TVO The Agenda With Steve Paikin
This program was aired Thursday 12 May as part of the Mental Health Matters series: an inquiry seeking to grapple with how much do we really know about what some call “schizophrenia”.
Elyn R Saks, Law Professor at USC and author of: The Centre Cannot Hold : My Journey Through Madness (2007) a personal account of falling ill, being diagnosed with “s ‘ and finding help learning to not only to live with it – but to live well enough so she could become a tenured professor in a law school and so can now safely tell the tale.
“…my goal is to give a window inside the mind of someone who’s suffering acute psychosis hopefully people can then be less scared , they will be less hostile and stigma will decline.”
“The perception on schizophrenia is that it is so damaging and so difficult to live with, that you can’t cope, yet you look like a person, you know, who’s coping, who’s doing a job, who’s married and who’s got some semblance of a pretty good life…… So have we got the perception wrong?”
Elyn R Saks
“Yeah, I think. People say I’m unique: I’m not. I’m doing two studies, USC and UCLA and USC and UCSD. high achieving people with schizophrenia… we fairly quickly recruited twenty subjects.
“So there are people who have the illness who are professionals and managers and that kind of thing.
“It’s just that the stigma’s so great that they don’t come forward and it’s easy for me because I have tenure in a law school.
“I hope other people, if they can take the risk, will do that because I think actually seeing people who are ill and recognizing we want at everyone else wants: in the words of Freud: to love and to work.
“The humanity we share is more important than the illness we don’t.”
The humanity we share is more important than the illness we don’t.
“up next a sentence or a diagnosis?.. or something else? a broader look at schizophrenia …
then a three-way conversation with
- Dolores Malaspina Prof of Psychiatry a NYU ,
- Kwame Mckenzie Psychiatrist at CAMH and “co-host” for the week… this week,
- and Elyn R Saks again
“I wanna start by playing a clip from Monday ‘s programme in which a member of our audience had this to say about what we are talking tonight…
then it’s, er, me! ….
I think I’m normal
“one of the best lines of the programme”
” We talked with that guy for a little while and he did seem blessedly normal, if I can use that expression”
[go ahead, Steve, I’m gonna….]
“… but it seems like schizophrenia is a rather slippery slope on which we make a diagnosis – are we still that unclear about what this, in fact, is?”
” I believe that we are, there’s a sense that many people hold that schizophrenia’s a disease entity and they’ll work to try to define it by including different types of symptoms whether it’s hallucinations or bizarre behaviour or withdrawal and apathy.
…but what we’re learning is that “disease” is actually a syndrome and that some of the symptoms in the disease may occur in a mild form in many people who continue to function.
If you think of schizophrenia as like fever, you’ll realise that for people where fever is interfering with functioning we can give them aspirin or some medication but may feel that aspirin can’t cure the fever, We need to get below that and find out what’s driving it.”
I would restrict a diagnosis to people who are not functioning, to begin with..’
“let me read a quote from a guy named Richard Bentall, [yay!] who was on the BBC several years ago and said:
note . for more on who this geezer Richard Bentall is, he’s Prof at two universities and leads a team of ace researchers. For what he talked about in Toronto at the INTAR conference, in Nov 2011 see
- psychology of paranoid delusions http://understandingpsychosisexploringalternatives.files.wordpress.com/2011/12/intar-2011-toronto-richard-bentall-psychology-of-paranoid-delusions.pdf
- deconstructing schizophrenia http://understandingpsychosisexploringalternatives.files.wordpress.com/2011/12/intar-2011-toronto-richard-bentall-deconstructing-schizophrenia.pdf
“Now Kwame, that’s six years ago. Do we not six years later have a better understanding of what schizophrenia is?
“I think the problem is that we started with the idea that schizophrenia is something.
“What “schizophrenia” is attempting to do – or the concept of schizophrenia is – is attempting to try to understand and predict what’s likely to happen to somebody: what drugs might work; what capacities there are going to be for success or moving on, and that’s all it is.
“We’re very early in trying to work out what these diagnoses actually mean . In the rest of medicine they have tests which show that some sort of bodily function is changed or some organ isn’t working properly. And those tests predict an illness.
so there’s no test for schizophrenia and it’s not like medicine then?
“In psychiatry we’re not there – we’re still looking at symptoms, putting symptoms together to produce syndromes and trying to see what the outcomes of those syndromes are…”
“I think we understand schizophrenia when we see it , for example in a hollywood movie but I’m not sure how accurate that is to reality, so Elyn Saks, you live with it, can you tell us what you think it is?
“I think the concept of mental illness in general and schizophrenia in general is a difficult concept because it raises a lot of interesting philosophical questions…
“Is it just eccentricity?; is it being differently abled rather than disabled?; is it a series of entities, under one label?
