Dinah, ClinkShrink, & Roy produce Shrink Rap: a blog by Psychiatrists for Psychiatrists, interested bystanders are also welcome. A place to talk; no one has to listen.
Sunday, August 07, 2011
NY Times: One Man's Battle with Schizophrenia
Benedict Carey is a New York Times mental health reporter. In yesterday's Times, he wrote about Joe Holt, a man with a diagnosis of schizophrenia. Mr. Holt was dealt a particularly tough deck of cards: in addition to diagnosis of schizophrenia, he had a horrible and traumatic childhood with much loss, placement in a facility where he was physically abused, and periods of homelessness as a teenager. He now has a stable marriage, has adopted children and keeps numerous foster children, and holds two jobs, one as a computer and another as a therapist (if I read that correctly). He struggles with his emotional life, but my take on this was that this is one extremely resilient man who has waged a successful battle against many demons and his story is inspirational.
So Benedict Carey often writes stories that are skeptical, if not outright critical, of the mental health field. This story did not have that tone. I found it interesting, though, that he chose a person with a diagnosis of schizophrenia who's life was not "typical." What did I find not typical? Well, Mr. Holt functions very well---he is personable and engaged with the world and able to function at a high level-- I'll borrow Freud's view for this, but "to work and to love" as indicative of functioning. Certainly there are people with schizophrenia that work and marry and function well, but hallmarks of the disease often include passive symptoms of low motivation, apathy, and a lack of interest in the world. Often the negative symptoms (which Mr. Holt is not described as having) are more disabling than the positive symptoms of hallucinations and delusions. The second thing I found to be 'not typical" was that Mr. Holt did not recognize the voices he'd been hearing for years as 'voices.' In general, I've found that people who suffer from hallucinations soon figure out that they are hallucinating; the same is not true of delusions, where people often never gain the insight that their beliefs are not valid. Finally, while Mr. Holt functions with schizophrenia, he only takes medications during acute episodes and has done well without them since 2006.
What does this mean? Well, I guess the choices are that either the diagnosis is wrong, or that Mr. Carey picked someone with an atypical course to feature. There's probably more choices that I'm missing. In one way, I liked the article because it was hopeful, positive, and mostly upbeat. The patient featured still suffers miserably --listen to the video interview-- but he lives a full life. On the other hand, there is a tinge of suggestion that others should be able to function as well with schizophrenia (without regular medications, no less) and I'm not sure it's always that simple.
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So, Mr. Holt functions at a high level, and he appears to do well off meds (mirabile dictu!), then one possible explanation is that the diagnosis of schizophrenia could be wrong?
When entities like schizophrenia are defined phenomenonologically, instead of based on objective, measurable criteria, this explanation is as good as any.
yup, that was my response as well: wrong diagnosis.
when I see patients with autism who are "cured" - they didn't have autism in the first place.
This is a fascinating and vastly encouraging article, and I hope this begins a trend of allowing more patients who have recovered from extreme mental states largely outside of psychiatry to come out of the woodwork. I know they're out there. I've met them.
To sum up my thoughts on the article and the possibility of patients recovering without (or largely without) psychiatry:
Given the current standard of care which is to medicate psychotic patients and not let them have a chance of healing naturally in a structured environment like Loren Mosher's Soteria house or the Open Dialogue therapy seeing success in Finland, a psychiatrist with dozens of years of clinical experience could be under the false impression that organic (that is, non-medicated) recovery from psychosis is vanishingly rare, when that may not necessarily be the case simply because the resources for schizophrenia patients to do so are not available to them (that is, like a Soteria house).
Of course psychotic patients who don't have access to such resources will dangle on a pole and do terribly until they are treated with meds. The low recovery rates of those who try to "go it alone" and recover from psychosis without meds could thus, in hindsight, turn out to be an optical illusion if they are, in the future, given access to resources like Soteria or Open Dialogue.
I have spoken on this central thesis at length on another psychiatry blog (the alienist's blog). Link is below to the discussion in question (I posted as "psychtruth" there, and will continue to post as SG on shrinkrap for continuity purposes).
