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In July of 2012 I wrote about Eleanor Longden’s account of her diagnosis of schizophrenia and the medical treatment she received (“Schizophrenia Misdiagnosed?  Hearing Voices Network”).  She stated that mental illness did not cause her to hear voices but that ‘voice-hearing’ can be an attribute of a person’s humanity.  Hence people should have a greater voice in how they interpret and treat the experience of hearing voices, a symptom often attributed to schizophrenia.

In February of 2013 Longden gave a TED Talk¹ which was recently released online and viewed almost one million times.  If you have not heard of the Hearing Voices Network (HVN), Hearing Voices Movement (HVM) or Intervoice, chances are you will before long.  The grassroots movement began in response to “the dangers of over-diagnosis and over-medication.”²  Pharmaceutical treatments for symptoms called schizophrenia have been under fire for some time, especially due to side effects, so you might find the HVM ideas appealing. Certainly, no one wants to experience misguided treatment for an ‘incorrect diagnosis,’ either.  In this post I’d like to clarify some aspects of HVN which, as Longden admits, have been misunderstood.

First, HVN and Intervoice do not discount the use of medication. As Longden states in an interview posted on Psychiatric Times, “we have never located ourselves as an ‘anti-psychiatry’ movement.”² The higher goal is to promote “honest, open discussions between patients and prescribers about the benefits and limitations of psychiatric drugs.”   Additionally, they reject the idea that “voice-hearing” is merely a symptom of a disease.  Rather, voice-hearing, for some individuals, is “akin to a variation in human behavior, like being left-handed,” or an experience to explore and learn from.³

If Not Schizophrenia, Then What?

The Intervoice website page, “Famous People Who Hear Voices,”4 has a list of people who acknowledged hearing voices, which they credited to a variety of sources: intuition, spirituality, “mental problems,” spirit guides, artist’s identification with created characters, conscience, angels and demons, and undetermined origins.  The list includes the following well-known people, none of whom was diagnosed with schizophrenia:

Anthony Hopkins, Brian Wilson (Beach Boys), Charles Dickens, John Frusciante (Red Hot Chili Peppers), Mahatma Gandhi, Sigmund Freud, and Philip K. Dick (author of Blade Runner and Total Recall), Richard Schumann (composer) and Socrates.

Should you doubt your diagnosis of schizophrenia based on such a list?

This Might Take a While

Dr. Ronald Pies responded to the Longden interview, first stating “there is no psychiatric disorder that can be diagnosed simply on the basis of ‘voice-hearing.’”  The symptom, though, needs a diagnosis.

Pies explains the word ‘diagnosis’ means “knowing the difference between.”  He said physicians need to “strive to know the difference between ‘voice-hearing’ in the context of an otherwise healthy and functional life, and ‘voice-hearing’ in the context of someone who is clearly suffering and incapacitated.”  Does the symptom come as a result of trauma, post-traumatic stress, a tumor, or complex seizures?  Is the voice part of a “deeply personal, spiritual experience” in a healthy life?

The physician’s responsibility, says Pies, is to take the time to discern the difference.  Unfortunately, in many cases a person with active psychosis has already progressed to a point of danger before ever having an initial appointment to assess possible causes.   The patient will likely find himself or herself rushed into the psychiatric pharmaceutical model of treatment.  With a person in crisis mode or possibly in danger, neither family members nor doctors might want to wait for the lengthier process of finding other diagnoses.  HVN makes the point that you have the right to know of other causes and/or treatments and to be treated with dignity as you search them out.

Gluten or Geodon?

In one of the replies to the interview between Dr. Allen Frances and Eleanor Longden, one mother noted that dietary sensitivities cause the voices her son hears.  Skipping meals and drinking alcohol also precede the symptom.  Her son who is diagnosed with schizophrenia works full time and treats the voices like a migraine – live through them and moves on.

Another person replying to the interview believes HVM does a disservice to patients by leading them away from the science-based approach to psychosis and schizophrenia.  Her daughter has a diagnosis of schizoaffective disorder, takes medication, and feels no need to explore the meaning of her hallucinations or delusions.

Where does this leave someone seeking a definitive way to treat symptoms called schizophrenia?  I do not believe any one regimen will suit every case.  This does not make your solution easy but it does allow for remedies or management tools that can lessen dependence on pharmaceuticals, if that is what you prefer.

“We see that every recovery story is unique,” says Longden, “and never advocate for restrictive, ‘one-size-fits-all’ policies.”

Obviously, we have more options to explore than ever before, but not everyone has the time it takes to filter through them.  For some, only one choice remains—for the moment—medication.  Nothing to be ashamed of.

References:

¹  “Eleanor Longden: Voices in My Head,” TED talk, Feb.2013, http://www.ted.com/talks/eleanor_longden_the_voices_in_my_head.html

²“Psychiatry and Hearing Voices:  A Dialogue with Eleanor Longden” by Allen Frances, MD.  Psychiatric Times. 9/27/13 http://www.psychiatrictimes.com/blogs/psychiatry-and-hearing-voices-dialogue-eleanor-longden?GUID=4EDD48DC-EB6E-4A5B-A452-B31972C1220B&rememberme=1&ts=11102013 3

³Intervoice website, http://www.intervoiceonline.org

[The site also includes the results of a poll based on the question, “What do you find most useful for coping with challenging/difficult voices?” No diagnoses are listed.]

4 “Famous People Who Hear Voices” compiled by Intervoice, http://www.intervoiceonline.org/about-voices/famous-people  accessed 10/18/2013.

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