Why I Kept My Cancer Diagnosis a Secret
When I heard the words, “you have breast cancer,” at age 47, I called my husband, then my sister. That night, I emailed a friend who lives 2,400 miles away. But it never occurred to me to go public or ask friends for support. In fact, I didn’t want anyone to know. More than a year after my last treatment, I still don’t. It wasn’t just the unwarranted shame surrounding the diagnosis, though there was that, too. It was … well, complicated.
The night I was diagnosed, thoughts of what I’d done that might have triggered my cells to go rogue circled my mind like vultures — my nightly glass of wine, the clomid I took to get pregnant, radiation from a series of imaging exams I had in my 20s. But what really kept me up at night was losing my identity as “healthy,” a brand I’d spent years cultivating, including a stint as a nutrition educator for people at high risk of developing cancer.
The Stigma of Cancer
The word “cancer” often conjures big feelings, from pity to fear to worries about a truncated life. I didn’t want people associating that muck with me. I preferred to think of Gloria Steinem, a feminist icon who beat breast cancer at 52 and is thriving at 89. Charlie’s Angels Jacklyn Smith, 77, who was diagnosed in her mid-50s. And Judy Blume, 86, my North Star as a writer, who battled cervical cancer in her 50s and breast cancer in her 70s. When dark thoughts and fear crept in, I clawed them back with images of my husband and me, both in our 80s, rocking on a porch swing.
Dawn Gross, M.D., Ph.D., a palliative care physician at the University of California San Francisco tells me my decision to stay mum isn’t unusual, and the reasons patients choose not to disclose are as varied as their diagnoses. Some people don’t want to worry friends and family. Others don’t want people to treat them differently. Still others crave a respite from the illness. But on a basic level, people who identify as introverts — like me! — are more likely to keep a serious diagnosis under wraps.
“We wouldn’t expect someone who is private by nature to shout from the rooftops that they have cancer,” says Dr. Gross. “Plus, being selective about who you tell, and when, allows you to control the narrative.” That may be why celebrities like Nora Ephron, Chadwick Boseman and Kathy Bates chose to battle cancer privately. It’s also why I chronicled my fears, frustrations and deep-seated grief in a journal rather than through conversations with friends and family. When I couldn’t speak about cancer, I purged it in writing. Even now, while “revealing” my diagnosis, I’m using a pseudonym.
“Talking about one’s medical condition can be stressful; doing so repeatedly can lead to a sort of traumatic experience for some people, constantly reminding them of the challenges, uncertainties and lack of control inherent in the disease,” says Jesse Fann, Ph.D., director of psychiatry and psychology services at Fred Hutchinson Cancer Research Center.
To complicate matters, once people know, they expect updates. Advocates press you to go public to help raise awareness. Well-meaning friends show up in ways that aren’t always helpful, like bringing over wine when you’ve decided to go dry. And people who are justifiably terrified of the disease rush to find a reason why cancer happened to you, not them, because your disease challenges their mortality: If she birthed and nursed three children, has always been active and eaten a nutritionist-approved diet, and has no family history of cancer — all protective factors — and still got cancer, maybe it’s coming for me, too?
“Illness can be tied to so many projections, and it can be a source of shame and blame,” says Helen Marlo, Ph.D., dean of the School of Psychology at Notre Dame De Namur University. “From new age philosophy that you caused your cancer to epigenetic research that links certain stressors to changes that impact our cellular functioning, there’s often a sense that you did something to cause the disease.”
A Crisis of Identity
Cancer isn’t like a cold or the flu, where once you get past the sickness, you shed the disease from your identity. With cancer, you’re expected to evolve into a “survivor,” “thriver,” “warrior” — words that transform you into some sort of mythical creature that’s completely counter to your lived experience.
True, cancer changed me. I'll never again think I can control everything about my health. But I don't identify with the term “cancer survivor.” When I saw pink ribbon bracelet charms at our local farmer’s market, I felt more nauseous than I did after my last chemo cocktail.
I’m a wife, mother, daughter, sister, friend, writer … and even though I have benefitted from the breast cancer community, including financial support from The Susan G. Komen Foundation, The Pink Fund and Breast Cancer Angels, I didn’t want to give cancer, even the surviving of it, any part of my identity. Steering clear of others’ projections, fears and monikers helped me safeguard my energy, both physically and metaphysically.
The Science of Support
When I asked for privacy when confiding in someone for logistical reasons — clients, neighbors, my kids’ teachers — I often received some variation of the same response: “But if you shared the news, you’d get so much support!” “Wouldn’t cancer be easier to manage with an ongoing meal train?” “The more people who are praying for you, the better!”