PS: One point this article made me consider: would it be possible to incorporate CBT techniques for schizophrenics, at least for a subset of patients? That is, to have shizophrenics use metacognitive techniques to "re-label" their voices and not be so tortured by them and ultimately just view them as an irrational, transient nuisance, much as those who suffer from anxious and self-defeating thoughts do with traditional CBT therapy?
PPS: I was struck by this quote:
"'If you're going to focus on recovery, you might want to ask those who've actually recovered what it is they're doing,' said Frederick J. Frese III, an associate professor of psychiatry at the Northeastern Ohio Universities College of Medicine who has written about his own struggles with schizophrenia.
'Certainly, traditional medicine has not worked very well for many of us,' Dr. Frese went on. 'That's why we've had to learn so many survival tricks on our own.'"
Frese’s situation is similar to that of Dan Fisher, a psychiatrist who has recovered from schizophrenia. He had his diagnosis of schizophrenia when -- get this -- he was an NIMH researcher researching the neurobiology of...schizophrenia! You can't make this stuff up. Anyway, he is now the executive director of The National Empowerment Center, a psychiatric peer recovery and advocacy group which seeks to reform psychiatry and in the meantime provide non-pharmacological resources to psych patients. The second link is to a video of highlights from their latest convention, and the third is to an interview with Dan in which he talks about his life and his schizophrenia and his recovery. *And yes, he still prescribes -- and believes in the selective use of -- psych meds.
Recommended viewing: these videos are windows into the burgeoning psych reform movement, which is gaining steam every day.
Link to alienist discussion:
Link to National Empowerment Center "Creating Connections through Dialogue" Video:
Link to Dan Fisher Interview Video:
He holds a job as a computer? Maybe he just had a virus.
I guess Lionel Aldridge doesn't (didn't) have schizophrenia either.
Money quote: "There is no known cure for paranoid schizophrenia, but I [Aldrige] am one of the lucky ones. The disease is in remission. I have largely recovered."
wv = pasisac; a something you carry in your trousers when traversing Passaic County, NJ
I do agree with SG with respect to not having enough resources/ research on non-medication solutions to mental health illnesses or all diseases for that matter.
I think this outlines a value prioritization problem in our society (specifically our vulnerability to support things that make money for us or provide fame). The pharmaceutical companies want to make money and so do doctors (among many others) and so there is a win/win situation when drug trials and drug research are funded. However, in this money madness, the patient is sometimes lost (although I hope usually un-intentially).
I have thought a lot about the operationalization of health outcomes. I have found that one of the strongly accepted ways of measuring health and functionality is by external attributes/behaviors. Now, I don't disagree with this way of thinking as I am a scientist and value objectivity and empiricism, however, I don't know if everything can be measured via this system. And if it could, would we really want to? Sometimes operationalizing in this way cause us to sacrifice construct validity. In essence we are not measuring what is really relevant to the larger question at hand.
Because of the value system in our society, I can't blame the author for his choice of subject. Many people operationalize success to be holding jobs, having family, making money… etc. Was the author just tailoring to his readers? Or perhaps he was perpetuating his own definition of success (which includes a lot of money, many relationships and contributions….etc.)
In addition I bet the author was rewarded with publicity and money for this article (as I realize I am contributing to now because I am responding to it). I bet he would not think that writing about a person suffering from schizophrenia who is lovingly taking care of a cat, in a healthy tertiary care environment, and volunteering with a bowling club would get him as much money. Although I think the story of this person is just as important as the one he is writing about.
Both stories are courageous and hopeful and worth writing about. Both individuals have found happiness and meaningful contribution and I commend all types of people who CHOOSE to fight, whatever winning looks like. (As long at it is considered relatively healthy).
However, I would challenge this author to re-think the impact of his article for people NOT suffering from mental illness (both who have found meaning and those who are still struggling), those who ARE suffering from mental illness (both who have found meaning and those who are still struggling), his own disposition, society’s influences and the philosophical underpinnings of his belief system.
