PHOENIX—Some stories of the mentally ill have a happy ending. Most don’t. Medical advances make it possible for many people to function in the world instead of undergoing institutionalization. But many seriously mentally ill people don’t follow prescriptions for a simple reason: They don’t realize they’re ill.
Anosognosia, or lack of insight, is not the same as denial, which is a psychological impairment. Instead, it’s caused by damage to the brain. About half of the seriously mentally ill have anosognosia. To be forced to take medicine that makes them feel terrible, when they don’t even believe they’re sick, is torture. Many refuse, lie, spit, or even throw up to avoid medication.
I agreed to use only the first letter of T’s name. A 28-year-old Arizonan with bipolar disorder, she described what it’s like to have anosognosia: “I thought everything that I was thinking was completely true and accurate, but I was just completely delusional.”
She remembers most of her paranoid hallucinations. Her first real psychotic break was in 2004, when she was a 19-year-old “typical cool chick” with a job and a car. Her symptoms dawned one weekend before Mother’s Day: “I couldn’t sleep for probably two or three nights. I was shaking uncontrollably, I hadn’t eaten in a while, and I was really anxious and my heart was racing.” She finally ran to the nearest gas station in just a T-shirt and underwear, screaming and crying that her father wanted to kill her.
Such episodes continued. During the worst ones even her father, a large man, couldn’t restrain her. She and her father once tussled and toppled onto the floor. He sat on top of her, struggling to hold her down as she screeched and flailed around. She pulled off her father’s glasses and scratched his eye. The police came and led her away in handcuffs. T said, “When the cops came, I was completely shocked that I was the one being put in handcuffs. I was like, ‘What’s going on? He attacked me!’ I was just completely thrown.”
During T’s first hospitalization the nurses gave her an anti-anxiety medication, which finally put her to sleep. Her drug tests came out clean. Because she was a nonconsenting adult and not yet a danger to self or others, the doctor couldn’t legally send her to the urgent psychiatric care center. She was taking up precious bed space and was calmer after 13 hours on medication, so the doctor discharged her and advised T’s mother, “Just be supportive.”
It took eight very tiring, very miserable years for T finally to gain insight into her bipolar disorder. She’s among the one-third of those with anosognosia who recover awareness after proper medication. When I visited T and her parents one evening, she sat relaxed and chatty in their living room, in front of the same TV from which they once watched the Tucson shooting news.
T can’t say she’s cured, because mental illness is a chronic condition. But she now willingly takes her medicine daily, in part due to her stints at the psychiatric ward, where she remembers seeing deranged female patients drooling over their gowns with hair uncombed and bushy. “I’m still a young woman. I care about how I look, and I never ever want to look that way,” T said. Her mother reminded her, laughing, “Trust me, you used to look that way.” T recalled her first lucid thought after she received medicine in the hospital: “I really wanted to brush my teeth.”
THAT'S A SUCCESS STORY, at least for now, but other parents see no light at the end of their tunnels. Sylvia Charters of Phoenix, Ariz., says of her son, now 36, “The Jason I raised is gone. There’s a new Jason now.” Jason Charters is a tan, big-sized man with heavy-lidded eyes and a nice smile. He loves the beach and dreams of living in California. He was once a Mr. Social who played soccer for 13 years, loved school, surrounded himself with friends. Not too long ago, he told his mom he wanted to be a pastor and help the homeless. Then he suffered a psychotic break.
That break makes Jason a special case. Most people with bipolar disorder and severe psychosis like Jason’s show symptoms in their late teens or early adulthood. Jason developed his when he was 34 and had just lost his job as a security guard. He was back home living with his parents, planning to get a new job and his own apartment.
One night Sylvia heard something in the house and got up. She found her son sprawled on the floor, crawling on his elbows. “Mom!” he hissed at her. “Get down, get down! The FBI’s outside, people are shooting on us, spying on us. Get down, get down!”
Sylvia dropped onto her knees next to him with a sense of doom: “Oh my God. Something is wrong with him.” She told him to stay still, then ran to her husband. “Help! Call the police! Something’s wrong with Jason!” By the time they got him to the emergency room at a nearby hospital, Jason believed he was the president. The clinic they entered was familiar with psychosis but didn’t have a psychiatric ward, so doctors sent Jason to a county psychiatric unit.
