One of the clearest signs of how much stigma is attached to schizophrenia is the fact that most of those who have come out in the open about their disease have waited until their careers were well-established.
That's certainly the case with two of the best known "public" schizophrenia patients in America -- psychologist Frederick Frese and law professor Elyn Saks.
Mr. Frese, 72, a psychiatry professor at Northeastern Ohio Medical University, has given hundreds of speeches about his schizophrenia, but noted he did not "come out of the closet" until 1985, when he was in his 40s.
Ms. Saks, 57, was already a tenured professor at the University of Southern California when her highly praised memoir, "The Center Cannot Hold," hit bookshelves in 2007. [The New York Times published her essay "Successful and Schizophrenic" on Sunday.]
Despite his frank and often funny candor about his disease, Mr. Frese sounded a cautionary note when speaking in November to the American Psychiatric Nurses Association convention in Pittsburgh.
"When I first became open about this," he said, "I got lots of letters telling me how much courage I had. Well, let me tell you something, my fellow professionals: There is a very fine line between courage and stupidity. And if you are younger, the facts of life are that you in great likelihood will cut off career opportunities if you are not careful. And remember -- once you reveal, it gets real tough to unreveal the fact that you have this disorder."
"You don't want people to feel ashamed," Ms. Saks said in an interview last year, "but the reality is, there's a huge amount of stigma."
Both of them are extremely articulate at describing what schizophrenia feels like from the inside, he in his public talks and she in her vividly written autobiography.
Mr. Frese was a 25-year-old Marine who had finished a tour of duty in Southeast Asia during the Vietnam era when he suffered his first psychotic break, in 1966.
He was living near Washington, D.C., when a single obsessive idea began to take over his mind. He had seen "The Manchurian Candidate," a movie in which a soldier is brainwashed to become an assassin, "and in my mind I blew this up to the idea that we should have been winning the Vietnam War and the only reason we weren't was that the enemy had a sophisticated hypnotizing weapon.
"Of course, when I went to share that with the psychiatrist, he invited me to stay," he said with deadpan humor.
That was the first of several hospitalizations for Mr. Frese over the next few years. In between his psychotic episodes, though, he managed to get a college degree, learn Japanese, and eventually, get a Ph.D.
A year after his first breakdown, while working in Milwaukee as a young liaison to Japanese clients for a company, Mr. Frese became obsessed by the number three.
"I learned the Japanese are suspicious about the number four, and that's when I paired that breakthrough with seeing all these steeples dedicated to the Holy Trinity and so the number three became my hyper-rational focus. I would be walking up the street and I would stop when a light turned red even though I was in the middle of the block because it had three-ness."
One Sunday, he went into the historic Church of the Gesu on the campus of Marquette University. After sitting in a back row, he suddenly was convinced that he needed to help lead Mass and walked down the aisle, knelt next to the priest, and began to speak.
"He started kicking me under his garment saying he was going to call the police," and the next thing Mr. Frese remembers, he was being taken to an ambulance for another trip to the hospital.
After being released, he drifted around the country over the next 18 months, bouncing in and out of psychiatric wards, until he was picked up on the streets of Columbus, Ohio. That led to a commitment hearing.
"In the court, the psychiatrist asked me if I had ever been in a psychiatric hospital, and I said, 'Yes I've been in five of them, and I was in Bethesda Naval Hospital for five months,' " Mr. Frese told the nurses convention last year.
"And the psychiatrist began to smile, and I said, 'Why are you smiling?' and he said, 'We're smiling because five months is not very long at all. You see' -- and here Mr. Frese struggled to regain control of his voice -- 'you see, you have a degenerative brain disease called schizophrenia,' and at that, the magistrate banged his hammer down and said, 'I hereby declare you to be an insane person under the laws of the state and remand you indefinitely.'
"That was not a real good day for me."
As it turned out, his military service entitled him to go into the Veterans Affairs hospital system, and after his release he became a psychologist in the Ohio prison system.
Through all of his psychotic breakdowns, Mr. Frese has never heard voices.
Instead, he has been filled with mental compulsions he couldn't resist.
"My experience is that when one is in psychosis, you're on a mission and nothing is going to stop you. At some level your brain is telling you you probably shouldn't be doing this, but you're on a mission."
Ms. Saks also did not hear voices as such, but her schizophrenia filled her with frightening, paranoid feelings, and her thinking and speech became disorganized in a way that some psychiatrists call "word salad."
She described one of those incidents in her book, at a time when she was a student at Yale Law School.
She had gone to the library to work on a law school memo but couldn't concentrate. Panicked, she went to her professor's office to wait for him.
She asked him for an extension because "the memo materials have been infiltrated. Jumping around. I used to be good at the broad jump. Because I'm tall. I fall. Is anyone else in this room? It's a matter of point. There's a plan. People put things in and then say it's my fault. I used to be God, but I got demoted. Are you God?"
The professor was kind and calm, but later that day she entered Yale-New Haven Hospital.
Despite periodic breakdowns like this one, Ms. Saks managed to get through her studies in Greek philosophy at Oxford University, the Yale Law School curriculum, and -- eventually -- to be hired as a faculty member atUSC, where she has remained.
In her book and an interview, she cited three pillars that enabled her to cope with her illness: good medication, regular psychoanalysis and a loving husband and friends.
The drug that turned her life around is clozapine, which many psychiatrists consider the most effective antipsychotic medication on the market. Until she began taking it, Ms. Saks sincerely believed that other people had the same kind of paranoid thoughts she did but were simply better at hiding them.
While many psychiatrists now reject psychoanalysis, she has found it vitally helpful. "Stress is bad for all illnesses, and analysis can help identify and cope with stressors," she said.
When she decided to publish her book six years ago, she remembers one colleague asking her with worry, " 'Do you want to become known as the schizophrenic with a job?' But, in fact, the reaction has been overwhelmingly positive and kind and lovely. I get a lot of emails thanking me for telling my story."
At the same time, she noted that she is involved in a study now of about 20 people with schizophrenia at her campus and the University of California at Los Angeles, and while several of them have Ph.D.'s and M.D.'s, most aren't willing to talk openly about their disease.
Neither of them is "cured."
Ms. Saks said the main benefit of her drugs is that "my psychotic episodes are farther apart and less intensive."
Mr. Frese said he has never had to go back into the hospital, largely thanks to a wife who can say, "Fred, I think you need an extra pill right now."
But, periodically, he still has psychotic breaks.
"I've had these often enough over the years that I know to just take off from work, sing and dance and eat raw acorns and synthesize the world's religions for a week or two, and then I'm back."
Mark Roth: firstname.lastname@example.org or 412-263-1130.