L

ONDON —  The voices came often: three men, mocking her. Telling her she was stupid. Urging her to kill herself.  Psychiatrists diagnosed her with schizophrenia.

But Rachel Waddingham now rejects that diagnosis.

After more than a decade of taking medications and cycling in and out of mental hospitals, Waddingham has embraced a new way of thinking about her voices. She no longer tries to banish them with drugs, but accepts them as a part of herself. She now considers them a reflection of her feelings and experiences, signals that help her understand when and why she feels overwhelmed —  rather than authorities whose commands she should follow.

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This approach underlies a controversial international movement that raises fundamental questions about what it means to be mentally ill. The question at the heart of the debate: Do patients who hear voices — and suffer other symptoms that psychiatrists would consider severe —  have the right to direct their treatment, even if that means rejecting conventional therapies, such as psychiatric medication?

Some mainstream psychiatrists have concerns that people who are out of touch with reality and spurn treatment may pose a danger to themselves or others.

But the movement, which began in the Netherlands, has spread rapidly in the past three decades; there are now “hearing voices” support groups on all five continents, and over 180 in the U.K., alone, anchored by the Hearing Voices Network. The idea has been slower to take hold in the U.S., which has a strong medical model for treating mental illness, but is gaining steam there, too.

“For me, the bottom line is to find the most effective way of treating [the voices] — if the person wants to treat them — which should always include non-medical and medical options,” said David Penn, a psychology and neuroscience professor at the University of North Carolina at Chapel Hill. Penn, who studies psychosocial treatment for schizophrenia, said tactics such as meditation, exercise, and cognitive behavioral therapy can be viable options.

There are now about 90 support groups across the U.S., according to the Hearing Voices Network USA. Just last month, advocates of the approach held five training sessions for support group leaders. And in August, the World Hearing Voices Congress will be held at Boston University, the first time the meeting will take place in the U.S. Organizers are hoping for about 500 attendees, though some have expressed worries about having to apply for visas to the U.S., which ask about mental health status.

Many in the movement say they’re not mentally ill because their hallucinations don’t cause them distress or interfere significantly with their ability to move productively through life. They say diagnoses are too often subjective and unreliable. Indeed, some say that being labelled mentally ill — or being pushed to go on medications —  has caused them more problems than the voices they hear.

The movement’s leaders are careful to acknowledge that antipsychotics and other medications can work for some patients. But they also note that there is a trade-off between those benefits, which can be substantial, and severe and often unpleasant side effects, such as significant weight gain that can lead to diabetes. And there are questions about the long-term effectiveness of psychiatric medications.

In workshops and support groups, movement advocates try to reassure people who are frightened by the experience of hearing voices that it’s not unusual and doesn’t necessarily portend a spiral into psychosis. They offer concrete strategies for coping, including trying to set up appointments to talk to the voices at periodic intervals — and wearing headphones while doing so, so it will look to the outside world like you’re simply talking on the phone. A workshop at the World Hearing Voices Congress promises tips on negotiating alternative realities.

“For us, voices are a signal, they are something that tell you about your life.”

Dr. Dirk Corstens

“For us, voices are a signal, they are something that tell you about your life,” said Dr. Dirk Corstens, a psychiatrist and psychotherapist in Maastricht in the Netherlands and a leader in the movement. “You have to listen to [them]. Not obey, but listen.”

Many recovered voice hearers say that once they engage with the voices, their mental health improves — and the voices become nicer as well.

Since going off her medications, for instance, Waddingham has been able to take on demanding full-time jobs, such as serving as a past project manager at a nonprofit mental health advocacy organization. And she’s gotten married.

Now 39, she lives in Faversham, England, about 50 miles east of London, works as a therapist, and gives speeches about voice hearing and recovery strategies around the country. She’s also writing a book and applying for Ph.D. programs.

She hears more voices than ever — about 13 at the moment, she estimates. And they continue to tell her to hurt herself or others. Waddingham acknowledges that hearing the voices “can be difficult.” She still has days when it’s hard to cope and she needs to sit home alone and pull a blanket around her. Still, she chooses not to use medication —  even though the drugs did reduce the number of voices she heard.

“I’m not a tragic case,” she said.

