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

For Simon, even after all the changes

When a fistful of serious health issues struck me in my twenties, I saw how being young and female was inextricably linked to my experience. That I looked bright-eyed and feminine affected how others responded to me, too. Often, people thought that I looked great! or pretty! or young! and that I therefore couldnt possibly be sick. So I began to interview other young women whod been through a lot. And I saw that for each person I met, words carried their own meaning.

Language is a tricky thing, especially when we try to capture whats happening in our bodies and in our culture. Words like health, healthy, sick, illness, and disability are always relative and always loaded, rarely static, and often problematic. Words like women, too. Our definitions are constantly in fluxas are, for instance, the laws that govern our rights. Whose bodies count? Whose bodies do we systematically inconvenience or overlook? In this book, Ive tried to be mindful of the fact that a phrase that resonates with one person may feel prickly, even hurtful, to another. Some women Ive met identified as having a health issue, some as having a disability. Some spoke of how their sexuality, gender identity, or race intersects with their experience, while other womenoften those who face less discrimination or who have more privilegedidnt bring up those aspects of identity nearly as much.

Im also aware that one small book trying to start a big conversation cant possibly discuss every type of health issue out there. Nor have I captured a perfect cross-section of women. That said, by trying to interview women from different backgroundswhether in terms of gender identity, race, sexuality, geography, economic status, or beliefsI hope to sketch a picture of what its like to be young, female-identified, and dealing with the constant pressure to seem youthful and carefree, no matter what ones body is going through.

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 Im the jerk who misappropriated it years later and stuck it on my jacket to be hip.

Im Simon, he says. He seems amused by my self-deprecating answer. I dont mention the part about how the pin doubles as an existential joke, some cheesy thing about how were all just trainees. Simon seems to get it. I dont 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 Id gone to with a coworker. The friends hed been at the bar with and my friend from work wave to us, comically wink at us, but it doesnt 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. Whats 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 clichd euphemistic cover-ups in general, but I say it anyway. Im 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 Ill need radioactive treatment to kill the remaining cancer cells that might be swimming in my neck. Or that Ill be quarantined during the treatment, a biohazard. No way.

Once you have a health problem, its over. Its a comment I both recall hearing and yet cant 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 couldnt handle illness or just didnt want to orwhats 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 theyve 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 canceran 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, whod 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 theyd 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 heterosexual 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 womens reflections on having a serious illness. One of their main findings is that the women feel off timeout of sync with what they were taught it means to be young, because their bodies started breaking down much earlier than theyd 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 couldnt relate to the women she met with the same disease because they were all older and already had kids, even grandkids. They didnt 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. Ive 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 theyll have to adaptand to brace themselves for something else to go wrong.

While plenty of people with a disability or health condition dont consider it something wrong at all and would find that termsomething wrongquite problematic, even offensive, its one of the reactions Ive encountered, both in myself and in others. When youre 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: Whatll strike next?