Treatment Online

Interview: Professor Elyn Saks Discusses Memoir, Battle with Schizophrenia
> 8/28/2007 12:35:19 PM

Elyn R. Saks, professor of law at the University of Southern California and adjunct professor of psychiatry at the University of California San Diego, recently published The Center Cannot Hold, a compelling memoir recounting her struggles with schizophrenia. Dr. Saks has survived multiple institutional stays and battles with both breast and ovarian cancer to arrive at the esteemed positions she currently occupies. In The Center Cannot Hold she writes to patients, professionals and casual readers in order to spread the message that schizophrenia, and mental illness as a whole, does not constitute a death sentence or condemn one to an insignificant life.

We had the opportunity to speak with Ms. Saks about her experiences and the excellent work she drew from them.

Treatment Online: Thinking about how long you suffered without a name for your condition, we wonder how important you feel a direct schizophrenia diagnosis is, as opposed to a �schizo-affective disorder� diagnosis. Do you feel that some of these diagnoses seen as less severe can have the effect of placating a patient or downplaying the seriousness of their condition?

Elyn Saks: It's hard to know what the motives are of psychiatrists who give diagnoses. You hope they give them the most appropriate one and not the one the patient wants to hear. For me, at one point I was given the schizo-affective diagnosis and I felt like it damned me even though it wasn't pure schizophrenia because it had the "schizo" in it, and then...I was diagnosed with having schizophrenia and it was a shock, it was a blow and it was frightening. On the other hand, I think there's a value in knowing and understanding and I think that can help as well as injure or harm.

TOL: Do you feel that an earlier and more precise diagnosis would be more effective for patients?

ES: Sometimes the diagnosis doesn't matter for treatment anyway, so you might want to put them on an antipsychotic or an antidepressant because they have psychotic symptoms and they also stew a bit. A schizoaffective person may receive the same medication that a schizophrenic may receive or that a person with bipolar disorder who has psychotic symptoms may receive as well. So the diagnosis doesn't totally drive treatment. On the other hand it somewhat drives it, and you want to be the most accurate you can be, the sooner, the better.

It's often hard to tell. My illness started off looking a lot like psychotic depression and then over time it evolved into something that looked more like schizophrenia. You want to do your best getting an accurate diagnosis as soon as possible so the most appropriate treatment can be offered.

TOL: Do you feel that there's a possibility of dramatically misdiagnosing schizophrenia, do you think that happens on any regular basis?

ES: It used to be the case that when you compared England to America, England has many more bipolar diagnoses and many fewer schizophrenia diagnoses, but since the later editions of the DSM, schizophrenia is diagnosed much less often and I'm not sure if you compare today whether there would be that big of a variance between England and America.

TOL: You describe your experience with your British therapist Mrs. Jones with the quote "when you're sick, respect is a lifeline." Do you still feel that the nature of the practice was different in Britain than it was in the United States at the time?

ES: I'm actually going to Britain; the book's being published in England as well, and I'm going to go in mid-September. I have not followed what goes on there now but when I was there, British hospitals were much more respectful of patients and treated them with more dignity and concern and that was enormously important to me. In some ways the British hospitals are a little bit hands-off...maybe a little too much. But the American hospitals are really over-interventionist, and as I've come to say, I'm very pro-psychiatry but I'm very anti-force and I think they use force a lot more here than I think we need to. I think we need to study ways to help people come to see that they need treatment and to ask for it and to want it instead of just taking the path of least resistance which is just to force it on people.

TOL: Do you think that's the product of an all-or-nothing mentality or fear of liability?

ES: Some of it is fear of liability. The British, at least while I was there, did not have so many malpractice lawsuits. It was much less likely. Part of it could be liability driven, part of it could be cultural differences...with English people being more respectful of authority or American people tending to be more violent. Back when I was in England, police didn't carry guns and they did here. It�s a complicated picture and it's hard to know what is most important but there are cultural differences that may drive some of the differences in treatment.