‘Unusual, but not pathological’

Many psychiatrists see losing touch with reality —  for example, hearing voices — as a quintessential symptom of severe mental illness and drugs as the most effective treatment to keep the patients from harming themselves or others.

There is some research to support this worry: In one seminal U.S. study of 1,410 people with schizophrenia, those who experienced hallucinations, including hearing voices that others don’t hear, were more likely to commit serious violence, though the overall likelihood of violence was still low, according to Jeffrey Swanson, a professor of psychiatry and behavioral sciences at Duke University. He was a co-author on that paper, published in 2006 in the Archives of General Psychiatry.

“Psychiatrists are the experts in treatment that can be helpful, so they should be involved … and try to make sure patients don’t lose insight and get into serious trouble.”

Jeffrey Swanson, psychiatry professor

But Swanson said there’s “a big difference” between patients who know that the voices are only being heard by themselves and those who don’t.

Most psychiatrists these days want patients to “share in the decision-making” and come up with a personalized treatment plan, Swanson said. “At the same time,” he added, “psychiatrists are the experts in treatment that can be helpful, so they should be involved, monitor what is happening, and try to make sure patients don’t lose insight and get into serious trouble.”

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How common is it to hear voices? The numbers vary widely, but one review of 17 existing studies across nine countries found that, on average, about 1 in 8 people surveyed reported an experience of hearing a voice that wasn’t real.

“The findings support the current movement away from pathological models of unusual experiences and towards understanding voice-hearing as occurring on a continuum in the general population,” the researchers wrote in the study, published in 2011 in the Journal of Mental Health.

Charles Fernyhough, a psychology professor at Durham University in the U.K. who studies the topic, said one theory holds that the phenomenon appears to be similar to the self-talk that everyone does. It seems a certain percentage of people don’t experience their internal monologues as being something that they themselves have produced, leading them to experience the voices as coming from another person.

Voice hearing “is unusual, but it’s not in itself pathological,” Fernyhough said.

Finding comfort in invisible friends

Lisa Forestell, of Somerville, Mass., has heard voices for as long as she can remember. When she was very young, she thought everyone did, and spoke out loud to hers, two girls and a boy. “I didn’t seem to notice any sort of negative feedback from the rest of my world,” she said.

But when she began school, a teacher told her that the voices weren’t allowed to come to school. Forestell “made a pact” with her voices that they would only talk to her in private. It mostly worked.

She still was teased, though. And she noticed that in the media, people who heard voices were often depicted as crazy or criminal. “What [these experiences] underscored for me is that I was ‘other.’ I was weird,” said Forestell, who is now 51. “I considered it was a superpower or a cool thing, but really the message that was coming to me was that it  wasn’t a good thing.”

Though she found her voices meaningful and comforting — a little group of best friends who happened to be in her head — she didn’t tell anyone again for decades.

Only in 2009, while working for the Western Massachusetts Recovery Learning Community, which wanted to start a voice-hearers’ group, did she finally confide in her supervisor. “It was terrifying,” Forestell said.

One of the voices has grown up with her — the other two chose to remain children — and all are often sounding boards. When she first decided to go public as a voice hearer, for instance, the voices were cautious and said they didn’t want to be quoted. Now they are encouraging her to speak out, Forestell said.

For Rachel Waddingham, who first heard the voices when she was 18, learning to cope with them without medication changed her life.

After coming across the Hearing Voices Network about 15 years ago, she made a conscious decision not to identify as mentally ill. When she told her long-term psychiatrist she wanted to taper off her medication, she got resistance. “Why won’t you let me help you?” the psychiatrist asked.

But Waddingham said if she had a choice, she wouldn’t want to get rid of her voices. They have helped her in many ways: She is good at focusing because she has to block out the voices and skilled at managing conflict because the voices can be “pretty harsh.” She also thinks she is more generous as a person, more open to others’ perspectives and more in touch with her own anxieties. The voices serve as a kind of early warning system for internal stress.

“If I pay attention, I know before it becomes an issue,” she said.

Correction: An earlier version of this story misspelled the name of Lisa Forestell.

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  • Hi, Mr. McCrea,

    Thanks for your note, and for raising some important issues and controversies in the treatment of schizophrenia. I did read Dr. Moncrieff’s piece, which raises some objections to the Goff et al study, but by no means refutes its central findings, in my view. I would also have more confidence in Dr. Moncrieff’s claims had her article been published (like the Goff et al study) in a peer-reviewed medical journal, rather than on a blatantly anti-psychiatry blog site, subject to no professional editorial oversight.

