[Article of Interest] I’m Elyn Saks and this Is What It’s Like to Live with Schizophrenia
By George Dvosky
Elyn Saks first started noticing that something was wrong when she was 16. One day, and without reason, she suddenly left her classroom and started walking home. It turned into an agonizing journey in which she believed all the houses in her neighborhood were transmitting hostile and insulting messages directly into her brain. Five years later, while attending law school at Oxford, she experienced her first complete schizophrenic break. Saks struggled over the course of the next decade, but she came through thanks to medication, therapy, and the support of friends and family.
Schizophrenia as a health condition is as neglected as it’s misunderstood. People tend to get squeamish when it comes to mental illness, convincing themselves that it’s not a wide scale problem, or that people who suffer from it are lost causes. At the same time, many people cling to outdated notions about the disorder.
Indeed, schizophrenia is not as rare as some people think. It has been estimated that anywhere from 0.3 to 0.7 percent of the population is afflicted with it. For a country like the United States, that’s anywhere from 940,000 to 2,200,000 people. And the costs are enormous, estimated at $62.7 billion per year in the U.S. alone. Yet, schizophrenia receives only a small fraction of the amount of medical research dollars that go into other serious diseases and disorders.
It’s also commonly mistaken for multiple personality disorder, what’s now referred to as dissociative identity disorder (DID). These two conditions are distinct, though some crossover exists; DID patients sometimes exhibit psychotic symptoms. Also, both DID and schizophrenia can be triggered by traumatic experiences. But that’s where the similarities end.
Another common misconception about schizophrenia is that people who suffer from it are extremely violent.
“And that’s just not true,” says Saks. “Most people with schizophrenia are less violent, but are more likely to be victimized.” The big, violent folks, added Saks, tend to be teenage males and substance abusers.
There’s also a misconception that all people with schizophrenia can’t hold down a job, and that they lose the ability to work in any kind of meaningful way. Or that they can’t live independently, that they need some kind of supervised living arrangement.
Like many other psychological disorders, schizophrenia follows along a spectrum in terms of its severity. While many people can become incapacitated by their symptoms, Saks argues that most of them could benefit from drugs and therapy.
And indeed, Saks is convinced that there are more “high functioning” people with schizophrenia than is typically assumed. To that end, she, along with her colleagues at UCLA and USC, designed a study to recruit high functioning people with schizophrenia in the LA area. Specifically, they were looking to study professionals, a group that included MDs, PhD candidates, teachers, CEOs, and full-time students.
“I mean, we got 20 subjects fairly quickly,” she told me, “I started to suspect that I wasn’t unique, that there were many other people like me. It would interesting to know what the stats are on how many people with schizophrenia are so-called “high functioning” professionals.”
Moreover, Saks is convinced that, with proper resources, nearly everyone can live up to their potential — regardless of their situation or status.
“There are going to be some people who you do everything for and they still won’t be able to thrive,” she says, “But I think many more people can do better than we give them credit for — but instead, we prematurely tell people to lower their expectations.”
Indeed, antipsychotic medications have revolutionized the treatment of schizophrenia — and they work startling well. “A lot of people get on medication and they completely recover and never require therapy,” says Saks. But there are some people who don’t respond to medication — and that, she argues, is where therapy and social support could potentially help.
“The best evidence with major mental illness shows that the most effective strategy is to use a combination of meds and a therapy for choice,” says Saks. “For me, I know I need the therapy and the medication. I need both of them. If one of them were to go away I would probably be really compensated.”
Saks is currently in psychoanalytic treatment, where she attends sessions five days a week. And by doing so, she’s going against the grain; conventional wisdom says psychoanalytic treatment shouldn’t work for people with psychosis. But she’s convinced it’s helping.
Saks told me about several aspects of psychoanalytic treatment that have been tremendously beneficial for her — and they’re not typical things that psychoanalysts do.
For example, because stress is particularly bad for psychiatric illnesses, Saks has been taught to identify her stressors and avoid them. Or cope with them at the very least. She has also learned to bolster her “observing ego” — that part of her brain which allows her to step back and observe her mind, feelings, and thoughts in order to understand them and not get swept up.
“It’s also a place where you can bring your thoughts,” she says. “A lot of therapists have a rule where their patients cannot articulate their delusions or hallucinations — but to me you need to have a place where you can do that, where it’s safe. It’s sort of like a steam valve. I don’t have to do it in my outside world, I have a place where I can do it in therapy.”
Another important thing, says Saks is insight.
“People have different theories about psychotic symptoms,” she says. “Some people think they’re just the random firing of neurons that don’t have any meaning. But I think they have meaning and that they tell you some truth about your psychological reality. So, when I say I’ve killed hundreds of thousands of people, it’s really an archaic way of saying I feel like a very bad person. But even though it’s meaningful in this sense, it doesn’t help patients in the moment of the psychotic symptoms that they interpret.”
Saks believes that extreme and exaggerated ideations are a defense mechanism — which in some circumstances can make a person feel better or safe.
Saks closed our conversation by noting that, outside of medications and drugs, it’s people who can make the greatest impact.
“It’s so important to have a benign, smart, caring, non-judgmental person that accepts you — not only for the good — but for also the bad and the ugly,” she said, “That is incredibly empowering.”