Within those two years, Jason has been hospitalized 33 times, and his parents petitioned for court-ordered treatment nine times. Each time he was sent home after a short stint in the clinic. Sylvia is now 63, too old to be her son’s keeper. And with her small frame, it’s dangerous for her to be with her son alone, especially at night when the mania typically heightens. “Each day was hell,” Sylvia said.
She remembers waking up one day to face a Teddy bear hanging from a noose. She and her husband searched Jason’s room and found knives under his mattress. One time he shoved her out while she was driving because he suddenly realized she was taking him to the hospital. He left her in the dark streets, dumped her purse out into the bushes, and sped away toward California until the car ran out of gas. Another time he cornered Sylvia in the hallway and was just about to punch her when his father happened to walk by and pull him away. That was the day the Charters decided Jason couldn’t stay home anymore.
Now Jason sleeps in an apartment with another mentally ill man for a roommate. They live in a 300-unit complex, with 12 units set aside for individuals with serious mental illness. Some of these outpatients have families who visit. Most don’t. Either way, they are given a room with a bare mattress and asked to take care of themselves. Arizona Behavioral Health Services staffers monitor the mental illness units: Their primary duties involve knocking on doors, asking “Did you take your pills today?”—and checking off a form that they did. Many of the residents lie because of anosognosia, and no one looks further. This is a common model of treatment pushed by community mental health centers: Let the patients feel “hope” and “empowerment” as they drive their own recovery.
And here’s the result: Sylvia once found her son unshaved and rumpled in three-days-old clothes. He clearly wasn’t taking his pills. His bathroom was so disgusting that he refused to use it. Sylvia complained to the nurse, complained to his psychiatrist, complained to anybody she could. They gave noncommittal responses. “They just saw me as another whining mommy,” Sylvia said.
Now Sylvia picks up Jason in the morning, feeds him breakfast, takes him to the clinic to pick up his medicine, and makes sure he takes it. He then feels sleepy and dozes in the afternoon. When he wakes up, Sylvia feeds him dinner, then drops him off at the apartment. She knows her situation is ridiculous, but says, “Every state document says these three words: Strong family support, strong family support. … He doesn’t get any help because they shove those words on us. That’s not right. He’s an adult. They should be grooming him for independence. We’re older now. Who’s going to take care of him?”
Later I met Jason. He came out of his room blurry from his afternoon nap, perspiring from the day’s sizzling temperature. Though he was reluctant to talk, he sat next to me on the couch and placidly let the dog lick him all over. “I’m not getting no help,” he told me. “My future? I don’t see a future.” At least he now has some insight regarding his illness, and has been taking his medications daily because he knows he needs them. But now that he’s gained some awareness, Jason is also able to realize despair, loneliness, and loss. Medicine has freed him from paranoia and delusions, only to enslave him within a rational sense of fear and pain.
Sylvia said she’s deeply disappointed by the lack of help churches have given her: “You go to a church because you’re broken, and this is just another brokenness. We are parents going through a grieving, and there’s no one there for us.” After Saddleback Church’s Rick Warren’s son killed himself due to clinical depression, Sylvia went to her church leaders and asked them to create a support group for mental illness awareness and assistance. They said they leave mental illness to the professionals. She asked two other big churches for help. They also said no. She wants Jason to have “a male mentor, someone who will push him in baby steps.” She hasn’t found one.
WHILE SYLVIA and millions of others despair, Americans spend billions on mental health: $135 billion in 2010, according to the Substance Abuse and Mental Health Services Administration (SAMHSA). The money comes from state and county funds, Medicaid and Medicare, private insurance, various other private and nonprofit programs, and individual out-of-pocket payments. But D.J. Jaffe, executive director of Mental Illness Policy Org., says money often goes to programs under the elastic scope of “mental health” that includes yoga classes, basic computer skills tutoring, counseling for bullied kids, and anti-stigma campaigns. The most severely ill—those with schizophrenia, bipolar disorder, and severe depression— are often left out.
