Shelly Parpart was a 37-year-old married mother of two when she received her pancreatic cancer diagnosis. The night it was confirmed, she and her husband, Randy, sat down their sons, then 8 and 6, to deliver the news.
Then Randy called their parents, their siblings and their closest friends to let them know. That Sunday, Randy also told their Bible study group at church. Both of them posted about her diagnosis on Facebook, and Shelly’s sister started a blog.
“I wanted people to know, and I also wanted them to start praying for us and the boys,” Randy recalls.
Daniel Trent was 52 and single when he learned he had ALS. He told nobody—not his girlfriend, not his parents, not the employees he managed at a local chain restaurant —for more than a year.
“I just wanted to be normal and not the sick guy for as long as possible,” says Trent, who is now mostly paralyzed.
How, when, and to whom you disclose the news is among the most personal and sometimes challenging parts of learning you have a life-threatening illness.
Jeopardy! host Alex Trebek chose perhaps the most public manner possible this week, an elegant three-minute YouTube video viewed more than 3.6 million times so far in which vowed to fight his Stage IV pancreatic cancer. The family of former Mets star pitcher Tom Seaver also chose to reveal a dementia diagnosis this week.
On the other hand, even many close friends of Oscar-nominated screenwriter Nora Ephron knew nothing of her illness until after she died in 2012 from complications of acute myeloid leukemia.
“Each person is an individual, and each person makes a decision that they’re most comfortable with,” says Len Lichtenfeld, an oncologist and interim chief medical officer for the American Cancer Society.
No longer taboo
The culture has, of course, made dramatic strides since Lichtenfeld left medical school in the 1970s, a time when even uttering the word “cancer” was taboo. Nowadays, it’s generally not stigmatized because people started talking about it frankly in public, he says.
“Our willingness to talk about cancer opens up the opportunity for others to offer support, help and encouragement in very real and genuine ways,” says Lichtenfeld, whose organization offers a primer on how to tell people on its website.
“That support can be incredibly valuable,” he says. “Failure to disclose may prevent you from accessing an incredible depth of concern and compassion that comes from family, friends and communities.”
Celebrities who disclose, especially before they become incapacitated, can do a lot to educate the public and encourage people to watch out for the disease.
Former First Lady Betty Ford, for instance, is widely credited with breaking the public’s silence about breast cancer. Ronald Reagan’s letter informing the public about his Alzheimer’s diagnosis, Katie Couric undergoing a televised colonoscopy after her husband died from colon cancer, and Michael J. Fox’s willingness to become the face of early-onset Parkinson’s helped raise awareness of, not to mention millions of dollars for, those diseases.
Trebek’s video, many hope, may bring attention to the fact that research funding is needed to create a way to screen for pancreatic cancer. The game show host, like most people with the disease, discovered he had it when it had progressed to an incurable stage.
“It’s impressive that someone takes the time to tell people and now it will have a news media blitz and people will talk about how you can’t really screen for it, how we need better treatment,” says Dr. Andrew Coveler, director of the Pancreatic Cancer Specialty Clinic at the Seattle Cancer Care Alliance, part of the University of Washington. “That makes it a worthwhile statement.”
But if you’re not famous…
For the less famous, though, there can be some downsides to widespread disclosure. One is the actual experience of repeating the details and having the same conversations. Coveler says the patient can delegate the task, as Shelly Parpart did by having her husband do it.
Writing in a public forum such as Facebook can also be tricky.
Friends and acquaintances are likely to chime in with advice, unintentionally insensitive remarks and sometimes unwanted religious sentiments.
And some cancers do still have some social stigmas; a person with lung cancer, for instance, may face comments about their history of smoking. That’s if they smoked: close to 20% of people with lung cancer never smoked.
“A lot of people don’t know what to say when they find out that someone they care about has a serious diagnosis, so they feel nervous and then a cliché will come to mind,” says medical writer Michelle Whitmer, who lost her father to cancer in 2016.
“Sometimes the clichés can be interpreted as cold,” she says. “Sometimes you don’t get back from people what you want—or you don’t know what you want.”
Lichtenfeld agreed that that can be overwhelming. Suddenly, people in your social network have suggestions about what you should do, from clinics to diets to experimental treatments.
“It can add to the burden,” he says. “Some patients will sit there and say, ‘What do I do with all of this?’ ”
Who you tell
Randy Parpart, whose wife died in 2013, says he didn’t mind that deluge. He would just say, “You care enough to bring something to me. Thank you for letting me know. We’ll look into it. But we’re going down the path of what medicine shows us.”
Who you tell also may depend on where you are in your life and career.
Trent isn’t married, has no children and lives 2,000 miles from his parents, so there were fewer people in his immediate vicinity to tell. And he didn’t want to be perceived differently, especially while he was still capable of performing his job just fine.
Similarly, Garrett Arleo, 24, was once very casual about telling people about his mycosis fungoides, a rare T-cell lymphoma that has remained in check for several years thanks to thrice weekly radiation treatments.
Arleo was an 18-year-old college freshman when he was diagnosed and figured his friends, classmates and co-workers ought to know why he had to go for treatments so often.
That changed a couple of years ago when a friend in human resources at a previous job suggested he could be passed over for promotions—and never even know it—if the boss thinks, for example, that he may require a lot of sick leave.
Arleo took the advice to heart and hasn’t told his boss at his new job.
“I had to leave work early for a biopsy yesterday, and I didn’t tell him why,” he says. “I just told him I had a doctor’s appointment. I don’t want a perception that could be the breaking point of why I don’t get a job.”
The important thing in deciding to disclose, Whitmer says, is that people do it for the right reasons and because they really want to do so.
Nobody is owed information about anyone else’s health crisis, and people with illnesses need to be clear about what they will and won’t discuss.
“There’s a lot of people-pleasing going on in our culture,” she says. “A lot of people do things to remain in good standing with those they care about. I just want people to give that same respect and kindness to themselves. If they feel like they don’t want to tell somebody or they don’t want to tell the Internet, then that’s OK.”