A Reflection on “Unshrunk: A Story of Psychiatric Treatment Resistance”

Laura Delano and I met sometime around 2012 at a Mad in America film festival. I was immediately drawn to her fierce intelligence and, as I got to learn more about her, was struck by some of the interesting similarities and contrasts between our lives. We had both been academically successful teens whose drive and competence had been rewarded with admission to Harvard. We had both struggled from our early teens with somewhat similar existential worries that centered on the dilemma of being a certain kind of girl in a culture that was wary of our more assertive traits; achievement was celebrated but with an ambivalence that left us confused, alienated, and angry.

Years later, we both happened upon Anatomy of an Epidemic shortly after its publication. We both ended up writing to Robert Whitaker and posting blogs on Mad in America. In time, Laura and I were each asked to speak at conferences in the US and abroad. But Laura is 30 years my junior and approached the book from the perspective of someone whose early struggles had led to the years of psychiatric treatment that are the subject of her memoir. I was a psychiatrist of the generation of many of those who had treated her.

Laura’s struggles began in the mid-1990s, which was the zenith of the application of the “broken brain paradigm” to children. Being older, I escaped that, but my sojourn into psychiatry was related to my own struggles; as an unhappy medical student, I discovered psychoanalysis and thought for a while that it would help me to make sense of my problems. Despite our differing paths, our experiences led us both to develop deep critiques of my profession.

Laura and I remain friends. We once traveled together to the bookstore in Middlebury, Vermont where she first happened upon Anatomy. I was thus eager to read her book, Unshrunk: A Story of Psychiatric Treatment Resistance, and while I expected to find it interesting, I was not prepared for the powerful effect it has had on me. Whereas there was a time in my life when blogs just seemed to flow out of me, I have experienced much greater difficulty writing in recent years. Yet, to honor my friend, I would like to share some reflections on her book.

In 1996, when Laura met her first psychiatrist, she was encountering a profession that had undergone radical change over the previous decade. Many new drugs came to the market during that time. When I was a psychiatric resident in the early 1980s, psychopharmacotherapy was more conservative. Polypharmacy was generally discouraged and drugs were considered indicated only in more extreme cases. Even in the field in which I worked—treating people who had been diagnosed with schizophrenia—where drugs were considered essential, the most respected psychiatrists in the US were urging us to use the lowest doses possible.

That changed as newer, purportedly safer, drugs were approved and intensely promoted. Living through that shift in perspective and observing the disjunction between the academic and promotional literatures is what set me down the path to critical psychiatry.

Laura was diagnosed with bipolar disorder. Along with the proliferation of new drugs, there was a proliferation of new diagnoses. While previously bipolar disorder, formerly called manic-depressive illness, was applied to a narrow group of people who experience dramatic extremes of mood and energy level interspersed with periods of fairly normal function, it was now applied to a much broader range of people.

Multiple types of bipolar disorder were proposed: bipolar II disorder, rapid-cycling bipolar disorder, and childhood-onset bipolar disorder. I still remember the first time, as a medical student, I encountered a person who was experiencing mania. It did not require any sort of training to observe that this person was speaking so fast, with thoughts flitting from one topic to another, that I could not make sense of what she was saying.

However, years later as an experienced psychiatrist, I never grasped rapid-cycling bipolar disorder or bipolar II disorder. Humans have moods that fluctuate. Discerning between the vicissitudes of mood that are considered “normal” versus the alterations of mood that might warrant a diagnosis with one of these newer versions of bipolar disorder was always hard for me. I am not a child psychiatrist but I remember reading about the criteria for assigning a child a diagnosis of bipolar disorder when my own children were young and wondering how one distinguishes between the intensities of typical childhood anger and frustration and this purported “disorder.”

My point here is about how the psychiatric profession has come to conceptualize human suffering. Laura talks about psychiatry as a cult. While I would argue with this, I do think psychiatry has provided a paradigm that our society has adopted widely. There are benefits to this paradigm but there are also problems and consequences that are worthy of critical examination. Laura’s memoir stands as a testament to those negative consequences.

One compelling theme of her book that I have not seen highlighted in other reviews is Laura’s description of how adopting a medical formulation of her problems led to her loss of agency. She was a “good” patient. She accepted the diagnosis of bipolar disorder and (mostly) adhered to the recommendations of her psychiatrists. She was a product of the era of the “broken brain” and with this came the notion that, due to forces outside of her control, her brain was not functioning properly and that manifested as the problems she was experiencing.

For Laura, that meant that she was waiting for healing to come from an external source. As Laura describes in her book, there was one psychiatrist who tried to challenge this but she was not ready to hear it. She began to find her agency through her participation in AA and over time it continued to grow. Is it fair to blame the entire psychiatric profession when Laura herself was complicit in what happened to her?

