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. Read more…
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