    However, I was pleased to see Dr. Moncrieff acknowledge that

    “[Goff et al] correctly point out that results of naturalistic studies, like Martin Harrow’s long-term follow-up of people from Chicago, and the Finnish cohort study, are affected by the fact that patients who stop antipsychotics successfully are likely to have less severe conditions.”

    I was also pleased that Dr. Moncrief stated, “I still think antipsychotics can be useful, and that the benefits of treatment can sometimes outweigh the disadvantages, even in the long-term for some people.” I agree, but I would say, “for most people” with schizophrenia.

    I don’t intend to re-litigate here the long-standing debate over the Harrow and Wunderink studies. There is an excellent rebuttal to these studies–or, more accurately, an alternative interpretation–by my colleague, Dr. Joseph Pierre, available at:

    https://www.psychologytoday.com/blog/psych-unseen/201408/do-antipsychotics-worsen-schizophrenia-in-the-long-run

    Dr. Pierre’s piece is followed by many comments both pro and con. I stand by my position that there is no credible evidence provided by the Harrow or Wunderink studies demonstrating that outcome is worsened in schizophrenia by the continued or long-term use of antipsychotics. That said, we sorely need many more long-term, randomized, controlled studies before reaching any final conclusions re: long-term AP treatment. Moreover, I readily acknowledge that there are some settings (e.g., in nursing homes, and in adolescent populations) where antipsychotic medication is widely over-used or used for the wrong indications.

    Re: the WHO studies purporting to show that outcome for schizophrenia is better in non-industrialized or so-called “third-world” countries–I stand by my position that these studies are severely flawed and have been strongly challenged, if not refuted, by more recent work from Africa and Asia. Specifically, see this article from South Africa, which concludes:

    “The belief that community and family life in the developing world is widely intact and that it provides a nurturing environment that facilitates recovery and promotes social and economic empowerment of serious mentally ill individuals is dispelled as a myth. Idealization of the under-developed South as a haven for schizophrenia sufferers will only add to the already heavy burden experienced by these individuals, their families and these societies in coping with this disabling disease.” [1]

    Also see this abstract from Japan:

    “Large-scale, international outcome studies coordinated by the WHO concluded that outcomes for schizophrenia in developing countries were better than those in developed countries. However, hospital-based outcome studies in Asian countries do not consistently support this finding, illustrating the diversity of outcomes in schizophrenia Moreover, community-based outcome studies in developing Asian countries highlight the fact that there are many individuals with schizophrenia who have never been treated, and that outcomes for this group are poor if they remain untreated. [2]

    One comprehensive review of outcome concluded,

    “During the past 30 years, international psychiatry has embraced the notion that the course and outcome of schizophrenia is better in so-called “developing” countries. We believe our review of 23 studies in 11 low- and middle-income countries…provides enough evidence to justify a reexamination of this axiom.” [3]

    I could cite many more studies challenging, if not refuting, the claim that persons with schizophrenia do better in non-industrialized countries, but I will spare our over-burdened readers more at this point!

    Finally, I fully agree with you that antipsychotic medication is far from an ideal, totally benign, or sufficient approach to persons with severe psychiatric illnesses like schizophrenia. We do indeed need better voluntary outpatient care that integrates medication with psychosocial treatment; better access to “dual diagnosis” treatment (psychosis and substance abuse); and more accessible care for severely impaired persons who cannot afford optimal treatment.

    Regards,

    Ronald Pies MD

    1. Burns J: Dispelling a myth: developing world poverty, inequality, violence and social fragmentation are not good for outcome in schizophrenia. Afr J Psychiatry (Johannesbg). 2009 Aug;12(3):200-5.

    2. Kurihara T. [Outcome of schizophrenia in Asia: from the viewpoint of comparison between developed and developing countries].
    [Article in Japanese]. Seishin Shinkeigaku Zasshi. 2014;116(1):3-14.