In my experience, the intense promotion of the “broken brain” model has become so entrenched in our society that it is hard to consider a counter narrative. It was offered in part to reduce stigma and to relieve people of blame and shame. But that was done, particularly in the 1990s, with a confident triumphalism about the “Decade of the Brain.” I suggest there is another path and this is one where in which the stance of uncertainty and humility is embedded within the profession.

This is one reason why I am drawn to approaches such as Open Dialogue where multiple paradigms—including that of the person seeking care—are not only considered but valued. This is also why I, along with Laura, am drawn to Joanna Moncrieff’s drug-centered approach. It allows one to talk about pharmacotherapies as ways of ameliorating some aspects of people’s experiences without reifying the psychiatric diagnoses whose presence are often (mis)conceived as forming the bases on which the effects of such treatments rest.

I have known a number of psychiatrists who respond to Laura’s story and those of others like her by saying she was misdiagnosed. That suggests that some wise, all-knowing psychiatrist would have made the “correct” diagnosis. Misdiagnosis as the fallback explanation when things do not go as expected constitutes a retrospective correction that assumes there is a way to “get it right” from the beginning. Diagnosis should always be considered a hypothesis, a provisional way of thinking about a person’s problems, a guide that suggests—but does not dictate—potentially effective treatment.

It is hard to have these conversations without also conveying to a person they “have” something you have positively identified. The only way to mitigate this is to be very clear from the outset that psychiatric diagnoses are labels that are intended to serve certain purposes. They might point the way to helpful treatments but fundamentally they are heuristic constructs rather than definitive descriptions and understandings of clinical problems. In my experience, the act of providing a diagnosis is so influential on a person’s sense of self that its limitations need to be repeated again and again and again.

We observe this in Laura’s story where, in retrospect, some of the psychiatrists claimed (and even documented at the time) their diagnostic uncertainty. Both things can be true: psychiatrists might have mentioned this and Laura did not hear it. This is not in any way intended to blame Laura; it is meant to emphasize how potent diagnostic labels can be and how important it is repeatedly to explore their meanings and effects on the people to whom they have been assigned.

Laura stopped her medications and learned at least two things: they can be hard to stop and there is limited knowledge about this within the medical establishment. Millions of people turn to the internet to find answers because their psychiatrists do not acknowledge the validity of their experiences withdrawing from these drugs; Laura is not an outlier. After many years of advocacy, there are now guidelines for tapering drug doses in the UK. As Laura writes, this topic remains largely unrecognized in the US. Why?

In a New York Times article detailing the work Laura and her husband, Cooper Davis, are doing with Inner Compass, Allen Frances, a renowned American psychiatrist, is quoted:

What makes tremendous sense for Laura and millions of people who are over-diagnosed and over-treated makes no sense at all for people who can’t get medicine. … Laura does not generalize to the person with chronic mental illness and has a clear chance of ending up homeless or in the hospital. … Those people don’t wind up looking like Laura when they are taken off medication.

I believe there are people who do better when taking medications. I still work as a psychiatrist and I prescribe psychotropic drugs. But Allen Frances concedes there are millions like Laura. Where Frances and I part ways is that I do not think we can easily distinguish between those who benefit from them and those who don’t. First of all, the alarmism embedded in his statement risks halting the discussion; most people who stop taking psychiatric drugs do not end up homeless or in the hospital.

Also, drug tapering does not need to be synonymous with drug discontinuation. In my experience, approaching this using a harm reduction model can work well—one tries to minimize the risks of drug therapy by minimizing doses but not necessarily discontinuing treatment. Laura discusses the hyperbolic shape of drug-receptor binding curves, which explains why the final increments of drug discontinuation tend to be the most difficult. I have worked with people who get to low doses (sometimes, likely erroneously, considered “subtherapeutic”); on such doses adverse effects are greatly diminished.

Continuation of drug therapies at low doses might be warranted for a host of reasons, not least of which is the ongoing uncertainty of the extent to which it reduces relapse risk. But this is a choice made best in partnership between the individual taking and the person prescribing the drug where the knowns and unknowns are frankly acknowledged.

The psychiatric profession needs to reckon with the consequences of its broadened applications of diagnostic categories and the resulting expanded use of drug therapies. We need to reckon with the fact that alarms were raised—and then largely ignored—at least thirty years ago about the problems that occur as a consequence of drug discontinuation. Mistakes were made. By us.

We live in a time when expertise is devalued and in which scientific methods of inquiry are viewed with suspicion. I continue to uphold the importance of scientific investigation as a process whose greatest strength is recognition of the provisional nature of its formulations. When socially powerful professional institutions do not acknowledge their manifest limitations and seek to remedy their evident failures—thereby violating the fundamental spirit of scientific methodology—we contribute to the erosion of public confidence in expert opinion.