The voice at the other end sounds nothing like the person who called me the day before. His speech is slow and downbeat, not animated and forceful, as it had been. The man who was single-minded in pitching me on this column idea now has almost no affect.
He acknowledges it first. "It's like you're talking to a totally different person than I was before," the 36-year-old Des Moines, Iowa, resident says. Impulsivity and mood swings are two of the many ways his borderline personality disorder manifests itself, and they are two of the many reasons he desperately seeks relief from it.
He had contacted me on the occasion of May being Borderline Personality Disorder Month, sharing his story so I could enlighten readers on why there should be more treatment options. But by the next day, he has thought better of it: He needs a job (he has lost three in the last 18 months) and no one may hire him after knowing his affliction.
The man is intelligent, personable. Just months ago he had a good job and was earning $85,000 a year. But right now he lives in someone's basement and owes $11,000 in child support. He says he always "figures out a way to screw up something good." He has no network, no income, no transportation. He was married to a good woman who remains his best friend, but "I pushed everybody away." And his world is wracked by contradictions.
He'll idealize someone and then get irrationally angry and distrustful of them. He's desperately afraid of abandonment, yet he abandons people. He will tell you he's a victim and also tell you people with BPD play the victim a lot. His fear of failing at jobs leads him to fail at them. "I'm scared to death to die, and I'm scared to death to live," he said. "I'm scared to fail, and I'm scared to succeed."
Up to 2 percent of Americans are diagnosed with BPD-probably an underestimate, because it's hard to diagnose. Characterized by low self-worth, fear of abandonment and intense emotions and mood swings, the disorder can lead to harmful, impulsive behaviors like alcohol abuse or compulsive gambling, which can confuse the diagnosis, as well as unstable relationships and aggressiveness.
It's partly for personal reasons I was persuaded to share his story even after he withdrew permission to use his name. I have known people-smart, charismatic, loving people-whose behavior matched those vexing patterns, and I never really got why. There is no cure for BPD, and no Federal Drug Administration-approved medication. Many therapists believe it cannot be successfully treated. But the man sees discrimination against the mentally ill, saying if he had a physical ailment, there would be more options.
His symptoms began in adolescence. He got 17 years of misdiagnoses, including bipolar disorder, until he got the right one a year ago. He said he met nine of the nine criteria in the diagnostics manual. At 19, he attempted suicide.
"People are dying every day because they don't know they have it," he said. But even if they do, their options are limited. He says an hour or two a week of talk therapy is not enough, and the psychiatrists he has seen typically spend only spend five to 10 minutes with him. He says retraining a brain like his requires intensive effort and time: "I've been begging them to lock me up for 30 to 50 days."
Five residential treatment centers in the country offer BPD programs that last 30 days or more, but they have wait lists and demand cash payments. And anyway, therapists specializing in BPD don't necessarily see that as the answer. Those include his own therapist, Jeffrey Kramer, who thinks the best models are outpatient.
One of the most promising outpatient approaches was developed by Nancee Blum, of University of Iowa Hospitals. It's called STEPPS (systems training for emotional predictability and problem-solving) and runs 20 weeks in two-hour weekly group sessions. A former teacher, Blum said the object is to teach patients and their families the skills to change their behaviors and not respond to stress in emotionally reactive ways. She developed the treatment with a four-year, $1.7 million grant from the National Institutes of Health, beginning in 2002. It is used extensively in Europe.
Blum says the residential approach works fine while patients are in that structured environment, but not necessarily in their everyday situations outside.
BPD is believed to run in families and have a brain-chemistry component, combined with early childhood trauma such as abuse, neglect or the death of a parent. The man has no conscious recollection of such an event but has reason to believe he may have been abused by an adult male relative when he was younger than 5. Three-quarters of those diagnosed are female, but women are also more likely to seek help.
One in five psychiatric inpatients suffers from BPD, Kramer said. One in 10 people with BPD commits suicide.
The man created a BPD support group and publicized it online, but says he sat there three weeks in a row and no one showed up.
He is locked in a catch-22. He can't hold a job but won't apply for disability because that would prevent him from earning above a baseline income. Even with the most favorable treatment outcomes, Blum said only about half of BPD sufferers can maintain regular employment. But the man cannot bring himself to accept that. And ever since he allowed me a glimpse into his tortured world, neither can I. Somehow, we have to work to improve those odds.