    3. Cohen et al. Questioning an Axiom: Better Prognosis for Schizophrenia in the Developing World?
    https://academic.oup.com/schizophreniabulletin/article-lookup/doi/10.1093/schbul/sbm105

  • I appreciate the thoughtful comments submitted since my previous posting. As a matter of long-standing policy, I reply personally only to fully signed comments; however, I do want to address some important issues and misconceptions raised by several readers.

    1. I am very familiar with claims that long-term antipsychotic [AP] treatment is not effective or worsens outcome in schizophrenia, based on studies such as those of Harrow and Wunderink, and on World Health Organization data
    from non-industrialize countries. These claims have been critically examined many times and have been largely refuted. Moreover, the Harrow and Wunderink studies have been widely misinterpreted [1,2]. The most recent review of controlled studies of APs–by an international panel of experts–finds convincing evidence that long-term antipsychotic treatment for schizophrenia does not worsen long-term outcome for most patients with schizophrenia; on the contrary, AP maintenance reduces relapse and re-hospitalization rates. [1, 3]. There are also epidemiologic data finding
    improved “quality of life” for persons with schizophrenia who are maintained on AP medication, versus those who are not [4]. That said, there is a subset of patients who may do reasonably well with low-dose or no AP medication–but
    it is almost impossible to predict which patients will have that outcome.

    And, to repeat–all this has little or nothing to do with persons who merely “hear voices” and who may not have schizophrenia at all! These individuals need a meticulous evaluation to see whether there is a psychiatric disorder at all, and if so, what type.

    2. Involuntary administration of antipsychotic medication should always be a last resort, after all attempts at enlisting the patient’s cooperation have failed–and only in those cases in which the person poses a serious threat to him/herself or others or is clearly unable to care for himself or herself. Medication should always be a part of more comprehensive “bio-psycho-social” approach, including family counseling, vocational retraining, etc.

    To be sure: the court system in many states is far from perfect,
    and there are certainly cases in which patients may be inappropriately ordered by a court to receive involuntary treatment. However, this problem pales in comparison with the real scandal in the U.S. mental health care non-system; namely, the gross neglect and under-treatment of those with the most serious psychiatric disorders, many of whom wind up in jail or prison.[5]
    Sadly, the largest “mental health system” in the U.S. is now centered in our prisons, where care is often absent or substandard. Appropriate use of antipsychotic medication reduces the likelihood of such tragic outcomes and also improves the lives and livelihood of those who require AP medications.

    The issues of involuntary treatment–including mandatory outpatient treatment– are very complex, and are admirably covered in the recent book, “Committed: The Battle over Involuntary Psychiatric Care,” by Drs. Dinah Miller and Annette Hanson [6]. The foreword to this book, by Pete Earley (whose son has schizophrenia) speaks volumes, and I reproduce part of that here:

    “Imagine your child, a loving and brilliant young art student in college. One morning, his friends deposit him on your doorstep and tell you that he is crazy. He is argumentative, refuses to eat or sleep, and is convinced that he needs to go immediately to the White House because God has given him a message for the president. Imagine watching him pace back and forth in front of the television with tin foil wrapped around his head to keep the Central Intelligence Agency from reading his thoughts. Imagine him being arrested because he has broken into a stranger’s house to take a bubble bath. Imagine listening to someone you love scream at you, call you the enemy, tell you that he hates you. Imagine watching your son hit his own head to clear the voices inside his mind, which are screaming at him, telling him that he will die if he steps out of a car, taunting him to hurt himself . . . Picture that and remember that this is your son. What would you do?” [6]

    Respectfully,
    Ronald Pies MD

    Disclosure: Dr. Pies reports no financial or other affiliations with any pharmaceutical companies during the past ten years. He is now retired
    from clinical practice.

    References

    1. Pies, Ronald W. (22 February 2016). “Long-term antipsychotic treatment: Effective and often necessary, with caveats.” Psychiatric Times.
    http://www.psychiatrictimes.com/blogs/long-term-antipsychotic-treatment-effective-and-often-necessary-caveats/page/0/1

    2. Frances, Allen J. (16 February 2016). “Setting the record straight on antipsychotics.” Psychology Today.
    https://www.psychologytoday.com/blog/saving-normal/201602/setting-the-record-straight-antipsychotics

    3. Goff DC, Falkai P, Fleischhacker WW, et al. The Long-Term Effects of Antipsychotic Medication on Clinical Course in Schizophrenia. Am J Psychiatry. 2017 May 5:appiajp201716091016. doi: 10.1176/appi.ajp.2017.16091016.

