Preface: Failing in my efforts to get this article published for the general public, apparently only here can I talk about a “cool subculture of anti-authoritarians” and how the Harrow study shows medication resisters have greater recovery.
While many Americans are troubled by psychiatry’s over medicating of children, and they doubt the legitimacy of some psychiatric illnesses such as “oppositional defiant disorder,” few question psychiatry with respect to schizophrenia, an often frightening phenomenon characterized by hallucinations, delusions, incoherent speech, and bizarre behaviors. But a major long-term study on schizophrenia challenges psychiatry’s authority here as well, and it just may get Americans to pay attention to a group of anti-authoritarians diagnosed with schizophrenia who have recovered without medication or doctors—and have become activists.
In February 2012, University of Illinois College of Medicine researcher Martin Harrow published, “Do All Schizophrenia Patients Need Antipsychotic Treatment Continuously Throughout their Lifetime? A 20-Year Longitudinal Study,” funded by the National Institute of Mental Health and the United States Public Health Service.
Harrow and his research team found that schizophrenia patients who were “not on antipsychotics [which include “typicals” such as Thorazine and Haldol, and “atypicals” such as Zyprexa, Risperdal, Seroquel, Geodon, and Abilify] for prolonged periods were significantly less likely to be psychotic and experienced more periods of recovery.”
Unseen by most psychiatrists and other mental health professionals, there is a group of people diagnosed with schizophrenia who, at some point, reject doctors and medication and are in recovery. How big is this group? Harrow reports, “Our 20-year data indicate that the subsample of SZ not on antipsychotics represent a moderate-sized group (30–40%) of SZ”; and many of them, according to Harrow’s results, achieve recovery without doctors. Some within this group are self-identified “psychiatric survivors,” activists who fight against coercive treatments and for informed choice and more treatment options.
Welcome to a Cool Subculture of Anti-Authoritarians
If my sole experience of people who had been diagnosed with schizophrenia was purely a clinical one, I too would be wary of them going off their medication, and I too would have a far less hopeful view of the possibility of recovery. One of my earliest professional positions was as a psychiatric emergency room therapist where I saw many patients who were agitated and acting bizarrely and who were dragged into the hospital by police and family. These patients were diagnosed with schizophrenia, schizoffective disorder, or some other psychotic disorder. Most of them would in fact calm down after being given medication, and so it is common for police, family, and mental health professionals to view being “off one’s meds” as problematic.
Many mental health professionals, myself included, have seen psychotic relapse among diagnosed schizophrenics who have been “medication noncompliant.” But professionals ordinarily don’t compare this group to those “medication compliant” patients who also relapse or remain chronically psychotic. And most importantly, in their clinical practice, mental health professionals do not routinely see diagnosed schizophrenics who have recovered without medication and without doctors.
Outside of my practice, I have come to know this group of diagnosed schizophrenics who have long-term recovery without medication. In his research, Harrow discovered them as well and states, “For most SZ [schizophrenia patients] not on medications or not in treatment this was their choice, at times against professional advice.” It is my experience that those who have rejected medication and recovered are virtually all anti-authoritarians who question the legitimacy of authorities and resist those authorities they assess to be illegitimate ones.
I had not heard about psychiatric survivors until 1994, when I was contacted by David Oaks, director of MindFreedom, a coalition of psychiatric survivor organizations from around the world. David, now a good friend, comes from a working class family in the South Side of Chicago and won scholarships to attend Harvard in the early 1970s, but he says, “I didn’t fit in at Harvard, and I was under a lot of stress. Now and again I ingested too much cannabis, to which I’m highly sensitive. I stopped sleeping.” His behavior became erratic with psychotic symptoms (e.g., “thought the CIA was making my teeth grow” and that “a UFO was appearing in my living room”). He was checked into various psychiatric facilities five different times. David recalls, “A dozen psychiatrists diagnosed me as a psychotic. I was told I would have to stay on psychiatric drugs the rest of my life, like a diabetic on insulin. I was told that I was genetically flawed and had a permanently broken brain.”
David ultimately joined the then existing Mental Patients Liberation Front where fellow psychiatric survivors shared stories, went on camping trips, and supported and encouraged each other to exercise and eat better. David graduated with honors from Harvard, and he has been free of psychiatric medication since 1977. Today, he is living in Eugene, Oregon, married, directs MindFreedom, and maintains a busy schedule of organizing and speaking around the world.