I am perplexed at the implication that when someone is a success story in spite of dealing with a serious condition like schizophrenia, that the person's condition was minor and/or it must have been misdiagnosed, or it wasn't the typical case.
Dinah, as an FYI, Pat Deegan, a clinical psychologist who I have posted about before on this blog regarding different perceptions that patients have about drugs vs. their psychiatrists, was hospitalized 8 times for schizophrenia. I don't think she take medication or if she does, it is on a PRN basis if I remember correctly.
But really, this isn't about meds vs. non meds. This is about giving hope to people and not providing the message that they are doomed to an inferior existence.
Before anyone thinks my face is covered with rose colored glasses, I am one who has also debated with people about the need to have what I call "realistic" optimism. As a result, it seems to me that a way to achieve this is to do what Dr. Frese suggests in the article which is to find what these folks like the one in the NY Times story are doing that have caused their success. That seems alot more helpful than the current system which is greatly frustrating in general no matter what position you have on meds.
Because we don't have a precise test to define schizophrenia (e.g. schizophrenia factor above 7.5), it is phenomenological diagnosis, and with several 'variants'-- paranoid, disorganized, catatonic, etc... and because all the symptoms of schizophrenia in isolation (voices, paranoia, impulsive behavior, loss of interest) can be seen in other disorders, such as mood disorders and because other conditions can mimic psychosis (delirium, drug induced states, drug withdrawal states), we're more comfortable saying someone definitively has schizophrenia if their symptoms are classic and the course follows the a predictable path.
If there is a difference, it is probably due to our lousy ability to find a cubby hole of a diagnostic system that everyone fits in to. The illness may not fit just right because it is the wrong diagnosis or because a particular person manifests it differently. Even someone with a culture-positive bacterial illness may have only some of the symptoms associated with that disease, or have other symptoms that are not usually seen with it.
I would contend that for the sake of the person and with our current state of knowledge, for Mr. Holt it doesn't really matter. Whatever he has, he's living a full life, and if certain medications get him through tough moments, that's great.
When a patient is described as suffering on a regular basis, one might wonder if more could be done to ease his psychic distress, but the answer to that may well be "no" or "yes" but he's decided it's not worth the price of treatment whether that be the cost of therapy or tolerating side effects of the medications or risk of memory loss associated with ECT or any number of things.
It's nice to have some examples of good outcomes so that we don't tell everyone diagnosed with a given disorder that their life will necessarily be limited, because the truth is that when someone first presents, we may guess the prognosis with a high likelihood of being right, or we may be totally wrong. Please fix my crystal ball.
"It's nice to have some examples of good outcomes so that we don't tell everyone diagnosed with a given disorder that their life will necessarily be limited..."
Except that is not what your colleagues are saying. Everybody out there who was told by a shrink that they will be sick for the rest of their lives and will have to take meds forever, raise your hands.
wv = anisize. One fits all
Rob--- those shrinks have better powers than I do.
These recommendations are made based on studies of populations:
"sick for the rest of your life"...what does that mean? It sounds pretty hopeless. Does it mean you'll never get out of the state of your current distress? Does it mean you won't be able to get a pH.D in physics?
Recommendation for medications for life ...oh, this should be a post...
later, gotta make the transition back from vacation now.
I was bothered by some of the quotes in the article from the wife, which I took as her suggesting that he just needed to "get over it" because he had responsibilities. To me, it reinforced that common notion that many people have, a notion that I believe does a lot of harm.
Perhaps there is a different way, perhaps a different theory than medical model and cause and effect thinking..... Joe used Bowen theory which started with schizophrenia.....guess it is still around and effective for some...
I laugh at the memory of being told drugs for the rest of your life especially when I read all the studies about how psych patients die an average of 25 years earlier than others, than they ought to have> Not sure. Am pretty sure that the drugs take a good chunk off life span so rest of my lief? hey what's 5 years in the great scheme of things? A drop in the bucket. Rest of your life...but buck up because it won't be as long as you thought. and yeah, i think that suicides were not a factor is decreased life span.
Well, I don't really think it may have success.
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