“what I say is thinking schizophrenia is a brain disease, involving my neurotransmitters, that responds to medication and therapy is very useful. I believe it not because I’ve solved all the philosophical problems but because believing that makes my life better.
“other people may feel better believing that what they experience is just an alternative way of being : they’re just eccentric, they have different preferences, and their life is better if they believe that . “
“I don’t want to impose my view but I hold my view became it makes my life better”
Do we know how you get it?
“It’s very intriguing. Everyone talks about “schizophrenia” as a genetic disease
..well, not exactly everyone – not even everyone in N America!
“and there’s been some thinking of it as a disease but the vast majority of people with schizophrenia or related have no family history whatsoever …
the vast majority of people with schizophrenia or related conditions have no family history, whatsoever
“and the findings on the genetic side are there are probably thousands of person specific, or family specificmutations. We’re not likely to find any genetic test for it.
“..There’s no clear overlap between psychosis that is bipolar or part of depression or schizoaffective , or schizophrenia. People have struggled for years to define do I have scizoaffective.. or schizophrenia ?
“The findings are that the same genetic vulnerabilities might lead to different syndromes in different people .
“And I applaud the idea that individuals can come forward and find what works best for them.
I applaud the idea that individuals can come forward and find what works best for them
“I think in North America we underuse psychotherapies.
in North America we underuse psychotherapies.
“…we underuse the kind of cognitive skills that Dr Saks has developed to manage symptoms. There is medication that can help, there is treatment that can help but we need more research “
…funny how researchers always get that line in, eh?
…do they learn that in school?…
Turning to the genetics…
“I’ve seen the statistic that even in the case of identical twins, if one’s got it there’s only a 48% the other one’s gonna have it as well. So the preponderance of the odds are not with genetics – even in the case of identical twins. So there must be other factors involved here – like what?
the preponderance of the odds are not with genetics – even in the case of identical twins.
…so there must be other factors involved here, like what?
” I think the environment is very important. One of the interesting things about the way we are now thinkingabout alot of illnesses and particularly about schizophrenia is we’re starting to throw out old notion of: nature or nurture where nature is biology and the environment is what happens to you.
we’re starting to throw out old notion of: nature or nurture
” and we’re getting into this idea that nature affects nurture and nurture affects nature. And so this idea of one or the other goes away and its sort of a mish-mash of the two. So even if you’ve got the same genetic code then you still haven’t got the same risk of developing … because nurture is important. and the more we start looking the more we find thinks in the environment that are important in increasing your risk of psychotic disorders…”
“Elyn Saks, how do you think you got it?
Elyn R Saks
“… a combination of stress in moving to England – even though it’s the same language it’s a very different culture, may have pushed me over, may have happened anyway. I had a very un-traumatic childhood, I have loving and caring parents …I did not have a deprived or abusive childhood…. so I basically think its biochemical, stress can tip you over , stress is bad for all kinds of illnesses.
See Dr Gabor Mate on how stress is not only bad for illness but actually the genesis of chronic illnesses, switching on any genetic predispositions we might have. The Hidden Costs of Stress on Health.
“I want to talk about the importance of talk therapies. I’ve been in psychoanalysis five times a week for decades I know it’s supposed to end .but I consider myself a lifer..
“So for me meds and therapy have been important – I couldn’t have done it with only one and obviously with none of them.
…so that’s about $ 50k year on analysis , lucky you! …lucky therapist!
“if you think of schizophrenia as being of at least four dimensions then you’ve got to think about lots of different types of treatment
“so you might go biological and think about drugs, you might go psychoanalytic support – in Elyn’s case from a loving husband, and also work.. because those things make a difference.
“so when we’re thinking of the causes and we’re thinking of the symptoms were thinking complexity so when we’re thinking of what we’re going to do about it , again we have to think about complexity.
we have to think about complexity….
This is at about 21 mins in – half way – there’s another 20mins exploring in the same vein.
[I may type it up sometime]
This is an important show, revealing what amounts to acknowledging that we really don’t know much about the phenomena that some call “schizophrenia”.
So why do we insist on investing so much in defending the false certainty we have created and pretending that we do know?
I’ve come to learn that, all too often, schizophrenia simply means ” we don’t know, we give up…”
…on TVO The Agenda website… http://ww3.tvo.org/video/177362/schizophrenia-sentence-or-diagnosis
- Disturbed minds or manuals? (recoverynetworktoronto.wordpress.com)
- Severe abuse in childhood may treble risk of schizophrenia (recoverynetworktoronto.wordpress.com)
- Schizophrenia: 100 years of bad treatment (recoverynetworktoronto.wordpress.com)