Why some people keep serious illnesses private
The US Defense Secretary is under scrutiny after failing to immediately disclose his recent prostate cancer diagnosis and related hospitalization to the White House, a breach of protocol for which he has apologized.
But while Secretary Lloyd J. Austin III, as a member of the Cabinet, has certain expectations about what he should publicly reveal about his health, and when he should do so, mental health experts who work with patients with serious illnesses, such as cancer, say restraint is common – even in the age of online oversharing.
“I see it all the time in my patients,” says Dr. Andrew Esch, senior educational consultant at the Center to Advance Palliative Care, a national health care organization based in New York City. “It’s very human not to want to be exposed to the world.”
There are many reasons why people may choose to keep their illness to themselves in certain contexts, experts say, but some are more common than others. Privacy can be a coping strategy, said Dr. Itai Danovitch, chairman of the department of psychiatry and behavioral neuroscience at Cedars-Sinai in Los Angeles, especially in the first days after a diagnosis, when patients are inundated with new information.
“There are different strategies we use to control things that are out of control,” he explained. “A common mechanism we use is compartmentalization.” Although compartmentalization, or keeping certain thoughts and emotions separate, is often maligned, it is adaptive, Dr. Danovitch said. For example, it can help people stay professionally focused even when illness causes significant stress.
Dr. However, Danovitch warned that if the compartments became too “deep and separated,” it could prevent people from receiving necessary treatment. He gave the example of a patient who does not have a follow-up examination for a suspicious lump because it is too stressful.
Others may struggle with how vulnerable it feels to have an illness exposed, says Steven Meyers, professor and chairman of the department of psychology at Roosevelt University in Chicago. They may discover that there is a stigma attached to their diagnosis, which leaves them open to pity.
“Some people see being healthy and physically able as very central to their role or identity,” he said. “Those people will have much more difficulty publicly acknowledging that they feel diminished in their judgment. These people will also be much more concerned about being a burden to others.”
Cultural and generational norms can also influence the decision to make information public, said Dr. Jesse Fann, medical director of psychiatry and psychology at the Fred Hutchinson Cancer Center in Seattle. He said he had seen a general trend where younger people who had grown up steeped in social media were opening up more easily about their diagnoses.
In contrast, Mr. Austin, who is 70 years old, is “fiercely private.”
While the experts were reluctant to prescribe circumstances under which someone should share, they said certain factors could help influence the decision. Some strong arguments for disclosing a medical condition involve protecting your own health.
“I always validate someone’s desire for privacy, whatever the reasons,” said Dr. Fann. “But I also explain that keeping their diagnosis completely secret, or not being able to talk about it, can actually make it more difficult for them to ask for help when they need it – very specifically: getting a ride to treatment or getting a listening ear when you are stressed.”
Keeping your lips tight can also lead to social isolation.
“Loneliness has a profound impact on how well a patient can live with any illness,” said Dr. Esch. “The burden of secrecy really contributes to a lot of stress, a lot of anxiety and depression.
But another consideration, besides the way keeping an illness private can affect personal well-being, is other people’s right to know, said Dr. Meyers, which is not absolute.
“Not everyone needs to know all the details of someone’s confidential medical condition,” he said. You can mention an illness to a friend, but not go into the details of your treatment; or you can talk to your employer about a life-changing diagnosis, but only after you’ve had some time to discuss the long-term plan with your doctor. (In general, most employees are not needed to share personal health information.)
Dr. Meyers recommends asking yourself: Is the person a “stakeholder” when it comes to your life and well-being, or just an “observer”? Spectators don’t really have a “right to know,” he said, while stakeholders will be affected and that should be taken into account.
In other words, you may want to tell your immediate family about a diagnosis, but not your entire social network.
“For those who are fortunate enough to have other people in their work and home lives who would provide support, help and care, disclosure could be a very positive thing,” said Dr. Meyers. “But each individual really needs to assess psychological safety and the practical aspects of vulnerability.”