Gene Wilder didn't want anyone to know he had Alzheimer's disease.
It was only after he died at 83 from complications of the illness that his family revealed the beloved Hollywood entertainer's secret. "The decision to wait until this time to disclose his condition wasn't vanity, but more so that the countless young children that would smile or call out to him 'there's Willy Wonka,' would not have to be then exposed to an adult referencing illness or trouble," Wilder's family said in a statement.
"He simply couldn't bear the idea of one less smile in the world."
It was the sort of selfless sentiment that seemed to befit Wilder, a lovable and hilariously neurotic icon of so many childhoods. It also revealed the delicate calculus that famous people have to make when confronted with a terminal illness: How much do they want the world to know?
Wilder wasn't the only public figure who chose to keep his diagnosis private. Fans of David Bowie were stunned when the iconic musician died of liver cancer in January; he had told only his closest family and friends that he was sick. Writer and director Nora Ephron, who died of leukemia in 2012, didn't even alert some of the friends she'd chosen to speak at her memorial service. The public had no idea that comedian Robin Williams had suffered from Lewy Body dementia until months after his death in 2014.
For devoted fans who feel a powerful bond with a cherished idol, such sudden news can leave them reeling.
"For all of us who love Gene Wilder and other famous people who died, it's a shock," says Maureen Keeley, a professor of communications studies at Texas State University and the co-author of Final Conversations: Helping the Living and the Dying Talk to Each Other.
Faced with their mortality, she says, one of the most important choices a person can make is whom to share the experience with, and how to share it.
"And that's when you have the most valuable, meaningful conversations with those you love," she says. "And that's who you want to say goodbye to, that's who you want to share those final days with - those who truly know you at your core."
Fans, no matter how devoted, may not make the list - and that's appropriate.
"The reason we're all in shock is because we're not invited into that very private world," Keeley says. "And I understand us wanting to be, but we should not be."
This may sound obvious on the one hand - of course we don't have a personal connection to a celebrity, no matter how their work may have touched us - but it can still feel jarring to fans who are accustomed to following every detail of a favorite celebrity's life: whom they're dating, what they're wearing, how they raise their kids. Many pop culture figures are increasingly open about deeply personal experiences, including serious illnesses: Jamie Lynn-Sigler has spoken publicly about her battle with multiple sclerosis. Selena Gomez has talked about what it's like to undergo chemotherapy for lupus. When Patrick Swayze was dying of pancreatic cancer, he took the opportunity to spread awareness of the disease.
But other high-profile figures simply want no part of that.
Ephron's son, Jacob Bernstein, wrote in the New York Times that his mother had considered telling friends and colleagues about her leukemia but feared the effect that it might have on her career - that getting a movie made or developing a Broadway play would become impossible. She wanted to keep working, he wrote.
It went deeper than that, too: "What my mother didn't want was to have her illness define her, turning every conversation into a series of 'how are you?'s," he wrote.
When Ephron died, even some of her close friends were shocked. Oscar-winning actress Meryl Streep shared her disbelief in a eulogy at Ephron's memorial service.
"She pulled a fast one on all of us," she said. "It's really stupid to be mad at somebody who died but somehow I have managed it."
When Bowie died, some of his longtime friends were similarly stunned. Producer Brian Eno said that Bowie's death was a "complete surprise"; but in retrospect, he said, there were subtle clues in the final email he received from Bowie.
"It was as funny as always, and as surreal, looping through word games and allusions and all the usual stuff we did. It ended with this sentence: 'Thank you for our good times, brian. they will never rot'. And it was signed 'Dawn'," Eno said. "I realise now he was saying goodbye."
For a person who's dying, deciding whom to tell and how to tell them "is the only thing they can control," Keeley says. And disclosure might come with a burden: People might expect a "big, profound" conversation, she says - "especially someone like Nora Ephron, who was so profound" - and that's a lot to ask of someone who doesn't feel well and is dealing with their own complicated feelings.
"Some people want to protect themselves," she says. "It can be a lot of pressure."
It can also be about preserving an identity they've worked their whole lives to create. For celebrities like Williams, who had suffered debilitating symptoms of Lewy body dementia before his death, or Prince, who had long struggled with chronic pain, keeping their conditions secret was a way of protecting their public image.
"Disease robs us of who we are, and if you're a public figure, the more you can hide that from people, why wouldn't you?" Keeley says. "It's not what you want to be remembered for."
Which may be another reason why Wilder chose to keep his Alzheimer's private. He wanted to protect the joy of inquisitive children; he may also have wanted to protect himself.
"It's hard when a loss is sudden, but fans do have a way to say goodbye - they can tweet out a message, they can go on Facebook, they can download Prince's music," Keeley says. "They can go watch Gene Wilder's movies again, and remember him. And that is a way to process their sadness and their grief. Because he has already given us as much as he can."