Here's why some people keep their cancer diagnosis to themselves: 'An incredibly personal decision'

Sometimes, news of celebrity deaths comes without warning — even when the cause is cancer.

Such was the case recently with Paul Reubens, whose death at the age of 70 came with an apology on Instagram, from the Pee-Wee Herman actor himself, “for not going public with what I’ve been facing the last six years.”

While it’s unclear who in Reubens's life knew and did not know about his illness, some famous friends expressed that they’d been shocked to hear about it, including the actress Daryl Hannah and the comic Kathy Griffin.

The singer David Bowie, the writers Nora Ephron and Jackie Collins and the actors Norm MacDonald and Chadwick Boseman also reportedly kept their cancer diagnoses quiet, as have plenty of nonfamous folks — whether because they believe it’s the “loving” thing to do, as one writer shared in an essay about his wife’s decision to keep her terminal illness from their kids, or, as another writer said of keeping her own breast cancer secret, to prevent the disease from becoming part of her identity.

In fact, research on the topic — including a study about men with prostate cancer and a small study comparing disclosure patterns between women and men (with men being more secretive) — “suggests there’s a whole variety of reasons” for keeping such a diagnosis private, says Kelcie Willis, a postdoctoral fellow in psycho-oncology at Mass General Cancer Center.

“Cancer is almost synonymous with uncontrollability,” Willis tells Yahoo about what often goes into decisions around disclosure. “And your choice sometimes gives you controllability in a very uncertain situation.”

Other considerations: Work, loved ones and self-identity

"The No. 1 thing to understand," says Leora Lowenthal, president of the international nonprofit Association of Oncology Social Workers, "is that this is an incredibly personal and individual decision, and for each individual, there are going to be multiple considerations. One may be what it means for them to be potentially defined or perceived in a different way."

She points out that these considerations can be even more extreme for famous folks.

"For a celebrity, the line one crosses to leave privacy is so explosive," she says. "I can’t even imagine what that would be like to know that if I mentioned to someone that I had cancer, it might show up on front pages. Because then, there’s really no turning back."

For any career-minded person, there might be some "worrying about protecting present and future employment possibilities," especially if you think people are "perceiving you as having limited time or limited capacity." For practical guidance around what to disclose at work, Lowenthal, who is a senior clinical social worker for the Dana-Farber Cancer Institute's Department of Psychosocial Oncology and Palliative Care, tells Yahoo she encourages people to "know your rights," and consult with guides such as those provided by Triage Cancer.  

But, she adds, "There's also the question of how it impacts your personal relationships."

Explains Willis, "People want to avoid burdening other people with their disease, and they want to kind of protect them," even if it means they are "sometimes cutting themselves out of social support that they could receive" as a result. Fear of this burden can be extreme when it is a question of telling not only spouses or partners, but elderly parents — and especially one's children.

Sometimes leaving certain people out feels necessary for self-protection. "We know patients with cancer have to find this balance of how much the disease consumes their life and how much they live a 'normal life,' and that’s always a tightrope," says Willis. It can be easy to get pushed off-balance by the needs or reactions of others.

"Patients talk all the time about how the people they would expect to step up in their lives sometimes don’t, while the ones they would least expect to step up are coming out of the woodwork and dropping off meals," she adds. While it's not always predictable, it's important to give serious thought to how people might react and how, in turn, that could affect your emotional state.

Lowenthal has observed among her patients that "Some might say, 'I want to have a few people know, so I can have support, but I don’t want everyone to know, because I don’t want people worrying and calling every five minutes asking how I am,' which … can actually heighten anxiety," she explains. "It’s hard to contain your experience and emotions around [the news] when you’re also trying to manage the experience and emotional response of people around you."

When deciding who to tell, she advises folks to "start small," with "a circle of people that you really feel comfortable and confident will respond [in a way that is] what you need. … You can always tell more people, but once you've told a lot of people, it’s hard to un-tell."

What about the loved ones left to grapple with the shock?

Says Lowenthal, "I might talk to a grieving family member and say, 'Try to understand that whatever choice they made, we’re going to guess they did it because it was right for them, and it was how they needed to do this.'"

It's something she says she learned on a personal level, when a relative went to visit other family members after learning of a terminal cancer diagnosis — and did not share the news. "She didn’t want them to know, because she didn’t want it to color the visit. And I imagine some family members wondered 'How could she not give us that chance to really say goodbye?'" Lowenthal said that doing so "was too painful" for her relative, and, "She didn't want the time together to be spent in sorrow or on goodbyes; she just wanted time with her loved ones."

She adds, "Ultimately, I don’t think we can ever know why someone chose to keep something a secret. But to me, it’s OK to honor the fact that each and every person can choose what is the best for them to manage and live with a cancer diagnosis. There’s such a loss of control … and keeping things private is a version of control."

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