Hope and Recovery

Pat Deegan reflects on her own experience an shares about the need for hope in recovery:

He said, I should retire from life and avoid stress. I have come to call my psychiatrist’s pronouncement a “prognosis of doom”. He was condemning me to a life of handicaptivity wherein I was expected to take high dose neuroleptics, avoid stress, retire from life and I was not even 18 years old! My psychiatrist did not understand that boredom is stressful! A life devoid of meaning and purpose is stressful! A vegetative life is stressful. A life in handicaptivity, lived out within the confines of the human services landscape, where the only people who spend time with you, are people who are paid to be with you – that is stressful! Living on disability checks from the government is stressful.

When I was diagnosed I needed hopeful messages and role models. I needed to hear that there were pathways into a better future for me. I needed to connect with others who had been diagnosed with schizophrenia and who had recovered lives of meaning and purpose. I needed to find others who had completed college and who had jobs and who got married and had families, and had an apartment and a car.

Why is hope important to recovery? Because hope is the root of life’s energy. In order to recover, I had to turn away from the wish that psychiatrists could fix me. I had to turn away from the myth that psychiatric treatments could cure me. Instead, I had to mobilize all of the energy I had. I had to become an active partner in my recovery. I had to learn to work collaboratively with my treatment team and to draw strength from the wisdom of my peers. I had to begin striving for my goals, not when I was “all better”, but from day one. I had to believe that there was a life for me beyond the confines of the mental health system. That is hope. Hope is the tenacious pursuit of pathways to a better life, despite the odds. Without hope, there is no recovery.

Amen. Please go and read the whole post at her blog and spend some time poking around her posts.

NIMH acknowledges that antipsychotics worsen prospects for long term recovery

Mad in America
Mad in America (Photo credit: Wikipedia)

Thomas Insel, the Director of the National Institute on Mental Health comments on a recent study of the long term effects of antipsychotic maintenance for schizophrenics. The study looked at patients who discontinued antipsychotics compared to those who were maintained on antipsychotics.

…by seven years, the discontinuation group had achieved twice the functional recovery rate: 40.4 percent vs. only 17.6 percent among the medication maintenance group.

…antipsychotic medication, which seemed so important in the early phase of psychosis, appeared to worsen prospects for recovery over the long-term. … At least for these patients, tapering off medication early seemed to be associated with better long-term outcomes.

…It appears that what we currently call “schizophrenia” may comprise disorders with quite different trajectories. For some people, remaining on medication long-term might impede a full return to wellness.

Mad in America reports that this information has been around for years and the establishment has willfully ignored it. He adds that there’s also a better way to respond to psychosis.

The Open Dialogue therapy protocol delays the use of antipsychotics in first-episode patients, instead utilizing psychosocial support and selective use of anxiety-reducing benzodiazepines (e.g. Ativan, Klonopin,Valium) with the hope that patients can “chill out,” and get through their first crisis without ever going on antipsychotic medications. And if patients need to go on antipsychotics, the Open Dialogue protocol allows for them to subsequently try to taper from the drugs.

The results? “With this selective use of antipsychotics,” Whitaker reports, “Open Dialogue has produced the best long-term outcomes in the developed world. At the end of five years, 67% of their first-episode patients have never been exposed to antipsychotics, and only 20% are maintained regularly on the drugs. With this drug protocol, 80% of first episode patients do fairly well over the long-term without antipsychotics.”

This begs a critical question. If antipsychotics are impede the recovery of many schizophrenics, what do they do to the millions of non-psychotic adults and children that are prescribed them?

One other observation. This notion of “functional recovery rate” sounds a lot like quality of life. Interesting that this is the kind of measurement exposed this pharmacological treatment as harmful for many patients and some prominent advocates of a pharmacological treatments have dismissed quality of life as an outcome measurement.

UPDATE: This is precisely why so many of us have been so concerned about mergers between mental health and addiction treatment systems. Many of these mergers are really the mental health system taking over addiction treatment systems.