Even my oncologist expressed concern that I was keeping my diagnosis quiet. “If people know, they’ll take your kids to school, help with household chores and send GrubHub gift cards,” she said, citing research linking strong social networks with improved quality of life.
I raged against the double standard. Certainly none of these people pushed extroverts to stop posting about their cancer battles on social media. So why couldn’t I process in my own way?
I knew the kind of support my oncologist promised, while well-intentioned and meaningful, would be detrimental to my psyche. Cancer breaks you wide open and I didn’t want people, no matter how beloved, picking apart my ugly innards. Giving everyone a seat at the table where I was waging a war for my life didn’t feel supportive. It felt intrusive.
As an introvert, casting a wide net of support would have exacerbated my anxiety. Dr. Marlo confirms that more sharing does not always equal more support. “It’s not about volume, but rather whether one feels supported, cared for and understood, which will be experienced differently for introverts versus extroverts,” she says.
Even science is divided on the healthiest approach for patients — full disclosure or some variation of extreme privacy — with psychologists reporting that social interactions may trigger negative outcomes, including arguments, embarrassment and invasions of privacy. And it turns out negative interactions have a greater impact on wellbeing than positive ones.
Frankly, since I had the misfortune to get cancer, I felt entitled to do it my way. I didn’t want to hear: “You’re so strong; I can’t imagine!” “I’ve heard this kale recipe fights cancer,” or “my third cousin went to Thailand for treatment and now she’s cured.” I wanted a “patient vacation,” an alternate reality where I could be who I am, who I always was, without cancer attached.
Finding My People
When I was days away from my first treatment, I was intentional about who I confided in, and when, and I placed our children in the first tier. They would have a front-row seat to my illness and I wanted them to feel safe to ask questions. Plus, in the absence of information, children tend to spin their own, often uglier, narratives.
For everyone else, I asked one key question: Do they fill me up, or drain me? If they fell into the latter camp, I didn’t share. But if they exuded nurturing energy, I welcomed them into the fold gradually to avoid overwhelm. In the end, my circle was limited to about 15 people — friends, colleagues and health professionals not involved in my care. A few were on the other side of their own cancer battles.
I created a blog under a pen name and crafted posts that helped me process the adventure in real time without the mental gymnastics required for live discussions. Through the posts, I was able to drift in and out at my convenience, detailing how I “did” cancer on my own terms — backed by plenty of research and a cadre of medical professionals from “woo woo” to conventional. I didn’t need to sugarcoat, or put on a brave face. I even found myself detailing how my hair, once shiny and straight, began growing in fuzzy like a Chia Pet’s.
The comfort, care and engagement I received from near-strangers in response to my posts were more powerful than any IRL sympathy coffee — and without pity stares. Though I’ve been a writer for more than two decades, somehow the notion that I could lay my soul bare through the written word and receive everything I needed in return still surprised me.
“Cancer is an opportunity to become more connected and judicious about where, and with whom, you spend your time,” Dr. Marlo says. “It can be an opportunity to deepen relationships, to determine what you need, and what you don’t, from the people you invite into that intimate world.”
Nearly 18 months after my diagnosis, many of my close friends still don’t know I was ever sick — and I doubt I’ll ever tell them. But those “in the know” have become like family. They silently cheered me on from behind their computer screens while the vultures moved higher in the sky, away from the less-raw prey. I imagine if (when) they see me out in the world, we won’t give cancer a minute of airtime, focusing instead on the blessings we gained from the madness — the intimacy of true friendship.
What I Learned About Sharing
There’s no one-size-fits-all response to navigating a challenging diagnosis. Some people post pictures on social media after every scan, treatment and “cancer-versary.” Others confide in close friends and family. And still others inform people on a “need-to-know” basis, such as their employers (something I didn’t face as a self-employed writer).
“People share in ways that allow safety and comfort,” says Dr. Gross. “When you’re open with yourself and others about what you need, you can establish the type of support that will be most beneficial to your long-term health and wellbeing.”
These three tenets helped preserve my sanity, and may help others navigating a difficult diagnosis:
Take control. Decide what you need given your personality, circumstances and goals, and disclose accordingly and unapologetically.
Have grace. Sometimes people will share your news before you do. When that happens, try to accept it with compassion.
Give back — even when you don’t want to identify with a diagnosis. I’ve taken to writing fund-raising materials pro bono for a few cancer nonprofits, including one I personally benefited from, and together with my children, I’ve hosted a few bake sales and donated the profits.
*This writer is writing under a pseudonym
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