“Hearing Voices” Movement…Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben’s symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only “understood” their origin?

brain in hands
Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  “hearing voices” movement – or, in the US, something called Mad In America. I’m glad it has worked for some – but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist “voice hearers,” as some wish to be called. Unfortunately, most of these groups don’t want to recognize the very different needs of people with severe mental illnesses.

Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or “psychiatric labels,” they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what’s real and what’s not real can be very poor advice.

Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.

My comment to her post follows. A slightly shorter version appeared in HuffPost.

What do you think?

We are all “a little bit mad”, if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.

Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a “thermostat of reality” which seems to save us from disaster.

My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and – most sadly – any sense of joy.

Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.

The “hearing voices” concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone – much as we wish it were true, believe me – is not only shortsighted but downright dangerous.

Ask any family who has lost a loved one to schizophrenia’s voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.

We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.

Thank you, Susan.
Randye Kaye – author, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope

3 thoughts on ““Hearing Voices” Movement…Not For All

  1. Thank you, Randye, for your very thoughtful observations.
    It’s wonderful that you are helping to open up discussions about the various ideas about mental illness and the kinds of services that offer the best help.

  2. I can absolutely relate to this. I’ve read “Mad in America” and eagerly held on to some of those ideas. However, our experience mirrors yours. My son is only 14 and has already been hospitalized three times for psychosis. Meds help, and we are still seeking the right one.

    We’ve tried so much. Diet, vitamins, exercise, sunshine, etc. These help a bit, but unfortunately not as much as the meds.

    This said, the voices absolutely mystify me. The fact that so many of them say the same things is interesting indeed. I have to admit that I think there is more going on than chemical imbalance, although we may not ever know what exactly that is while we’re on earth.

    1. I hear you Michelle – and thank you, Susan.

      How I wish my son could, somehow, “manage” his voices and live a functional life. This season on “Perception” the character Dr. Daniel Pierce is struggling to balance his medical treatment with “just enough” voices activity to help him solve crimes. Curious to see where the storyline goes – hopefully not to the land of fastasy cliche. Each case is unique – but, as we’ve each discovered, this illness is often far beyond the solutions that diet, exercise and therapy can offer. Sure, these matter – but the answer is far more complex, and (at least in our case) the matter of chemical/electrical/DNA balance must be addressed. Research must continue as well, so we can find solutions that do not bring awful side effects as part of the picture.


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