2012′s most popular posts #1 – Hope and Recovery

Pat Deegan reflects on her own experience an shares about the need for hope in recovery:

He said, I should retire from life and avoid stress. I have come to call my psychiatrist’s pronouncement a “prognosis of doom”. He was condemning me to a life of handicaptivity wherein I was expected to take high dose neuroleptics, avoid stress, retire from life and I was not even 18 years old! My psychiatrist did not understand that boredom is stressful! A life devoid of meaning and purpose is stressful! A vegetative life is stressful. A life in handicaptivity, lived out within the confines of the human services landscape, where the only people who spend time with you, are people who are paid to be with you – that is stressful! Living on disability checks from the government is stressful.

When I was diagnosed I needed hopeful messages and role models. I needed to hear that there were pathways into a better future for me. I needed to connect with others who had been diagnosed with schizophrenia and who had recovered lives of meaning and purpose. I needed to find others who had completed college and who had jobs and who got married and had families, and had an apartment and a car.

Why is hope important to recovery? Because hope is the root of life’s energy. In order to recover, I had to turn away from the wish that psychiatrists could fix me. I had to turn away from the myth that psychiatric treatments could cure me. Instead, I had to mobilize all of the energy I had. I had to become an active partner in my recovery. I had to learn to work collaboratively with my treatment team and to draw strength from the wisdom of my peers. I had to begin striving for my goals, not when I was “all better”, but from day one. I had to believe that there was a life for me beyond the confines of the mental health system. That is hope. Hope is the tenacious pursuit of pathways to a better life, despite the odds. Without hope, there is no recovery.

Amen. Please go and read the whole post at her blog and spend some time poking around her posts.

 

A brain disease AND (fill in the blank)

 

Schizophrenia
Schizophrenia (Photo credit: Alaina Abplanalp Photography)

 

Not addiction related, but a very interesting look at  new directions for treating and understanding schizophrenia.

 

The article opens by reflecting on where we stand with our attempts to understand the causes:

 

…the outcome of two decades of serious psychiatric science is that schizophrenia now appears to be a complex outcome of many unrelated causes—the genes you inherit, but also whether your mother fell ill during her pregnancy, whether you got beaten up as a child or were stressed as an adolescent, even how much sun your skin has seen. It’s not just about the brain. It’s not just about genes. In fact, schizophrenia looks more and more like diabetes. A messy array of risk factors predisposes someone to develop diabetes: smoking, being overweight, collecting fat around the middle rather than on the hips, high blood pressure, and yes, family history. These risk factors are not intrinsically linked. Some of them have something to do with genes, but most do not. They hang together so loosely that physicians now speak of a metabolic “syndrome,” something far looser and vaguer than an “illness,” let alone a “disease.” Psychiatric researchers increasingly think about schizophrenia in similar terms.

 

The author reports disenchantment with a simple biomedical model and offer three reasons.

 

First, disappointment with medication:

 

The first reason the tide turned is that the newer, targeted medications did not work very well. It is true that about a third of those who take antipsychotics improve markedly. But the side effects of antipsychotics are not very pleasant. They can make your skin crawl as if ants were scuttling underneath the surface. They can make you feel dull and bloated. While they damp down the horrifying hallucinations that can make someone’s life a misery—harsh voices whispering “You’re stupid” dozens of times a day, so audible that the sufferer turns to see who spoke—it is not as if the drugs restore most people to the way they were before they fell sick. Many who are on antipsychotic medication are so sluggish that they are lucky if they can work menial jobs.

 

Second, the genetics are much more complicated than was assumed:

 

The second reason the tide turned against the simple biomedical model is that the search for a genetic explanation fell apart. Genes are clearly involved in schizophrenia.

 

But:

 

The effort to narrow the number of genes that may play a role has been daunting. A leading researcher in the field, Ridha Joober, has argued that there are so many genes involved, and the effects of any one gene are so small, that the serious scientist working in the field should devote his or her time solely to identifying genes that can be shown not to be relevant.

 

Third, global research is revealing that culture and social factors play a much bigger role than previously understood:

 

The third reason for the pushback against the biomedical approach is that a cadre of psychiatric epidemiologists and anthropologists has made clear that culture really matters. In the early days of the biomedical revolution, when schizophrenia epitomized the pure brain disorder, the illness was said to appear at the same rate around the globe, as if true brain disease respected no social boundaries and was found in all nations, classes, and races in equal measure. … In recent years, epidemiologists have been able to demonstrate that while schizophrenia is rare everywhere, it is much more common in some settings than in others, and in some societies the disorder seems more severe and unyielding.