    4. Pies R, Pierre J: https://pro.psychcentral.com/quality-of-life-and-the-case-for-antipsychotics/0015547.html

    5. http://www.nytimes.com/1994/10/06/us/the-mentally-ill-overwhelm-new-york-s-prisons.html?pagewanted=all&mcubz=0

    6. Earley P. Foreword. In: Committed. The Battle Over Involuntary Psychiatric Care. Miller D, Hanson A. Johns Hopkins University Press. Baltimore, 2016.

    For further reading: DJ Jaffe and E. Fuller Torrey MD. Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. Prometheus Books (April 11, 2017)

    • I can in no way agree with you that the possibility of deterioration due to long-term antipsychotic use has been discredited. The mainstream is apparently, and perhaps understandably, quite invested in discrediting such a possibility, but I have heard little to nothing that is convincing. Harrow’s study, in particular, is very well constructed and covered over 25 years of data with extremely low dropout rates for such a study. The most compelling part of the study is the comparison of “poor prognosis” psychotic diagnoses (primarily schizophrenia) to the “good prognosis” psychotic diagnoses (generally bipolar or other less severe diagnoses), where those with a worse diagnosis still do better when they take antipsychotics briefly or not at all than those with a better prognosis do when maintained on antipsychotics. Of course, these are naturalistic studies, so it is possible (as has been suggested) that only those who do well off antipsychotics remain off. However, this is merely a possible alternative explanation, not new data to discredit these findings. Moreover, if that were the case, one would expect the “poor prognosis” people to only rarely be successful without treatment, which is not what Harrow found at all. To actually discredit these studies would require showing that an alternative explanation was clearly superior to the proposed one, and no such proof has ever been proffered. The “Chinese study” often referred to as a counter-proof is rife with selection issues, as has been pointed out – those who recovered without antipsychotics would of course not be included in the sample of ‘schizoprhenic’ collected, so the cohort is completely different. Additionally, there is a very well-documented physiological mechanism that would explain why long-term use would likely be damaging, modeling off of addiction and tolerance research that is well accepted in the field of neurology.

      Moreover, the WHO studies have not even vaguely been challenged – in fact, the second WHO study was done because no one wanted to believe the first study’s findings, and it is one of the rare examples in psychiatry/psychology of essentially complete replication of the original findings. So again, all sorts of alternative explanations can be offered, but the original findings have never been refuted, and have, in fact, been independently replicated. The implications seem very clear: the use of antipsychotics to recover from psychotic disorders is not a given, and in fact, under the right circumstances, the majority may well be better able to recover with only acute use or no use of medication at all.

      The Goff article can hardly be taken seriously as a “review,” as it chose very selectively which data to include in the analysis. Despite this, the same weak “refutation by counterexplanation” is all that is offered to counter Wunderlink and Harrow’s seminal work. Moncrief’s response to Goff’s article is extremely detailed and dismantles much of Goff’s honestly quite subjective re-interpretation of the data: https://www.madinamerica.com/2017/05/inconvenient-truths-about-antipsychotics-a-response-to-goff-et-al/

      Just as a caveat, I am certainly not suggesting that antipsychotics are without utility – there are obvious short-term benefits for the kind of case you describe, and there do appear to be a certain subset of folks who simply can’t function without some kind of assistance of the medical variety in the long run. The Harrow groups, for instance, didn’t start to diverge significantly until after two years, which is certainly not a short-term effect. However, the WHO studies make it clear that those benefiting from long-term use could be less than a third of the total of people who experience psychotic breaks, whereas two thirds or more could recover without long-term use. Programs like Open Dialog in Finland have shown that psychosocial support can increase that figure to 80%. If these results are found in other non-Western countries (and similar figures were observed in the USA prior to the introduction of antipsychotics), it seems rather mean-spirited to avoid looking at this possibility merely because it challenges current common practices.