I’ve become friends with many other people who were once diagnosed as schizophrenic or with other psychotic disorder but who have moved into long-term recovery without psychiatric drugs (see their personal stories). They include Alaskan attorney Jim Gottstein, now President/CEO of the Law Project for Psychiatric Rights, and currently a leading organizer of Occupy the American Psychiatric Association in Philadelphia on May 5. Will Hall, now a psychotherapist and a radio host, co-founded the peer-support organization Freedom Center in Western Massachusetts along with Oryx Cohen, who is now the Technical Assistance Director at the National Empowerment Center (NEC).
Oryx and psychiatrist Dan Fisher, NEC director, like the term lived experience for those who have experienced hallucinations, delusions, and other “extreme states.” And the mission of NEC is “to carry a message of recovery, empowerment, hope and healing to people with lived experience with mental health issues, trauma, and and/or extreme states.”
Dan Fisher was psychiatrically hospitalized several times prior to becoming a psychiatrist, and he is one of the few psychiatrists in the world who publicly discusses his own recovery from schizophrenia. For anybody who doubts the possibility of full recovery from schizophrenia without psychiatry’s “standard of care” and who could also use a strong dose of morale, I recommend the video Psychiatrist Daniel Fisher Talks about Hope and Recovery.
I have spent time with hundreds of treatment reform activists who were once diagnosed with schizophrenia but who have recovered without medication, and my experience is that they consider themselves lucky to have had family and/or friend support for their choice to resist psychiatric authorities. They tell me that overwhelming anxiety is often a trigger for relapse, and having family or friends with confidence in the possibility of recovery and in their treatment choices is a great anxiety reducer.
Martin Harrow and his research team enrolled patients from two Chicago hospitals diagnosed with schizophrenia (as well as patients diagnosed with mood disorders with psychosis), so as to examine long-term outcomes. All of the patients had received conventional medication treatments when hospitalized, and then Harrow followed them as their lives unfolded, periodically assessing how well they were doing. The majority of patients continued their antipsychotic medications, while about a third of them did not comply with medication treatment and stopped taking them.
The 20-year results showed that schizophrenia patients (and those patients with mood disorders with psychosis) who took antipsychotic medication regularly during the 20 years actually experienced more psychosis, more anxiety, and were more cognitively impaired and had fewer periods of sustained recovery than those who quit taking antipsychotic medications.
“Recovery,” according to the study criteria, required no psychotic symptoms, no rehospitalizations during the follow-up year, and partially adequate (or better) work and social functioning. Among the schizophrenia patients who remained continuously on antipsychotics throughout the 20 years of the study, only 17% ever entered into any period of recovery during any of the six follow-ups. By contrast, among the schizophrenia patients who remained off antipsychotics after the two-year follow-up and for the remainder of the 20 years, 87% experienced two or more periods of recovery.
Harrow’s results are inconvenient for the psychiatric establishment because, as Harrow points out, “Prolonged use of antipsychotic medications is the current standard of care in the field and is viewed as the cornerstone of treatment for SZ [schizophrenia patients].” And the pharmaceutical industry has good reason to want Harrow’s study buried, as antipsychotics are now the largest grossing class of drugs in the United States, grossing $16 billion in 2010. So, the psychiatric establishment and the corporate press have, for the most part, ignored Harrow’s findings.
The psychiatric establishment would like the public to believe that diagnosed schizophrenics who stopped taking their medication and gained recovery must have either been misdiagnosed or were less severely psychotic. However, Harrow makes clear, “At the 2-year assessment there were no significant differences in severity of psychosis between SZ on antipsychotic medications and SZ not on any medications. However, starting at the 4.5-year follow-ups and continuing over the next 15 years, the SZ who were not on antipsychotic medications were significantly less psychotic than those on antipsychotics.”
Explanations for Harrow’s Findings
Harrow concludes that those who stopped taking medication, while not initially different in severity of psychosis than the medication compliant group, are a “self-selected group with better internal resources associated with greater resiliency. They have better prognostic factors, better pre-morbid developmental achievements, less vulnerability to anxiety, better neurocognitive skills, less vulnerability to psychosis and experience more periods of recovery.”
For journalist Robert Whitaker, winner of the George Polk Award for Medical Writing and author Anatomy of an Epidemic, the most plausible explanation for why patients not on antipsychotics were significantly less likely to be psychotic and experienced more periods of recovery is that the medication non-compliant group was not damaged by long-term use of medication.
Whitaker, in “Interpreting Harrow’s 20-Year Results: Are the Drugs to Blame?” notes, “Those with milder psychotic disorders could be expected to have a better long-term course than those diagnosed with schizophrenia. Yet, the schizophrenia patients off meds fared better over the long-term than those with milder disorders on the medications. If the drugs have long-term iatrogenic effects, wouldn’t that explain this surprising outcome?” Whitaker points out, “Nancy Andreasen [one of psychiatry’s most respected researchers] has reported that antipsychotic usage is associated with a decrease in brain volumes over time, and that this decrease in brain volumes is associated with an increase in negative symptoms and cognitive impairment.”