 

For example:

 

Schizophrenia has a more benign course and outcome in the developing world. The best data come from India. In the study that established the difference, researchers looking at people two years after they first showed up at a hospital for care found that they scored significantly better on most outcome measures than a comparable group in the West. They had fewer symptoms, took less medication, and were more likely to be employed and married.

 

The article closes with a few examples of alternative strategies from other countries. I’m sure it will provoke controversy, but seems increasingly hard to defend the status quo.

 

 

 

 

 

“Disease” and recovery

“Once I became my diagnosis, there was no one left to recover.”

1212mentalhealth-RW
(Photo credit: Robbie Wroblewski)

Yesterday’s Pat Deegan post led me to Dr. Daniel Fisher’s work on mental illness recovery. He promotes an “empowerment” model of recovery that he contrasts with a “rehabilitation” model of recovery.

According to this vision, one is capable of recovering from the mental illness itself, not merely regaining functioning while remaining mentally ill. … We realize that the idea that people can recover from mental illness will create more work on the part of entitlement programs. Instead of a single, once-in-a-lifetime determination of disability, episodic periods of disability will need to be supported.

In this model, treatment is part of self-managed care. The goal of treatment here is assisting people in gaining greater control of their lives and assisting them in regaining valued roles in society. The primary goal of treatment should not be to control the person’s behavior. The use of medication does not itself mean that a person has not recovered from mental illness. It depends upon the degree to which the person and those around them see the medication as constantly needed. Ideally, each person should learn to take medication on an as-needed basis, after having learned to self-monitor. Many people also embrace holistic health as an alternative to medication.

One of the things I find fascinating about this movement is that they challenge the brain disease model of mental illness.

Not surprisingly, many researchers have concluded that medication alone is best for the treatment for mental illness. Despite recent convincing research showing the usefulness of psychotherapy in treating schizophrenia, psychiatric trainees are still told “you can’t talk to a disease.” This is why psychiatrists today spend more time prescribing drugs than getting to know the people taking them.

I, too, used to believe in the biological model of mental illness. Thirty-one years ago, as a Ph.D. biochemist with the National Institute of Mental Health, I researched and wrote papers on neurotransmitters such as serotonin and dopamine. Then I was diagnosed with schizophrenia — and my experience taught me that our feelings and dreams cannot be analyzed under a microscope.

Schizophrenia is more often due to a loss of dreams than a loss of dopamine. At the NEC, we try to reach out across the chasm of chaos. I know there are many people who feel they have done all they can, have struggled against mental illness to no avail, and we understand their pain. Yet we believe that recovery is eventually possible for everyone — although it can take a long time to undo the negative messages of past treatments. We can offer hope from first-hand experience.

Another post identifies common factors in these recovery experiences. I’ve summarized them. It’s worth noting that that author reports that people achieving recovery reported that traditional psychiatric treatment was a barrier to achieving these factors.

Factor #1Hope in the possibility of real recovery. All participants in all three of my research studies expressed that in order to even begin the journey towards real recovery, they first had to believe that such recovery is actually possible.

Factor #2Arriving at an understanding of their psychosis alternative to the brain disease theory. Every participant went through a process of developing a more hopeful understanding of their psychotic experiences, generally coming to see their psychosis as a natural though very risky and haphazard process initiated by their psyche in an attempt to cope and/or heal from a way of being in the world that was simply no longer sustainable for them.

Factor #3Finding meaning. All participants expressed how important it was for them to connect with meaningful goals/activities that made their life worth living—that provided them with some motivation to greet each new day with open arms and to channel their energy productively.

Factor #4Connecting with their aliveness. All participants reported how important it was for them to connect more deeply with themselves—particularly with their feelings, needs, and sense of self agency.

Factor #5Dealing with their relationships. All participants expressed the importance of healing and/or distancing themselves from unhealthy relationships and cultivating healthy ones.

