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.

 

We’re not alone

Pat Deegan linked to a report on the state of treatment for schizophrenia for medicaid recipients.

Although there was some state-to-state variation in the findings, the study found that, while more than 90 percent of beneficiaries with schizophrenia or bipolar disorder received an evidence-based medication during the year, only 61 percent of those beneficiaries continuously refilled their prescriptions. Medication level monitoring was provided to about half of beneficiaries taking lithium or anticonvulsants, and screening for common side effects of antipsychotics was provided even less frequently. Only 30 percent of beneficiaries received any preventive physical health services. In some states, less than half of beneficiaries received psychosocial services. Overall, only 5 percent received all of the following: a continuous supply of evidence-based medications, medication level monitoring and screenings for medication side effects, and psychosocial services.

It sometimes seems that addiction treatment’s shortcomings get a lot of scrutiny (Our field definitely has a lot of room for improvement.), but I’ve always wondered how other medical treatment systems would fair under similar scrutiny. It’s sad to consider how much despair, stigma and secondary illness is generated by the failure of this system to consistently deliver treatment of the appropriate quality.

The medical model and recovery

Yesterday’s post about the disease model and recovery got me thinking about complaints that treatment is not medical enough. It’s worth noting that mental health treatment has a medical model and these patients believe it’s been harmful to them. What they want is something more like the holistic lifestyle approach, peer support and talk therapy that one might find in a good addiction treatment program.

This may help explain why addiction treatment guards itself from the encroaching medical model so tenaciously. (Worth noting that mental health system guards its model pretty vigorously too.)

Of course, none of this means that there aren’t lousy treatment providers or that there isn’t room for improvement in addiction treatment. Just that there is something worth protecting there and patients in the mental health system see it.

“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.

Depression, exercise, research and the media

A recent study on treating depression with exercise encouragement and advice has caused quite a stir. Check out the headlines.

But the paper itself says the following:

The main implication of our results is that advice and encouragement to increase physical activity is not an effective strategy for reducing symptoms of depression. Although our intervention increased physical activity, the increase may not have been sufficiently large to influence depression outcomes.

An article tackling the coverage of the study quotes the pay-walled editorial from the same issue of the medical journal:

Or, as the BMJ’s own editorial points out: “Patients in both groups therefore already received high quality care, and 57% were taking antidepressants at recruitment. It may have been difficult for the addition of a physical activity intervention to make an appreciable difference.” Further, about 25 per cent were already meeting Government exercise guidelines, so there may have been “little room for the intervention to make a difference”. The BMJ says that there has still been insufficient research.

I think that this is a very important point. It would be interesting to compare the following groups:

  1. exercise/no medication
  2. exercise/medication
  3. no exercise/medication
  4. no exercise/no medication

Further, look at the effect of exercise rather than the effect of advice and support. AND, follow them for at least a year. Then, if we establish exercise is helpful, we can look at whether it helps some but not others, what dose and frequency is needed, whether it’s helpful as an adjunct to other treatments, and THEN explore strategies for getting patients to exercise.

Another blog summarizes the study this way:

So, what did the study actually find? Two groups of depressed individuals were kept on their standard treatment plan and one of those groups was mildly encouraged to do more exercise through a few short telephone calls and a couple of face to face meetings. There was no minimum amount of exercise required for inclusion in the study, nor were any facilities for exercise provided. Over half of the participants were on anti-depressant medication that may provide some of the benefits of exercise alone, thus negating the benefit of exercise on self reported happiness.

At the four month follow up, exactly the same number of people in the treatment group had participated in physical activity as had done so in the control group (though it should be noted that there were seventeen more people in the control group than in the treatment group). Over the course of the study there was only a fifteen percent difference in the amount of exercise between the two groups! This study shows that the current exercise based treatment plan of telling people to exercise is not effective. It does not assess the outcomes of enabling people to exercise, or indeed of actually exercising.

“EXERCISE DOES NOT HELP DEPRESSION” is a good headline, but it’s not that simple and it’s not true.

Life long?

Logo from the radio program This American Life
Logo from the radio program This American Life (Photo credit: Wikipedia)

Yesterday morning I re-posted from an article on the positive finding publication bias in psychology journals and how these findings live on in spite of the fact that they are never replicated and rely on shakey analysis.

[audio: http://www.podtrac.com/pts/redirect.mp3/podcast.thisamericanlife.org/podcast/436.mp3%5D

Then, I’m driving to work and listen to last week’s episode of This American Life discussing psychopaths. It explored the case of a man in prison for 24 years who was presumably assessed to have antisocial personality disorder. (I say, “presumably” because they use the word psychopath throughout.)  It discussed the implication that this is assumed to be a life-long condition and that this diagnosis greatly diminished his likelihood of ever being paroled even though the man appears to have changed in very important and fundamental ways over the las 12 years.