SAMHSA and the Center for Mental Health Services (CMHS) are major culprits, many caregivers believe. Each year, SAMHSA shifts about $460 million in block grants to CMHS, but when Rep. Tim Murphy (R-Pa.), also a psychologist, spent a year with his Subcommittee on Oversight and Investigations to follow the money and examine the actual spending, he concluded: “[T]oo many of these grants are directed to advancing services rooted in unproven social theory and feel-good fads, rather than science.”
At a hearing last year psychiatrist Sally Satel, a former member of the CMHS National Advisory Council, testified that SAMHSA and CMHS follow a misguided ideology that “supports activities that actively sabotage [the seriously mentally ill’s] welfare.” Their practices, she said, “either condemn the use of medications or are hostile to formal psychiatric care.”
Two days before the first anniversary of the Newtown shooting in December, Murphy unveiled legislation he says will fix the “broken” mental health system. The Helping Families in Mental Health Crisis Act, if passed, will appoint a new assistant secretary for mental health and substance abuse disorders. The appointee must be a medical professional who will advocate research and evidence-based models of care on a federal level.
The bill also aims to facilitate access to direct, primary treatment. It proposes modernizing laws that prevent mental health professionals from sharing vital information with parents and caregivers of mentally ill patients. It allows grants only to centers in states that allow involuntary treatment and assisted-outpatient treatment, and also cuts off taxpayer dollars that previously funded anti-psychiatry, anti-treatment organizations.
The Affordable Care Act (Obamacare) will bring more patients into the already strained mental health system, and Vice President Joe Biden recently announced that the federal government will send $100 million more to existing mental health facilities and mental health services at community health centers. But how does more money help, when the existing mental health system is a failure?
Jaffe, who calls himself “a superliberal—as liberal as you can get,” said when it comes to mental illness, “the conservatives seem to understand mental illness better.” He says that, other than Tim Murphy, “most politicians don’t understand the difference between improving mental health and treating mental illness.” His bottom line: “Nobody really cares about the serious mentally ill. And I don’t see that changing.”
HAVE CHURCHES SHOWN they really care? Not according to research by Baylor University professor Matthew Stanford. His 2007 survey of 293 Christians who approached their local church for assistance on personal or a family member’s mental illness found that 60 percent of participants felt abandoned by the church, 19 percent were told mental illness is due to personal sin or a lack of faith, and 21 percent were told that it’s demonic.
The relationship between serious mental illness and sin is complicated. Mental illness has a physical component, but since it afflicts human beings it also has spiritual dimensions. Christians often deny the physical aspect. Stanford said “a majority of churches are denying” mental illness and sometimes covering it with an “ugly spiritual crust” by attributing everything to spiritual issues and refusing to take into account physical factors.
A Baylor survey in 2008 of church members with mental illness in their families showed about three in five saying their church was not involved at all in the problem. The other two-fifths said their church is “a little” (18.8 percent) or “somewhat” (17.6 percent) or “a great deal” (5.9 percent) involved, but many said the church only made matters worse.
That’s a tragedy, Stanford said, because those dealing with mental health issues usually turn to the clergy first: “Even the very ill, the very psychotic individuals, while they are certainly distracted from their faith, they are really asking the big questions: ‘Where is God in this? Do I have hope? Is God punishing me?’ They are often crying out to God.”
Esther Park, a private-practice psychiatrist in Southern California, told me that many churches are oblivious or ignorant about mental illness because many Christians “judge the level of faith by their outcome” and aren’t open about their uglier struggles. If more pastors became educated on the illness, they could foster an environment in which people feel more confident to ask for help and discover, “What’s God’s will in this?” She recently started a community service Bible group for those with mental illness in her clinic, because she saw a gaping need within the Christian community.
Churches could form close-knit communities with multiple eyes to detect symptoms of mental illness and intervene. Churches could also be sanctuaries of healing and compassion for broken individuals overwhelmed by impossible circumstances. Now, psychiatrists and therapists offer the brain for a temporary fix, and government tosses money into a broken system, but who treats the eternal soul?