TOL: We were very struck by the scene at the Yale hospital in which you were in the midst of a psychotic episode and were carrying a nail in your pocket that you saw as a device to defend yourself against the anonymous forces you believed were following you. The doctor had a security official forcibly take the nail from you and then strap you into restraints, where you stayed for several hours. Obviously the line between compassion for the patient and concern for the safety of others can be very difficult and it would seem that the cases in which patients are mistreated most likely outnumber those in which they harm other people due to insufficient oversight. But do you think that the doctor's concern was legitimate?

ES: I think it was a plausible decision; I don't think it was the right decision. The security guard came and took the nail away and then we could have just sat and talked. They haven't used mechanical restraints for two hundred years in England. I think we can do better here. I would make a number of suggestions. Only in the most extreme circumstances would restraints be appropriate, as it might be the case in the ER when a doctor needs to have close access to a patient and the patient may be dangerous. Or a patient is being transported from one hospital to another where, were he or she not tied down, he or she would try to strangle the driver. There are situations where you should be able to use restraints.

On the other hand, I think they are really overused and we should try and find ways to minimize them. In another example, I would change the liability regime so that doctors would be found guilty for failing to restrain someone only if they were really, really grossly negligent for failing to do it. So, change the incentives for doctors.

The last thing I would say is, apart from the degradation and humiliation and helplessness and pain of restraints; first of all, doctors say [restraints] help patients feel safer, but when you actually talk to patients or read surveys, that doesn't seem to be the case. They also say they actually make patients safer. On the other hand, a study done by the Hartford Courant and a Harvard statistician, based on evidence we do have and reasonable suppositions, figured there were, 50 to 150 restraint deaths a year. Here's a procedure that's supposed to make people safer and it's killing 50 to 150 people a year. And how many people are being saved who couldn't have been saved with someone just sitting by their side? It's a complicated question, and for me with the most horrific part of my treatment the long-term restraints, greater than 15 hours, it's just unbelievably painful.

TOL: How do you feel that we as a larger society can mitigate the belief - and we feel a lot of people believe this even though they claim not to or can rationally move beyond it - that mentally ill individuals are somehow broken or incomplete?

ES: I guess one way would be having examples of people who have mental illnesses who are doing well. People hear of schizophrenia and they think someone is never going to be able to live independently and work, and then you have people like me who stand up and say, "No, it doesn't have to be that way." Some people say well aren't you unique, and I'm actually doing a study with folks at USC and UCLA on high-functioning individuals with schizophrenia. We've got an MD, we've got a Ph.D. psychologist, we've got some high-level consumer advocates, full-time students and stay at home parents. Just in LA in the past couple of months we've already recruited ten people, and we're going to try to hear their stories and find out if there are things they do to master their illness that we might teach to other people so other people could become higher functioning.

I also think that in some sense some people with illnesses do have an impairment or disability. It's nothing to be ashamed of. People say I don't want to use medication because its a crutch; if your foot were broken you would use a crutch. Well, your neurotransmitters are a bit broken, let's see if we can address that.

TOL: Do you think that there are any individual schizophrenic patients who can live without medication?

ES: There are examples. There's a study done by an analyst at my institute about a young woman who he treated without medication who's doing very well now. And there are studies of waiting a little bit with first breaks to see if it resolves without medication. Most people think medication is necessary, the sooner the better, but there are efforts underway to heal people without medication as well. Is there something we can do about the way we administer the medicine? We need to study ways to make people see that they need it instead of just forcing it.

That's why I think the right to refuse treatment is important, not because I think people should refuse treatment but because it gives them a bargaining chip with their psychiatrist so they can say look, I want this med, not that med: this one makes me feel terrible, this one makes me feel better, have a real dialogue in that kind of sense. Psychiatric patients get a bad rap about medication, but there's a lot of studies of [non-psych patients] on medication who become asymptomatic on meds and discontinue their medication. Like people on blood pressure medicine or cholesterol medication. There are studies where they stand at an elevator in an office building with doctors, and they see how many people throw their prescriptions away as they get into the elevator. Nobody wants to feel like they have to be on medication. We need to figure out ways to encourage people without forcing them. That's my view.