It got me wondering about personality disorders. Where did this assumption that they are life-long, permanent conditions come from? In my experience, they are certainly long-term conditions. But, life-long? Over several decades? I don’t know. Is this assumption empirically based? Has anyone looked at these people over the course of 2, 3, 4 or 5 decades? If not, maybe we should speak with a little less certainty about these matters.

ADHD overdiagnosed

Symptoms of ADHD described by the literature
Symptoms of ADHD described by the literature (Photo credit: Wikipedia)

A recent study look at diagnostic reliability of ADHD:

RESULTS: Many mental health practitioners seem to proceed heuristically and base their decisions on unclear rules of thumb. The respondents more readily diagnosed ADHD when the case involved a male patient and presented prototypical symptoms, such as impulsiveness, motoric restlessness, and lack of concentration. They were, for instance, twice more likely to conclude ADHD with the boy version of the vignettes than with the girl vignettes. Interestingly, even the therapist’s gender played a role in the diagnostic as male doctors diagnosed ADHD more frequently than their female counterparts.

CONCLUSION: ADHD is over-diagnosed because doctors rely too much on their intuition and not on defined, established diagnostic criteria.

Identity and recovery

By Matthew Burpee via flickr

Healthland has a post on the relationship between identity and health:

When is a label a badge of honor, and when is it a harmful stigma of sickness or deviance? This question is of critical importance to public health…

But what does any of this have to do with health care? One of the best ways to change health behavior, it turns out, is to change a person’s self-identity. When a smoker begins to view herself as a nonsmoker or a teen sees binge-drinking as something “people like me” don’t do, behavior change is typically more lasting than if the person’s sense of identity is not invoked.

Research on everything from exercise, eating behavior and sexuality to political action and drug use suggests that having one’s identity wrapped up in a particular behavior is a crucial motivating factor to sustaining it. Once you see yourself as a runner, not running becomes far harder to do, for example.

There are also overwhelmingly negative issues associated with identity and labeling, however. The most obvious example would be a person whose identity and sense of self are tied directly to unhealthy behaviors — for example, viewing oneself as a “dope fiend” whose life purpose is to seek heroin or other drugs. If you believed that this identity was immutable or desirable — for example, if you use drugs as a way to rebel against conventional life — the possibility of change may be precluded before it is even truly considered.

She discusses the double-edged nature of identity a little further:

Once people see themselves as sick, they often limit themselves based on their view of what illness means.

In some cases, though, a “sick” identity can be liberating. For example, if a child learns that she has Asperger’s, which helps explains why social interaction is so difficult for her, she might stop blaming herself for being “weird” or “antisocial” and discover a whole community of similar folks. Similarly, people who suffer from depression, who find out that their miserable sense that everyone hates them or that nothing is any good is a treatable chemical state, can be empowered to seek positive change.

Whether a sick identity is a motivating power for change or a limiting stigma often depends on individual perception. Some people would rather be “sick” than “bad,” for example, and having a disease that explains otherwise undesirable behavior without placing blame will often allow the person to absolve his “weakness” and ask for help. In contrast, others view the idea of sickness as a cop out that denies a person agency and, therefore, dignity.

I’m convinced that identity is a critical element in making maintaining changes over the long term. I’m also convinced that whether the identity is helpful or harmful depends on what the identity offers. Does it offer hope? Community? Recovery? Or, does it offer despair and isolation?

The post is in response to TEDMED 2012. It will be very interesting to see videos of the talks as they are released.

a thousand pasts and no future

“Choose [your memories] carefully. Memories are all we end up with … You’ll have a thousand pasts and no future.” –The Secret Behind Their Eyes (film)

forget about the sunshine by whatmegsaid

A friend shared this On Point episode with me and made a connection between it and resentments.

This matter of appropriate, helpful, deliberate forgetting is very fascinating.

We’ve talked before about role of the brain’s memory circuits. I’ve also been very interested in the similarities between PTSD and addiction. Both are characterized by intrusive, powerful, multi-sensory, involuntary memories.

The On Point episode discusses that the capacity this helpful forgetting relies on executive function which we’ve discussed is impaired AND depleted.

So…addicts may have limited capacity for this kind of helpful forgetting. Maybe this explains and supports 12 step recovery’s emphasis on letting go of resentments.

Further, the idea in the quote above may help explain the emphasis on gratitude and the power of gratitude lists. Aren’t gratitude lists really an attempt to choose what to remember?