      As to the incarceration of those diagnosed with schizophrenia and other psychotic conditions, I of course agree that this represents a serious failure of the system. What I think is important to acknowledge is that it’s not only a failure of funding or insufficient services (both of which certainly apply), but a failure of our current paradigm to provide the necessary help. I point you in the direction of research on the “housing first” model, where folks are provided housing and other logistical support without requiring official enrollment in treatment. Symptoms decrease on the average as people are taken off the street, regardless of treatment status. So while mental illness may lead to homelessness, it appears that homelessness also leads to mental illness. You always speak eloquently in support of the bio-psycho-social model, yet in practice, my experience is that the BIO takes the bulk of the money and the energy, whereas the psychosocial needs of our clients are largely minimized or ignored. No amount of medication will address these needs, and the recent move toward more enforced community treatment continues to minimize their importance, and enforced medication is increasingly seen as the best or only solution, rather than the “last resort” as you suggest.

      I’d be very interested in hearing more from you on how we can improve the system so that these needs are properly prioritized as the BPS model would suggest is necessary.

      Thanks for your response.

      Stephen T. McCrea, MS
      Olympia, WA

  • By well-established law and U.S. Supreme Court rulings [1], any mentally competent person has the “right” to refuse any medical treatment–and no psychiatrist (or anyone else) can force a mentally competent person to take antipsychotic (AP) medication simply because the person is “hearing voices”.

    Involuntary administration of AP medication is authorized by law, in most states, only under extremely restricted circumstances; e.g., on an emergency basis to sedate a violent or self-injurious psychotic patient. Longer term involuntary AP treatment may be authorized by a court ruling called a “substituted judgment” in Massachusetts–but this would be extremely unusual merely because someone reported hearing “voices.” Typically, substituted judgments are rendered when the patient has been chronically psychotic, a danger to himself or others, and has repeatedly refused voluntary treatment.

    It is crucial to note that merely “hearing voices” does not by itself mean that the person lacks “decisional capacity” or (in legal terms) “competence” to make health care decisions. Nor does it necessarily mean the person has schizophrenia or related illnesses (and even in such serious illnesses, decisional capacity may be preserved in certain areas of life).

    Saying that someone “hears voices” is like saying that you “have a fever”–it doesn’t tell you anything about the underlying reasons or conditions responsible for the voices. People may, either occasionally or regularly, hear inner “voices” owing to a wide variety of conditions. These include, for example, alcohol intoxication; drugs of abuse; post-traumatic stress disorder (PTSD); certain brain tumors; very brief psychotic episodes; and schizophrenia. Hearing the voice (or often, seeing the image) of a recently deceased loved one is also common in the days following the death, and is not an indication of mental illness.

    More importantly: the fixation by certain groups on “hearing voices” misunderstands the reasons why people with schizophrenia normally require treatment, and why they usually do not do well (socially or vocationally) without antipsychotic medication. (There is, however, a subset of patients who may not need long-term AP treatment).

    Hearing voices (auditory hallucinations) is not the primary reason for incapacity and social/vocational disability in schizophrenia, though some “voices” (e.g., command hallucinations telling the patient to kill himself or someone else) can be extremely frightening. Most of the incapacity in schizophrenia is due to the cognitive deficits and social withdrawal that characterize this illness. And no qualified mental health professional would diagnose schizophrenia based solely on the patient’s experience of “hearing voices”!

    For more on this and related issues, please see:

    https://pro.psychcentral.com/trivializing-the-suffering-of-psychosis-how-the-british-psychological-societys-report-fails-our-sickest-patients/006850.html

    https://www.psychologytoday.com/blog/psych-unseen/201503/psychosis-sucks

    Respectfully,
    Ronald W. Pies MD [Professor of Psychiatry]

    1. Cruzan v. Director, Missouri Department of Health. (This USSC decision established a mentally competent patient’s right to refuse medical treatment, even if that refusal would ultimately lead to the patient’s death.

    • With all due respect auditory hallucinatuons will not engage a judge in a debate over their meaning. Being risk averse very few judges would refuse to approve a 72 hour civil commitment for soneone with auditory hallucinations despite their remonstrations, and most admitting desks, given the need for an admitting ICD-10 diagnosis would call this psychotic disorder NOS until proven otherwise.

