Tuesday, October 15

Lloyd Austin’s Hidden Diagnosis: Why Some People Keep Serious Illnesses Private

The U.S. defense secretary is facing scrutiny after failing to immediately disclose to the White House his recent prostate-cancer diagnosis and a related hospitalization, a breach of protocol for which he has apologized.

But while the secretary, Lloyd J. Austin III, as a cabinet member, faces certain expectations about what he must disclose publicly regarding his health, and when he should do it, mental health experts who work with patients who have serious illnesses, such as cancer, say that reticence is common — even in the era of oversharing online.

“I see it with my patients all the time,” said Dr. Andrew Esch, senior education adviser at the Center to Advance Palliative Care, a national health care advocacy organization based in New York City. “It’s very human to not want to have yourself sort of flayed open for the world to see.”

There are many reasons people might opt to keep their illness to themselves in certain contexts, experts said, 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 neurosciences at Cedars-Sinai in Los Angeles, particularly in the early days following a diagnosis, when patients are deluged with new information.

“There are different strategies we use to try and control things that are uncontrollable,” he explained. “One common mechanism that we use is to compartmentalize.” Though compartmentalization, or keeping certain thoughts and emotions separate, is often maligned, it is adaptive, Dr. Danovitch said. For instance, it can help people to stay focused professionally even when illness is causing significant stress.

Dr. Danovitch cautioned, however, that if the compartments became too “deep and separated,” they could prevent people from getting necessary treatment. He offered the example of a patient who does not get follow-up testing on a suspicious lump because it is too stressful.

Others may struggle with how vulnerable it feels to reveal an illness, said Steven Meyers, a professor and chair of the psychology department at Roosevelt University in Chicago. They may find that there is a stigma attached to their diagnosis that will leave them open to pity.

“Some people view being healthy and physically capable as being very central to their role or their identity,” he said. “Those people will have a lot more difficulty in publicly acknowledging feeling diminished in their estimation. Those people will also be much more concerned with being a burden to others.”

Cultural and generational norms can also influence the decision to disclose, 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 of younger people who had grown up steeped in social media opening up about their diagnoses more readily.

Mr. Austin, on the other hand, who is 70 years old, is “fiercely private.”

Though the experts were reluctant to prescribe circumstances under which anyone “should” share, they said certain factors could help influence the decision. Some powerful arguments for disclosing a medical condition are tied to protecting your own health.

“I always validate a person’s desire for privacy, whatever their reasons,” Dr. Fann said. “But I also explain that keeping their diagnosis fully secret, or not being able to talk about it, may actually make it harder for them to ask for help when it’s needed — very concretely, getting a ride to treatment or getting a sympathetic ear when you’re stressed.”

Remaining tight-lipped can also lead to social isolation.

“Loneliness has a profound impact on how well a patient can live with whatever illness they’re living with,” Dr. Esch said. “The burden of secrecy really contributes to a lot of stress, a lot of anxiety, and depression.

But another consideration, in addition to how keeping an illness private might affect personal well-being, is other people’s right to know, Dr. Meyers said, which is not absolute.

“Not everybody has to know all the details of anybody’s confidential medical condition,” he said. You might reveal an illness to a friend, but not go into the details of your treatment; or you might talk to your employer about a life-changing diagnosis, but only once you have had some time to discuss the long-term plan with your doctor. (Generally speaking, most employees are not required to share personal health information.)

Dr. Meyers recommends asking yourself: Is the person a “stakeholder” when it comes to your life and your well-being or merely a “spectator”? Spectators do not have much of a “right to know,” he said, whereas stakeholders will be affected, and that should be considered.

In other words, you might want to tell your immediate family about a diagnosis, but not your whole social network.

“For those who are fortunate to have other people in their work lives and personal lives who would provide support, assistance and care, disclosure could be something quite positive,” Dr. Meyers said. “But each individual really has to assess the psychological safety and the practicalities of being vulnerable.”