The Harrow study results offer other support for Whitaker’s explanation of the long-term damage of medication. At the two-year follow up, an equal percentage, about 50% of medication compliant schizophrenia patients and 50% of the medication noncompliant schizophrenia patients, experienced “high anxiety.” But at the 4.5 year mark, 75% of the medication compliant group had “high anxiety,” while only about 20% of the medication noncompliant group experienced “high anxiety,” and this same difference persisted at the 20-year follow up. Harrow notes, “Some have proposed that, over a prolonged period of antipsychotic treatment, supersensitivity of dopamine receptors may occur as a compensation of the brain for many years of reduced dopamine resulting from dopamine blockade,” as many medicated patients develop tolerance for their antipsychotics, which means they need an increasingly higher dosage to reduce their anxiety.
So, was the greater recovery among the medication non-compliant directly caused by what Harrow calls their greater “protective factors” and “internal resources”? Or did those protective factors and internal resources provide some patients diagnosed with schizophrenia the strength and resolve to resist psychiatric treatment and thus not be damaged by the medication?
Harrow’s study does not challenge the idea that for those in the acute phase of a psychotic reaction, the short-term use of some tranquilizing medication can be helpful. Harrow’s results do challenge the idea that all patients diagnosed with schizophrenia or other psychotic disorders need to remain on psychiatric medication throughout their lives.
Harrow’s recommendations, given the study results and the adverse effects of antipsychotics, might sound conservative to the general public but are heretical to the psychiatric establishment. Specifically, Harrow recommends: “If protective factors are present and the SZ [schizophrenia patients] has already shown some periods of recovery, and wants to try a period without antipsychotics, then he/she is a good candidate to try going off antipsychotics, although, as with many other medical procedures, there is no certainty of the results.”
There are some mental health treatment activists in MindFreedom, the Freedom Center, and the National Empowerment Center who utilize medications to reduce their anxiety or to help them sleep so they can function. But Martin Harrow’s study and the lives of David Oaks, Jim Gottstein, Will Hall, Orxy Cohen, Dan Fisher, and many others dispel the myth that people do not fully recover from multiple psychotic states. The fact is that people can experience long-term recovery from schizophrenia and other psychotic states without medication, and for many of these people, rejecting mainstream psychiatric treatment has been their salvation.
I am “Emma Goldman” as I had identified myself when I heard you talk in Arlington, MA and Endicott College at National Empowerment Center’s conference about a year ago. I had said the Emma Goldmans of today are all medicated. I just finish your book “Get Up, Stand Up!” and am pleased to see her mentioned. It was a tremendous read.
Since meeting you I also read Volume One of Emma Goldman’s autobiography which you has assumed I’d already read. It was excellent and I wish I’d read it many years ago. She is a heroine of the most noble order.
Recently, I also read “Toxic Sludge is Good for You,” by Joh Stauber and Sheldon Rampton (1995). If you are wondering what happened to protest movements this book explains how PR firms hired by corporations sabotage them. Chapters 4 & 5 describes case studies of the undermining of anti-nuclear, anti-meat, anti-tobacco, and environmental groups. It is a good book. It answers the questions, What happened to the outrage and is there hope for democracy?
The answer, of course, is outrage was killed (it was not “illegal”) and No, there is no HOPE.
On the bright side, I want to let you know that I forwarded your article about rebels who go off meds doing better to Jeffrey Geller, a professor of psychiatry at UMASS Medical School, an outspoken supporter of state hospitals and outpatient commitment and critic of patients’ rights. He emailed back that your article was “Very helpful. Thanks for sending it.”
So, there you go, two steps backward and one step forward.
Thanks Emma/Cathy — Glad to hear from you again, and yes I remember our discussion about Goldman’s autobiography, and I’m glad that you got something out of it. I appreciate your other comments as well. Best regards–Bruce
I really like this piece, read it first a year or so ago on Intervoice forum on Fbook.
As soon as I read the title I thought “Works for me.”
Like many of us I struggle in life from time to time and count my blessings that I’ve always had Doctors who saw their role as not to take over my life but to help me stay in charge of my own life: shared their knowledge and expertise, offered suggestions, helped me find options, and make my own decisions- the best I could.
Its sad but I’ve come to realise I’m lucky – not everyone has that experience.
I hope we can find a way to design and deliver services and build a society so that more of us can and do …
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