The US 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 apologized.
But while Secretary Lloyd J. Austin III, as a member of the Cabinet, faces certain expectations about what he should publicly disclose about his health, and when, mental health experts who work with patients who have serious illnesses, such as cancer , say reticence is common, even in the age of excessive online sharing.
“I see it with my patients all the time,” said Dr. Andrew Esch, senior educational advisor at the Center for the Advancement of Palliative Care, a national health care advocacy organization based in New York City. “It’s very human not to want to be skinned for the world to see.”
There are many reasons why people might choose 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, chair of the department of psychiatry and behavioral neurosciences at Cedars-Sinai in Los Angeles, particularly in the early days after a diagnosis, when patients are inundated with new information.
“There are different strategies that we use to try to control things that are uncontrollable,” he explained. “A common mechanism we use is compartmentalizing.” 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 an illness causes them significant stress.
However, Dr Danovitch warned that if the compartments become too “deep and spread out”, they could prevent people from receiving the necessary treatment. He offered the example of a patient who does not undergo follow-up testing on a suspicious lump because it is too stressful.
Others may struggle with how vulnerable it feels to disclose an illness, said Steven Meyers, 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 consider being healthy and physically capable to be very central to their role or their identity,” he said. “Those people will have a much harder time publicly acknowledging that they feel diminished in their estimation. Those people will also be much more concerned about 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 Fred Hutchinson Cancer Center in Seattle. He said he had seen a general trend of younger people who had grown up immersed in social media opening up more easily about their diagnoses.
Mr. Austin, on the other hand, who is 70, is “fiercely reserved.”
Although 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 related to protecting your own health.
“I always validate a person’s desire for privacy, whatever their reasons,” Dr. Fann said. “But I also explain to them that keeping their diagnosis completely secret, or not being able to talk about it, can actually make it harder for them to ask for help when they need it; very specifically, getting them to take them to treatment or someone to listen to them sympathetically when you are stressed.”
Keeping your mouth shut can also lead to social isolation.
“Loneliness has a profound impact on how well a patient can live with whatever illness they have,” Dr. Esch said. “The burden of secrecy really contributes to a lot of stress, a lot of anxiety and depression.
But another consideration, besides 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 everyone needs to know every detail of someone’s confidential medical condition,” he said. You could disclose 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 once you’ve had time to discuss the long-term plan with your doctor. (Generally speaking, 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 simply a “spectator”? Viewers don’t have much of a “right to know,” he said, while stakeholders will be affected, and that needs to be considered.
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 personal lives who would provide them with support, assistance and care, disclosure could be quite a positive thing,” Dr. Meyers said. “But each individual really has to evaluate the psychological safety and practicalities of being vulnerable.”