TOL: Throughout the book one measure that other people used to determine your capacity was the language that you used and we were very intrigued by the lines you attributed to yourself to characterize the disease: both the italicized passages that were your interior thought processes and the sort of free-associative monologues in which you often engaged.

ES: Psychoanalysts would call it primary process. You just move from one association to another association with maybe nothing in common except the sound of the word and it doesn't really make sense but probably has meaning if you really explore it.

TOL: Do you think people close to you were able to tell how severe your condition was during different episodes?

ES: I�m very good at hiding. There have been occasions where I haven't been able to. My closest friend Steve can tell sometimes before I can, as can my husband. He says there's a certain kind of silence I get into, which troubles him and tips him off that something might be wrong. Not all silence, not every time I'm quiet, but he can actually tell. It's a blessing to have someone in your environment who knows you that well. Sometimes they can pick up on it before you can.

TOL: That's amazing. You couldn't expect any clinician to be able to do that without years of personal experience. So how did you compose these lines?

ES: People ask that question and my answer typically is, I remember the same way that anyone who writes a memoir remembers. I specifically remember that time in San Francisco when I had the thought that my analyst and Steve had been taken over. Some of it was, at that time, the kind of thing that I would have been thinking is XYZ, I typically had that delusion. So either you totally remember or you bring up a gestalt that recreates it as best you can. And that's the same for anyone who writes a memoir that lasts more than a year or two. Some people with psychosis don't have memories or have amnesia, and that obviously would be impossible, but I do have memories so I was able to try to recreate it and it is in fact one of the things that I'm most happy about in the book. I tried to give people a window into what it feels like to be psychotic, that you would have these scary terrifying confusing thoughts, and the hope is if that people understand more and see how it works, they'll be less frightened and less hostile. Obviously, I want to be understood so that's part of it for me as well.

TOL: Was there a continuing battle between your cognitive self and your psychotic self?

ES: A lot of times, yes. There are degrees of psychosis, from where I have a fleeting thought that I dismiss right away until I'm totally in its grip, and in the middle there's a lot of arguing with myself: is this real or is this just your illness acting up? There's a kind of range. Sometimes I can tell myself this is just the illness acting up and sometimes I can't. A lot of my thoughts were scary and violent. Fortunately, I never actually hurt anybody, and I had therapists who were wonderful and were not immediately jumping to institutionalize me but to work with me with what was going on in my mind, and that was a real gift.

TOL: Would you like your memoir to serve as a sort of call to arms for patients to resist demeaning invalid roles?

ES: Certainly everyone can't become a professor, and I don't think everyone can live up to their kind of pre-illness potential, but I think a lot more people than we expect can, and when you have low expectations it may deter people from getting a little more challenging job that would make their life more meaningful and give them focus and well-being. As a society we need to find ways to help people live up to their potential and not just say, Well, you've got this, resign yourself to a not-so-good life,� to put it in plain words. I hope someone reads [The Center Cannot Hold] and says, �Gee, she went through this whole thing for years fighting it, and when she finally accepted it, it worked well for her. Maybe I should try.�

Who knows? You never know how writing is going to affect somebody, but it would be kind of cool if that happened just once.

Comments
my son is currently in the hospital, for the same thing he was very lucky as he didn't get hurt nor did anyone else, he left and was gone for 12 hours we had the police looking for him and he ended up in another state that was a 2 hour drive but 12 for him. He had turned down a service entrance and ended up stuck went to someone's house and asked for help to get him out the "ditch" and they seen something wasn't right and called 911 he thought he was in fla and he was following the "lost highway" before he was hearing demons laughing and telling him he was going to hell. He was in college when his first real episode happened which was in April of this past year. Does he think he has a problem no as he sees it "we are the ones with the problem, and we won't let him grow up" this is just a few things and I am learning as much about this as I can.

Posted by: beanbag 1/11/2008 10:56:41 AM
Thank you for making me more aware on such an important issue.

Posted by: Frankie 2/19/2008 12:42:46 PM