or “enlightened”—men who don’t consciously expect the woman to be a certain way—those deep cultural forces and beauty standards and gender roles were still there in the relationship, pinning us down.
That said, expectations for gender roles and bodies don’t vanish just because neither of the people in a relationship is a man. Plenty of women who date other women or who date people who are nonbinary or genderqueer still feel self-conscious that their bodies may not work or look the way they think their partners would like. Or, they worry that they might be bothering their partners with their health issues. But there seems to be more of a precedent for cisgender men rejecting women for their health.
The women I’ve interviewed over the past few years often spoke of the relief in finding a partner, long-term or for just one night, who doesn’t focus on your illness. Who acknowledges your scars or your crutches or your other visible signs of health issues without letting it change the mood and without making you into a freak. That can be true even for those of us who wish that others’ perceptions of our bodies didn’t influence how much we like ourselves, who wish that self-image was absolutely not based on whether or not you find a mate—if, that is, you’re looking for one. After all, there are many people who want to live on their own and don’t want to be in a relationship: people whom social scientist Bella DePaulo calls “‘single at heart’—those who live their best, most authentic and most meaningful lives by living on their own.” In her vital research on being single by choice and the discrimination heaped on those who choose not to date, DePaulo makes it clear that not everyone wants to have sex or find long-term romantic partners, and that we tend to make false, harmful assumptions about people who live single lives.
Among the women I’ve interviewed, though, talk of health or disability did often lead quickly to talk of dating and sex. For young women who do want to pursue mates, body image and romantic life can get tangled. While many of us wish we got a hundred percent of our feelings of self-worth or attractiveness from within ourselves and were glowing with much-touted self-love, research shows that the way other people view and respond to women with chronic illness “has an important effect on their construction of self-identity.” We may want to feel fiercely self-empowered and not beholden to anyone else’s expectations or opinions, but those expectations and opinions do affect us. Although, statistically speaking, young women make up a huge portion of some common diseases’ demographics, we as a culture still find it strange and shocking or gross or weird when a young woman has a health condition.
And that goes well beyond romance or the prospect of your body on display for someone else. As women and femmes, our bodies are constantly on display, whether we want them to be or not. As historian Joan Jacobs Brumberg puts it, our bodies are a kind of “public project.” And it can happen with friends, with colleagues and bosses, with a man standing in an elevator with you, with a woman you meet at a party who’s surprised when she finds out that you’re the same age as her, but in a way, aged.
Almost all of the women with health issues I’ve interviewed—women who come from a range of life experiences—have felt pulled in two different directions. On the one hand, they want to honor the fact that they feel decades older than their years. On the other, they want to fit in with friends and new acquaintances—even if sometimes that means pushing down their identity as sick or disabled.
I feel this pull myself. I want my peers to understand just how much I went through before my twenties were over, but I also want to be cool/calm/chill/just-a-fun-young-person-no-big-deal. When someone my age asks what kinds of health issues I’ve had, I say, “Well . . . the short version is thyroid cancer, hip surgery, and a scary rare anaphylaxis thing that sends me into anaphylactic shock for no reason and almost killed me three times. Oh, and somewhere in there, my dad also died.” Then, if I see horror or shock in their eyes, I rush to say something flippant or funny with too much zest in my voice. “Really fun few years! But, yeah, tell me more about your screenplay!”
I suddenly want them to see that even though I’ve been through a lot and feel old from it, I’m still their age: I’m totally fine.