Read the original op-ed from the TED speaker who inspired this post: “Why I Thank the Voices in My Head.”
Eleanor Langdon is an extraordinary woman who has shown remarkable grit and creativity in transforming her disturbing symptoms into useful tools. Hats off to her for finding such a fruitful path to personal recovery and for sharing her techniques and inspiring story so that others may benefit from what she has learned.
There are many precious lessons we can draw from this tape — never give up hope; never forget the person who is ill by focusing only on the illness; normalize the experience of mental illness rather than stigmatizing it; and use the symptoms as a way of gaining self understanding and self acceptance. Clearly standard psychiatric treatment was a disaster for Eleanor Langdon and she had to find her own way to health, assisted by other voice hearers.
Langdon’s advice on how to adjust to, rather than fight or follow, the voices will doubtless be a great help to many. But we must also recognize that it won’t work for many others and may sometimes be harmful, even dangerous.
Schizophrenia is definitely not a one size fits all “disease” with one right path to recovery. The diagnosis is also often applied loosely, leading to inappropriate and harmful treatments.
And the sad fact is that we don’t understand schizophrenia a whole lot better now than we did when the term was first coined by Bleuler one hundred years ago. There is a big disconnect between our remarkable recent advances in basic neuroscience and the deep rut in clinical diagnosis and treatment.
The great wonder of the past several decades has been the development of scientific tools that allow us to image the intricacies of brain functioning, to trace neural networks, to determine the complex workings of individual neurons, and to study the genetic changes that may predispose to at least some mental disorders.
The great disappointment is that on the clinical side there have been no great advances in diagnosis and only incomplete improvements in treatment.
We still have no biological tests for schizophrenia and no real understanding of what causes its symptoms. Our medicines are usually effective and often essential, but they provide only partial relief for most and don’t work at all for some. The social context of care for schizophrenia is often at least as important as its medical treatment.
The obvious question is why has it been so difficult to translate the brilliant basic neuroscience into dramatic clinical breakthroughs? This translational gap is by no means unique to psychiatry. For example, we have learned a great deal about the mechanics of cancer, but are still not very successful at treating it. More years of life have probably been saved by reducing smoking than by all the advances in cancer treatments put together.
And psychiatry has to make a uniquely difficult translational leap from its basic science to its clinical practice. The brain is the most complicated contraption in the entire known universe. Its three pounds contain as many neurons as there are stars in our galaxy. Each is connected to one thousand other neurons in networks that form during a developmental process of neuronal migration that requires the most complex of imaginable choreography. The wonder is not that things sometimes go wrong with us, but that we work at all.
Schizophrenia is most certainly not a unitary disease. Its symptom presentation is very variable and there will likely be hundreds of different underlying causes. Indeed, the term “schizophrenia” is confusing, stigmatizing, and has probably outlived is usefulness.
But the concept of schizophrenia still remains necessary and is no myth, as claimed by Thomas Szasz and his followers. The millions who have lived through the suffering caused by hallucinations, delusions, disorganized thinking, and blunting of emotions and motivation can attest to the reality of the problems — if not always agreeing to how they are best conceived and treated. .
If not disease and not myth, what is it? Schizophrenia is no more and no less than a very useful construct that temporarily helps us to bring together a package of painful symptoms that often occur together and at least partially predict course and treatment response. But the construct “schizophrenia” is fallible and temporary because greater knowledge will undoubtedly divide this one bulky, heterogeneous, and stigmatizing label into more precise and useful parts that will have many different causes and perhaps many different treatments.
The voices of schizophrenia are also so heterogeneous that it is currently impossible to draw general conclusions from any one person’s experience.
Some voices are benign guides; others are malignant dictators that imperiously command the performance of dangerous acts. Some voices are experienced as if another person is talking to you, others are no more than vocalized inner thoughts. Some voices can be resisted; others are peremptory. Some are felt to be fully real, others are recognized as just voices. Some voices occur as isolated symptoms, others are associated with crippling delusions and disorganized thinking.
Most important for our purposes here, some voices can be adapted to in the productive way described by Eleanor Langdon. But most are overwhelming, unremitting, and require medicine in addition to the powerful tools of therapy and recovery. Sad to say, Eleanor Langdon’s inspiring triumph is not a safe blueprint for most people who suffer from what we call schizophrenia. There is no doubt that psychiatric treatment has been very harmful to some, but is has also been helpful, and often, necessary for many others.
There is no doubt that schizophrenia is sometimes over-treated with medicine — but currently the much greater problem in the U.S. is its massive undertreatment caused by the radical slashing of state mental health budgets and the monopoly that allows Big Pharma to overprice the medicines.
Shocking facts: We have closed one million psychiatric beds in the past fifty years, but during the same period we have locked up over one million psychiatric patients in prisons. Most were arrested for nuisance crimes that could have been prevented had they received adequate outpatient care and decent housing. Once in prison, people with psychiatric problems fare especially poorly and disproportionately wind up in solitary confinement — which can drive anyone crazy.
This shameful throwback to the past barbaric treatment of the mentally ill requires immediate redress. Mental health professionals and the recovery movement provide what are really compatible and complementary solutions. We must work hand in hand to advocate for more funding, better care, and adequate housing.
There will never be just one answer that works for everyone and it makes no sense for there to be any conflict between psychiatry and recovery. We must unite if we are to win the David vs Goliath battle to liberate the one million patients now languishing in prisons.
Allen Frances is a psychiatrist and professor emeritus, Duke University. He blogs at the Huffington Post.