“Disease” and recovery

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

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.

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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 #1: Hope 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 #2: Arriving 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 #3: Finding 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 #4: Connecting 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 #5: Dealing with their relationships. All participants expressed the importance of healing and/or distancing themselves from unhealthy relationships and cultivating healthy ones.

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.