The US defense secretary is facing scrutiny after he did not immediately disclose to the White House his recent prostate cancer diagnosis and 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 should disclose publicly about his health and when he should do so, mental health experts who work with patients who have severe diseases, such as cancer, let’s just say reticence is common — even in the age of oversharing online.
“I see it with my patients all the time,” said Dr. Andrew Esch, senior educational consultant at the Center to Advance Palliative Care, a national health care advocacy organization based in New York. “It’s very human not to want to have yourself open for the world to see.”
There are many reasons why people may 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 neuroscience at Cedars-Sinai in Los Angeles, especially in the first few days after diagnosis, when patients are overwhelmed with new information.
“There are different strategies we use to try to control things that are uncontrollable,” he explained. “A common mechanism we use is to split.” Although compartmentalization, or keeping certain thoughts and feelings separate, is often maligned, it is adaptive, Dr. Danovich said. For example, it can help people stay focused professionally even when the illness causes significant stress.
Dr Danovich warned, however, that if the compartments become too “deep and segregated”, they could prevent people from getting the treatment they need. He offered the example of a patient who doesn’t get follow-up work on a suspicious lump because it’s too stressful.
Others may struggle with how vulnerable it feels to disclose an illness, said Steven Meyers, professor and chairman 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 see being healthy and physically fit as very central to their role or identity,” she said. “These people will have much more difficulty publicly acknowledging that they feel diminished in self-esteem. These people will also be much more interested in being a burden to others.”
Cultural and generational norms can also influence the decision to disclose, said Dr. Jesse Phan, medical director of psychiatry and psychology at the Fred Hutchinson Cancer Center in Seattle. She said she had seen a general trend of younger people who had grown up immersed in social media opening up more readily about their diagnoses.
Mr Austin, on the other hand, who is 70, is “fiercely private”.
While experts were reluctant to define circumstances under which anyone “should” share, they said a number of factors could help influence the decision. Some strong arguments for disclosing a medical condition are related to protecting your health.
“I always validate a person’s desire for privacy, regardless of their reasons,” Dr. Phan said. “But I also explain that keeping their diagnosis completely secret or not being able to talk about it can actually make it harder for them to seek help when they need it — specifically, getting a ride to therapy or getting a a sympathetic ear when you’re stressed.”
Staying closed can also lead to social isolation.
“Loneliness has a profound impact on how well a patient can live with whatever illness they are 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, besides how keeping an illness private might affect personal well-being, is the right of others to know, Dr. Meyers said, which is not absolute.
“Not everyone needs to know all the details of anyone’s confidential medical condition,” he said. You may 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 after you’ve 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 “interested” when it comes to your life and well-being, or just a “spectator”? Viewers don’t have much of 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 family about a diagnosis, but not your entire social network.
“For those fortunate enough to have other people in their professional and personal lives to provide support, help and care, disclosure could be a very positive thing,” said Dr. Meyers. “But each person really needs to assess the psychological safety and practicality of being vulnerable.”