    • My experiences comport with Pharmvet. I did involuntary commitment evaluations for a while, and the only commitments I ever saw overturned were ones where the person was psychotic due to drug use. While your comments (Dr. Pies) appear to make sense overall, it doesn’t seem like the situation is treated that way in the real world (aka only giving antipsychotics for emergent, acute situations and/or respecting the decision-making capabilities of the diagnosed person when they appear capable of rendering such decisions). Community treatment orders were common, and violations were effectively punished by re-hospitalization, even when there was no ongoing danger. I refused to go out on one call on a person who wrote vaguely threatening letters to the mayor and who had been detained once and ordered to take antipsychotics. She was delusional but was an old lady with neither the means nor the intent to harm the mayor or anyone else, and her own doctor clearly stated to us that continuing her on antipsychotics would probably be of little to no benefit for her condition, but she was re-hospitalized anyway and forced back on antipsychotics, which she clearly did not want to take and which decision she clearly had the capacity to understand. This was one of many such examples.

      I would also encourage you to consider the WHO cross-cultural studies in the 90s showing better outcomes in countries who used a lot less antipsychotics, as well as the works of Harrow and Wunderlink (among others) which suggest that antipsychotics are not a long-term solution for psychotic disorders in a majority of cases. They appear to be an effective short-term intervention for acute psychosis, but my experience again tells me that psychiatry has little to nothing to offer for the long term except for forcing these people back onto drugs every time they decompensate. Something needs to change about this process, and maybe step one is recognizing that people are being medicated frequently because most of the profession had nothing else to offer. Maybe the first step to realizing this is making sure that the legal precedent you mention is respected and the mental health system is forced to look at what else they can do besides trying to expand community treatment orders to force what appears to be a short-term intervention over the long term on people who clearly and rationally decide they don’t want it.

  • It is kind of amazing that this is even a question. Why would someone automatically give up their right to choose and refuse medical care just because they hear voices??? The idea that we can force “treatment” on people just because of some experience they’re having is disturbing, and yet it is accepted broadly by Americans who would otherwise strenuously object to such a violation of constitutional rights. Anyone have any idea why this question doesn’t have an obvious constitutional answer?

    — Steve

    • Steve, when you are a paranoid schizophrenic and your auditory hallucinations take the form of instructions from God to go back to your boss that canned you with an AK-47, I believe that not only is medication but involuntary comittment is required as well.

    • Your answer does not reply to the question at hand. The question is if hearing voices means you should lose your rights. The obvious answer is NO. There have always been mechanisms for detaining those in society who are a danger, and those would obviously apply to those hearing voices just as they would to anyone else in society. But the criterion is presenting DANGER, not HEARING VOICES.

      Additionally, the societally-accepted concept that medication is effective for reducing such danger is not necessarily borne out by research. In fact, the long-term use of antipsychotic drugs has been shown to decrease the likelihood of recovery from psychotic conditions, even though they do appear to be effective in reducing psychosis in the short term. See the works of Harrow and Lex Wunderlink for more information on this research. Hence, it does not follow that being dangerous automatically requires or is resolved by being on medication. It works great for some people, but apparently not for others.

      — Steve

  • I lived in a family with three diagnosed schizophrenic siblings, a mother with Munchausen disorder, and a father with bipolar disorder. I got the tshirt. I can tell you as a survivor that the key to living with them was not necessarily meds, but taking the time to find out what the voices were saying. I didn’t argue with the voices, just gave a point of view that was different. This changed the tone and tenor of what they were saying, and I would ask if the voices had their best interest in the demands. Two of my siblings required meds and counseling. One committed suicide and struggled with drug abuse. I believe the answer may be a higher level of counseling techniques and some medication to reduce the risk of harm to self and others. By the way, there is a pattern in the voices. If you can figure out the pattern, management is much easier.

    • Thanks for sharing your story! It’s important that doctors and family members and other sufferers hear this kind of story. Most psychiatrists and psychologists are taught that engaging the voices is foolish and dangerous and that their content is random and meaningless. Yours and many other stories from survivors tell a very different story.

  • This condition was originally described in the 1970’s by the esteemed Drs. Waters and Gilmour, when they opined “There’s someone in my head but it’s not me”.

    • Hardly. Carl Jung was discussing ‘inner voices’ in his works in great detail in the early 20th century.

  • Research under taken in California came to the conclusion that 37% of the individuals undertaking therapy that taught them how to talk to the voices in their head’s resolved on an ongoing basis their mental health issues.

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