Disclosure, or, you don’t owe anyone your trauma
In June of last year, I had a four hour train ride from Seattle to Portland early in the morning. Looking for things to listen to, the podcast Scamanda popped up as a recommended listen. When I read that it was the story of a young mother tragically stricken with cancer, my initial reaction was “no thanks.” Even before my own cancer, I hated movies, TV shows, books and podcasts where cancer was essentially used as a plot device. It seemed like the laziest kind of writing: hmmm, this character needs to be more empathetic. Better bring out that cancer plot!
The thing about Scamanda, though, is that she was faking her cancer. In 2021, Amanda Riley, an evangelical Christian elementary school teacher, pled guilty to wire fraud. Between 2012 and 2019, she pretended to have Hodgkin’s Lymphoma, and she leveraged her blog and social media to raise over $100,000 for treatments. She shaved her head, posed in what she claimed were oncology wards, and emotionally manipulated people who thought her illness was particularly tragic because she was a young, conventionally attractive, white mother of young children.
None of it turned out to be true. Yes, she was a young, conventionally attractive white mother of young children. But the cancer was fake, and what was particularly galling about her scam was how much she got total strangers to empathize with her to the point that they gave her money.
Image: Jay DeFeo, The Annunciation, Chicago Art Institute
Now that I’m done with chemo (the poisoning phase) and waiting to start radiation (the phase where I get burnt to a crisp) and a whole mess of pills (the side effect of one is, charmingly, listed as “uncontrolled diarrhea”), I’ve been slowly blocking a lot of people on social media who have made their illness into a kind of brand. This isn’t because I don’t empathize with the fact that capitalism forces all of us to have some kind of hustle, or that I don’t understand that the American healthcare system is functionally broken, sending people into massive debt just so they can stay alive. It’s more that the creeping discomfort I’ve felt most of my life with strangers trauma dumping in bars, at airports, or in essays and books has gotten worse since I got sick. This tendency to overshare, exacerbated by the internet, feels even more uncomfortable now that I’m seriously ill myself. And it’s because in some ways we are expected to tell everyone that we are sick. What was once private is now public, and it can be psychologically devastating to decide how to navigate this new reality.
One of the things I tell my creative nonfiction students is that you have to be careful writing about trauma when you’re a person from a marginalized community. Women, queer people, BIPOC people, disabled people and those who grew up in poverty are often asked to write about our trauma as a kind of performance to make other people feel better about their lives. The average affluent reader of the New York Times, for example, can clutch their chest and sigh, “oh, how awful” when they read a trauma narrative. Then they can donate $10 to the ACLU, feel better about themselves, and be grateful not to have experienced misgendering/rape/racism/starvation/cancer or whatever they’ve just read about.
Writing and talking about illness feels like putting on a performance. When I tell someone I have cancer, there’s an uneasy feeling that this person is now going to be relieved because thank god, they don’t have cancer. I know this, because I have felt this way when people I care about were diagnosed with any kind of life-threatening illness. Yes, many people are truly empathetic when it comes to health issues, but when rich people are boasting about their ability to afford a $2500 screening MRI even though they’re in perfect health, and when diabetics can’t access Ozempic because people who want to be thin are hoarding it, and when people fake cancer to make money, our perceptions of health and sickness in America are deeply fucked up.
The other issue of writing about trauma or illness I often discuss with my students is the “so what/who cares” factor, or the need for a news peg. If I pitched an essay about having cancer to an editor right now, they’d delete it. Why? Because thousands and thousands and thousands of people have already written or want to write books and essays about having cancer. But unless your illness has some kind of unique angle, or unless it connects in some way to an issue happening in the news right now, editors don’t care. Writing about trauma for the sake of trauma is not something that creates a dramatic arc; it’s a diary entry, often leading to rambling and disconnected writing that doesn’t move the reader to do, think, or feel something. “I got cancer” is not a good story. “I faked cancer” is.
Oversharing about illness also discomforts me because I’m a middle child. I learned to keep things to myself, take care of myself, and to thrive in solitude. That’s a factor of how people who became self-reliant and independent out of necessity think about illness. It’s not everyone’s business because the mundane reality of endless doctor’s appointments and surgery and chemo and radiation and meds is just not very interesting. It’s demoralizing, depressing, isolating, painful and lonely, but so are lots of other things, and if Covid taught us anything, it’s that everyone feels those things to varying degrees. So what? Who cares?
When I was diagnosed, someone I know had an accident at the same time. The more this person needed, the less I wanted to take attention away from them by discussing my own illness. With family and friends close by, and a partner of 27 years at home, my needs were pretty well taken care of. But telling people about my illness also meant demanding their attention, and it felt selfish to ask for anything in comparison to so many people who need so much more than I do.
It is very hard to get sick and not compare your process of disclosing or not disclosing your illness to other people’s because social media pushes us to share everything. When I see other people with breast cancer singing on Instagram and dancing on TikTok, I think, “is this what I should be doing?” My writing has mostly focused on social and cultural issues, not on me. When I do write about myself, it’s to provide context or an angle on a story, not because I want the attention. So the never-ending singing, dancing, smiling and laughing sick people on social media just drove me further away from seeing social media as helpful. The culture of illness on social media felt invasive, and toxic.
When I finally decided to write about having cancer, it was because I couldn’t control the cancer, so I wanted to control the narrative, and because I wanted to talk about things that impact other people with cancer in a way that might deflate some of that narrative of smiling through cancer that social media shoves down our throats. I didn’t disclose my cancer because I wanted people to know but because frankly, I look obviously ill, with a bald head, dark circles under my eyes and scars that peek out of my shirts. But worry thrums through my days now that my illness is semi-public: maybe people think I’m lying, people might see me as needy or weak, that I’m a burden, an attention seeker, a drag, a bummer. When you see people smiling and dancing through cancer, you begin to worry that you are doing cancer wrong. In the oncology unit, every day I heard people saying this to their nurses, how much they hate how needy cancer makes you, how it strips you of everything until need is all that’s left.
When Barbara Ehrenreich recovered from her own breast cancer, she wrote Bright Sided, a book condemning America’s obsession with optimism. When Ann Boyer got through hers, she wrote The Undying, a book that pulses with rage at the dehumanizing way cancer treatments make people feel. When Audre Lorde lost a breast to cancer, she wrote The Cancer Diaries, a book that hammers home the horrifying fact that Black women are more likely to die from breast cancer than any other group, and that racism impacts every part of their treatment as well. These books are hard reads, not consoling or coddling ones. But this is the kind of writing about illness we need more of, not the kind that tells you to eat kale or laugh through your infusions or that you should share your trauma with millions of strangers online just because everyone else is doing it. That sharing, in fact, is what enables scammers like Amanda Riley to get away with faking cancer. And cancer scamming makes for a great podcast, but it also makes life so much harder for those of us who are actually sick.
If I’ve learned anything in the past six months, it is that don’t get to choose whether or not you have cancer, but you do get to choose how you talk about it, who you tell, and how you tell them. And when you do tell people, you are not being manipulative unless you’re actually manipulating them. Some people will turn out to be amazing, strangers will become friends, and some people will disappoint you in ways you never expected. But you don’t owe anyone your trauma, and you don’t owe anyone your story. It is yours to choose how to tell.