Rethink Mental Illness
Rethink Mental Illness (Photo credit: Wikipedia)

It seems that the biggest objection to the disease model is that mental health consumers experience this model as something that puts them in a passive position, waiting for someone or something to come along and hopefully mend their broken brain just enough to allow them to get through life with something less than full personhood.

This article in Friday’s Wall Street Journal gets at the same thing with respect to much less severe mental illness as experienced by young people.

When I first began to take antidepressants, I understood that doing so meant I had a chemical imbalance in my brain. I knew that, arguably, I should find that comforting—it meant that what I was going through wasn’t my fault—but instead it made me feel out of control. I wanted my feelings to mean something. The idea that my deepest emotions were actually random emanations from my malfunctioning brain didn’t uplift me; it just further demoralized me.

In my 20s, I sought out talk therapy, partly to deal with the questions that using antidepressants raised for me and partly because the effects of the drugs, spectacular in the short term, had waned over time, leaving plenty of real-world problems in their wake. Only then did I begin to notice just how nonrandom my feelings were and how predictably they followed some simple rules of cause and effect.

Looking back, it seems remarkable that I had to work so hard to absorb an elementary lesson: Some things make me feel happy, other things make me feel sad. But for a long time antidepressants were giving me the opposite lesson. If I was suffering because of a glitch in my brain, it didn’t make much difference what I did. For me, antidepressants had promoted a kind of emotional illiteracy. They had prevented me from noticing the reasons that I felt bad when I did and from appreciating the effects of my own choices.

What’s so interesting about this is that people with addictions have a completely different experience. Within the context of addiction recovery, discovering that one has the illness of addiction means that one has a lot of work to do and a lot of responsibility for their recovery. This model is not without its limitations, but it’s amazing how many people find an admission of powerlessness  to be so empowering.

I have two thoughts.

First, there seems to be a parallel here. People band together in response to the failure of existing institutions and, together, find an alternative path to recovery. The institutions use their size, wealth, connections, research and publications to de-legitimize this path to recovery. It’s probably a very good thing that PhRMA didn’t have a stake in addiction treatment in 1935.

Second, as the Affordable Care Act is implemented and we need to start really grappling with the cost of chronic diseases, this empowerment model of recovery fits very well with a lifestyle medicine approach. Unfortunately, our medical system is not structured (staffing, reimbursement, monitoring, research, etc.) to support this approach.

I think mental health and addiction treatment have a lot to learn from lifestyle medicine, but I also think addiction and mental illness recovery movements have a lot to teach lifestyle medicine about how patients can maintain wellness over decades.

NOTE: Dawn Farm is not anti-medication, though we do have concerns about the way they are used. More information here.

Hope and Recovery

Pat Deegan reflects on her own experience an shares about the need for hope in recovery:

He said, I should retire from life and avoid stress. I have come to call my psychiatrist’s pronouncement a “prognosis of doom”. He was condemning me to a life of handicaptivity wherein I was expected to take high dose neuroleptics, avoid stress, retire from life and I was not even 18 years old! My psychiatrist did not understand that boredom is stressful! A life devoid of meaning and purpose is stressful! A vegetative life is stressful. A life in handicaptivity, lived out within the confines of the human services landscape, where the only people who spend time with you, are people who are paid to be with you – that is stressful! Living on disability checks from the government is stressful.

When I was diagnosed I needed hopeful messages and role models. I needed to hear that there were pathways into a better future for me. I needed to connect with others who had been diagnosed with schizophrenia and who had recovered lives of meaning and purpose. I needed to find others who had completed college and who had jobs and who got married and had families, and had an apartment and a car.

Why is hope important to recovery? Because hope is the root of life’s energy. In order to recover, I had to turn away from the wish that psychiatrists could fix me. I had to turn away from the myth that psychiatric treatments could cure me. Instead, I had to mobilize all of the energy I had. I had to become an active partner in my recovery. I had to learn to work collaboratively with my treatment team and to draw strength from the wisdom of my peers. I had to begin striving for my goals, not when I was “all better”, but from day one. I had to believe that there was a life for me beyond the confines of the mental health system. That is hope. Hope is the tenacious pursuit of pathways to a better life, despite the odds. Without hope, there is no recovery.

Amen. Please go and read the whole post at her blog and spend some time poking around her posts.